Medical word of the day :- Chimerism

My Bone Marrow Clinic checkups are monthly these days, so I was there today to discuss how it's all going and to reflect on the results of my latest scan. We are all very happy overall with my progress, but there are some things to keep an eye on:-

1) My spleen is still slightly enlarged. It is the same size as the last couple of scans, so it's good news that it's not getting bigger. I still think that this is a result of scar tissue from when it was a whopper. There is absolutely no evidence of any other enlarged lymph nodes in my body - so I am hugely encouraged by this - in fact I just gave a whoop and a holler to celebrate.

2) I have some nodules on my lungs. Possibly scar tissue (fibrosis) from recent chest infections, but the doc reckons nothing to worry about. My lung functions are completely normal and not affected.

3) Chimerism is to do with having two sets of DNA in my body - i.e. my old (pre-transplant) blood cells and the ones from my new bone marrow. Obviously I want to have none of the old lymphocytes, as they mutated and became cancerous, so I want to get rid of them - but there are some still lingering.  My lymphocyte chimerism is currently 78% new and 22% old. This is considered normal for this point in my recovery, and as the months progress I hope to see the old ones reducing and ultimately hitting zero, with the new lymphocytes completely taking over. If this doesn't adjust sufficiently, then I may have a lymphocyte top-up from my donor, just to nudge it along.

So, I look at today's visit as a very positive one. It's all good news, but a reminder that I'm still recovering and there's a lot happening inside that needs to be monitored.

Another milestone - back to work

I went back to work today, after 16 months off.
I am very lucky to have a really helpful and understanding employer who has worked with me throughout my illness to ensure that my treatment  and family are given priority.

Based on the advice of my consultant, I have agreed a back-to-work schedule with my company. Starting with one day this week, two days for next three weeks, three days for the subsequent two weeks and then back to full time - all over a seven week period. We'll monitor this closely and see how my energy levels are coping.

I was worried about how I would feel (mentally and physically) back in the office today, but I'm glad to say that the experience has been positive and I'm actually looking forward to getting my teeth into some work. I think I'll be up and running quite fast.

Baby Jabs - they were bad enough the first time

Waah! Started my baby jabs today. Not many people get a second go at these, so I was determined not to cry this time :-)

Polio, diphtheria, tetanus, pertussis, pneumococcal, haemophilius influenza, meningococcal group - just for starters. Two shots in one arm, one shot in the other. this goes on monthly until February. Then I get a break for a year before I have my MMR jabs.

It stung a little, but I was brave. And I got a sticker and a lollipop.

Sickness seems to have stopped - no idea what it was

Listen to me as I say
I haven't been sick for 10 day(s)
I've tried eating the hunks
that made me blow chunks
Still everything goes through me one way


Could have been GvH, could have been bad luck with slight food poisoning. Nobody knows, but at least it's stopped now

Saucy dunks make Dad blow chunks!

Saucy dunks make Dad blow chunks!
This is a rhyme my daughter made up recently in response to my increased bouts of vomiting. I keep eating things I probably shouldn't have such as dunking crisps into sour cream dip, or having crackers with humous. Stuff I wouldn't have necessarily considered bad for me, but my stomach disagrees. It's happening about once a week this past month. I had another episode a couple of hours ago when my lunch came back up. Tuna salad - seems innocuous enough as I'm not supposed to be neutropenic, so salads should be ok - unless I am neutropenic again. Blood levels can waver like this for a while after a transplant. I'm due back in the hospital tomorrow so I'll discuss with the docs and see what's going on. On the positive side, I'm getting comfortable with puking and getting quite good at it too! I wonder if I can get a job throwing up?

Other than that, I'm doing well at the moment. No major problems to report. Even had a lovely holiday with the family in Ireland. I had some great swims in the sea - the docs were cagey when I asked them if I was ok to swim, but couldn't give me a reason not to other than the usual be careful and don't eat any chocolate bars that might be floating by :-)  As it turns out, one of the beaches we visited was closed because a local sewage works had problems and there was stuff in the water. Needless to say I didn't swim there.

We'll see what the docs say tomorrow regarding my new "talent". Who says chemo and transplants are no fun?!

Latest scan all cool, probably

Just been to the hospital to have my regular checkup and talk about my latest CT scan. As far as we can tell, everything looks good - I say that cautiously because a specialist still needs to look at it and write up their findings. The hematologist I saw today thought the scan looked clear, so that's encouraging.

I was also a bit worried about my spleen, but it doesn't look like it's enlarged any further - again need confirmation from the specialist, but I am still encouraged.

So as it stands, everything is looking good. Other than a recurring bout of indigestion and some fatigue when I try to do too much, I feel in great shape. Oh, my lymphocytes (white blood cells) are still very low (but higher than the last blood test, so they seem to be creeping up), which means I'm still vulnerable to colds, 'flus, etc. I just need to be sensible....

Still going well - maybe a little tired

I helped out last week at the Lymphoma Association - they are designing a new training course and wanted some input, so I went along. It was a long day for me, but an insight into how I will feel once I go back to work. It lasted from 10 - 4 and I found it draining, but very satisfying to be able to participate. Thankfully the meeting was in a nearby town - I remember thinking to myself that it was good I wasn't further away as I'd never be able to drive home I felt so tired.

I'm free of illness at the moment and am making the most of it - back walking the dog, jogging, and just being more active in general (although this hasn't yet stretched to hoovering or washing up - don't want to push myself too far too early :-)   )

I have a CT scan this Friday to see how everything looks inside. I feel good, so it should be ok, but there is always a little apprehension about these things. I'll know more once I go back for the results on the 20th.....