Today is Sunday 23rd and therefore day 17 since my stem cells were returned. It is remarkable to think that I was discharged on Tuesday and today I cooked breakfast !
Having arrived home, and since my hair had started to lose interest in my scalp, Margaret kindly shaved it all off ! I returned to the BHOC for a blood test on Friday which confirmed that my immune system was as expected, as was my platelet count (which had previously given some concern). Accordingly, my PICC line was removed - something of a milestone. Ever watchful, the doctor picked up that my potassium level was lower than ideal so I've had to take some as a supplement.
Little by little over the next few weeks I should fully recover. At the 100 day point I will be further reviewed and I will be randomised to either continue without further medication, or to receive the trial drug as maintenance therapy. I will just have to wait and see. I will also be attending the BHOC roughly monthly for treatment called pentamidine which is an antimicrobial, administered by nebulizer, and should protect me from pneumonia whilst my immune system gets back to normal.
I wish everyone a very merry Christmas and a happy and healthy new year
Stephen
Sunday, 23 December 2018
Monday, 3 December 2018
Admission
3 December It was an early start this morning in order to attend my appointment at The Bristol Haematology and Oncology Centre (BHOC). I had my Peripheral Inserted Central Catheter (PICC) line installed. This is a relatively painless procedure which involves finding a suitable vein in my arm and then passing a double tube to just above my heart. It was most encouraging to have this done by the nurse who performed the same process for me 6 years ago ! The technology which is used now has changed and no longer requires an X-ray to check the positioning. The PICC will now be used for all blood tests and for infusion of all medications and my stem cells. This saves becoming a pin cushion !
Then it was up to the ward where I was admitted, had blood samples taken, and then allowed to go home. They didn't wish to start my chemo treatment today ! Poor Margaret will therefore have to take me back again.
Tuesday 4th
Again admitted to ward, documented, yet more blood tests and allocated a bed in a two man room. Once my immune system deteriorates, I will be moved into a single room. Meanwhile, food remarkably good!
Wednesday 5th Day -1
Started at 7am with yet more blood tests. The night had been 'OK' given a less than comfy bed! As expected, most of the morning has been in preparation for the Chemo. This involved being infused with 2 litres of saline. After lunch came the Chem called melphalan, followed by yet more saline. The intention is to ensure that I was fully hydrated. The significance of the PICC is now clear. All this fluid is infused via the PICC. Problem is fluid in is fluid out, and the nurses need to measure this. I leave the rest to your imagination! Tomorrow will be the first day when my stems are returned....
Thursday 6th - Day 0
Had to wait until after 24 hours from Melphalan so stem cells started at about 2-30pm and lasted to almost 8pm. I received multiple premeds including Pethadine and Piriton the effect of which was to make me feel tired. Stem cells arrived frozen in liquid nitrogen in a flask looking like an undernourished dalek! One by one each had to be checked by TWO nurses to make sure they were mine. Then each bag had to be defrosted in a water bath. Finally one by one each bag was connected to a pump and thus into my PICC line.
By the end of 10 bags I was pretty well exhausted and my blood pressure has risen only to slowly settle back later that evening and through the night. Not only was I tired but so must the nurse who managed the process. She only just managed to leave the ward at her alloted time - she must have been exhausted. From everyone fantastic care. I can't fault world-class treatment.
Friday 7th - day 1
Moved from a 2 bed bay into my own room in preparation for when I become neutropenic (inability to fight infection). In the afternoon had the remaining two bags of stem cells infused so I've now had the lot ! Initial indications are that I will be allowed home - but must return prior to becoming neutropenic of course. Feeling much better than I did last evening and my observations (blood pressure etc) are good. My daily blood tests are showing the effects of the melphalan though !
Saturday 8th - Day 2
Allowed to go home until Monday. Release from ward delayed due to need for medications be prescribed. Large bag of tablets eventually appeared. In the middle of waiting, the decision was taken to move me to yet another room (my third!).
Arriving home was bliss - a strange sense of normality.
Sunday 9th - Day 3
A relaxing day with only a few emails to catch up on a generally just glad to be home.
Monday 10th - Day 4
Margaret drove me back to the BHOC arriving about 10am. On arrival on the ward, I was welcomed by so many of the staff. Soon my observations were taken (OK), then blood tests, and a visit by one of the doctors. I'm certainly being looked after. Noted that I've lost some weight. Tonight will be the first in this room. It is much bigger then usual capable of accommodating two double beds! Needless to say I only get a 3 foot hospital bed. The room is well furnished and even has an exercise bike. There is another device with pedals but its purpose is unclear. I of course have my own en suite bathroom (wet room no less). I also have an excellent view. Perhaps the most significant feature is that entrance is though an airlock door. This may be to reduce the risk of infection, or that the preservative used with my stem cells makes me smell of sweet corn! Interestingly, I can't detect it.
Tuesday 11th - Day 5
Further indications of mucocitis. Nose containing blood clots, mouth roughening but not yet sore, and runny tummy very apparent. All this confirmed by my blood test results which show a continued slide to neutropenia. Expect it tomorrow! I'm so lucky to have such caring nurses - even if I get woken at 3am for observations!
Wednesday 12th - Day 6
Much to schedule I have become neutropenic and may now expect an infection. Everything much the same. Feeling listless, sleepy and subject to runny tummy. I keep reminding myself it will all be worthwhile.
Conclusion
The doctor expressed concern that my platelet level had not stabilised so I will need to attend the day unit on Friday. All being well a simple blood test will confirm everything is OK. I can then have my PICC removed and celebrate a quiet Christmas at home. All in all despite this being a second transplant which was expected to be a harder ride, I only spent a total of 14 day in hospital. My memory will one of world class treatment and amazing care. Thanks BHOC !
 |
| The two connections make it possible to have simultaneous infusions. |
Tuesday 4th
Again admitted to ward, documented, yet more blood tests and allocated a bed in a two man room. Once my immune system deteriorates, I will be moved into a single room. Meanwhile, food remarkably good!
Wednesday 5th Day -1
Started at 7am with yet more blood tests. The night had been 'OK' given a less than comfy bed! As expected, most of the morning has been in preparation for the Chemo. This involved being infused with 2 litres of saline. After lunch came the Chem called melphalan, followed by yet more saline. The intention is to ensure that I was fully hydrated. The significance of the PICC is now clear. All this fluid is infused via the PICC. Problem is fluid in is fluid out, and the nurses need to measure this. I leave the rest to your imagination! Tomorrow will be the first day when my stems are returned....
Thursday 6th - Day 0
Had to wait until after 24 hours from Melphalan so stem cells started at about 2-30pm and lasted to almost 8pm. I received multiple premeds including Pethadine and Piriton the effect of which was to make me feel tired. Stem cells arrived frozen in liquid nitrogen in a flask looking like an undernourished dalek! One by one each had to be checked by TWO nurses to make sure they were mine. Then each bag had to be defrosted in a water bath. Finally one by one each bag was connected to a pump and thus into my PICC line.
 |
| Bag of stem cells looking like strawberry sorbet! |
By the end of 10 bags I was pretty well exhausted and my blood pressure has risen only to slowly settle back later that evening and through the night. Not only was I tired but so must the nurse who managed the process. She only just managed to leave the ward at her alloted time - she must have been exhausted. From everyone fantastic care. I can't fault world-class treatment.
Friday 7th - day 1
Moved from a 2 bed bay into my own room in preparation for when I become neutropenic (inability to fight infection). In the afternoon had the remaining two bags of stem cells infused so I've now had the lot ! Initial indications are that I will be allowed home - but must return prior to becoming neutropenic of course. Feeling much better than I did last evening and my observations (blood pressure etc) are good. My daily blood tests are showing the effects of the melphalan though !
Saturday 8th - Day 2
Allowed to go home until Monday. Release from ward delayed due to need for medications be prescribed. Large bag of tablets eventually appeared. In the middle of waiting, the decision was taken to move me to yet another room (my third!).
Arriving home was bliss - a strange sense of normality.
Sunday 9th - Day 3
A relaxing day with only a few emails to catch up on a generally just glad to be home.
Monday 10th - Day 4
Margaret drove me back to the BHOC arriving about 10am. On arrival on the ward, I was welcomed by so many of the staff. Soon my observations were taken (OK), then blood tests, and a visit by one of the doctors. I'm certainly being looked after. Noted that I've lost some weight. Tonight will be the first in this room. It is much bigger then usual capable of accommodating two double beds! Needless to say I only get a 3 foot hospital bed. The room is well furnished and even has an exercise bike. There is another device with pedals but its purpose is unclear. I of course have my own en suite bathroom (wet room no less). I also have an excellent view. Perhaps the most significant feature is that entrance is though an airlock door. This may be to reduce the risk of infection, or that the preservative used with my stem cells makes me smell of sweet corn! Interestingly, I can't detect it.
Tuesday 11th - Day 5
Further indications of mucocitis. Nose containing blood clots, mouth roughening but not yet sore, and runny tummy very apparent. All this confirmed by my blood test results which show a continued slide to neutropenia. Expect it tomorrow! I'm so lucky to have such caring nurses - even if I get woken at 3am for observations!
Wednesday 12th - Day 6
Much to schedule I have become neutropenic and may now expect an infection. Everything much the same. Feeling listless, sleepy and subject to runny tummy. I keep reminding myself it will all be worthwhile.
 |
| My enormous room complete with exercise bike |
 |
| and my en suite wet room |
Thursday 13th - Day 7
Little has changed but I had an extra blood sample taken for type cross-match.
Blood result continue to show the effects of the chemo. As yet no serious infection.
Friday 14th - Day 8
Received the platelet infusion during the evening to hopefully protect me from any bleeding. Continue to receive GCSF growth factor to encourage the stem cells to engraft and thus recommence their job.
Saturday 15th - Day 9
Seem to be feeling a little better. Doctor expressed concern about raised CRP in blood test. Might suggest impending infection.
Sunday 16th - Day 10
Eating better today. Doctor pleased to note that my CRP had reduced. Might not get the infection. Doctor noted further signs of platelet deficiency so received another infusion in afternoon. In evening discovered hair becoming loosened - entirely predictable though!
Monday 17th -Day 11
At this morning's doctor round I received the extraordinary news that, all being well, I will be discharged tomorrow afternoon. This will be subject to a predicted rise in my neutrophils. I can't wait ! In the afternoon I was honoured to receive a visit by my consultant. Life's good.
Tuesday 18th - Day 12
Details of my morning blood test finally came back and with the very good news that I am no longer neutropenic. The change in 24 hours is remarkable. Margaret battled her way through the squally rain, collected me and then battle us home. After a cup of tea, she kindly shaved off my hair. What a relief, no more hair on my pillow!
Saturday 15th - Day 9
Seem to be feeling a little better. Doctor expressed concern about raised CRP in blood test. Might suggest impending infection.
Sunday 16th - Day 10
Eating better today. Doctor pleased to note that my CRP had reduced. Might not get the infection. Doctor noted further signs of platelet deficiency so received another infusion in afternoon. In evening discovered hair becoming loosened - entirely predictable though!
Monday 17th -Day 11
At this morning's doctor round I received the extraordinary news that, all being well, I will be discharged tomorrow afternoon. This will be subject to a predicted rise in my neutrophils. I can't wait ! In the afternoon I was honoured to receive a visit by my consultant. Life's good.
Tuesday 18th - Day 12
Details of my morning blood test finally came back and with the very good news that I am no longer neutropenic. The change in 24 hours is remarkable. Margaret battled her way through the squally rain, collected me and then battle us home. After a cup of tea, she kindly shaved off my hair. What a relief, no more hair on my pillow!
Conclusion
The doctor expressed concern that my platelet level had not stabilised so I will need to attend the day unit on Friday. All being well a simple blood test will confirm everything is OK. I can then have my PICC removed and celebrate a quiet Christmas at home. All in all despite this being a second transplant which was expected to be a harder ride, I only spent a total of 14 day in hospital. My memory will one of world class treatment and amazing care. Thanks BHOC !
Friday, 30 November 2018
First Randomisation
Since my last post, life has been somewhat fraught. I had two tests to be completed being lung function and a echocardiogram. These went well confirming that my lungs and heart are in good health prior to further treatment.
On Monday, I had to provide a last blood test to check, amongst other things, that my paraprotein level (a measure of myeloma activity) was within the specified limits of the Myeloma XII trial. Having been stable for some time at a count of 6, it had risen to 11 and thus, apparently, beyond the limits. I'm not entirely surprised because I'd been off any treatment for a month but this could have reduced my treatment options. Yesterday I returned for a further test and fortunately the count is now 10 and within the limits thus allowing the next stage to proceed. Any research of myeloma will show how patients suddenly find that there are fewer options so initially to be told that I might not be able to continue in the trial was very worrying. This affects not just me but also Margaret and our two sons. Over the last week both Chis and then Nick have found time in their own busy lives to travel up and see us. It has been so good to see them. Thanks guys.
This morning, my trials nurse phoned to confirm the result of my randomisation. At this stage in the trial, two options are possible; Firstly conventional high dose therapy, and secondly augmented high dose therapy. The latter includes the inclusion of the novel drug called Ixazomib. In the event my result is to receive conventional high dose therapy (with a drug called Melphalan) immediately followed by stem cell transplant. Accordingly, on Monday I have a clinic appointment for the installation of a central line called a PICC and then I should be admitted onto the ward for immediate high dose therapy.
It is my hope to that my next post will confirm my admission and then a day-by-day account of my hospital treatment.
KBO
Stephen
On Monday, I had to provide a last blood test to check, amongst other things, that my paraprotein level (a measure of myeloma activity) was within the specified limits of the Myeloma XII trial. Having been stable for some time at a count of 6, it had risen to 11 and thus, apparently, beyond the limits. I'm not entirely surprised because I'd been off any treatment for a month but this could have reduced my treatment options. Yesterday I returned for a further test and fortunately the count is now 10 and within the limits thus allowing the next stage to proceed. Any research of myeloma will show how patients suddenly find that there are fewer options so initially to be told that I might not be able to continue in the trial was very worrying. This affects not just me but also Margaret and our two sons. Over the last week both Chis and then Nick have found time in their own busy lives to travel up and see us. It has been so good to see them. Thanks guys.
This morning, my trials nurse phoned to confirm the result of my randomisation. At this stage in the trial, two options are possible; Firstly conventional high dose therapy, and secondly augmented high dose therapy. The latter includes the inclusion of the novel drug called Ixazomib. In the event my result is to receive conventional high dose therapy (with a drug called Melphalan) immediately followed by stem cell transplant. Accordingly, on Monday I have a clinic appointment for the installation of a central line called a PICC and then I should be admitted onto the ward for immediate high dose therapy.
It is my hope to that my next post will confirm my admission and then a day-by-day account of my hospital treatment.
As a rule, men worry more about what they can't see
than about what they can.
Julius Caesar
KBO
Stephen
Wednesday, 21 November 2018
Stem Cell Mobilisation & Collection
Firstly I again had the privilege to take part in the Lord Mayor's Remembrance Parade in Bristol. The public's attendance was truly extraordinary and the weather was kinder than last year. Recalling our trip to the battlefields of Belgium earlier this year helped me appreciate that the Great War ended 100 years ago to the day.
In respect of my myeloma, things have certainly moved on. I've had my pre-assessment appointment. This involved various tests to confirm my fitness to proceed eventually to high dose therapy. Later this week I will have my lung function check and echocardiogram. The doctor, satisfied with my health, prescribed me the G-CSF (growth factor) which stimulates the excess development of my stem cells. These then migrate into my blood stream for collection. This is known as mobilisation. Since at my previous treatment 6 years ago, when the mobilisation was not has good as hoped, I was this time prescribed a very expensive drug called Plerixafor.
My mobilisation thus required that I self-inject G-CSF on four consecutive evenings each at 6pm. On the fourth evening I was to attend the Bristol Haematology and Oncology Centre (BHOC) to receive the Plerixafor at 10pm. There was a slight risk that I might be kept in the ward if I reacted. I wanted to minimise the number of journeys my wife Margaret would need to support me with, so I agreed to stay in a hotel on the fourth night.
The following day I attended the apheresis unit at the BHOC. Blood was taken from the vein in one arm, filtered for the stem cells, and then returned to me through the other arm. The process takes about four hours and can make at least one arm very sore. At the start of the process, blood samples are taken one of which is subject to a test called CD34+ which measures the potential for stem cell harvest. My result was a disappointing 34.1. Later that day I was phoned to say that, of the 2 million cells per kilogram of body weight needed for transplant, only 1.84 million had been collected.
Thus, later that evening, I again self-injected G-CSF and travelled to the BHOC to again receive Plerixafor. I was now costing the NHS a severe amount of money! Margaret insisted that I sleep at home that night so took me to Bristol that evening, returning me the next day and collecting me after a further spell on apheresis. The result of the second collection was 0.89 million. I now have sufficient stems cells which have been processed and then stored in liquid nitrogen at the NHS Blood and Transplant centre at Filton.
Ahead of me now are the final two tests to confirm my health; a lung function test, and an echocardiogram. Assuming everything is OK, I will the be randomised within the Myeloma XII trial and then admitted for high dose therapy and stem cell transplant. I anticipate that the loading on the ward will be the deciding factor on the date.
I have so many people to thank. Firstly to Margaret who so cheerfully drove me to the various appointments and made sure that I was as comfortable as possible at home. Secondly to the transplant coordinator who made sure that I was checked, prescribed, booked into apheresis and that my stems cells were processed in the alloted time. Thirdly the team in the BHOC apheresis unit were terrific. They answered all my questions, they kept me updated on what can seem a very long process, made me as comfortable as possible, and ensured that my health was maintained. "Cheerful and professional".
Given the intensity of the treatment I am now receiving it seem only right to sign off, as I have previously done, with a acronym associated with Winston Churchill. I leave it to you to Google its meaning!
KBO
Stephen
In respect of my myeloma, things have certainly moved on. I've had my pre-assessment appointment. This involved various tests to confirm my fitness to proceed eventually to high dose therapy. Later this week I will have my lung function check and echocardiogram. The doctor, satisfied with my health, prescribed me the G-CSF (growth factor) which stimulates the excess development of my stem cells. These then migrate into my blood stream for collection. This is known as mobilisation. Since at my previous treatment 6 years ago, when the mobilisation was not has good as hoped, I was this time prescribed a very expensive drug called Plerixafor.
My mobilisation thus required that I self-inject G-CSF on four consecutive evenings each at 6pm. On the fourth evening I was to attend the Bristol Haematology and Oncology Centre (BHOC) to receive the Plerixafor at 10pm. There was a slight risk that I might be kept in the ward if I reacted. I wanted to minimise the number of journeys my wife Margaret would need to support me with, so I agreed to stay in a hotel on the fourth night.
The following day I attended the apheresis unit at the BHOC. Blood was taken from the vein in one arm, filtered for the stem cells, and then returned to me through the other arm. The process takes about four hours and can make at least one arm very sore. At the start of the process, blood samples are taken one of which is subject to a test called CD34+ which measures the potential for stem cell harvest. My result was a disappointing 34.1. Later that day I was phoned to say that, of the 2 million cells per kilogram of body weight needed for transplant, only 1.84 million had been collected.
Thus, later that evening, I again self-injected G-CSF and travelled to the BHOC to again receive Plerixafor. I was now costing the NHS a severe amount of money! Margaret insisted that I sleep at home that night so took me to Bristol that evening, returning me the next day and collecting me after a further spell on apheresis. The result of the second collection was 0.89 million. I now have sufficient stems cells which have been processed and then stored in liquid nitrogen at the NHS Blood and Transplant centre at Filton.
Ahead of me now are the final two tests to confirm my health; a lung function test, and an echocardiogram. Assuming everything is OK, I will the be randomised within the Myeloma XII trial and then admitted for high dose therapy and stem cell transplant. I anticipate that the loading on the ward will be the deciding factor on the date.
I have so many people to thank. Firstly to Margaret who so cheerfully drove me to the various appointments and made sure that I was as comfortable as possible at home. Secondly to the transplant coordinator who made sure that I was checked, prescribed, booked into apheresis and that my stems cells were processed in the alloted time. Thirdly the team in the BHOC apheresis unit were terrific. They answered all my questions, they kept me updated on what can seem a very long process, made me as comfortable as possible, and ensured that my health was maintained. "Cheerful and professional".
Given the intensity of the treatment I am now receiving it seem only right to sign off, as I have previously done, with a acronym associated with Winston Churchill. I leave it to you to Google its meaning!
KBO
Stephen
Wednesday, 24 October 2018
Onwards !
Since my last post, little has happened but there has been a significant change regarding my myeloma treatment.
During cycle 5, which is just ending, I was phoned by my trials nurse and told that the paraprotein count at the end of cycle 4 was still at 6. It has remained at 6 for 3 cycles thus confirming that I have plateaued. This being the case, there is no benefit in continuing onto cycle 6. At today's clinic appointment, my consultant confirmed this situation. This is excellent news as the side effects were certainly hard going at times. It is necessary now to check what effect, if any, the 5 cycles have had. Accordingly later this week I have the renewed pleasure of yet another bone marrow biopsy - oh joy!
Also at the clinic, my belief that I do not have any stem cells in storage was confirmed. In preparation for stem cell transplant, I will need stem cell harvesting preceded with mobilisation. Last time it proved difficult to harvest stem cells from me (hence the lack of spares now!) so I will be given an extra medication called Plerixafor.
It is perhaps worth listing what is now ahead:
- Bone Marrow Biopsy (to check for any effect from the 5 re-induction cycles)
- Echo Cardiogram and Lung Function tests (to confirm my health before proceeding)
- Mobilisation (involves self-injection of growth hormone and nurse administered Plerixafor in order to cause stem cells to circulate from the bone marrow and into the blood stream)
- Harvesting (one or more days connected to a machine to recover stems cells from my blood stream)
- Randomisation (to determine which of two paths - either standard transplant or enhanced with the trial drug Ixazomib)
- Final checks of my health then ....
- Installation of a central line (this is a tube into a major vein through which multiple medications can be administered, thus saving injections. At Bristol it is normal to have a PICC line which has two tubes; one for introduction of medications and one for blood sampling)
- Admission for High Dose Therapy and Stem Cell Transplant (I expect this to happen in early December and last for about two weeks)
- Period of recovery (after discharge my immune system will be somewhat weakened. Recovery can take several weeks, even months). It is to be expected that recovery will be over the Christmas period which, this year, will be rather "peaceful" !
- Further randomisation (to determine whether I receive maintenance therapy with Ixazomib - or not)
All this may seem daunting. Firstly, I've previously had HDT&SCT so I know what is coming. Secondly I only have to do one thing at a time. Thirdly and most importantly, it is the best possible treatment I can receive in order to control my myeloma. I am most grateful that my health and circumstances make it possible.
During cycle 5, which is just ending, I was phoned by my trials nurse and told that the paraprotein count at the end of cycle 4 was still at 6. It has remained at 6 for 3 cycles thus confirming that I have plateaued. This being the case, there is no benefit in continuing onto cycle 6. At today's clinic appointment, my consultant confirmed this situation. This is excellent news as the side effects were certainly hard going at times. It is necessary now to check what effect, if any, the 5 cycles have had. Accordingly later this week I have the renewed pleasure of yet another bone marrow biopsy - oh joy!
Also at the clinic, my belief that I do not have any stem cells in storage was confirmed. In preparation for stem cell transplant, I will need stem cell harvesting preceded with mobilisation. Last time it proved difficult to harvest stem cells from me (hence the lack of spares now!) so I will be given an extra medication called Plerixafor.
It is perhaps worth listing what is now ahead:
- Bone Marrow Biopsy (to check for any effect from the 5 re-induction cycles)
- Echo Cardiogram and Lung Function tests (to confirm my health before proceeding)
- Mobilisation (involves self-injection of growth hormone and nurse administered Plerixafor in order to cause stem cells to circulate from the bone marrow and into the blood stream)
- Harvesting (one or more days connected to a machine to recover stems cells from my blood stream)
- Randomisation (to determine which of two paths - either standard transplant or enhanced with the trial drug Ixazomib)
- Final checks of my health then ....
- Installation of a central line (this is a tube into a major vein through which multiple medications can be administered, thus saving injections. At Bristol it is normal to have a PICC line which has two tubes; one for introduction of medications and one for blood sampling)
- Admission for High Dose Therapy and Stem Cell Transplant (I expect this to happen in early December and last for about two weeks)
- Period of recovery (after discharge my immune system will be somewhat weakened. Recovery can take several weeks, even months). It is to be expected that recovery will be over the Christmas period which, this year, will be rather "peaceful" !
- Further randomisation (to determine whether I receive maintenance therapy with Ixazomib - or not)
All this may seem daunting. Firstly, I've previously had HDT&SCT so I know what is coming. Secondly I only have to do one thing at a time. Thirdly and most importantly, it is the best possible treatment I can receive in order to control my myeloma. I am most grateful that my health and circumstances make it possible.
Stem cell research can revolutionise medicine,
more than anything since antibiotics.
Ron Reagan
Keep well
Stephen
Wednesday, 3 October 2018
Chemo Days
It occurs to me that whilst my usual posts explain my day-to-day-life, they don't give many details of my experiences regarding the various medications that constitute my current treatment - my "chemos".
I'm currently prescribed three drugs for this phase, called re-induction, of the Myeloma XII trial;
The trial is all about Ixazomib. This I take on days 1, 8 and 15. This cycle started without stock so day 1 was missed. I now have stock so will take today and day 15. I'm not aware that I have any side effects from Ixazomib.
The next drug, perhaps surprisingly, is Thalidomide which I take every day. This caused terrible birth defects during the 1950s and 60s. It is now recognised as having anti-cancer properties. One of the side effects is to cause tiredness which I do experience and one information leaflet recommends avoiding alcohol because of this. Since I started the trial, over 4 months ago, I have abstained from alcohol. When this is over I will do my best to catch up ! In the meantime I certainly often feel very tired and lethargic.
The third drug is dexamethazone. This is a steroid which I take on days 1, 8, 15 and 22. The trial requires that I take 40mg each time but it is supplied as 2mg tablets. Yes, on each of these four days I take 20 small tablets which taste very bitter.
The certain side effect of dexamethasone is insomnia. Pretty well without exception, having taken it I will not sleep much that night, despite feeling tired due to Thalidomide. That means that Thursdays are pretty much a right-off.
Fridays, Saturdays and sometimes Sundays are characterised by constipation. I can't be sure which of the drugs causes this but probably the dexamethasone or it may be the combination. The effect is quite severe and whilst it is on-going I feel generally unwell and light-headed. As if these various side effects are quite enough, I also experience tinnitus which sounds like a high-pitched hiss of varying amplitude.
To summarise then Thursdays - Tired having not slept. Fridays, Saturdays, and some Sundays constipated and generally unwell. Mondays, Tuesdays and Wednesdays somewhat tired and light-headed but my best days.
I'm currently on cycle 5 and must endure these effects to the end of cycle 6 towards the end of November. My consultant prescribes various other drugs to minimise the side effects. It does seem that the effects are getting more significant - perhaps cumulative?
I see this as an investment and I do my best to swim through the treacle. It is to be hoped that, when re-induction is completed, I will feel my usual self again and ready for the next stage of treatment - stem cell mobilization and harvest.
I'm currently prescribed three drugs for this phase, called re-induction, of the Myeloma XII trial;
The trial is all about Ixazomib. This I take on days 1, 8 and 15. This cycle started without stock so day 1 was missed. I now have stock so will take today and day 15. I'm not aware that I have any side effects from Ixazomib.
The next drug, perhaps surprisingly, is Thalidomide which I take every day. This caused terrible birth defects during the 1950s and 60s. It is now recognised as having anti-cancer properties. One of the side effects is to cause tiredness which I do experience and one information leaflet recommends avoiding alcohol because of this. Since I started the trial, over 4 months ago, I have abstained from alcohol. When this is over I will do my best to catch up ! In the meantime I certainly often feel very tired and lethargic.
The third drug is dexamethazone. This is a steroid which I take on days 1, 8, 15 and 22. The trial requires that I take 40mg each time but it is supplied as 2mg tablets. Yes, on each of these four days I take 20 small tablets which taste very bitter.
 |
| 20 Dexamethasone Tablets |
Fridays, Saturdays and sometimes Sundays are characterised by constipation. I can't be sure which of the drugs causes this but probably the dexamethasone or it may be the combination. The effect is quite severe and whilst it is on-going I feel generally unwell and light-headed. As if these various side effects are quite enough, I also experience tinnitus which sounds like a high-pitched hiss of varying amplitude.
To summarise then Thursdays - Tired having not slept. Fridays, Saturdays, and some Sundays constipated and generally unwell. Mondays, Tuesdays and Wednesdays somewhat tired and light-headed but my best days.
I'm currently on cycle 5 and must endure these effects to the end of cycle 6 towards the end of November. My consultant prescribes various other drugs to minimise the side effects. It does seem that the effects are getting more significant - perhaps cumulative?
I see this as an investment and I do my best to swim through the treacle. It is to be hoped that, when re-induction is completed, I will feel my usual self again and ready for the next stage of treatment - stem cell mobilization and harvest.
Keep well
Stephen
Wednesday, 26 September 2018
Fifth Re-induction Cycle
This week's consultant appointment confirmed my expectation that I will receive both cycles 5 and 6. This is due to my response to the treatment and this was confirmed with my latest paraprotein count of 6 at the end of cycle 3. Being the same as the count at the end of cycle 2, this indicates that I am now in plateau. I was accordingly prescribed for cycle 5. Now that produced an interesting situation as, when I went to collect my medications, the trial drug (Ixazomib) was not available. There had been a supply problem. Ixazomib is taken on days 1, 8 and 15 so it was agreed that I would miss it on day 1. It is to be hoped that I will have received stock in time for day 8.
Since the last my last post, Margaret and I have returned to Cyprus. This is the first trip since we sold our holiday home 18 months ago. I had discussed the timing of the trip with medical team and it was agreed that during cycle 4 would be the best. This, of course, meant that the temperature in Cyprus would still be rather higher than we would have preferred. In the event, it was 30 degrees every day! Margaret had found excellent accommodation which proved very comfortable. It was especially good to meet up with ex-patriot friends and to see some of the Cypriots that we had come to know so well. We took the opportunity to re-visit many of the restaurants that were so much of our life.
This picture show the Kyrenia Beach Restaurant on Avdimou Beach. This is most definitely not on the tourist trail. Instead the restaurant is known to a fairly select group of customers and the beach is the favourite haunt of kite surfers.
The only down side of the trip was the significant delay on the return flight of 2 hours 57 minutes. Thanks easyJet ! But then there is a well-known saying:
Since the last my last post, Margaret and I have returned to Cyprus. This is the first trip since we sold our holiday home 18 months ago. I had discussed the timing of the trip with medical team and it was agreed that during cycle 4 would be the best. This, of course, meant that the temperature in Cyprus would still be rather higher than we would have preferred. In the event, it was 30 degrees every day! Margaret had found excellent accommodation which proved very comfortable. It was especially good to meet up with ex-patriot friends and to see some of the Cypriots that we had come to know so well. We took the opportunity to re-visit many of the restaurants that were so much of our life.
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| Kyrenia Beach Restaurant |
The only down side of the trip was the significant delay on the return flight of 2 hours 57 minutes. Thanks easyJet ! But then there is a well-known saying:
Time to spare - go by air
Keep cheerful and keep well
Stephen
Saturday, 1 September 2018
Fourth Re-induction Cycle
This week I again visited my consultant and have been prescribed for the fourth re-induction cycle. I was also told that my paraprotein level at the end of cycle 2 (remember that it is necessary to wait for test results) had fallen to 6. This was both good and, perhaps, not-so-good news. The good news is that I have continued to respond to the re-induction medications and that I have now more than halved my starting level which was 13. The not-so-good news resulted from a discussion with the consultant, the upshot of which is that I will not complete re-induction after cycle four. Realistically I will probably need the maximum number of six cycles. This will mean that this stage of treatment will probably continue until the end of November. It also means that I am probably only half way through ! I must, of course be thankful that I am responding and that the side effects, whilst challenging at times, are tolerable. I could be in a much worse place.
Since the meeting I've received notification that I have an extra appointment one week after the end of cycle number 6. I can only guess but given the timing, it would seem likely that I will be scheduled for stem cell mobilisation and harvesting before Christmas and then be admitted for transplant in the new year. I am so impatient.
Since my last post very little has happened but most notably our elder son and our grandson visited for a weekend. It is always a joy to see them and we really do appreciate the efforts of both our sons when they travel from the Bournemouth area.
Since the meeting I've received notification that I have an extra appointment one week after the end of cycle number 6. I can only guess but given the timing, it would seem likely that I will be scheduled for stem cell mobilisation and harvesting before Christmas and then be admitted for transplant in the new year. I am so impatient.
Since my last post very little has happened but most notably our elder son and our grandson visited for a weekend. It is always a joy to see them and we really do appreciate the efforts of both our sons when they travel from the Bournemouth area.
We must accept finite disappointment,
but never lose infinite hope.
Martin Luther King Jnr.
Keep well
Stephen
Thursday, 2 August 2018
Third Re-induction Cycle
Earlier this week I attended my consultant's clinic and received the good news that my myeloma is responding to treatment. As I started the cycle number 1, my paraprotein count was 13. At the end of the cycle the count had reduced to 8. Because the result of paraprotein testing is not known for about two weeks, I won't know the result of cycle 2 until my next appointment. The news is good and makes the various side-effects worth tolerating. Importantly, I was prescribed for cycle number 3.
I continue with my usual cheerful demeanour and decided I needed a project to keep me inspired (and perhaps a little busy).
A long time ago I owned a Mark 1 (Frog-eyed) Sprite and enjoyed driving it around the country roads of my then home in Yorkshire. Much later I had my first sight of a Mazda MX5 and wondered if perhaps I might one day own one. This is a 2003 model with a 1840 cc engine developing 146 BHP. It does have a number of jobs which need attention and I relish the opportunity to make the necessary improvements.
Our family has the habit of applying names to inanimate objects and this would be no exception. I decided that, as I hope the MX5 will be a trusted servant, it should take the name of a butler. I decided on the name of Brabinger who was butler to Audrey Fforbes-Hamilton in the TV series "To the Manor Born". This purchase can perhaps be seen as a sign of my confidence in my future. Its care and maintenance will certainly keep me busy!
At a very enjoyable social event last evening it was suggested that I have a "glass half full" attitude rather than "glass half empty". I corrected the suggestion by pointing out that as an engineer I considered the glass to be the wrong size!
I continue with my usual cheerful demeanour and decided I needed a project to keep me inspired (and perhaps a little busy).
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| My new toy |
Our family has the habit of applying names to inanimate objects and this would be no exception. I decided that, as I hope the MX5 will be a trusted servant, it should take the name of a butler. I decided on the name of Brabinger who was butler to Audrey Fforbes-Hamilton in the TV series "To the Manor Born". This purchase can perhaps be seen as a sign of my confidence in my future. Its care and maintenance will certainly keep me busy!
At a very enjoyable social event last evening it was suggested that I have a "glass half full" attitude rather than "glass half empty". I corrected the suggestion by pointing out that as an engineer I considered the glass to be the wrong size!
Keep well
Stephen
Tuesday, 10 July 2018
Second Re-induction Cycle
Last week I attended my consultant's clinic and, everything being OK, I was prescribed for the second re-induction cycle. Accordingly I came home with fresh stocks of Ixazomib, Dexamethasone and Thalidomide. Also in the pack were the various medications intended to control side effects.
The first cycle was characterised by recognisable side effects. The Dexamethason, which is taken on days 1,8, 15 and 22 resulted in insomnia for at least one night each. The Thalidomide, which is taken each day, seems to be the cause of what I will describe as light-headedness. I have been taking this at night and now propose to take it earlier in the evening to try to bring the effect forward.
Overall I seem to have less energy and I'm more prone to needing an afternoon nap. And all this now without any alcohol ! What drives me is the recognition that the last clinical trial resulted in 6 years of being relatively treatment free. I can only hope that investing some effort now will produce a similar effect.
Last month the family came together for a Ken (barbecue) put on by our elder son to celebrate our younger son's birthday. The weather was, of course, fantastic and it was so good to get everyone together and so happy.
The Royal Air Force is 100 years old this year. I recently had the great pleasure to attend the Cosford Airshow with a very good friend and my younger son. Today the centenary has been marked with a service in Westminster Abbey, the presentation of a new colour, and the largest flypast since the second world war. It came as something of a shock to me to realise that having served for 23 years, I had been associated for almost a quarter of the life of the service. I thought it only right to show my 'colours' to my neighbours this week by flying an RAF Ensign !
It occurs to me that the Royal Air Force motto: Per Ardua ad Astra (which variously translates as "Through struggle or adversity to the stars") can also be applied to myeloma where investment in treatment can result in a positive outcome. So....
The first cycle was characterised by recognisable side effects. The Dexamethason, which is taken on days 1,8, 15 and 22 resulted in insomnia for at least one night each. The Thalidomide, which is taken each day, seems to be the cause of what I will describe as light-headedness. I have been taking this at night and now propose to take it earlier in the evening to try to bring the effect forward.
Overall I seem to have less energy and I'm more prone to needing an afternoon nap. And all this now without any alcohol ! What drives me is the recognition that the last clinical trial resulted in 6 years of being relatively treatment free. I can only hope that investing some effort now will produce a similar effect.
Last month the family came together for a Ken (barbecue) put on by our elder son to celebrate our younger son's birthday. The weather was, of course, fantastic and it was so good to get everyone together and so happy.
The Royal Air Force is 100 years old this year. I recently had the great pleasure to attend the Cosford Airshow with a very good friend and my younger son. Today the centenary has been marked with a service in Westminster Abbey, the presentation of a new colour, and the largest flypast since the second world war. It came as something of a shock to me to realise that having served for 23 years, I had been associated for almost a quarter of the life of the service. I thought it only right to show my 'colours' to my neighbours this week by flying an RAF Ensign !
It occurs to me that the Royal Air Force motto: Per Ardua ad Astra (which variously translates as "Through struggle or adversity to the stars") can also be applied to myeloma where investment in treatment can result in a positive outcome. So....
Per Ardua ad Astra
Keep well
Stephen
Wednesday, 6 June 2018
OnTrial ....
.... and not in a legal sense !
Yesterday, I attended my consultant's clinic and was prescribed for my new clinical trial: Myeloma XII. I thus returned home with a carrier bag containing multiple medications. Only three (Ixazomib, Thalidomide, and Dexamethasone) are the actual trial drugs. All the others are to minimise side effects. It was clear that I needed to take some drugs in the morning and Thalidomide in particular at night.
It might seem strange but I am content to now be on the trial. It is a recognition that the myeloma has relapsed. It means regular (monthly) clinic appointments, no more qualification tests, and above all progress. Over the last few weeks I have been subject to so many tests. Many of these are very expensive and require considerable expertise. I am indebted to the NHS and to all the personnel with whom I have come into contact with.
Yesterday, I attended my consultant's clinic and was prescribed for my new clinical trial: Myeloma XII. I thus returned home with a carrier bag containing multiple medications. Only three (Ixazomib, Thalidomide, and Dexamethasone) are the actual trial drugs. All the others are to minimise side effects. It was clear that I needed to take some drugs in the morning and Thalidomide in particular at night.
It might seem strange but I am content to now be on the trial. It is a recognition that the myeloma has relapsed. It means regular (monthly) clinic appointments, no more qualification tests, and above all progress. Over the last few weeks I have been subject to so many tests. Many of these are very expensive and require considerable expertise. I am indebted to the NHS and to all the personnel with whom I have come into contact with.
Health is the greatest gift,
contentment the greatest wealth....
Buddha
Keep well
Stephen
Monday, 28 May 2018
So Many Tests
In my last post I mentioned the intention that I would be recruited onto the Myeloma XII clinical trial. This trial has especially stringent eligibility criteria. Accordingly, recent weeks have been dominated with tests. The first was the aforementioned PET CT scan (more later), then a echocardiogram (an ultrasound check of heart function). Next came a lung volume and peak flow test. Both heart and lung reputedly good! Then bone marrow biopsy, multiple blood samples and urine sample all of which measure my condition on recruitment. I'm now feeling somewhat "prodded"!
Perhaps most importantly I have now been signed up for the trial. I think I need to qualify that by saying that this could depend of the outcome of my bronchoscopy.
I previously mentioned that the PET CT scan had identified "something" in a lung. Accordingly I received a further chest X-ray but its result was somewhat inconclusive. Accordingly I found myself subject to a bronchoscopy. This requires that a tube with light and camera is fed through my nose and into my lungs thus allowing a thorough visual check and possible biopsies. My nostril and throat were anaesthetised and I was also given a short acting anaesthetic. The latter was so effective that I knew nothing of the procedure and don't know what was found. I will have to wait to be told. Meanwhile I had a very sore nose and throat which resolved a few hours later.
Update 31st April - Received letter from respiratory consultant. The bronchoscopy did not identify anything sinister and no biopsies were taken. Wonderful news and hopefully I can now proceed with Myeloma XII trial.
It is perhaps worth explaining, from a patient's point-of-view, why I believe in clinical trials. Whilst there are undoubtedly altruistic considerations: participating may ultimately help other patients, there are very strong "selfish" reasons. The first consideration is whether you have confidence in the "standard" treatment(s). These were typically developed many years ago and will employ drugs that were available at that time. A trial potentially offers access to more modern drugs. Trials are divided into phases. In Phase 1 trials, the toxicity, tolerance and side effects of a drug are studied. In Phase 2 further studies about side effects are studied. In Phase 3, a much larger group of patients are involved and the aim is typically to compare the new drug with the traditional ones. Myeloma XII is a Phase 3 trial. It gives me access to a new drug called Ixazomib (you try to say it!). All participants receive it during initial treatment lasting 4 to 6 cycles (of 28 days each). Depending on randomisation I will then either have standard high dose therapy and stem cell transplant, or one augmented with Ixazomib. I will then be subject to further randomisation to decide whether I receive maintenance treatment with yet more Ixazomib. Inevitably trials like this require greater supervision by a consultant. This is needed to monitor response and any side effects. I personally prefer this extra supervision which for this trial requires monthly clinic appointments.
Now onto a rather more pleasurable subject. Since my last post, Margaret and I have been up to London. Our itinerary included a trip down the Thames and riding on the cable car, visiting the Imperial War Museum, and going to the Royal Albert Hall to watch the 75th Anniversary screening of the Dambusters film. But by far the highlight of our trip was being able to attend the Royal Garden Party at Buckingham Palace.
We were sponsored due to my involvement with the Magistrates Association, hence my lapel badge. I decided, however to wear my RAF tie in recognition of the Force's 100th anniversary this year. We were treated to views of the HM The Queen, HRH Prince Andrew, and HRH Prince Edward. It was truly an honour to be able to walk through the palace and into the extensive gardens. The weather was excellent as was the catering. This was undoubtedly one of life's memorable experiences.
Perhaps most importantly I have now been signed up for the trial. I think I need to qualify that by saying that this could depend of the outcome of my bronchoscopy.
I previously mentioned that the PET CT scan had identified "something" in a lung. Accordingly I received a further chest X-ray but its result was somewhat inconclusive. Accordingly I found myself subject to a bronchoscopy. This requires that a tube with light and camera is fed through my nose and into my lungs thus allowing a thorough visual check and possible biopsies. My nostril and throat were anaesthetised and I was also given a short acting anaesthetic. The latter was so effective that I knew nothing of the procedure and don't know what was found. I will have to wait to be told. Meanwhile I had a very sore nose and throat which resolved a few hours later.
Update 31st April - Received letter from respiratory consultant. The bronchoscopy did not identify anything sinister and no biopsies were taken. Wonderful news and hopefully I can now proceed with Myeloma XII trial.
It is perhaps worth explaining, from a patient's point-of-view, why I believe in clinical trials. Whilst there are undoubtedly altruistic considerations: participating may ultimately help other patients, there are very strong "selfish" reasons. The first consideration is whether you have confidence in the "standard" treatment(s). These were typically developed many years ago and will employ drugs that were available at that time. A trial potentially offers access to more modern drugs. Trials are divided into phases. In Phase 1 trials, the toxicity, tolerance and side effects of a drug are studied. In Phase 2 further studies about side effects are studied. In Phase 3, a much larger group of patients are involved and the aim is typically to compare the new drug with the traditional ones. Myeloma XII is a Phase 3 trial. It gives me access to a new drug called Ixazomib (you try to say it!). All participants receive it during initial treatment lasting 4 to 6 cycles (of 28 days each). Depending on randomisation I will then either have standard high dose therapy and stem cell transplant, or one augmented with Ixazomib. I will then be subject to further randomisation to decide whether I receive maintenance treatment with yet more Ixazomib. Inevitably trials like this require greater supervision by a consultant. This is needed to monitor response and any side effects. I personally prefer this extra supervision which for this trial requires monthly clinic appointments.
Now onto a rather more pleasurable subject. Since my last post, Margaret and I have been up to London. Our itinerary included a trip down the Thames and riding on the cable car, visiting the Imperial War Museum, and going to the Royal Albert Hall to watch the 75th Anniversary screening of the Dambusters film. But by far the highlight of our trip was being able to attend the Royal Garden Party at Buckingham Palace.
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| Well scrubbed to attend Buckingham Palace |
The person who has lived the most is not the one with the most years
but the one with the richest experiences
Jean-Jacques Rousseau
Keep well
Stephen
Wednesday, 2 May 2018
Thank You NHS
Since my last post life has been somewhat busy, and the last two days have been especially so.
Yesterday I attended my consultant's clinic. Surprisingly, despite the pain in my sternum, my on-the-day blood test results showed no deterioration. My paraprotein test (taken in April) actually showed a slight reduction from 13 to 11 !
My consultant had been ready to recruit me onto the Myeloma XII clinical trial. She had the documents ready and had booked me a bone marrow biopsy. Reading the report from my PET CT scan (18th April) she had to re-think. The scan had identified myeloma activity in my sternum. It had confirmed historic damages to my vertebrae. It had also found "something" in one of my lungs. The report author proposed two options. Firstly it could be an infection which would simply need treatment with antibiotic. Alternatively it could be cancerous and would require investigation. My consultant wisely took both courses. She prescribed antibiotic and is referring me to a respiratory consultant possibly requiring a bronchoscopy. Realising that this will delay recruitment to the trial, she contacted the radiotherapy lead doctor. Later, my chest was marked up and today I was given a single X-ray fraction of radiotherapy. This will hopefully relieve some of the pain and reduce the risk of bone damage. I have also been put back onto monthly doses of Zometa (starting on Friday!) which is an infusion to further limit bone damage. I now await the referral to the respiratory consultant and the prospect of a bronchoscopy - oh joy !
It was truly gratifying to see the positive involvement of so many people who are caring for me. Thank heavens for the NHS.
Margaret and I had our all-too-brief visit to Belgium. We travelled to London by train staying overnight before boarding the Eurostar to Lille. From there a coach took us across the (non-existing) border into Belgium and to our hotel in Bruges. We were to stay there, just off the main square, for three nights. Belgium is famous for superb food, a huge range of craft beers, and chocolate. I did not sample the chocolate !
The next day we had a walking tour of this very beautiful city with its magnificent architecture and quaint streets. It was, of course, a duty to be shown around a local brewery ! The day ended with a boat trip on Bruges' canal system taking in views of yet more beautiful scenes.
On the Friday the tour concentrated on World War 1. First we were taken to see the Tyne Cot Cemetery. This is the largest of the Commonwealth War Grave Commission's cemeteries with almost 12,000 graves and nearly 35,000 names of the missing. It was truly extraordinary to look at the surrounding countryside where nothing is over 100 years old, having been destroyed during World War 1. The scene of so many graves was deeply moving and leaves an indelible memory. We were taken to Ypres where the town had been utterly destroyed but has since been re-built. The Belgians saw fit to re-build their history rather than replace it with concrete monstrosities. Significant buildings were the Cathedral and the Cloth Hall; both beautifully restored. We were able to visit the Menin Gate where the names over 54,000 missing are inscribed. Sadly our schedule did not include attendance of the evening Last Post ceremony. The last visit of the day was to the Pashandaele Memorial Museum where we experienced recreated dugouts and trenches and viewed so many war artifacts.
Our last day started with a free morning when I was able to visit the Notre Dame cathedral and view Michelangelo's Madonna and Child which is carved in pure white marble.
The time then came to board our coach for the trip back to Lille, then the Eurostar to London and finally train back home.
Once home I was treated to the fact that our younger son had been hard at work having undertaken a considerable amount of gardening. Thank you so very much, Chris.
Yesterday I attended my consultant's clinic. Surprisingly, despite the pain in my sternum, my on-the-day blood test results showed no deterioration. My paraprotein test (taken in April) actually showed a slight reduction from 13 to 11 !
My consultant had been ready to recruit me onto the Myeloma XII clinical trial. She had the documents ready and had booked me a bone marrow biopsy. Reading the report from my PET CT scan (18th April) she had to re-think. The scan had identified myeloma activity in my sternum. It had confirmed historic damages to my vertebrae. It had also found "something" in one of my lungs. The report author proposed two options. Firstly it could be an infection which would simply need treatment with antibiotic. Alternatively it could be cancerous and would require investigation. My consultant wisely took both courses. She prescribed antibiotic and is referring me to a respiratory consultant possibly requiring a bronchoscopy. Realising that this will delay recruitment to the trial, she contacted the radiotherapy lead doctor. Later, my chest was marked up and today I was given a single X-ray fraction of radiotherapy. This will hopefully relieve some of the pain and reduce the risk of bone damage. I have also been put back onto monthly doses of Zometa (starting on Friday!) which is an infusion to further limit bone damage. I now await the referral to the respiratory consultant and the prospect of a bronchoscopy - oh joy !
It was truly gratifying to see the positive involvement of so many people who are caring for me. Thank heavens for the NHS.
Margaret and I had our all-too-brief visit to Belgium. We travelled to London by train staying overnight before boarding the Eurostar to Lille. From there a coach took us across the (non-existing) border into Belgium and to our hotel in Bruges. We were to stay there, just off the main square, for three nights. Belgium is famous for superb food, a huge range of craft beers, and chocolate. I did not sample the chocolate !
The next day we had a walking tour of this very beautiful city with its magnificent architecture and quaint streets. It was, of course, a duty to be shown around a local brewery ! The day ended with a boat trip on Bruges' canal system taking in views of yet more beautiful scenes.
On the Friday the tour concentrated on World War 1. First we were taken to see the Tyne Cot Cemetery. This is the largest of the Commonwealth War Grave Commission's cemeteries with almost 12,000 graves and nearly 35,000 names of the missing. It was truly extraordinary to look at the surrounding countryside where nothing is over 100 years old, having been destroyed during World War 1. The scene of so many graves was deeply moving and leaves an indelible memory. We were taken to Ypres where the town had been utterly destroyed but has since been re-built. The Belgians saw fit to re-build their history rather than replace it with concrete monstrosities. Significant buildings were the Cathedral and the Cloth Hall; both beautifully restored. We were able to visit the Menin Gate where the names over 54,000 missing are inscribed. Sadly our schedule did not include attendance of the evening Last Post ceremony. The last visit of the day was to the Pashandaele Memorial Museum where we experienced recreated dugouts and trenches and viewed so many war artifacts.
 |
| The Menin Gate in Ypres |
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| Madonna and Child (copyright visit-bruges.be) |
The time then came to board our coach for the trip back to Lille, then the Eurostar to London and finally train back home.
Once home I was treated to the fact that our younger son had been hard at work having undertaken a considerable amount of gardening. Thank you so very much, Chris.
Life is what happens when you are busy making other plans
John Lennon
Keep well
Stephen
Friday, 13 April 2018
The Odyssey Continues
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| Spring has arrived |
I should first perhaps explain the rather cryptic title of this post. By definition, an odyssey is a long series of adventures especially when filled with experiences, a progress of one stage of life to another. It seems that odyssey perfectly relates to myeloma. Anyway I'm bored with the term "journey".
About four weeks ago I started to experience sharp pains in my breast bone. These gradually became worse and often spread throughout my chest. Coughing, sneezing and even laughing became less than comfortable. Bone pain is one of the symptoms of myeloma but this was new. My previous experience was of a dull ache; this was much sharper.
It was thus a relief to report this to my consultant this week. As usual, and prior to my appointment, I had a blood test. Given the pain, I had expected that my counts for red and white cells and platelets would have deteriorated. But they hadn't and my paraprotein level, as measured at my last appointment, was still rising at a fairly constant rate. Never-the-less my consultant has presumed, like me, that I have relapsed. Accordingly we discussed my options.
Having prepared myself for the meeting, I was pleased when we agreed that I should be recruited onto a fairly new clinical trial called Myeloma XII. First I would need tests to confirm my relapse and to ensure that I qualify for the trial. The tests will include a PET-CT scan, a bone marrow biopsy (oh joy!), an echocardiogram, and yet more blood tests.
My next appointment is in three weeks and hopefully by then the results of the tests will be known. I can then recommence my odyssey !
Onto much a much happier theme, during Easter, our younger son visited. Then last weekend our elder son, his wife and our grandson visited us. Such events are so enjoyable and reflect the closeness of our family.
You don't choose your family
they are God's gift to you, as you are to them
Desmond Tutu
Keep well
Stephen
Friday, 9 February 2018
Wonderful Experiences
My previous posts have recorded that I was withdrawn from the Myeloma XI trial because my paraprotein had again become detectable. More recently there was a suggestion of a plateau. My latest blood test result, taken in early December, shows a further increase in count to 10 perhaps suggesting a slow move towards relapse. I don't seem to have any recognisable symptoms and my general blood test results (haemoglobin, white count, neutrophils and platlets) don't show any deterioration so, at this week's clinic, my consultant remains content for me to not return for another 2 months. Only time will tell. In the meantime I am relishing life!
Here we are well into February and I choose to write about Christmas - but with good reason !
Christmas for us starts with attending a concert featuring Handel's Messiah. Unusually, in 2017 there was no performance in Bristol. Much to my surprise Margaret booked seats in the Royal Albert Hall. We travelled up to London by train and booked into her favourite hotel. After an enjoyable meal we walked the short distance up Exhibition Road to the Hall. Taking our seats, the quality of the decorations was immediately apparent.
We then saw how many choir members there were combining: Goldsmiths Choral Union, English Concert Chorus, Highgate Choral Society and the London Chorus. I estimated 400 choristers. The official web site suggests 500 ! You can try to count if you like. They extend right up both sides of the organ. They were supported by the Royal Philharmonic Orchestra conducted by Brian Wright.
The music was sheer bliss and the audience was suitably appreciative. The applause was almost as loud as the music had been. All in all, an extraordinary experience, and never to be forgotten.
Breaking with tradition, we celebrated Christmas at our elder son's home. Having only recently moved into their new home he and his wife entertained a total of ten people for Christmas lunch. It was truly wonderful to meet up with everyone at such an enjoyable occasion. Our younger son kindly accommodated us in his flat so we wanted for nothing over the festive season. We had much to be thankful for.
Here we are well into February and I choose to write about Christmas - but with good reason !
Christmas for us starts with attending a concert featuring Handel's Messiah. Unusually, in 2017 there was no performance in Bristol. Much to my surprise Margaret booked seats in the Royal Albert Hall. We travelled up to London by train and booked into her favourite hotel. After an enjoyable meal we walked the short distance up Exhibition Road to the Hall. Taking our seats, the quality of the decorations was immediately apparent.
We then saw how many choir members there were combining: Goldsmiths Choral Union, English Concert Chorus, Highgate Choral Society and the London Chorus. I estimated 400 choristers. The official web site suggests 500 ! You can try to count if you like. They extend right up both sides of the organ. They were supported by the Royal Philharmonic Orchestra conducted by Brian Wright.
The music was sheer bliss and the audience was suitably appreciative. The applause was almost as loud as the music had been. All in all, an extraordinary experience, and never to be forgotten.
Breaking with tradition, we celebrated Christmas at our elder son's home. Having only recently moved into their new home he and his wife entertained a total of ten people for Christmas lunch. It was truly wonderful to meet up with everyone at such an enjoyable occasion. Our younger son kindly accommodated us in his flat so we wanted for nothing over the festive season. We had much to be thankful for.
Joy in looking and comprehending is nature's most beautiful gift
Alber Einstein
Keep well
Stephen
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