Thank you for joining me on this journey with Myeloma.
Information
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Diary
Thank you for reading this, please come back soon.
9th. January 2009 - We had a very nice day in Leicester last Sunday with Stuart an Sarah. Our church has an annual curry night once a year so on Tuesday we joined about twenty other people at an Indian restaurant for a meal. On Wednesday we went to the regular monthly meeting of the retirement fellowship and enjoyed a very good audio / visual presentation. Thursday was spent in town seeing my haematology consultant. She was pleased with my blood results which show my myeloma as being on a plateau at the moment, although we will not get my paraprotein level for another ten days or so. To do all that in a week shows that my energy is improving which is good although I still have to put up with my usual problems.
26th. December 2008 - That's probably been my best week since my transplant five months ago. I've only had one vomiting episode and only needed oxygen on a couple of occasions. I've had the usual cold chills and hot sweats but not so many as usual. My worst problem remains my nerve pain. I've tried the new cream on my hands but so far it has not improved. We went out for a nice meal on Wednesday after the Christingle service at church. Presents were opened on Christmas Day after we got back from church and we're both pleased with what we received. Simon had a successful stem cell harvest over three days ending on Christmas Eve. We're now hoping for the transplant to take place early in the New Year. May I now wish you all a peaceful and prosperous New Year.
19th. December 2008 - On Wednesday we went to Lakeside shopping centre and I was able to buy a few things that I needed. It wasn't too busy considering Christmas is next week. On Thursday we went over to Kent to see Simon and family and take them all out for a lovely pub lunch. It was really nice to see my two grandchildren growing up. Simon is getting ready for his stem cell harvest next week. I've managed to go out twice this week so I must be feeling a little better in myself. We've had lots of Christmas Cards so thank you to everyone who has sent one. I've still got my usual problems of nerve pains, hot and cold sessions and nausea. May I wish everyone a peaceful and festive Christmas.
30th. January 2009
For some time now I've been frustrated by this site as everytime I post a new entry the formatting of the previous entry has been rearranged and I have to spend time sorting it out. For that reason I am continuing my blog at:
I've been trying this site out over the past week and it seems much more stable.
23rd. January 2009 - Last Saturday was not a good day as I had two episodes of projectile vomiting and felt poorly all day but I've improved since then. Yesterday afternoon we were at the National Amyloidosis Centre where I had an ECG and an echocardiogram. We've been back there again this afternoon and I had an amyloid body scan. We then saw the doctor who said that preliminary results show that I do not have amyloidosis which is good news for a change. Simon is expecting to be admitted on Sunday for his transplant.
16th. January 2009 - That's been a quiet week with no hospital visits although I've got two next week at the National Amyloidosis Centre at the Royal Free Hospital for various tests. I had one nasty vomiting episode this week as well as all my usual problems. My feet have been hurting more than they usually do though.
9th. January 2009 - We had a very nice day in Leicester last Sunday with Stuart an Sarah. Our church has an annual curry night once a year so on Tuesday we joined about twenty other people at an Indian restaurant for a meal. On Wednesday we went to the regular monthly meeting of the retirement fellowship and enjoyed a very good audio / visual presentation. Thursday was spent in town seeing my haematology consultant. She was pleased with my blood results which show my myeloma as being on a plateau at the moment, although we will not get my paraprotein level for another ten days or so. To do all that in a week shows that my energy is improving which is good although I still have to put up with my usual problems.
2nd. January 2009 - I've had more cold chills this week than usual, maybe it's the weather. They are very unpleasant as my core temperature drops by about one and a half degrees centigrade. Even with the heating cranked up it takes a while for them to pass. Thankfully though I've had no vomiting this week. We went out for a nice pub lunch on Wednesday and on this Sunday we are going to see my younger son Stuart and his wife Sarah in Leicester.
2009
26th. December 2008 - That's probably been my best week since my transplant five months ago. I've only had one vomiting episode and only needed oxygen on a couple of occasions. I've had the usual cold chills and hot sweats but not so many as usual. My worst problem remains my nerve pain. I've tried the new cream on my hands but so far it has not improved. We went out for a nice meal on Wednesday after the Christingle service at church. Presents were opened on Christmas Day after we got back from church and we're both pleased with what we received. Simon had a successful stem cell harvest over three days ending on Christmas Eve. We're now hoping for the transplant to take place early in the New Year. May I now wish you all a peaceful and prosperous New Year.
19th. December 2008 - On Wednesday we went to Lakeside shopping centre and I was able to buy a few things that I needed. It wasn't too busy considering Christmas is next week. On Thursday we went over to Kent to see Simon and family and take them all out for a lovely pub lunch. It was really nice to see my two grandchildren growing up. Simon is getting ready for his stem cell harvest next week. I've managed to go out twice this week so I must be feeling a little better in myself. We've had lots of Christmas Cards so thank you to everyone who has sent one. I've still got my usual problems of nerve pains, hot and cold sessions and nausea. May I wish everyone a peaceful and festive Christmas.
12th. December 2008 - Last Saturday evening Elizabeth and I went out for a celebratory meal. We've been together now for twenty four years and we've had some wonderful times together. I've had a better week with only one vomiting session. My main problems remain as extreme lethargy and severe nerve pains in my hands and feet. I saw my consultant haematologist in out patients on Thursday and mentioned this to her. She has given me a book and some fact sheets on fatigue and has suggested some topical preparations for my hands and feet. She also wonders if I have another condition that some myeloma patients have called amyloidosis. She is going to refer me to another consultant regarding this. She is also referring me for physiotherapy to see if this can help me. I'm not liking the cold weather too much and will be glad for warmer days.
5th. December 2008 - I've only had one vomiting session this week which has been an improvement although my nerve pains have been getting worse. I've got an out-patient appointment in town next week so I'll mention it then. We went to our regular monthly meeting of the Retirement Fellowship on Wednesday and had a pub lunch out as well. My energy levels are still extremely low although my appetite has improved a bit.
5th. December 2008 - I've only had one vomiting session this week which has been an improvement although my nerve pains have been getting worse. I've got an out-patient appointment in town next week so I'll mention it then. We went to our regular monthly meeting of the Retirement Fellowship on Wednesday and had a pub lunch out as well. My energy levels are still extremely low although my appetite has improved a bit.
ps. I've just finished reading a fantastic book. It is called The Shack and I thoroughly recommend it. Further info at: http://theshackbook.com/
28th. November 2008 - A quiet week thankfully as I've still not been feeling too wonderful. I've vomited several times and have had the usual hot sweats and cold chills. The nerve pains in my feet have still been rather bad despite having morphine twice a day. We managed to have a pub lunch out on Wednesday which was nice. It's really encouraging to see the hit counter reach 2000. Our rector came round this afternoon and spent an hour with us which was a helpful time. Simon had a small operation yesterday to create a point in his arm which can be used as long term access for his dialysis.
21st. November 2008 - I forgot to mention last week that, on the Tuesday (11th.), it was the third anniversary of my diagnosis. This week I've not been feeling too good. Nothing specific though. I think that the last three years have seen a real change in my perception of emotions and I am now far more in touch with mine. I've had three or four vomiting sessions this week and have needed oxygen for a period of time on most days. We did manage to get out on Tuesday though. It was the annual lunch of the bowls section of the Retirement Fellowship. I'm not enjoying going out much though now the colder weather has arrived. The nerve pains in my feet have been more troublesome as well.
14th. November 2008 - The week started fairly well for me. On Tuesday we went to see Simon and family. It was good to see my grandchildren. Simon is hoping to have a stem cell transplant in January. On Wednesday afternoon I started to have a temperature. My GP does not open on Thursday so I would to wait till Friday to get some antibiotics. I could have gone to A & E but was afraid they would admit me. So, I called the emergency doctor service and within two hours a very nice doctor arrived. He asked me how I was and I explained everything and said I thought I would need antibiotics. He agreed and asked what I had been on before. I told him of a combination of drugs that I had been on before and which worked well. He agreed to prescribe those but didn't have any with him so he gave me some he had to start me off. I agreed to change the prescription first thing in the morning. The rest of the week I have been feeling generally unwell with nausea and breathlessness and very lethargic. My temperature has come down though so I hope it means I am getting better.
8th. November 2008 - Last Saturday night I had one of my worst falls ever. I banged my head against a chest of drawers as I went down lifting up a large flap of skin at the top of my nose. Blood everywhere. Elizabeth managed to stop the bleeding and put a temporary dressing on it and then on Sunday morning I took myself to A & E to get it properly cleaned and sorted out. We went to the Retirement Fellowships regular meeting on Wednesday and had a very interesting talk by a Pearly Queen. I had my flu jab on Thursday as my haematology doctor had told me I should have one. I'm still extremely lethargic with even the smallest effort to do something leaving me worn out. I also had two nasty vomiting episodes in the week. Elizabeth took me to Ilford yesterday as I needed to shop for some winter clothes. It was great whizzing about on my baby scooter.
1st. November 2008 - We saw one of my haematology doctors on Thursday at UCH and she had my bone marrow results and together with blood results for Thursday was pleased at my overall progress. It's where she would expect a patient to be three months after transplant. She has also stopped my monthly I V infusion and has put me on a tablet equivalent instead. Tablets are less likely to give me any side effect problems with prolonged usage. I've needed my home oxygen supply on three or four occasions over the week when I've got a bit breathless. It's very reassuring to have it here. Apart from the usual complaints the rest of the week has been quiet.
25th. October 2008 - A generally quiet week. We had a day out on Wednesday by coach with the Retirement Fellowship. We went to Cite Europe, a large shopping centre between Calais and Boulogne. It was a gorgeous sunny day and we had a smooth sea crossing each way. It was a long day for me but I coped. I had my new scooter with me and that worked well. I went to my local hospital yesterday for my regular monthly drip. I've had my dose of usual symptoms including a couple of episodes of vomiting but otherwise have not felt too bad apart from being very lethargic which seems to be a bit more pronounced at the moment. Next week we've got one trip in to town to see my haematology team.
18th. October 2008 - We had a very sad start to the week. My younger son, Stuart, and his wife were expecting their first child but on Monday Sarah had a miscarriage of a twelve week old boy. The doctors could see no reason for this to happen and said that she should have no problems getting pregnant again. On Tuesday we went to UCH where I had a bone marrow aspiration and trephine done on my pelvis. A very nice lady doctor performed it and it was one of my better bone marrows as it didn't hurt as much as some of the others. Thursday morning we went to The National in Queen Square to see my neurology consultant. She was pleased with the progress in my feet but was sorry that my hands hadn't really improved. She has discharged me because she doesn't think there is any more for her to do. However on her physical examination of me she found I had got oral thrush so I'm on medication for that now. Healthwise I think I'm nearly back to normal now.
11th. October 2008 - Thankfully my health has started to improve during the week and I'm almost back to normal. We went out for a pub lunch on Wednesday and went shopping at Lakeside on Thursday. We took my new scooter and it was good to give it a try out. I'm still having the occasional hot sweat or cold chill and am still getting nerve pains in my hands and feet but the regular morphine is quite good at controlling the pain. Having a transplant really takes it out of you as I'm nearly always tired and am certainly sleeping more. I'm having a bone marrow aspiration next Tuesday (I'm not looking forward to that) and I'm being reviewed by my neurology team on Thursday, so it's two trips in to town next week. This afternoon I'm going to treat myself to a manicure and pedicure.
4th. October 2008 - It's still not been a very good week for me health wise. I've still got a wheezy chest and get out of breath very easily and I've also caught a cold and have got laryngitis. However I've now got an oxygen supply at home should I have an acute episode of difficulty in breathing. We did manage to get out a couple of times. On Tuesday we went to Romford and I bought myself a baby electric scooter to replace the wheelchair when we go out anywhere. It fits very easily into the boot of the car. On Wednesday we went out for lunch and then went to the regular monthly meeting of the Retirement Fellowship. I've also still been having the occasional hot sweats and cold chills and periods of nausea. I don't think they will ever go away. I've got a fairly quiet week coming up so hope I will get myself better.
27th. September 2008 - Well I've managed to stay out of hospital this week apart from a check up at UCH on Tuesday and my regular monthly drip on Friday. They were quite pleased with my progress at UCH despite my chest infections. My blood levels were good. It was good to see Leicester City win at Orient last Saturday. I think I'm coming down with a bit of a cold at the moment - hope that is all it is and it will pass quickly. Simon is still having his dialysis and yesterday had a small operation on his arm to give them easy access to a vein over a longer period for his dialysis.
19th. September 2008 - Last Saturday afternoon I had an acute episode of shortness of breath. Very frightening. Elizabeth called 999 and within moments a paramedic arrived with some oxygen. After I had breathed that for a few moments I started to feel a lot better so declined another trip to A & E. On Monday morning the same thing happened but this time I went to A & E and was admitted for treatment. I came out on Thursday. They have given me some stronger antibiotics so I'm hoping they have the desired effect. I'm not feeling too bad at the moment. I saw my GP today and she is going to arrange for me to have a supply of oxygen at home. That will be reassuring. Tomorrow I'm meeting Simon and we are going to watch Leicester City (our team) play at Leyton Orient. I'm looking forward to it. The highlight of the week was the baptism of Abigail Hannah (my first granddaughter). She behaved impeccably and it was good to see all the family together. My other son, Stuart, and his wife are expecting their first child. Sadly I heard that a friend from the Retirement Fellowship has just been diagnosed with cancer.
13th. September 2008 - Wow, what a week! When I was doing last weeks blog I had been feeling a little under the weather for a couple of days but on the Saturday afternoon I had real problems. I suddenly had difficulty in getting my breath to the extent that I was feeling quite frightened. I knew I needed oxygen but was getting nothing in. Elizabeth called 999 and within a couple of minutes the ambulance had arrived and I was put on oxygen - what a relief. I was taken to A & E at my local hospital and was eventually admitted with an acute, severe chest infection. I was given antibiotics and other medication and soon started to improve. By Tuesday I was ready to come home but they wanted me to stay another night at least. I had some bloods taken on Wednesday morning and was told that if the results were good enough they would discharge me. Thankfully they were and so Elizabeth came and collected me. I'm still a bit wheezy but slowly continuing to improve. The rest of the week has passed without any significant events happening.
6th. September 2008 - I managed to get to church on Sunday for the first time in at least six weeks. Everyone was very pleased to see me. I saw one of my doctors in town on Tuesday (after having a blood test) and she was pleased with the blood results and the way I am progressing. On Wednesday and Thursday I had nasty vomiting sessions and I've also been getting increased nerve pain in my hands and feet. I'm still getting cold chills and hot sweats at times and my energy levels are getting no better. I'm so grateful to have Elizabeth around as she is such a big help to me.
30th. August 2008 - I had a nasty vomiting session last Sunday which was most unpleasant. On Tuesday I took myself down the road on my scooter and had a manicure and pedicure which was much needed. Friday was spent at my local hospital having my monthly I. V. drip. I've had a few hot sweats this week otherwise the week has gone quite well. It's still takes a real effort to do anything as all I want to do most of the time is just to lie down and rest or sleep. Next week I've got a review with my haematology team at UCH on Tuesday. It'll be interesting to see what they think about my slow progress. My swollen ankles and feet are now much improved. Simon continues his dialysis three times a week and seems to be coping quite well.
23rd. August 2008 - Thankfully that was a very quiet week. All I did was go in to town on Wednesday to UCH to be followed up by the transplant team. I had bloods taken (took two attempts to find a vein as they are getting smaller and deeper). I complained of the fact that I was suffering from swollen feet and ankles which is exacerbating the pain in my feet from my neuropathy. The doctor wrote me up for two types of diuretic (excretes excess fluid out of your body) but told me to phone him on Thursday when he will have my blood results which will dictate which diuretic to take. It was so nice to get back home again and put my feet up after journeying by tube and taxi in to town. I phoned the doctor on Thursday and he said my blood results were looking very good and told me which diuretic to take. After only three days on them there are already signs of improvement. The rest of the week I've spent most of my time by not getting up till midday and then spending most of the rest of each day with my feet up on the settee. This transplant thing does take it out of you and I've been told it can take from three to six months to get any energy back. I'm on the diuretics for another two days and then I've to phone the doctor again to report on progress. I've had so many emails from people wishing me well it's been impossible to reply to them all individually but thank you all very much. I am so grateful to Elizabeth for coping with all the extra work involved in looking after me whilst I am like this.
28th. November 2008 - A quiet week thankfully as I've still not been feeling too wonderful. I've vomited several times and have had the usual hot sweats and cold chills. The nerve pains in my feet have still been rather bad despite having morphine twice a day. We managed to have a pub lunch out on Wednesday which was nice. It's really encouraging to see the hit counter reach 2000. Our rector came round this afternoon and spent an hour with us which was a helpful time. Simon had a small operation yesterday to create a point in his arm which can be used as long term access for his dialysis.
21st. November 2008 - I forgot to mention last week that, on the Tuesday (11th.), it was the third anniversary of my diagnosis. This week I've not been feeling too good. Nothing specific though. I think that the last three years have seen a real change in my perception of emotions and I am now far more in touch with mine. I've had three or four vomiting sessions this week and have needed oxygen for a period of time on most days. We did manage to get out on Tuesday though. It was the annual lunch of the bowls section of the Retirement Fellowship. I'm not enjoying going out much though now the colder weather has arrived. The nerve pains in my feet have been more troublesome as well.
14th. November 2008 - The week started fairly well for me. On Tuesday we went to see Simon and family. It was good to see my grandchildren. Simon is hoping to have a stem cell transplant in January. On Wednesday afternoon I started to have a temperature. My GP does not open on Thursday so I would to wait till Friday to get some antibiotics. I could have gone to A & E but was afraid they would admit me. So, I called the emergency doctor service and within two hours a very nice doctor arrived. He asked me how I was and I explained everything and said I thought I would need antibiotics. He agreed and asked what I had been on before. I told him of a combination of drugs that I had been on before and which worked well. He agreed to prescribe those but didn't have any with him so he gave me some he had to start me off. I agreed to change the prescription first thing in the morning. The rest of the week I have been feeling generally unwell with nausea and breathlessness and very lethargic. My temperature has come down though so I hope it means I am getting better.
8th. November 2008 - Last Saturday night I had one of my worst falls ever. I banged my head against a chest of drawers as I went down lifting up a large flap of skin at the top of my nose. Blood everywhere. Elizabeth managed to stop the bleeding and put a temporary dressing on it and then on Sunday morning I took myself to A & E to get it properly cleaned and sorted out. We went to the Retirement Fellowships regular meeting on Wednesday and had a very interesting talk by a Pearly Queen. I had my flu jab on Thursday as my haematology doctor had told me I should have one. I'm still extremely lethargic with even the smallest effort to do something leaving me worn out. I also had two nasty vomiting episodes in the week. Elizabeth took me to Ilford yesterday as I needed to shop for some winter clothes. It was great whizzing about on my baby scooter.
1st. November 2008 - We saw one of my haematology doctors on Thursday at UCH and she had my bone marrow results and together with blood results for Thursday was pleased at my overall progress. It's where she would expect a patient to be three months after transplant. She has also stopped my monthly I V infusion and has put me on a tablet equivalent instead. Tablets are less likely to give me any side effect problems with prolonged usage. I've needed my home oxygen supply on three or four occasions over the week when I've got a bit breathless. It's very reassuring to have it here. Apart from the usual complaints the rest of the week has been quiet.
25th. October 2008 - A generally quiet week. We had a day out on Wednesday by coach with the Retirement Fellowship. We went to Cite Europe, a large shopping centre between Calais and Boulogne. It was a gorgeous sunny day and we had a smooth sea crossing each way. It was a long day for me but I coped. I had my new scooter with me and that worked well. I went to my local hospital yesterday for my regular monthly drip. I've had my dose of usual symptoms including a couple of episodes of vomiting but otherwise have not felt too bad apart from being very lethargic which seems to be a bit more pronounced at the moment. Next week we've got one trip in to town to see my haematology team.
18th. October 2008 - We had a very sad start to the week. My younger son, Stuart, and his wife were expecting their first child but on Monday Sarah had a miscarriage of a twelve week old boy. The doctors could see no reason for this to happen and said that she should have no problems getting pregnant again. On Tuesday we went to UCH where I had a bone marrow aspiration and trephine done on my pelvis. A very nice lady doctor performed it and it was one of my better bone marrows as it didn't hurt as much as some of the others. Thursday morning we went to The National in Queen Square to see my neurology consultant. She was pleased with the progress in my feet but was sorry that my hands hadn't really improved. She has discharged me because she doesn't think there is any more for her to do. However on her physical examination of me she found I had got oral thrush so I'm on medication for that now. Healthwise I think I'm nearly back to normal now.
11th. October 2008 - Thankfully my health has started to improve during the week and I'm almost back to normal. We went out for a pub lunch on Wednesday and went shopping at Lakeside on Thursday. We took my new scooter and it was good to give it a try out. I'm still having the occasional hot sweat or cold chill and am still getting nerve pains in my hands and feet but the regular morphine is quite good at controlling the pain. Having a transplant really takes it out of you as I'm nearly always tired and am certainly sleeping more. I'm having a bone marrow aspiration next Tuesday (I'm not looking forward to that) and I'm being reviewed by my neurology team on Thursday, so it's two trips in to town next week. This afternoon I'm going to treat myself to a manicure and pedicure.
4th. October 2008 - It's still not been a very good week for me health wise. I've still got a wheezy chest and get out of breath very easily and I've also caught a cold and have got laryngitis. However I've now got an oxygen supply at home should I have an acute episode of difficulty in breathing. We did manage to get out a couple of times. On Tuesday we went to Romford and I bought myself a baby electric scooter to replace the wheelchair when we go out anywhere. It fits very easily into the boot of the car. On Wednesday we went out for lunch and then went to the regular monthly meeting of the Retirement Fellowship. I've also still been having the occasional hot sweats and cold chills and periods of nausea. I don't think they will ever go away. I've got a fairly quiet week coming up so hope I will get myself better.
27th. September 2008 - Well I've managed to stay out of hospital this week apart from a check up at UCH on Tuesday and my regular monthly drip on Friday. They were quite pleased with my progress at UCH despite my chest infections. My blood levels were good. It was good to see Leicester City win at Orient last Saturday. I think I'm coming down with a bit of a cold at the moment - hope that is all it is and it will pass quickly. Simon is still having his dialysis and yesterday had a small operation on his arm to give them easy access to a vein over a longer period for his dialysis.
19th. September 2008 - Last Saturday afternoon I had an acute episode of shortness of breath. Very frightening. Elizabeth called 999 and within moments a paramedic arrived with some oxygen. After I had breathed that for a few moments I started to feel a lot better so declined another trip to A & E. On Monday morning the same thing happened but this time I went to A & E and was admitted for treatment. I came out on Thursday. They have given me some stronger antibiotics so I'm hoping they have the desired effect. I'm not feeling too bad at the moment. I saw my GP today and she is going to arrange for me to have a supply of oxygen at home. That will be reassuring. Tomorrow I'm meeting Simon and we are going to watch Leicester City (our team) play at Leyton Orient. I'm looking forward to it. The highlight of the week was the baptism of Abigail Hannah (my first granddaughter). She behaved impeccably and it was good to see all the family together. My other son, Stuart, and his wife are expecting their first child. Sadly I heard that a friend from the Retirement Fellowship has just been diagnosed with cancer.
13th. September 2008 - Wow, what a week! When I was doing last weeks blog I had been feeling a little under the weather for a couple of days but on the Saturday afternoon I had real problems. I suddenly had difficulty in getting my breath to the extent that I was feeling quite frightened. I knew I needed oxygen but was getting nothing in. Elizabeth called 999 and within a couple of minutes the ambulance had arrived and I was put on oxygen - what a relief. I was taken to A & E at my local hospital and was eventually admitted with an acute, severe chest infection. I was given antibiotics and other medication and soon started to improve. By Tuesday I was ready to come home but they wanted me to stay another night at least. I had some bloods taken on Wednesday morning and was told that if the results were good enough they would discharge me. Thankfully they were and so Elizabeth came and collected me. I'm still a bit wheezy but slowly continuing to improve. The rest of the week has passed without any significant events happening.
6th. September 2008 - I managed to get to church on Sunday for the first time in at least six weeks. Everyone was very pleased to see me. I saw one of my doctors in town on Tuesday (after having a blood test) and she was pleased with the blood results and the way I am progressing. On Wednesday and Thursday I had nasty vomiting sessions and I've also been getting increased nerve pain in my hands and feet. I'm still getting cold chills and hot sweats at times and my energy levels are getting no better. I'm so grateful to have Elizabeth around as she is such a big help to me.
30th. August 2008 - I had a nasty vomiting session last Sunday which was most unpleasant. On Tuesday I took myself down the road on my scooter and had a manicure and pedicure which was much needed. Friday was spent at my local hospital having my monthly I. V. drip. I've had a few hot sweats this week otherwise the week has gone quite well. It's still takes a real effort to do anything as all I want to do most of the time is just to lie down and rest or sleep. Next week I've got a review with my haematology team at UCH on Tuesday. It'll be interesting to see what they think about my slow progress. My swollen ankles and feet are now much improved. Simon continues his dialysis three times a week and seems to be coping quite well.
23rd. August 2008 - Thankfully that was a very quiet week. All I did was go in to town on Wednesday to UCH to be followed up by the transplant team. I had bloods taken (took two attempts to find a vein as they are getting smaller and deeper). I complained of the fact that I was suffering from swollen feet and ankles which is exacerbating the pain in my feet from my neuropathy. The doctor wrote me up for two types of diuretic (excretes excess fluid out of your body) but told me to phone him on Thursday when he will have my blood results which will dictate which diuretic to take. It was so nice to get back home again and put my feet up after journeying by tube and taxi in to town. I phoned the doctor on Thursday and he said my blood results were looking very good and told me which diuretic to take. After only three days on them there are already signs of improvement. The rest of the week I've spent most of my time by not getting up till midday and then spending most of the rest of each day with my feet up on the settee. This transplant thing does take it out of you and I've been told it can take from three to six months to get any energy back. I'm on the diuretics for another two days and then I've to phone the doctor again to report on progress. I've had so many emails from people wishing me well it's been impossible to reply to them all individually but thank you all very much. I am so grateful to Elizabeth for coping with all the extra work involved in looking after me whilst I am like this.
16th. August 2008 - I was right last Saturday. As soon as they saw me at UCH I was admitted, then I had a rough few days with my temperature soaring and also diarrhoea and vomiting (D & V). I was given loads of intravenous antibiotics and slowly started to improve. I was discharged on Thursday afternoon still with some oral antibiotics to take in addition to my regular medication. Yesterday was a quiet day with me not doing very much but today was even quieter as I had no energy to get up and have spent most of the day dozing. I had a session of D & V around lunchtime (not nice). Thank you to everyone who has sent me a get well/thinking of you card, they are much appreciated.
9th. August 2008 - The last couple of days I've been feeling rotten with my temperature going up and also with episodes of vomiting. Elizabeth rang the emergency on call number this morning and they want me to go to UCH probably for admission, so if that is so, there will be no more blog at the moment.
7th. August 2008 - (Thursday) Hello, it's me, I'm back again. Goodness that has been a rough couple of weeks. When we went over to see the doctor on Tuesday 29th. July I had started to run a temperature and also was starting mucositis. (This is inflammation of the lining of the mouth and gullet caused by the chemo killing off these cells. It does not just kill cancer cells). They decided to admit me to the main ward there and then where I had a large room to myself. Since then I've been eating very little (sore mouth) and spending most of my time in bed listening to the radio or sleeping. They started me on high dose antibiotics and slowly this has had an impact on whatever infection I had got. Elizabeth had gone back home but came in daily to see me. I've been having lots of diarrhoea and vomiting and what little hair I have got has been falling out. Life has been very unpleasant. I'm just glad I slept through most of it. Anyway, slowly my blood counts have been recovering showing that the transplanted cells are starting to work. I was seen by the whole team a couple of days ago and they were more than satisfied with my progress to the extent that I was discharged yesterday. My biggest problem for the next few months will be zero energy and just wanting to lie down and sleep a lot which is what I'm about to do as writing this has taken it out of me. At least there will be regular updates now that I'm back at home.
26th. July 2008 - Had another nasty vomiting session after dinner on Thursday - not nice. Had some drama yesterday morning. We had a phone call in the hotel at breakfast time to tell us that there had been a fire overnight in the basement of the building (Rosenheim Building) where I get seen. It is an annexe of the main UCH hospital. Damage was not serious but the building was badly smoke logged and we would have to go to one of the main wards instead. We did and saw the transplant consultant who was pleased with progress so far. The rest of the day was free so we took a bus ride out towards Wembley and Sunbury as we had not been to this part of London before. It managed to kill some time. Today I saw the registrar this morning and he checked me over. Still progressing well. Elizabeth then went home with some dirty washing and I went and rested back at the hotel. I'm feeling very tired but otherwise not too bad.
24th. July 2008 - (Thursday) I finished having my stem cells transfused back in to me today. Eight bags over two days. They had to use a separate cannula as the stem cells are to big to go down the PICC line. The nurse yesterday had a real job finding a vein and had to have three attempts - very painful. Much better today. I also had a bad vomiting episode after breakfast yesterday - not very nice. Otherwise I am staying well and am very grateful for Elizabeth's support. She popped home yesterday to take some dirty washing and check on the post etc.
22nd. July 2008 - (Tuesday) We checked in to UCH yesterday and I had a PICC line inserted in to my left upper arm. This is a long thin catheter which is threaded in to a large vein near my heart. I then had an x-ray to check it was in the right place. Unfortunately it had kinked up in to my jugular vein in my neck. However the nurse said it could right itself overnight. We then went and checked ourselves in to the hotel and in the evening we went to a nearby pub and had a good meal. Today, after another check x-ray which now showed the line had righted itself, I had my high dose chemotherapy infused through it and over tomorrow and Thursday I will have my stem cells infused back.
18th. July 2008 - It was really nice seeing Elizabeth in the choir last Saturday. They sang some good songs and it was good to have two of our friends join me. It was also good to see Simon and his family on Sunday. We thought he was looking fairly bright in himself. This week has been quiet which is no bad thing with all that I've got coming up. We've just got back from a day out at Southend where we took the train along the longest pier in the world and then had a nice pub lunch. Tomorrow it's the Myeloma Support Group in town which is why I am writing this now. On Monday it's in to town again for my admission to UCH for the transplant. It'll start with high dose chemo on Monday to be followed on Tuesday or Wednesday by the transfusion of my stem cells. Initially we will be staying in a hotel across the road from UCH and go there daily for bloods and checks etc. If, but more likely when, I become ill then I will be admitted to the main hospital. I am going to try and keep the blog going whilst I am in the hotel as they have complimentary wi-fi.
12th. July 2008 - It's been a quiet week and for some reason I've been having more hot flushes than usual. Had a telephone call mid week to say that there will be a bed for me to be admitted on 21st. July for my stem cell (bone marrow) transplant. I still can't believe its happening. Looking forward to it with some trepidation though. It'll mean three to four weeks in town. I just hope it goes well. Tonight I'm going to hear Elizabeth sing in her choir - it's their summer concert. Simon remains much the same on his dialysis, I hope at some stage he will get to have a transplant. We're going to see them tomorrow for lunch.
5th. July 2008 - We went in to Town on Tuesday to the Heart Hospital where I was to have an echocardiogram (an ultrasound scan of the heart). This went well and told me I had a very good ticker. On Thursday it was another trip in to Town to UCH where I first had a chest x-ray, then some lung function studies and then saw my haematology Consultant. She said all my tests had shown good results and the only one she had not got back yet was the harvesting of my stem cells. However she was confident this would be satisfactory and will be admitted in the next two weeks or so for my stem cell transplant. This could mean spending up to four weeks in Town. We never thought I would get to the stage of me having a transplant after having it put off three times in 2006, I think I am starting to feel a bit apprehensive about all this. It is so reassuring to have Elizabeth's support though.
28th. June 2008 - A fairly quiet week thankfully after all the travelling in to town last week. On Tuesday afternoon I took myself over towards Ilford to see my old bowls buddies playing. It was good to be greeted so warmly. Thanks for the beer Syd. Scooter is still running well. On Wednesday Elizabeth went on a coach trip with the Retirement Fellowship to Sandringham House. She had a really good day out. I have had falls the last two nights and last nights was the worst because I caught my big toe on something leaving blood all over the bedroom carpet until Elizabeth put a plaster on it. Thankfully it's all cleaned up very well this morning with our carpet cleaner machine. Thank you Elizabeth. Simon remains much the same but has had a change to his chemo drugs. This coming week is going to be fairly busy again but more about that next weekend.
21st. June 2008 - What a week that has been. We went to UCH on Tuesday to have my blood tests and found that my White Cell Count (WCC) was only 3.8. They need it to be at least 5.0 for harvesting. We were disappointed at that but were told to come back on Wednesday. We did and the blood test said the WCC was exactly 5.0 so I had a big needle put in each arm and my blood was circulated through the collecting machine. The whole process took about five hours. I was told to come again on Thursday for a repeat of the process. My WCC had then had reached 8.5. This is a result of my daily injections. The whole collecting process was repeated although after about four hours the needle in my right arm was starting to get very painful so I had to ask for it to be taken out. We then had to wait to see how many stem cells they had collected. They need about two million for a transplant. We were told that so far they had collected only 1.1 million so needed to come back on Friday. We did and, because the veins in my arms were rather worn out, they had to put a catheter in to the femoral vein in my left groin. This was not too bad as it was done under local anaesthetic. At the end of Friday they had collected, in total, 1.5 million stem cells but we were told not to worry as they can probably grow a few more in the laboratory. It will be about two weeks before we know if they have enough good stem cells for a transplant. They were three very tiring days as we were at UCH by 08.30 and didn't get home again until about 5.00. Otherwise the week has been good to us both. Simon remains much the same still having his regular renal dialysis.
14th. June 2008 - Not such a good week this week. We went to UCH on Monday and I was hooked up to a drip for five hours receiving my high dose chemotherapy and steroids. On Tuesday, Wednesday and Thursday I had lots of hot sweats and three spells of nausea and vomiting. This seems to be settling down now though, thankfully. We managed by tube again on Monday so I am pleased with that. Next Tuesday it's back to UCH for blood tests to see if I will be ready for the harvesting session on Wednesday and possibly Thursday as well. Simon remains on his dialysis but seems to be getting a little more energy back and has managed one or two days out.
7th. June 2008 - On Wednesday we spent two hours with the transplant coordinator at UCH. She went through the whole process of harvesting stem cells and then transplanting them at a later stage. She then took some blood and initial results showed that I was ready for the harvesting process. So, on Monday we go to UCH for me to have some high dose chemo through a drip and then for the next nine days I have to give myself a daily injection of GCSF to mobilize stem cells from the bone marrow in to the blood. I then go back to UCH and, if blood tests are OK, I will be hooked up to the harvesting machine. Once harvested the stem cells can be frozen for up to five years before the transplant takes place although I'm expecting that to happen within a month or two. That's really good news because if all goes according to plan it could well buy me a few more years. Simon remains on his dialysis and it is looking more and more likely that he will be on dialysis for evermore. Not such good news. I've had one or two nauseous spells and hot sweats which seems to be the norm. One other thing - we managed on Wednesday to get into town and out again by tube so my mobility is still improving which cheers me up.
31st. May 2008 - It's been a very quiet week. Elizabeth has still got a bit of a cough that is reluctant to go away and I've been feeling more tired than usual, but don't know why. We've got an appointment to see my transplant nurse on Tuesday to discuss my autologous stem cell transplant and to arrange for blood tests. If all is satisfactory then the harvesting procedure will commence on 9th. June. Simon remains much the same except there is discussion going on about whether he continues to have renal dialysis as at present or to go on to peritoneal dialysis which he would do at home every night.
24th. May 2008 - I was glad I did last weeks entry on the Friday because Saturday turned out to be an awful day. We decided to make our own way in to town to the meeting and went by train, tube and bus and a bit of walking. I think I overdid it a bit because as the meeting progressed I started to feel unwell with nausea, hot sweats and a lot of coughing. The speaker was a doctor informing us about all the new treatments that are being developed although it can take eight to ten years to get from the laboratory to the chemists shelves. We left at the coffee break and got a taxi home where I immediately went to bed. I half watched the cup final between periods of dozing off. I also vomited in the afternoon which was most unpleasant. I did not have anything to eat except a banana as I did not feel up to it. I got up in the evening for a couple of hours but was having a lot of coughing and sneezing which Elizabeth was also starting although neither of us had a temperature. On Sunday I was feeling a bit better which was just as well because Elizabeth had booked an early birthday present for me of a lunch cruise on the River Lee. I thoroughly enjoyed it, the food was excellent and the weather was good. On Wednesday, my birthday, we went out for a nice meal. I had an interesting out patient appointment at UCH on Thursday where I was informed that the team thought it was time to try for a stem cell transplant again. I will need to go and have some more bloods done and if these are good then the harvesting process will start on June 9th. This will start with a drip with strong chemo in it and then over the next ten days I will have to give myself injections of GCSF which mobilizes stem cells to move from the bone marrow to the blood. I will then go in again to be hooked up to a machine that separates the stem cells from the rest of the blood cells. Hopefully they will collect enough in one session but, if not, I would have to go back the next day. These cells are then frozen until they are put back in to me. More about that later. We went over to Kent on Friday to see Simon and his family. Elizabeth helped prepare lunch and also did some gardening which really helped them out. Simon remains much the same. Very lethargic most of the time like me. I also drove there and back. It was good to get behind the wheel again after some fifteen months but the movement in my left foot has improved enough for me to give it a try and I really enjoyed it. Our coughs and sneezes have slowly improved over the week and I can only put it down to a heavy summer cold.
16th. May 2008 - My Macmillan nurse, Debbie, came on Tuesday and gave me some very useful pointers to pass on to Simon who remains much the same. I should have been at out patients at UCH on Thursday but hospital transport didn't arrive. As it got nearer my appointment time I eventually got through to them and they apologised but said they would not be able to collect us until almost my appointment time. I contacted UCH to see if there would still be doctors in the clinic. I was told that as I was at the end of the clinic it would be too late when I arrived but I was told my bone marrow from last week was the best they had ever collected from me, which was good news. My appointment has now been rescheduled for next Thursday when they may hopefully start the planning for my autologous stem cell transplant. Tomorrow we are in town for the myeloma support group meeting which is why I am writing this today. I had a bad nauseous spell this afternoon but thankfully no vomiting. I've also had the usual hot and cold spells at times.
10th. May 2008 - I had a bone marrow aspiration and trephine planned for Tuesday afternoon at UCH so I thought if we went in to town a bit early we could have a pub lunch first. I then thought I might be ready to try public transport so we got the bus from over the road to the tube station which only had a few steps down and got off at Warren Street which only has escalators up. I managed it quite well with help from Elizabeth and am really pleased with myself. The bone marrow was more painful than usual - I don't think the doctor put in enough local and also had to have two attempts at the trephine as she did not get enough bone the first time. I decided we would get a taxi home. The rest of the week has been fairly normal for me - a few hot and cold spells, no energy and a bit of nausea at times. I had an email from my myeloma nurse at UCH saying my last paraprotein count had dropped to 21 from 23 the previous month. That's good news! Simon remains much the same and is continuing with his dialysis.
3rd. May 2008 - Saw my local haematology consultant on Monday and he is happy with things and will see me again in two months. It's good to stay in touch. We went over to Kent yesterday to see Simon and the family. He was not looking too well. The day before he had collapsed in the street after his dialysis session and had to go to A & E. However we managed to go out for lunch and spend a quiet afternoon with them. Simon is suffering from that great big myeloma problem - lethargy. He just has no energy but it was so good to see them all. Apart from that the week has been fairly quiet with only a couple of hot flushes and cold chills and, thankfully, no vomiting. However, this morning I was so lacking in energy I did not get out of bed until after 12.
26th. April 2008 - On Tuesday my stomach was feeling off colour all day and this culminated in me having an unpleasant vomiting session in the evening. We had booked ourselves on a coach trip on Wednesday to Hever Castle in Kent with the NHS Retirement Fellowship. I felt alright on Wednesday morning so we decided to go on the trip and took the wheelchair with the power wheels attachment. It rained all the way there but stopped as soon as we arrived. The afternoon was quite warm with the sun out at times and we had a lovely time exploring the beautiful gardens. We could never have managed it without the wheelchair though. The rest of the week has been fairly uneventful except that I've had a few hot flushes and cold chills. Simon and his family are finding life difficult with the dialysis three times a week and Simon is feeling very lethargic like I do. There are also the two little ones to look after as well.
19th. April 2008 - We saw my haematology consultant at UCH on Thursday and she wants me to stop my present course of chemotherapy. She is going to arrange for me to have a bone marrow aspiration and trephine in the next couple of weeks or so and, depending on how this is looking, wants to consider me for an autologous stem cell transplant. However we have been there before back in 2006 when I was given dates three times for a transplant and each time it was cancelled at the last minute because my blood counts had dropped so I will only believe it when it happens. Watch this space. The rest of the week has been fairly quiet, Simon is continuing with his dialysis and his latest blood results look quite promising. Elizabeth is still a bit chesty but mine has cleared up. I've had a few hot flushes this week but thankfully they don't last too long. So it's been quite a good week overall.
13th. April 2008 - Elizabeth and I have both been suffering with chesty coughs this week. They started on Tuesday and made both of us feel very exhausted. Thankfully we didn't have much on that we couldn't miss. Elizabeth should have been singing with her choir last night but her voice just wasn't up to it. However, we did start to feel a bit better yesterday so took ourselves out for lunch. I had a very touching email in the week from a lady who had come across my blog and she found it most helpful as her mother has myeloma. Simon continues to have his dialysis three times a week and is putting a brave face on things.
5th. April 2008 - Fairly quiet this week as it's been my steroid week. Debbie, my Macmillan nurse visited on Tuesday and was as shocked as everyone else to hear about Simon. On Wednesday we went to the NHS Retirement Fellowship for our monthly meeting. We had received a huge bouquet of flowers from them on Monday and it was good to be able to see them all. So much love and support being shown. On Thursday afternoon we got over to Kent to see Simon and the family. One blood count (creatinine) which is normally at about 100 is one indication of kidney function. On diagnosis Simon's was over 900 but has now reduced to the mid 400s. A positive sign at least that the dialysis is working although he may need it now for another three to four months. He is holding up well and, I think, is grateful for the knowledge I have of myeloma. I have not been sleeping well of late, up three or four times a night, possibly worry or medication, I'm not sure which but it does leave me feeling tired during the day. I do hope it passes.
29th. March 2008 - Most of the week has been spent coming to terms with the events of last week. At my out patients last week my blood levels were much the same so I'm to continue with the same chemo. Simon came out of hospital mid week but has to go back three times a week for dialysis and that will probably continue for three to four weeks. Let's hope and pray that the dialysis works and he gets adequate function back in his kidneys. On Friday we were up in Shropshire for my Mum's funeral and it was good to see so many family members there. This morning we went to the myeloma support group and everyone was shocked when I told them about Simon. WOW, my hit counter has hit the thousand mark. That is very reassuring for me to know that this is being read. It gives me the impetus to keep going.
22nd. March 2008 - What an horrendous week. I had my usual four weekly I V drip on Monday but we also learned that Simon (my eldest son) had only five per cent functionality of his kidneys. He was started on dialysis and plasma exchange to try and get his kidneys functioning again. By Wednesday we learned, as his test results came through, that he had been diagnosed with multiple myeloma, the same as me. Almost unheard of for it to run in families. Naturally the whole family are devastated as he is only 37 with my two young grandchildren to bring up. We were able to visit him on Thursday as I had an out patient appointment at UCH and after that we went over to Kings College Hospital where he is. It was a very emotional time to see him in a hospital bed. It could take up to a month to find out how much kidney function can be restored. Then, to cap it all, also on Thursday at 4am we had had a phone call from my sister to say that my mother had just died in the care home she was in. She was 91 and this was not unexpected but for it all to happen in the same week was almost too much to handle. The funeral will be in Shropshire next Friday. We have been given a lot of support from our church which has been very reassuring and helpful.
15th. March 2008 - A fairly quiet week of not doing very much. We went out for a pub lunch on Wednesday as we usually do because the afternoon gets rather busy. Elizabeth helps out at a Rainbow group (pre Brownie girls) and doesn't get home till around six and then at seven we have our weekly prayer group in church. Not much time for a meal. On Thursday my eldest son was admitted to hospital. He has not been very well for a couple of weeks and blood tests seem to be pointing to a problem in his kidneys. I hope they sort him out and it is nothing serious. Naturally we are both quite worried. A busier week coming up, read about it at next blog update.
8th. March 2008 - Well, that's the end of another heavy steroid week. I can already feel what little energy I have starting to disappear and it'll be like that for the best part of next week. A very close neighbour died in hospital on Tuesday after a long illness and it just brings home more closely the fragility of life. On a brighter note I have noticed over the past two to three months a little more movement developing in my left foot, which was initially totally dead, and also a little more feeling to both feet. It is making walking a little easier although it is strange walking on two half dead feet and my energy does not let me go very far so I am still extremely grateful for my scooter. So, there is improvement, but I have to accept it will be a very long process. My hands though do not seem to be improving so quickly and are still very weak.
1st. March 2008 - Apart from a nasty vomiting episode on Wednesday evening this has been quite a good week but next week it's back to a steroid week. My Macmillan nurse visited on Monday and on Thursday it was Elizabeth's birthday. We went to the cinema in the afternoon and out for a meal in the evening. My youngest son and his wife came and stayed with us last night and today they have gone to see their new niece. My hot sweats and cold chills have reduced although I have had a couple this week.
23rd. February 2008 - We went to see my new granddaughter yesterday and it was good to see that her older brother seems to be taking on the new arrival very well. I've had a bit more energy this week which is good although I had a couple of vomiting sessions at the start of the week which weren't very nice. I also had a nasty fall at home on Wednesday which has given me some bruises but thankfully nothing broken. On Thursday we went to UCH to see my haematology team at a planned out-patient appointment. I had blood taken and the results available that day were good apart from my red cell count which was down a bit, but nothing to worry about as a one off. The important results will take another ten days or so. I hope they turn out well.
16th. February 2008 - A week where I've spent an awful lot of time resting with my feet up but that was to be expected following all the steroids last week. Two deaths earlier in the week affected me. One was a good friend from the NHS Retirement Fellowship who had been ill for some time and the other was the actor, Roy Scheider (played the police chief in the Jaws films). He had multiple myeloma and had only been diagnosed two years ago! Apparently he got a heavy infection which he was unable to get over and it got the better of him. Anyway the week has really ended on a high with the arrival early this morning of Abigail Hannah at 8lbs 4ozs - my first granddaughter. Hannah is an old family name, there being one born in the 1760's and another in the 1830's. I'm also starting to feel a bit of energy coming back which is nice.
9th. February 2008 - A heavy pill taking week. Apart from my chemo every Monday I have to take 80 Dexamethasone (steroid) pills over four days every four weeks and this has been one of them. The hiccups have started every evening (common side effect) and will last a few days and next week I will have zero energy (another common side effect). On Wednesday we went to our regular monthly meeting of our branch of the NHS Retirement Fellowship and had a very interesting talk about haunted houses. I don't know if I've mentioned much about myself and Elizabeth previously but we both worked as registered nurses for over 30 years in the NHS (both general and psychiatric) although neither of us had anything to do with cancer. However I feel it qualifies us to say something about my treatment and the main thing is that all the haematology staff we have had dealings with have been helpful, open and honest with us and I feel I'm getting the best care available. What a great bunch of staff.
2nd. February 2008 - A fairly quiet week. My hot sweats and cold chills have not been happening so often, so that is good. Also my nausea and vomiting seem to be under control although I have had a couple of bouts of nausea this week but no vomiting. On Monday evening I had a temperature and on Tuesday morning my chest was feeling really tight. I went to my GP and am now on two lots of antibiotics for a chest infection. That's the third one in as many months although it is improving now. Next week is a steroid week and I'm not looking forward to all the pills. This morning I went along the road on my scooter to get some milk and when I got home I had to lie down for twenty minutes just to get some energy back. That seems to be a problem with most myeloma patients and something I've got to live with.
26th. January 2008 - A little bit more energy this week which is nice although it has been a rather anxious week. Each time I go to Outpatients at UCH I have bloods taken; some results are done quickly but some take ten to fourteen days, especially my paraprotein levels (measurement of nasty cancer cells). On Monday I had a phone call from the myeloma nurse at UCH saying the Consultant wanted to see me on Thursday as my paraprotein levels had gone up. (I wasn't due to see her for another couple of weeks). Naturally we were both rather concerned at this although I've only been on this chemo for about a month. Anyway, we went to UCH on Thursday and had to wait two hours to see the Consultant although the nurse did speak to us and told us that the Consultant was planning a change of chemo. When we eventually saw her and she could see how well I was looking she decided to give my present chemo another four weeks to see if there was a chance it could work. One of the problems with myeloma and chemo is that the myeloma builds up a resistance to chemo and I had been on this chemo back in 2006. Let's wait and see how my next blood tests are. Apart from all of that we managed to have some friends over for coffee on Tuesday and on Friday had lunch with a group of my old bowls buddies which was nice.
19th. January 2008 - My left knee has healed up well thanks to liberal applications of Cetavlex ointment. (I reckon it to be the best antiseptic ointment you can buy). I have had no energy all week except yesterday when I started to feel like doing things. So, consequently, most of the time I have been lying down with my feet up. I'm putting it down to the heavy dose of steroids I took last week - so I suppose I've got this to look forward to every four weeks, let's wait and see. Today we went in to Town to a Myeloma Support Group meeting. We had a talk about Macmillan Cancer Support and then had time to talk amongst ourselves. There were over thirty of us there and we meet every couple of months. It's good to share experiences with other patients and carers. Also, I managed without my wheelchair which I also managed to do for my two appointments last week. That's got to be progress.
12th. January 2008 - A rather mixed week. Monday started with my regular dose of 14 cyclophosphamide tablets (every Monday) followed on Tuesday to Friday by 20 tablets each day of dexamethasone. At least the Dex is only every four weeks but it does give me bad hiccups. On Tuesday we went in to Town and saw my Neurology Consultant for the first time in three months. She gave me a full physical and was pleased with the progress I had made. About a ten per cent improvement in nerve functioning in my feet and hands. She doesn't think I will ever get 100 per cent improvement but does not want to see me for another nine months. On Wednesday Elizabeth went to her carer's support group which she finds very helpful for sharing and receiving information because we myeloma patients are all so different. Thursday was another trip in to Town to see my Haematology team. Blood results were very good so its status quo and keep on with the pills. Yesterday I was very tired and spent a lot of the day asleep, consequently not a very good night last night. This morning I had a fall in the garden and badly grazed my left knee and ankle so they are very sore.
5th. January 2008 - Happy New Year to you all. A fairly quiet week. At my local hospital is a small in-patient unit mainly for the terminally ill and attached to this is a complementary therapy centre. Because of my cancer my Macmillan nurse had arranged for us to have a few sessions there. On Wednesday lunchtime we went along and I had a massage and Elizabeth had a reflexology session. We knew that one of our elderly neighbours was an in-patient there so popped in to see him. We were both greatly distressed to see how ill he looked and I said to Elizabeth afterwards that I hoped I would not end up looking like that. On Friday I had another vomiting session - so very unpleasant. Let's hope the rest of the year picks up and is a good year.
29th. December 2007 - Had some lovely home-made soup for lunch on Boxing Day but half an hour later it all came up again. These vomiting episodes really distress me as they are so unpleasant. I've changed my anti-emetic tablets in the hope that they will help me more. The rest of the week has been fairly quiet as I've had so little energy and have spent most of the time with my feet up. One more day of antibiotics to go but they have really helped. My chest is much better and I've got my voice back.
Christmas Day - Been to Church and opened prezzies. I've still got no voice and my temperature has been up and down like a yo-yo. Saw my G. P. yesterday and am now on two lots of antibiotics - hope they start working soon. The rest of the day is going to be quiet, probably watch a good DVD whilst dinner is cooking. Lots of Christmas Cards (it's nice to hear from so many people) and apologies if we didn't get one back to you.
22nd December 2007 - Thankfully a little more energy this week. Not too much happening. On Tuesday evening I went to see Elizabeth sing in her choir who were putting on their Christmas presentation. On Thursday we went into town to U C H to have bloods taken as I have been on chemo nearly two weeks now and they wanted me checked out. It's good to see that my white blood count is holding up well. Should be able to cope with most infections. Friday was my four weekly IV drip day at my local hospital although soon after getting home in the afternoon I had a nasty vomiting session. Today is a fairly quiet day - Elizabeth has gone to visit her mother in Sussex (96 and still going strong) - but I've ended the week with a cough, possibly a touch of laryngitis and I've lost my voice.
15th. December 2007 - Not a good week. Started chemo on Monday and vomited twice on Tuesday, which was an awful day. Wednesday has been the only good day, thank heavens, as I had two hospital trips. In the morning to U C H to see my radiotherapy team - they have discharged me for the time being, and in the afternoon to Whipps Cross Hospital to go to the Christmas Party of the Medical Day Unit (where I go for my four weekly drips). The rest of the week I have had zero energy and it's been a struggle just to write this. I don't know if it is the chemo or the myeloma but I hope I get some more energy soon.
9th. December 2007 - Finished my antibiotics on Thursday so phoned my nurse specialist and said my chest was better but I was going away for the weekend so could I start my chemo on Monday. She said that was OK. We had a lovely weekend away at Stuart and Sarah's but had to fore go the football match as the weather was dreadful (wet and cold). Had a meal at Sarah's parents on Saturday (her mum has leukemia so we have something in common). It was good to see them. Stuart's mum (my ex wife) came over for lunch on Sunday and it was good to see her. We've been home about an hour so am now doing this update.
9th. August 2008 - The last couple of days I've been feeling rotten with my temperature going up and also with episodes of vomiting. Elizabeth rang the emergency on call number this morning and they want me to go to UCH probably for admission, so if that is so, there will be no more blog at the moment.
TRANSPLANT TIME
7th. August 2008 - (Thursday) Hello, it's me, I'm back again. Goodness that has been a rough couple of weeks. When we went over to see the doctor on Tuesday 29th. July I had started to run a temperature and also was starting mucositis. (This is inflammation of the lining of the mouth and gullet caused by the chemo killing off these cells. It does not just kill cancer cells). They decided to admit me to the main ward there and then where I had a large room to myself. Since then I've been eating very little (sore mouth) and spending most of my time in bed listening to the radio or sleeping. They started me on high dose antibiotics and slowly this has had an impact on whatever infection I had got. Elizabeth had gone back home but came in daily to see me. I've been having lots of diarrhoea and vomiting and what little hair I have got has been falling out. Life has been very unpleasant. I'm just glad I slept through most of it. Anyway, slowly my blood counts have been recovering showing that the transplanted cells are starting to work. I was seen by the whole team a couple of days ago and they were more than satisfied with my progress to the extent that I was discharged yesterday. My biggest problem for the next few months will be zero energy and just wanting to lie down and sleep a lot which is what I'm about to do as writing this has taken it out of me. At least there will be regular updates now that I'm back at home.
26th. July 2008 - Had another nasty vomiting session after dinner on Thursday - not nice. Had some drama yesterday morning. We had a phone call in the hotel at breakfast time to tell us that there had been a fire overnight in the basement of the building (Rosenheim Building) where I get seen. It is an annexe of the main UCH hospital. Damage was not serious but the building was badly smoke logged and we would have to go to one of the main wards instead. We did and saw the transplant consultant who was pleased with progress so far. The rest of the day was free so we took a bus ride out towards Wembley and Sunbury as we had not been to this part of London before. It managed to kill some time. Today I saw the registrar this morning and he checked me over. Still progressing well. Elizabeth then went home with some dirty washing and I went and rested back at the hotel. I'm feeling very tired but otherwise not too bad.
24th. July 2008 - (Thursday) I finished having my stem cells transfused back in to me today. Eight bags over two days. They had to use a separate cannula as the stem cells are to big to go down the PICC line. The nurse yesterday had a real job finding a vein and had to have three attempts - very painful. Much better today. I also had a bad vomiting episode after breakfast yesterday - not very nice. Otherwise I am staying well and am very grateful for Elizabeth's support. She popped home yesterday to take some dirty washing and check on the post etc.
22nd. July 2008 - (Tuesday) We checked in to UCH yesterday and I had a PICC line inserted in to my left upper arm. This is a long thin catheter which is threaded in to a large vein near my heart. I then had an x-ray to check it was in the right place. Unfortunately it had kinked up in to my jugular vein in my neck. However the nurse said it could right itself overnight. We then went and checked ourselves in to the hotel and in the evening we went to a nearby pub and had a good meal. Today, after another check x-ray which now showed the line had righted itself, I had my high dose chemotherapy infused through it and over tomorrow and Thursday I will have my stem cells infused back.
18th. July 2008 - It was really nice seeing Elizabeth in the choir last Saturday. They sang some good songs and it was good to have two of our friends join me. It was also good to see Simon and his family on Sunday. We thought he was looking fairly bright in himself. This week has been quiet which is no bad thing with all that I've got coming up. We've just got back from a day out at Southend where we took the train along the longest pier in the world and then had a nice pub lunch. Tomorrow it's the Myeloma Support Group in town which is why I am writing this now. On Monday it's in to town again for my admission to UCH for the transplant. It'll start with high dose chemo on Monday to be followed on Tuesday or Wednesday by the transfusion of my stem cells. Initially we will be staying in a hotel across the road from UCH and go there daily for bloods and checks etc. If, but more likely when, I become ill then I will be admitted to the main hospital. I am going to try and keep the blog going whilst I am in the hotel as they have complimentary wi-fi.
12th. July 2008 - It's been a quiet week and for some reason I've been having more hot flushes than usual. Had a telephone call mid week to say that there will be a bed for me to be admitted on 21st. July for my stem cell (bone marrow) transplant. I still can't believe its happening. Looking forward to it with some trepidation though. It'll mean three to four weeks in town. I just hope it goes well. Tonight I'm going to hear Elizabeth sing in her choir - it's their summer concert. Simon remains much the same on his dialysis, I hope at some stage he will get to have a transplant. We're going to see them tomorrow for lunch.
5th. July 2008 - We went in to Town on Tuesday to the Heart Hospital where I was to have an echocardiogram (an ultrasound scan of the heart). This went well and told me I had a very good ticker. On Thursday it was another trip in to Town to UCH where I first had a chest x-ray, then some lung function studies and then saw my haematology Consultant. She said all my tests had shown good results and the only one she had not got back yet was the harvesting of my stem cells. However she was confident this would be satisfactory and will be admitted in the next two weeks or so for my stem cell transplant. This could mean spending up to four weeks in Town. We never thought I would get to the stage of me having a transplant after having it put off three times in 2006, I think I am starting to feel a bit apprehensive about all this. It is so reassuring to have Elizabeth's support though.
28th. June 2008 - A fairly quiet week thankfully after all the travelling in to town last week. On Tuesday afternoon I took myself over towards Ilford to see my old bowls buddies playing. It was good to be greeted so warmly. Thanks for the beer Syd. Scooter is still running well. On Wednesday Elizabeth went on a coach trip with the Retirement Fellowship to Sandringham House. She had a really good day out. I have had falls the last two nights and last nights was the worst because I caught my big toe on something leaving blood all over the bedroom carpet until Elizabeth put a plaster on it. Thankfully it's all cleaned up very well this morning with our carpet cleaner machine. Thank you Elizabeth. Simon remains much the same but has had a change to his chemo drugs. This coming week is going to be fairly busy again but more about that next weekend.
21st. June 2008 - What a week that has been. We went to UCH on Tuesday to have my blood tests and found that my White Cell Count (WCC) was only 3.8. They need it to be at least 5.0 for harvesting. We were disappointed at that but were told to come back on Wednesday. We did and the blood test said the WCC was exactly 5.0 so I had a big needle put in each arm and my blood was circulated through the collecting machine. The whole process took about five hours. I was told to come again on Thursday for a repeat of the process. My WCC had then had reached 8.5. This is a result of my daily injections. The whole collecting process was repeated although after about four hours the needle in my right arm was starting to get very painful so I had to ask for it to be taken out. We then had to wait to see how many stem cells they had collected. They need about two million for a transplant. We were told that so far they had collected only 1.1 million so needed to come back on Friday. We did and, because the veins in my arms were rather worn out, they had to put a catheter in to the femoral vein in my left groin. This was not too bad as it was done under local anaesthetic. At the end of Friday they had collected, in total, 1.5 million stem cells but we were told not to worry as they can probably grow a few more in the laboratory. It will be about two weeks before we know if they have enough good stem cells for a transplant. They were three very tiring days as we were at UCH by 08.30 and didn't get home again until about 5.00. Otherwise the week has been good to us both. Simon remains much the same still having his regular renal dialysis.
14th. June 2008 - Not such a good week this week. We went to UCH on Monday and I was hooked up to a drip for five hours receiving my high dose chemotherapy and steroids. On Tuesday, Wednesday and Thursday I had lots of hot sweats and three spells of nausea and vomiting. This seems to be settling down now though, thankfully. We managed by tube again on Monday so I am pleased with that. Next Tuesday it's back to UCH for blood tests to see if I will be ready for the harvesting session on Wednesday and possibly Thursday as well. Simon remains on his dialysis but seems to be getting a little more energy back and has managed one or two days out.
7th. June 2008 - On Wednesday we spent two hours with the transplant coordinator at UCH. She went through the whole process of harvesting stem cells and then transplanting them at a later stage. She then took some blood and initial results showed that I was ready for the harvesting process. So, on Monday we go to UCH for me to have some high dose chemo through a drip and then for the next nine days I have to give myself a daily injection of GCSF to mobilize stem cells from the bone marrow in to the blood. I then go back to UCH and, if blood tests are OK, I will be hooked up to the harvesting machine. Once harvested the stem cells can be frozen for up to five years before the transplant takes place although I'm expecting that to happen within a month or two. That's really good news because if all goes according to plan it could well buy me a few more years. Simon remains on his dialysis and it is looking more and more likely that he will be on dialysis for evermore. Not such good news. I've had one or two nauseous spells and hot sweats which seems to be the norm. One other thing - we managed on Wednesday to get into town and out again by tube so my mobility is still improving which cheers me up.
31st. May 2008 - It's been a very quiet week. Elizabeth has still got a bit of a cough that is reluctant to go away and I've been feeling more tired than usual, but don't know why. We've got an appointment to see my transplant nurse on Tuesday to discuss my autologous stem cell transplant and to arrange for blood tests. If all is satisfactory then the harvesting procedure will commence on 9th. June. Simon remains much the same except there is discussion going on about whether he continues to have renal dialysis as at present or to go on to peritoneal dialysis which he would do at home every night.
24th. May 2008 - I was glad I did last weeks entry on the Friday because Saturday turned out to be an awful day. We decided to make our own way in to town to the meeting and went by train, tube and bus and a bit of walking. I think I overdid it a bit because as the meeting progressed I started to feel unwell with nausea, hot sweats and a lot of coughing. The speaker was a doctor informing us about all the new treatments that are being developed although it can take eight to ten years to get from the laboratory to the chemists shelves. We left at the coffee break and got a taxi home where I immediately went to bed. I half watched the cup final between periods of dozing off. I also vomited in the afternoon which was most unpleasant. I did not have anything to eat except a banana as I did not feel up to it. I got up in the evening for a couple of hours but was having a lot of coughing and sneezing which Elizabeth was also starting although neither of us had a temperature. On Sunday I was feeling a bit better which was just as well because Elizabeth had booked an early birthday present for me of a lunch cruise on the River Lee. I thoroughly enjoyed it, the food was excellent and the weather was good. On Wednesday, my birthday, we went out for a nice meal. I had an interesting out patient appointment at UCH on Thursday where I was informed that the team thought it was time to try for a stem cell transplant again. I will need to go and have some more bloods done and if these are good then the harvesting process will start on June 9th. This will start with a drip with strong chemo in it and then over the next ten days I will have to give myself injections of GCSF which mobilizes stem cells to move from the bone marrow to the blood. I will then go in again to be hooked up to a machine that separates the stem cells from the rest of the blood cells. Hopefully they will collect enough in one session but, if not, I would have to go back the next day. These cells are then frozen until they are put back in to me. More about that later. We went over to Kent on Friday to see Simon and his family. Elizabeth helped prepare lunch and also did some gardening which really helped them out. Simon remains much the same. Very lethargic most of the time like me. I also drove there and back. It was good to get behind the wheel again after some fifteen months but the movement in my left foot has improved enough for me to give it a try and I really enjoyed it. Our coughs and sneezes have slowly improved over the week and I can only put it down to a heavy summer cold.
16th. May 2008 - My Macmillan nurse, Debbie, came on Tuesday and gave me some very useful pointers to pass on to Simon who remains much the same. I should have been at out patients at UCH on Thursday but hospital transport didn't arrive. As it got nearer my appointment time I eventually got through to them and they apologised but said they would not be able to collect us until almost my appointment time. I contacted UCH to see if there would still be doctors in the clinic. I was told that as I was at the end of the clinic it would be too late when I arrived but I was told my bone marrow from last week was the best they had ever collected from me, which was good news. My appointment has now been rescheduled for next Thursday when they may hopefully start the planning for my autologous stem cell transplant. Tomorrow we are in town for the myeloma support group meeting which is why I am writing this today. I had a bad nauseous spell this afternoon but thankfully no vomiting. I've also had the usual hot and cold spells at times.
10th. May 2008 - I had a bone marrow aspiration and trephine planned for Tuesday afternoon at UCH so I thought if we went in to town a bit early we could have a pub lunch first. I then thought I might be ready to try public transport so we got the bus from over the road to the tube station which only had a few steps down and got off at Warren Street which only has escalators up. I managed it quite well with help from Elizabeth and am really pleased with myself. The bone marrow was more painful than usual - I don't think the doctor put in enough local and also had to have two attempts at the trephine as she did not get enough bone the first time. I decided we would get a taxi home. The rest of the week has been fairly normal for me - a few hot and cold spells, no energy and a bit of nausea at times. I had an email from my myeloma nurse at UCH saying my last paraprotein count had dropped to 21 from 23 the previous month. That's good news! Simon remains much the same and is continuing with his dialysis.
3rd. May 2008 - Saw my local haematology consultant on Monday and he is happy with things and will see me again in two months. It's good to stay in touch. We went over to Kent yesterday to see Simon and the family. He was not looking too well. The day before he had collapsed in the street after his dialysis session and had to go to A & E. However we managed to go out for lunch and spend a quiet afternoon with them. Simon is suffering from that great big myeloma problem - lethargy. He just has no energy but it was so good to see them all. Apart from that the week has been fairly quiet with only a couple of hot flushes and cold chills and, thankfully, no vomiting. However, this morning I was so lacking in energy I did not get out of bed until after 12.
26th. April 2008 - On Tuesday my stomach was feeling off colour all day and this culminated in me having an unpleasant vomiting session in the evening. We had booked ourselves on a coach trip on Wednesday to Hever Castle in Kent with the NHS Retirement Fellowship. I felt alright on Wednesday morning so we decided to go on the trip and took the wheelchair with the power wheels attachment. It rained all the way there but stopped as soon as we arrived. The afternoon was quite warm with the sun out at times and we had a lovely time exploring the beautiful gardens. We could never have managed it without the wheelchair though. The rest of the week has been fairly uneventful except that I've had a few hot flushes and cold chills. Simon and his family are finding life difficult with the dialysis three times a week and Simon is feeling very lethargic like I do. There are also the two little ones to look after as well.
19th. April 2008 - We saw my haematology consultant at UCH on Thursday and she wants me to stop my present course of chemotherapy. She is going to arrange for me to have a bone marrow aspiration and trephine in the next couple of weeks or so and, depending on how this is looking, wants to consider me for an autologous stem cell transplant. However we have been there before back in 2006 when I was given dates three times for a transplant and each time it was cancelled at the last minute because my blood counts had dropped so I will only believe it when it happens. Watch this space. The rest of the week has been fairly quiet, Simon is continuing with his dialysis and his latest blood results look quite promising. Elizabeth is still a bit chesty but mine has cleared up. I've had a few hot flushes this week but thankfully they don't last too long. So it's been quite a good week overall.
13th. April 2008 - Elizabeth and I have both been suffering with chesty coughs this week. They started on Tuesday and made both of us feel very exhausted. Thankfully we didn't have much on that we couldn't miss. Elizabeth should have been singing with her choir last night but her voice just wasn't up to it. However, we did start to feel a bit better yesterday so took ourselves out for lunch. I had a very touching email in the week from a lady who had come across my blog and she found it most helpful as her mother has myeloma. Simon continues to have his dialysis three times a week and is putting a brave face on things.
5th. April 2008 - Fairly quiet this week as it's been my steroid week. Debbie, my Macmillan nurse visited on Tuesday and was as shocked as everyone else to hear about Simon. On Wednesday we went to the NHS Retirement Fellowship for our monthly meeting. We had received a huge bouquet of flowers from them on Monday and it was good to be able to see them all. So much love and support being shown. On Thursday afternoon we got over to Kent to see Simon and the family. One blood count (creatinine) which is normally at about 100 is one indication of kidney function. On diagnosis Simon's was over 900 but has now reduced to the mid 400s. A positive sign at least that the dialysis is working although he may need it now for another three to four months. He is holding up well and, I think, is grateful for the knowledge I have of myeloma. I have not been sleeping well of late, up three or four times a night, possibly worry or medication, I'm not sure which but it does leave me feeling tired during the day. I do hope it passes.
29th. March 2008 - Most of the week has been spent coming to terms with the events of last week. At my out patients last week my blood levels were much the same so I'm to continue with the same chemo. Simon came out of hospital mid week but has to go back three times a week for dialysis and that will probably continue for three to four weeks. Let's hope and pray that the dialysis works and he gets adequate function back in his kidneys. On Friday we were up in Shropshire for my Mum's funeral and it was good to see so many family members there. This morning we went to the myeloma support group and everyone was shocked when I told them about Simon. WOW, my hit counter has hit the thousand mark. That is very reassuring for me to know that this is being read. It gives me the impetus to keep going.
22nd. March 2008 - What an horrendous week. I had my usual four weekly I V drip on Monday but we also learned that Simon (my eldest son) had only five per cent functionality of his kidneys. He was started on dialysis and plasma exchange to try and get his kidneys functioning again. By Wednesday we learned, as his test results came through, that he had been diagnosed with multiple myeloma, the same as me. Almost unheard of for it to run in families. Naturally the whole family are devastated as he is only 37 with my two young grandchildren to bring up. We were able to visit him on Thursday as I had an out patient appointment at UCH and after that we went over to Kings College Hospital where he is. It was a very emotional time to see him in a hospital bed. It could take up to a month to find out how much kidney function can be restored. Then, to cap it all, also on Thursday at 4am we had had a phone call from my sister to say that my mother had just died in the care home she was in. She was 91 and this was not unexpected but for it all to happen in the same week was almost too much to handle. The funeral will be in Shropshire next Friday. We have been given a lot of support from our church which has been very reassuring and helpful.
15th. March 2008 - A fairly quiet week of not doing very much. We went out for a pub lunch on Wednesday as we usually do because the afternoon gets rather busy. Elizabeth helps out at a Rainbow group (pre Brownie girls) and doesn't get home till around six and then at seven we have our weekly prayer group in church. Not much time for a meal. On Thursday my eldest son was admitted to hospital. He has not been very well for a couple of weeks and blood tests seem to be pointing to a problem in his kidneys. I hope they sort him out and it is nothing serious. Naturally we are both quite worried. A busier week coming up, read about it at next blog update.
8th. March 2008 - Well, that's the end of another heavy steroid week. I can already feel what little energy I have starting to disappear and it'll be like that for the best part of next week. A very close neighbour died in hospital on Tuesday after a long illness and it just brings home more closely the fragility of life. On a brighter note I have noticed over the past two to three months a little more movement developing in my left foot, which was initially totally dead, and also a little more feeling to both feet. It is making walking a little easier although it is strange walking on two half dead feet and my energy does not let me go very far so I am still extremely grateful for my scooter. So, there is improvement, but I have to accept it will be a very long process. My hands though do not seem to be improving so quickly and are still very weak.
1st. March 2008 - Apart from a nasty vomiting episode on Wednesday evening this has been quite a good week but next week it's back to a steroid week. My Macmillan nurse visited on Monday and on Thursday it was Elizabeth's birthday. We went to the cinema in the afternoon and out for a meal in the evening. My youngest son and his wife came and stayed with us last night and today they have gone to see their new niece. My hot sweats and cold chills have reduced although I have had a couple this week.
23rd. February 2008 - We went to see my new granddaughter yesterday and it was good to see that her older brother seems to be taking on the new arrival very well. I've had a bit more energy this week which is good although I had a couple of vomiting sessions at the start of the week which weren't very nice. I also had a nasty fall at home on Wednesday which has given me some bruises but thankfully nothing broken. On Thursday we went to UCH to see my haematology team at a planned out-patient appointment. I had blood taken and the results available that day were good apart from my red cell count which was down a bit, but nothing to worry about as a one off. The important results will take another ten days or so. I hope they turn out well.
16th. February 2008 - A week where I've spent an awful lot of time resting with my feet up but that was to be expected following all the steroids last week. Two deaths earlier in the week affected me. One was a good friend from the NHS Retirement Fellowship who had been ill for some time and the other was the actor, Roy Scheider (played the police chief in the Jaws films). He had multiple myeloma and had only been diagnosed two years ago! Apparently he got a heavy infection which he was unable to get over and it got the better of him. Anyway the week has really ended on a high with the arrival early this morning of Abigail Hannah at 8lbs 4ozs - my first granddaughter. Hannah is an old family name, there being one born in the 1760's and another in the 1830's. I'm also starting to feel a bit of energy coming back which is nice.
9th. February 2008 - A heavy pill taking week. Apart from my chemo every Monday I have to take 80 Dexamethasone (steroid) pills over four days every four weeks and this has been one of them. The hiccups have started every evening (common side effect) and will last a few days and next week I will have zero energy (another common side effect). On Wednesday we went to our regular monthly meeting of our branch of the NHS Retirement Fellowship and had a very interesting talk about haunted houses. I don't know if I've mentioned much about myself and Elizabeth previously but we both worked as registered nurses for over 30 years in the NHS (both general and psychiatric) although neither of us had anything to do with cancer. However I feel it qualifies us to say something about my treatment and the main thing is that all the haematology staff we have had dealings with have been helpful, open and honest with us and I feel I'm getting the best care available. What a great bunch of staff.
2nd. February 2008 - A fairly quiet week. My hot sweats and cold chills have not been happening so often, so that is good. Also my nausea and vomiting seem to be under control although I have had a couple of bouts of nausea this week but no vomiting. On Monday evening I had a temperature and on Tuesday morning my chest was feeling really tight. I went to my GP and am now on two lots of antibiotics for a chest infection. That's the third one in as many months although it is improving now. Next week is a steroid week and I'm not looking forward to all the pills. This morning I went along the road on my scooter to get some milk and when I got home I had to lie down for twenty minutes just to get some energy back. That seems to be a problem with most myeloma patients and something I've got to live with.
26th. January 2008 - A little bit more energy this week which is nice although it has been a rather anxious week. Each time I go to Outpatients at UCH I have bloods taken; some results are done quickly but some take ten to fourteen days, especially my paraprotein levels (measurement of nasty cancer cells). On Monday I had a phone call from the myeloma nurse at UCH saying the Consultant wanted to see me on Thursday as my paraprotein levels had gone up. (I wasn't due to see her for another couple of weeks). Naturally we were both rather concerned at this although I've only been on this chemo for about a month. Anyway, we went to UCH on Thursday and had to wait two hours to see the Consultant although the nurse did speak to us and told us that the Consultant was planning a change of chemo. When we eventually saw her and she could see how well I was looking she decided to give my present chemo another four weeks to see if there was a chance it could work. One of the problems with myeloma and chemo is that the myeloma builds up a resistance to chemo and I had been on this chemo back in 2006. Let's wait and see how my next blood tests are. Apart from all of that we managed to have some friends over for coffee on Tuesday and on Friday had lunch with a group of my old bowls buddies which was nice.
19th. January 2008 - My left knee has healed up well thanks to liberal applications of Cetavlex ointment. (I reckon it to be the best antiseptic ointment you can buy). I have had no energy all week except yesterday when I started to feel like doing things. So, consequently, most of the time I have been lying down with my feet up. I'm putting it down to the heavy dose of steroids I took last week - so I suppose I've got this to look forward to every four weeks, let's wait and see. Today we went in to Town to a Myeloma Support Group meeting. We had a talk about Macmillan Cancer Support and then had time to talk amongst ourselves. There were over thirty of us there and we meet every couple of months. It's good to share experiences with other patients and carers. Also, I managed without my wheelchair which I also managed to do for my two appointments last week. That's got to be progress.
12th. January 2008 - A rather mixed week. Monday started with my regular dose of 14 cyclophosphamide tablets (every Monday) followed on Tuesday to Friday by 20 tablets each day of dexamethasone. At least the Dex is only every four weeks but it does give me bad hiccups. On Tuesday we went in to Town and saw my Neurology Consultant for the first time in three months. She gave me a full physical and was pleased with the progress I had made. About a ten per cent improvement in nerve functioning in my feet and hands. She doesn't think I will ever get 100 per cent improvement but does not want to see me for another nine months. On Wednesday Elizabeth went to her carer's support group which she finds very helpful for sharing and receiving information because we myeloma patients are all so different. Thursday was another trip in to Town to see my Haematology team. Blood results were very good so its status quo and keep on with the pills. Yesterday I was very tired and spent a lot of the day asleep, consequently not a very good night last night. This morning I had a fall in the garden and badly grazed my left knee and ankle so they are very sore.
5th. January 2008 - Happy New Year to you all. A fairly quiet week. At my local hospital is a small in-patient unit mainly for the terminally ill and attached to this is a complementary therapy centre. Because of my cancer my Macmillan nurse had arranged for us to have a few sessions there. On Wednesday lunchtime we went along and I had a massage and Elizabeth had a reflexology session. We knew that one of our elderly neighbours was an in-patient there so popped in to see him. We were both greatly distressed to see how ill he looked and I said to Elizabeth afterwards that I hoped I would not end up looking like that. On Friday I had another vomiting session - so very unpleasant. Let's hope the rest of the year picks up and is a good year.
2008
29th. December 2007 - Had some lovely home-made soup for lunch on Boxing Day but half an hour later it all came up again. These vomiting episodes really distress me as they are so unpleasant. I've changed my anti-emetic tablets in the hope that they will help me more. The rest of the week has been fairly quiet as I've had so little energy and have spent most of the time with my feet up. One more day of antibiotics to go but they have really helped. My chest is much better and I've got my voice back.
Christmas Day - Been to Church and opened prezzies. I've still got no voice and my temperature has been up and down like a yo-yo. Saw my G. P. yesterday and am now on two lots of antibiotics - hope they start working soon. The rest of the day is going to be quiet, probably watch a good DVD whilst dinner is cooking. Lots of Christmas Cards (it's nice to hear from so many people) and apologies if we didn't get one back to you.
22nd December 2007 - Thankfully a little more energy this week. Not too much happening. On Tuesday evening I went to see Elizabeth sing in her choir who were putting on their Christmas presentation. On Thursday we went into town to U C H to have bloods taken as I have been on chemo nearly two weeks now and they wanted me checked out. It's good to see that my white blood count is holding up well. Should be able to cope with most infections. Friday was my four weekly IV drip day at my local hospital although soon after getting home in the afternoon I had a nasty vomiting session. Today is a fairly quiet day - Elizabeth has gone to visit her mother in Sussex (96 and still going strong) - but I've ended the week with a cough, possibly a touch of laryngitis and I've lost my voice.
15th. December 2007 - Not a good week. Started chemo on Monday and vomited twice on Tuesday, which was an awful day. Wednesday has been the only good day, thank heavens, as I had two hospital trips. In the morning to U C H to see my radiotherapy team - they have discharged me for the time being, and in the afternoon to Whipps Cross Hospital to go to the Christmas Party of the Medical Day Unit (where I go for my four weekly drips). The rest of the week I have had zero energy and it's been a struggle just to write this. I don't know if it is the chemo or the myeloma but I hope I get some more energy soon.
9th. December 2007 - Finished my antibiotics on Thursday so phoned my nurse specialist and said my chest was better but I was going away for the weekend so could I start my chemo on Monday. She said that was OK. We had a lovely weekend away at Stuart and Sarah's but had to fore go the football match as the weather was dreadful (wet and cold). Had a meal at Sarah's parents on Saturday (her mum has leukemia so we have something in common). It was good to see them. Stuart's mum (my ex wife) came over for lunch on Sunday and it was good to see her. We've been home about an hour so am now doing this update.
2nd. December 2007 - I started the week with a cold and a chesty cough although I felt it was improving as the week went on. On Thursday we went to University College Hospital for a regular out-patient appointment with my haematology team. After a wait of two hours we saw the doctor. Because the blood counts of my paraproteins have been rising they want to put me on chemo again. However he had a listen to my chest and said I should have some powerful antibiotics before I start my chemo so that's what I'm taking at the moment. When I start my chemo, probably in another week, the regime will be fourteen (14) tablets of cyclophosphamide on the same day each week and also eighty (80) tablets of dexamethasone spread over four consecutive days every four weeks. We eventually got home on Thursday at about 7 pm. so it was a long and tiring day. Yesterday I had a vomiting spell in the morning and felt quite rotten for the rest of the day. However, next weekend we are going to stay with my younger son and, if the weather is not too bad, hoping to go and watch Leicester City play at the Walkers Stadium.
24th. November 2007 - I've been feeling rather down and more lethargic than usual for the last week or two. I'm putting it down to several things - the second anniversary has reminded me more that I have a life limiting illness, my body does not like cold weather so I have not been out as much and I have been looking to the practicalities of the future. Do I have a funeral service or do I have a private crematorium service followed later by a Thanksgiving Service. I do want to get things sorted out whilst I can. My Macmillan nurse is looking into possible causes of my cold chills. I also thought I had finished with my vomiting spells as I had not had one for a couple of months but I had a bad episode this morning. However, I did summon up the energy last Tuesday to go and have a Christmas lunch with my bowls buddies and their partners etc. There were over thirty of us and it was good to see them.
17th. November 2007 - Last Sunday - 11th. November (Armistice Day) was the second anniversary of my diagnosis. I am thankful to God for giving me these two years and pray for many more.
Some time ago we asked the Warmfront people (see advantages of DLA above) to come and see if they could offer us any benefits. They came and did a survey and said that our boiler (a combined warm air and water unit) although functioning well was twenty years old and probably quite inefficient so we qualified to have a new boiler unit fitted. They came last Monday and spent the morning fitting a gleaming new boiler that is quite an improvement in design and function over the old one.
The cold chills I've mentioned before seem to be happening nearly every afternoon now and they are quite unpleasant till they pass after an hour or two. I hope I get rid of them soon. Otherwise I'm ticking over reasonably well with just the usual problems that have been mentioned before. It's very gratifying to see the hit counter pass the five hundred mark. It's good to know that my blog is being read as it gives me something to do and is quite therapeutic.
10th. November 2007 - A fairly quiet week with me still feeling quite good in myself generally. Our busiest day was probably Wednesday when we went to the regular monthly meeting of the Retirement Fellowship. Everyone was pleased to see me especially as we had missed the last meeting because we were away. In the evening we went to the regular prayer group at our church. My main problems remain those caused by side effects to my last chemotherapy - weakness and loss of feeling in my hands and feet although they are slightly better than they were a few months ago. That's how slow progress is. I am also still getting bone pain in my upper arms which tends to come and go and, probably the biggest problem, a real lack of energy and get up and go.
3rd. November 2007 – Another week and I’m still staying good in myself. My Macmillan nurse came on Tuesday, it’s always nice to see her and have a chat. She thinks the cold chills may be because of low blood sugar so wants me to check it when they happen. I also had my Flu and Pneumonia jab on Tuesday so hopefully I’ll have a good winter as any serious infection is very bad news for me. We went and visited my grandson and his parents on Wednesday after stopping to have lunch on the way. It’s always good to see his happy smiling face, it really lifts my spirits.
On Thursday we were at
27th. October 2007 - Another Out Patients appointment last Tuesday, but this time it was for Elizabeth and not me, makes a change. For up to a year before Elizabeth took early retirement at the end of September 2006 (so we could spend some quality time together) she had been having some nasty gastro-intestinal problems. Over the past year she has been having investigations including biopsies, barium enema and ultrasound scan. The surgeon last Tuesday said all was clear apart from possibly some mild diverticulitis, not a big problem. Interestingly, since she retired, apart from the odd hiccup, she has had no further problems. It is quite probable that stress at work was playing a large part in this.
We are both members of the local branch of the NHS Retirement Fellowship and once a year they organize a day trip to France. So, on Thursday Elizabeth went to Boulogne for the day and had a good time. I didn't think I would be up to it. I remain fairly good still, my biggest problems being the neuropathy damage in my hands and feet and fatigue. For instance, I had a shower this morning and had to lie down for twenty minutes afterwards to get my breath back. Also, I've started getting cold chills, mainly in the late afternoon when my temperature drops by up to 2 degrees centigrade. I cope by having some hot drinks and cranking up the heating. They last for up to an hour and are most unpleasant. Perhaps this is another problem of living with cancer. I'll check with my Macmillan nurse when she visits on Monday.
20th. October 2007 - Another week where my health has stayed pretty good which I am grateful for. We had an interesting day in town yesterday. Earlier in the summer I volunteered Elizabeth and myself to give a talk to health professionals working in the fields of Haematology, Oncology or Myeloma. Well the study day was yesterday and we went in to town and were joined by the carer of another myeloma patient. I started telling my story followed by Elizabeth to say her bit and ending with Thea to tell her story of life as a carer. I was rather nervous to put it mildly for there were about 80 to 100 people there but we were all clapped for our input. We then stayed for lunch and so many of the attendees came up to us to thank us saying it is so good to hear what life is like as a patient and carer. We were also given a lovely hyacinth bulb courtesy of Myeloma UK. A bit of a downer today as Elizabeth has a sore neck, I think she must have slept in a funny position. Let's hope it passes soon.
13th. October 2007 - What a good week we've just had. The weather has been nice, no hospital appointments and I've been feeling pretty good in myself. My Macmillan nurse came on Tuesday and stayed for about an hour. She does this every couple of weeks or so, it's always nice to see her. On Wednesday Elizabeth and I both had a pamper session at our local nail shop. I had a manicure and pedicure and Elizabeth just had a pedicure. It was so nice having my hands and feet attended to as I find it very difficult to do myself. Surfing the net recently I came across a site that offers beauty and therapy treatments in your own home. I booked myself a massage for yesterday and a young lady duly arrived with all her equipment and gave me a very relaxing massage. So good in fact, that I shall be doing that again. http://www.the-home-spa.co.uk/ So, as I said, a very nice week thats left me feeling really good.
5th. October 2007 - A fairly quiet week. Saw my Haematology doctor at University College Hospital on Thursday. A female Registrar, not seen her before but a lovely and kind lady. Although my Bone Marrow result shows a small increase in the severity of my myeloma the team do not feel it warrants putting me on chemotherapy yet. I'm thankful for that as I am on enough pills at the moment.
30th. September 2007 - What a lovely refreshing weekend. Yesterday was spent in Kent seeing my grandson (3 next January) and he was so proud to show us his "big boy pants" as he has mastered potty training (just about!). The five of us all went out for a lovely pub lunch and then we spent an interesting afternoon chatting away and playing with a Nintendo Wii.
Today we had lunch with our Vicar and his family and it was good to talk about some of our fears and concerns about my future. No one knows how much longer I have got, it could be weeks or months or, hopefully, years. Myeloma affects the production of all blood cells as they all start life in the bone marrow. This means that my immune system is compromised and I can easily pick up infections. It only needs a nasty bout of pneumonia and that could be it! Let's hope and pray that I stay well for a long time.
Today we had lunch with our Vicar and his family and it was good to talk about some of our fears and concerns about my future. No one knows how much longer I have got, it could be weeks or months or, hopefully, years. Myeloma affects the production of all blood cells as they all start life in the bone marrow. This means that my immune system is compromised and I can easily pick up infections. It only needs a nasty bout of pneumonia and that could be it! Let's hope and pray that I stay well for a long time.
27th. September 2007 - Had my bone marrow aspiration and trephine at University College Hospital today. A most unpleasant procedure and also somewhat painful despite having local anaesthetic. At least the doctor said he got good samples of marrow and bone. The results of all this will not be known for about ten days. Yesterday was also spent in town seeing my radiology doctor. He was pleased that I had had no side effects from the radiotherapy although it had not had the desired effect of reducing the bone pain in my arms. Tomorrow I will be at my local hospital having my regular four weekly drip, but on Saturday we are going over to see my grandson and his parents in Kent. At least I will end the week on a brighter note.
25th. September 2007- Trying out a new format so that the latest entry will now be at the top of the posting. Hope you all like it, saves you having to scroll to the bottom each time you visit.
22nd. September 2007 - What a good week away. The weather stayed kind for us and we were able to see a lot of the Somerset countryside and also visited a couple of National Trust houses. I only had one episode of vomiting so that was not too bad. Got quite a busy week coming up with a radiotherapy out patient appointment, a bone marrow aspiration and trephine (my paraprotein level is up to 22 - this measures the severity of myeloma in my blood - should be zero) and my four weekly infusion of pamidronate ( to help strengthen my bones ). Observing the bone marrow and bone under a microscope tells the haematology team more about what the myeloma is doing. Feeling very lethargic today - perhaps the week away has taken it out of me - didn't get up till 2 o'clock this afternoon, now I need to go and lie down again.
12th. September 2007 - Went on a nice trip out on my scooter yesterday to see my old bowls buddies. It's really good that we are having such fine weather as I enjoy getting out and about. I hope the weather lasts into next week as we are going to be in Somerset having a change of scenery.
7th. September 2007 - Saw my haematology team yesterday. Status quo continues although my blood results are not quite as good as last time. They may want me to have a bone marrow aspiration and trephine before the next appointment. (They stick a very thick needle into my pelvis for the marrow and take a small sample of bone at the same time - although it is under local anaesthetic it is still quite uncomfortable).
4th. September 2007 - Puncture all sorted now, I can get on the road again. Elizabeth and I have been asked to give a short talk at an Education Day for Nurses in October. They want me to give the nurses information from a sufferer's perspective. As we are both retired nurses we recognize the importance of this and are only too happy to do it. As the hit counter gets to 200 it is good to know that people are reading this blog and gives me the incentive to keep going.
I had a new experience today - Saturday, 1st. September 2007. I had gone about a mile down the road on my scooter to do a little shopping when I realized things didn't seem quite right. I looked down at my back wheels and one tyre was looking rather flat. I stopped and within moments it was completely deflated - so was I, a little bit. All I can say is thank God for mobile phones and breakdown insurance. I was home in just under an hour. The man from the Mobility Shop is coming on Monday to repair it. In myself. I'm still feeling very lethargic (don't usually get up till mid morning) and the vomiting hasn't gone away. Twice last week. Very unpleasant.
25th. August 2007 - That has been a very tiring and exhausting week traveling to University College Hospital each day for radiotherapy. I'm so grateful to Elizabeth for coming with me each time. There is a lot of waiting around for hospital transport. So far no side effects although I still have some bone pain in my right arm. Let's hope the radiotherapy has been able to arrest further bone destruction. A fairly quiet couple of weeks coming up now with only a couple of out-patient appointments to contend with. I'm still getting some nausea and vomiting although that has improved a bit but I'm still lacking in energy and "get up and go".
17th. August 2007 - Started my radiotherapy today. It looks like I'll be spending the best part of the next two weeks traveling in to Town for treatment. I always go by patient transport as I cannot manage public transport. It is not my preferable way to travel as it can take a long time and you have to be ready and waiting for them at least two hours before your appointment. The next two weeks are going to be very tedious and tiring. At least I have my Elizabeth for company on the trips.
Yesterday, August 10th. 2007 was an awful day. The previous day we had been to University College Hospital for an outpatient appointment and the situation remains status quo as my blood counts are still acceptably good. These days always tire me out. So on the 10th. I had no energy to get up so didn't until about 1pm., I'd also fallen heavily the night before bruising my backside. Didn't fancy any lunch as my tummy was grumbling a bit. Took an anti-emetic pill. Then late afternoon I vomited.
Had a little supper but just before bedtime that came back up. Glad to get to bed and now feel a little better today.
Today, August 7th. 2007, I went on a round trip of nearly eight and a half miles on my scooter to see my old lawn bowls buddies. It was a good journey and did me good as well. I used to play bowls until the neuropathy affected my hands and feet. It would be lovely to play again. Lets hope I will sometime.
Update 4th. August 2007 - What a lovely break in the Cotswolds. We were blessed with perfect weather, sunshine every day except the day we left. We visited a beautiful National Trust garden amongst other things and also had lunch one day in England's oldest Inn.
My symptoms have not been too bad this past week possibly helped by some much nicer weather. However I now know that I will be starting radiotherapy on my arms on 17th. August. Lets hope that goes well.
Update 25th. July 2007
Just come home from University College Hospital where I've seen the Radiotherapy team. I've got lytic lesions (holes in the bone) in both upper arms and in the left lower arm caused by the myeloma. I'm going to need radiotherapy to both arms to try and halt the bone destruction and to relieve pain. The doctor was most surprised that I had not broken an arm before now especially as I had been having falls. Probably have the radiotherapy next month after our little holiday. I'm now worried about my legs so they will probably x-ray those after this treatment.
Update June 2007 - At the end of my third course of Velcade in February I started to get pain in my legs, hands and feet. They stopped the chemo as this is one of the side effects. By March I had total numbness in my feet with pronounced foot drop of my left foot. I also had partial numbness in my hands. I had many falls at home and became housebound except by going out in a wheelchair or in the car.
7th. September 2007 - Saw my haematology team yesterday. Status quo continues although my blood results are not quite as good as last time. They may want me to have a bone marrow aspiration and trephine before the next appointment. (They stick a very thick needle into my pelvis for the marrow and take a small sample of bone at the same time - although it is under local anaesthetic it is still quite uncomfortable).
4th. September 2007 - Puncture all sorted now, I can get on the road again. Elizabeth and I have been asked to give a short talk at an Education Day for Nurses in October. They want me to give the nurses information from a sufferer's perspective. As we are both retired nurses we recognize the importance of this and are only too happy to do it. As the hit counter gets to 200 it is good to know that people are reading this blog and gives me the incentive to keep going.
I had a new experience today - Saturday, 1st. September 2007. I had gone about a mile down the road on my scooter to do a little shopping when I realized things didn't seem quite right. I looked down at my back wheels and one tyre was looking rather flat. I stopped and within moments it was completely deflated - so was I, a little bit. All I can say is thank God for mobile phones and breakdown insurance. I was home in just under an hour. The man from the Mobility Shop is coming on Monday to repair it. In myself. I'm still feeling very lethargic (don't usually get up till mid morning) and the vomiting hasn't gone away. Twice last week. Very unpleasant.
25th. August 2007 - That has been a very tiring and exhausting week traveling to University College Hospital each day for radiotherapy. I'm so grateful to Elizabeth for coming with me each time. There is a lot of waiting around for hospital transport. So far no side effects although I still have some bone pain in my right arm. Let's hope the radiotherapy has been able to arrest further bone destruction. A fairly quiet couple of weeks coming up now with only a couple of out-patient appointments to contend with. I'm still getting some nausea and vomiting although that has improved a bit but I'm still lacking in energy and "get up and go".
17th. August 2007 - Started my radiotherapy today. It looks like I'll be spending the best part of the next two weeks traveling in to Town for treatment. I always go by patient transport as I cannot manage public transport. It is not my preferable way to travel as it can take a long time and you have to be ready and waiting for them at least two hours before your appointment. The next two weeks are going to be very tedious and tiring. At least I have my Elizabeth for company on the trips.
Yesterday, August 10th. 2007 was an awful day. The previous day we had been to University College Hospital for an outpatient appointment and the situation remains status quo as my blood counts are still acceptably good. These days always tire me out. So on the 10th. I had no energy to get up so didn't until about 1pm., I'd also fallen heavily the night before bruising my backside. Didn't fancy any lunch as my tummy was grumbling a bit. Took an anti-emetic pill. Then late afternoon I vomited.
Had a little supper but just before bedtime that came back up. Glad to get to bed and now feel a little better today.
Today, August 7th. 2007, I went on a round trip of nearly eight and a half miles on my scooter to see my old lawn bowls buddies. It was a good journey and did me good as well. I used to play bowls until the neuropathy affected my hands and feet. It would be lovely to play again. Lets hope I will sometime.
Update 4th. August 2007 - What a lovely break in the Cotswolds. We were blessed with perfect weather, sunshine every day except the day we left. We visited a beautiful National Trust garden amongst other things and also had lunch one day in England's oldest Inn.
My symptoms have not been too bad this past week possibly helped by some much nicer weather. However I now know that I will be starting radiotherapy on my arms on 17th. August. Lets hope that goes well.
Update 25th. July 2007
Just come home from University College Hospital where I've seen the Radiotherapy team. I've got lytic lesions (holes in the bone) in both upper arms and in the left lower arm caused by the myeloma. I'm going to need radiotherapy to both arms to try and halt the bone destruction and to relieve pain. The doctor was most surprised that I had not broken an arm before now especially as I had been having falls. Probably have the radiotherapy next month after our little holiday. I'm now worried about my legs so they will probably x-ray those after this treatment.
Update 24th. July 2007
Visited by my Macmillan Nurse (Debbie) this afternoon. I have been feeling a little more energetic today and went on my scooter to the chemist and Homebase this morning. Also, having Debbie to visit is like a breath of fresh air because she is such a warm and loving person. It's good to hear that flood waters are receding, not only for the poor people affected, but also for our holiday to come.
Update 20th. July 2007
Have now purchased a mobility scooter which lives in the garage and now gives me the freedom to go out and about on my own. GREAT !!!! Because, since February, I have had to rely on someone else (usually my darling Elizabeth) to take me out either by car, taxi or bus in my wheelchair. I've also bought a battery powered pack which attaches to the wheelchair in seconds (with a hand control) which means the person pushing does not have to push anymore, just steer. Really good for when we go away as it all fits in the boot of the car. We are going to the Cotswolds at the end of the month to have a change of scenery and a break from hospital visits. However, I have been told that, because I have been complaining of bone pain in my upper arms, I will probably have to have some sessions of radiotherapy. Will know for certain next Wednesday (25th.).Update June 2007 - At the end of my third course of Velcade in February I started to get pain in my legs, hands and feet. They stopped the chemo as this is one of the side effects. By March I had total numbness in my feet with pronounced foot drop of my left foot. I also had partial numbness in my hands. I had many falls at home and became housebound except by going out in a wheelchair or in the car.
I was admitted to the National Hospital for Neurology and Neurosurgery for three weeks in April and underwent a barrage of tests including a biopsy of nerve and muscle from my leg. They seem to think (but not 100 per cent certain) that I have vasculitis, an inflammation of blood vessels, which reduces blood flow to the nerves and hence my problem.
The deterioration stopped around Easter and I have been status quo since then with possibly some minor improvements but very slowly. I'm now able to walk about 20 yards with the help of plastic L shaped attachments to my legs which support my ankles. After that I'm worn out and need to sit down.
At the moment I'm using a wheelchair for any further distance and am exploring the purchase of an electric mobility scooter.
The prognosis is that I may improve but they cannot tell me by how much and it will take many months.
I've been off chemo since February but my blood results are stable. I suffer tremendously with lack of energy and that really gets to me, but that is myeloma.
The deterioration stopped around Easter and I have been status quo since then with possibly some minor improvements but very slowly. I'm now able to walk about 20 yards with the help of plastic L shaped attachments to my legs which support my ankles. After that I'm worn out and need to sit down.
At the moment I'm using a wheelchair for any further distance and am exploring the purchase of an electric mobility scooter.
The prognosis is that I may improve but they cannot tell me by how much and it will take many months.
I've been off chemo since February but my blood results are stable. I suffer tremendously with lack of energy and that really gets to me, but that is myeloma.
Update January 2007 - Coming to end of second course of Velcade and dexamethsone on Friday 12th. and then have ten days off. No real side effects so far thank heavens.
Asked doctor if it would be OK to have a holiday during this free week. He has given his blessing so we are off to the Canary Islands for (hopefully) some winter sun. At least it will be more pleasant than a British winter. Holiday didn't go so well as I got a nasty chest infection two days after arriving. Spent a couple of days in bed, but plenty of warm sunshine so that was nice. Course three of Velcade postponed for a week because of this but will now finish it on Thursday (8th. Feb). My blood results have not been as good as this for a year now so am feeling very positive about Velcade.2007
Update December 2006
White counts still low so change of treatment. Started on Velcade and Dexamethasone on 11th. December. Also had radiotherapy to my right humerus as had bone pain around a lytic lesion (hole in bone). No side effects to Velcade and pain vastly improved so am feeling good at the moment.Update November 2006
Had bone marrow aspiration and trephine on 14th. November after stopping all chemo drugs at end of October. Good news is that my myeloma is stable , but bad news is that following blood tests on 23rd. November my white cell count is still very low. Feeling good physically but disappointed at failure of white count to improve yet.Latest news - Have now stopped Thalidomide and Dexamethasone as from today (October 29th. 2006) as blood counts improving. To be monitored over next six weeks or so and, if all is well, to go for harvesting. Doctor thinks my bone marrow is very susceptible to drug changes, hence the reason for stopping the drugs.
Now heard 12th. Sept. 2006 that my white cell count is back up and I'm scheduled for pre-harvesting chemo over five days starting on 9th. October 06. This date has now been put back by a couple of months as my white cell count has dropped - probably due to having a bad chest infection and loads of antibiotics. Better now so just waiting for blood counts to improve.
Reviewed by Consultant on August 24th. 2006 but not ready for harvesting yet before autologous stem cell transplant because white cell count is not improving.
This is six weeks after stopping chemo. Have been put back on Dexamethasone and Thalidomide.
2006 continued
I was diagnosed on 11th. November 2005 with Multiple Myeloma, a terminal cancer of the bone marrow which damages the production of normal blood cells and also eats bone. Treatment can only alleviate symptoms and prolong life. Normal life expectancy of a sufferer is three to five years. An abnormality was noticed in a routine blood test as I had been having regular heavy nosebleeds for nearly a year. One of the rarer symptoms of Myeloma! Started on Z-Dex (Idarubicin and Dexamethasone) chemotherapy and had good initial response. Changed to CDT (Cyclophosphamide, Dexamethasone and Thalidomide) chemotherapy in April 2006 as paraprotein levels ( a way of measuring how severe the myeloma is ) were increasing. Had good response and have now (August 2006) been chemo free for one month and am waiting for stem cell harvesting for an autologous stem cell transplant. Am keeping pretty good in myself but do suffer from a lot of lethargy.
2005 / 6 - It all starts here
pms1947@ntlworld.com
