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27 December 2025
I'm guessing this will be the final update on this chapter of the bone marrow transplant story. In May of this year I was informed that my bone marrow transplant had effectively failed. They needed my brother to come and donate lymphocytes to see if this would help his dimminishing cells recover and kill my mutated cells.
We immediately applied for his visa - no mention of the emergency - and got the visa within 2 weeks (compared to an emergency and a 6 weeks wait the previous year). Anthony came over and spent a greulling 5 hours on machines while they harvested more lymphocytes. They gave me the cells that afternoon - about 3 hours after he donated them.
It was a worrying time, as in theory his lymphocytes could kill me (worst case). After about 6 weeks I had another bone marrow biopsy to see how the cells were doing. Much to everyone's dismay they were doing nothing, except being killed by my cancerous cells. This really was the end of the road.
The doctors decided they would not give me any more cells as it would just make me ill and not do anything positive. A second bone marrow transplant was also ruled out as they know from experience that all that will happen is I will have severe graft-vs-host disease without any benefit of reduced cancerous cells.
I am now back on the chemo tablets (twice a day) that I was on before all this happened. I still have the occassional venesection to reduce the blood in my body. The doctors reckon this is what we need to do to try and contain the disease and it's effects on my body. This will now be the way forward until some new technology or treatments come up that are viable or until the disease becomes something more serious than it is now.
I was slightly relieved about not having to do another bone marrow transplant immediately. I've been getting fit and moving forward with life. Trying to find meaningful work, which is a challenge, but with a rebranding and help from friends I am getting there.
I'd like to thank everyone who stepped up and helped throughout this process. You all have a special place in my heart. I'll leave this blog up for a few more months and update if anything major happens.
28 April 2025
Just in case you were wondering if I have recovered yet - I am on the road to recovery. It has been a tough time with all sorts of weird things happening to me - fortunately nothing serious enough to hospitalise me
My skin itching has now turned into skin burning sensation. I've taken anti-histamines but they only help slightly and really mess up my kidneys and liver. I just occassionally take a pain killer to manage them. The burning has moved from my arms and shoulders to my thighs.
I stopped having immuno-suppresants, had that MRI scan where they found nothing (I know - where is the brain?). Fortunatly the tingling sensations have all but gone. I'm currently only on 3 permanent medications (lung fungus avoidance, general virus avoidance and shingles prevention). I did have my first COVID jab about 2 weeks ago and my arm was very sore. No other symptoms fortunately.
I'm now on a +- 4 week rotation with hospital visits. They are pretty routine - blood tests, discussions, adaptations to medication - all very boring.
I have started socialising in open spaces and bigger venues, it's still a bit of a 'run for cover' reaction when someone sneezes or coughs, even though my immune system appears to be ready for a fight. The biggest problem that I face is not knowing what the new immune system will want to kill when it goes into fight mode. So far it has been killing my old bone marrow cells - we can see this from the tests they do - and it needs to kill them all over time. The burning skin is a possible graft-vs-host consequence.
I'll update this blog a few more times this year. For those of you wondering - it is a 5 year recovery process before the NHS will 'discharge' me as dealt with. Between now and then it is a bit of a wait-and-see and deal with symptoms that appear. As always the doctors don't tell you all the possible things that could go wrong (that's a good thing I think because then I don't worry about it). The point is that anything can happen that puts me into A&E or Intensive Care - we just have to minimise the risks whilst trying to live a normal life. Oh, I need to stay out of the sun or wear at least factor 50 - forever - because of the risk of skin cancer due to the chemo - nice one doc - didn't tell me that beforehand! I now have a crazy Aussie style hat and a football hat that makes me look like a 'broertjie' (slang for brother).
Lastly, fatigue is still ever present, sometimes I can walk quite a bit, other times I just stay in bed and sleep. I seem to be able to drive for extended periods so that is at least a very good thing.
Until next time, be well and look after yourselves.
30 December 2024 14:00
It has been an interesting time since the last update. My progress has been slow, almost stagnant and they have slowly been reducing my immuno-suppressants.
I have experienced an increase in itching but no major side effects.
New things that have appeared are some additional spots on my skin and a tingling sensation throughout my body when I stretch my sciatic nerve. I am having an MRI scan for that in January.
We have had a surprise and anonymous present from someone for Christmas - 250kg of woodburner multifuel brickets. We have tried to find out who it is to thank them but the company who delivered the goods say the person wishes to remain anonymous. Thank you so much for the lovely present, please tell us who you are so we can thank you in person :-)
I am starting to spend some time in the office again so if you have some work or know of people who could use my services, please pass my details on to them. Looking forward to doing some interesting projects in 2025 again.
Thank you all for following the blog, have a great New Year's Day and may 2025 bring you all you wish for. Thank you for all the kindness and support during the last year. It is much appreciated.
14 November 2024 14:00
Apologies for the long delay in posting but there has been little change in the way things are. I go to the hospital on Mondays, they do tests and things are either slightly worse or slightly better. I've had to have some fluids once and there has been some speculation about whether things are getting better.
I've been pretty tired and almost nauseous most weeks. I'm told I still have some infections - low grade but becuase my system is so low they are major fights I am having.
They have done some test for DNA profiles and the JAK2 gene defect and we should know by January how successful the transplant has been. Until then it is the daily routine of itching, taking pills and avoiding viruses, bacteria, children and coughing crowds. The cold weather (I know it's not cold by some of your standards) is a pain too.
I'll update if there are any major changes - right now this is a boring documentary ...
06 October 2024 14:30
The blog seems to be pretty repetitive now so I will be making less entries going forward. Basically the formula is now on repeat: Two steps forward one step back. As the doctors push me to do more and I do, I get some minor setbacks either as fatigue or as some rash or a horrible side effect that needs to be dealt with.
My immune system is still very young and as such I can only really engage with other people who are not sick in any way in large open spaces or at a distance. On trips into London for the hospital I wear a mask most of the time. I'm walking a little bit at home and when in London but I'm definitely not strong at all.
So as I try and get back to normality I will update periodically as there are major changes or incidents. Thank you all for your support and wishes so far.
29 September 2024 09:30
The theme for this week has been fatigue and skin issues. As my one drug is decreased I have more symptoms of graft vs host disease. This is currently manifesting itself as a rash on my lower abdomen which is spreading north and south. To say that parts of my body feel like they are on fire (not in the way Bruce Springstein meant it) is putting it mildly. I have creams and potions and powders to manage the symptoms. Hopefully they will re-assess tomorrow and let me know what is next.
I've enjoyed the armband free showers this week and feel better for it. The 'wound' from the PICC line on my upper right arm is improving. That said, to give you an idea of how slowly my body takes to heal, the bruise I got from an injection in my stomach by 'Chuckie' whilst I was in hospital is still just visible - it should be gone completely in about a week or two.
Hydration is still my biggest challenge although I am managing to drink plenty. I hope it is enough for the kidneys and liver to work properly. I'm not fully mobile yet so walking distance is still way below 1.5 miles a week! I checked and before the procedure I was doing 4-7 miles a day.
24 September 2024 11:30
As you may have noticed I have moved the snapshot graph to the archive. It has served its purpose as an information provider. The problem I have with it is that, like social media, it was only showing the good times when I could actually update it. So you were not getting the whole picture.
I am up and about most days - I cover about 0.5 miles a day in doing stuff around the house or even going shopping. I then need to rest for prolonged periods of time.
I had a really good hospital visit on Monday. They removed my PICC line so another source of possible infection is now gone and I am sure once my arm has healed (72 hours or so) I will sleep better too. My cell counts are all down from last week but that is to be expected as my body fights new bugs and small skin infections. My immuno-suppressants have been lowered some more so some rashes have flared up again and the itching is intense.
I'm not on top of the fatigue and I'm told it will take a long time (months) before that gets better. The process is very, very slow. Winter is coming and I do feel the cold (even though it is hardly cold yet) rather intensely. Fortunately we have some lovely duvets.
Thank you for all the lovely cards and well wishes from everyone. It is much appreciated. Hopefully we will all be able to socialise soon without masks and distancing. I am only due to start getting vacinations in about a month or 6 weeks so I am still pretty much without much of an immune system that can fight daily things. I can't find bacteria free yochurt either - very frustrating. The ones that exist are all fat free - sugar free and full of artifical sweetners and frankly crap. Since reading food labels more carefully, I can't believe the stuff supermarkets and producers sell us with tag lines like "healthy" and "natural" and "organic" on them. Buyer beware.
17 September 2024 08:30
The lack of posts is just a reflection of my lack of energy. I am still having good days and bad days due to fatigue. The doctors say it goes like this.
I also found out this week that Mylofybrosis bone marrow transplants take a lot longer to take and settle because of the scarring in the bones from overproducing blood for so long. The new stem cells find it difficult to get a decent footing so it takes longer.
I have some interesting graphs of my blood results from before the start of all this until this week. It shows how the chemo killed everything and then how things are slowly recovering.
The graphs are below - the red box was when I had chemo. The green line is when I was discharged from hospital. I was in hospital from the 21 July to the 15 August 2024. The comments are as I understand them - I'm not a big fan of Googling my medical conditions and results as they are always horrendous on the world wide web :-)
The white cells help fight infections. When their counts are low you don't heal too quickly. I had a bruise from an injection for about 3 weeks.
They give me more blood when my haemoglobin goes below 80. You can see that happened quite a bit in hospital.
The platelet count is interesting. Before I started oral chemo about 2 years ago my platelets were above 1000 - they came down to about 680 after starting oral chemo. You can see the dramatic decrease as they all died from the intense chemo in hospital. I had about 2 or 3 bags of platelets given to me when I was in hospital.
Neutrophils are the things that go and sort out infections. When you have none you are neutrophenic and can get serious infections, etc. Fortunately I never got anything serious.
This last image has to do with liver function and hydration - I am drinking almost 4l of liquids a day but it seems the medication is causing more stress. You can see the last reading is dramatically down. They have decreased my immuno-suppresants and this is the result. I just need to continue drinking lots of water and fluids.
11 September 2024 09:55
Hospital visit was fairly efficient and painless. Two cars pitched up to take me in - ugh.
My liver function test shows that it is still suffering so they have now reduced my immuno-suppressants. I am now itching constantly. Fortunately I had this for the best part of 10 years with PV so I don't scratch. It is tempting though.
I'm on a half dose of an extra high blood pressure pill. It seems to make my blood pressure go really low around midday but then recovers to normal by evening . Next morning it is slightly elevated. Not sure if the morning thing is just the stress of getting up, pills, and the rest.
As for the other cells counts - they are all down from the previous week. I've had an infection on my face (ingrown hair) which is now dealt with so things might improve.
I'm managing to stay out of bed for longer periods but I still crash at some point needing to sleep. I slept really well yesterday afternoon - when Sue woke me for dinner I thought it was today!
8 September 2024 10:25
It's been a week of two halves this week. I find I have a bit of energy in the morning so I throw myself into things.Within an hour or so I sudden get either very tired or very nauseous and have to rest. The rest turns into sleeping for the remainder of the day. I'm now trying to pace myself, it is very frustrating. Along with that, the full day Monday at the hospital takes me out for all of Tuesday too.
Early start tomorrow for the hospital visit - I've got to be ready for a 06:15 pickup. Hopefully the driver phones tonight and tells me it will be an 08:30 pickup - much more sensible but the transport have a 3.5 hour contingency time in case of a problem. Common sense seems to not be part of the planning solutions. At 06:15 it take 1:04 hours to the hospital.
Still have rashes, I seem to be retaining water because my ankles are swollen. I have been drinking about 3l of water a day but I don't know if there is a correlation or if it is something else - will find out tomorrow.
I'm doing a few bits of work here and there but I can't commit to anything serious just yet, I think that is more than a month away.
3 September 2024 14:45
I had an excellent Friday and Saturday last week. Sunday was not so good as I spent the day in bed exhausted.
I had a hospital appointment on Monday - my cells are a bit up but I am feeling terrible.
Today I have been in bed all day - I am not sure why I am feeling so bad. Just can't seem to rest or get up and about. The cooler weather helps but I am just not up to anything.
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