Tags
ageing, Barts, blood, blood tests, Bloodwise, cancer, charity. lymphoma, children, fatigue, NHS, Rituximab
Hi all, it’s that time of year again where I celebrate Christmas by giving the phlebotomists the gift they most want, my blood.
For some masochistic reason I always get checked a week or two before Santa comes a calling. The results then come in after the new year, making he wait that bit longer. Still every year so far has been positive, so I’m hoping this one is the same.
However I do have some small reasons to think it might buck the trend. My various episodes of severe fatigue and the one episode of night sweats point to something being a little more off kilter. I would hazard a guess it won’t be the white cells, the principle marker of my condition, as these have been steady in their increase.
More likely it’s a reduction in the old red cells, be it platelets or otherwise. This can be caused by the spleen sucking too many in, so the rest of your body kind of has to go without. Much like money and the 1%, or if that is too political Avery and any chocolate in the room.
Still no point worrying, and I have been avoiding doing so, as you can’t do anything until you know the situation, and that’s when you look at options (sadly not the hot chocolate, although, again, Avery would be onboard).
So anyway that’s what my morning looks like. Let’s hope the rest of Christmas, is more enjoyable.
Aside from the bloods we had a little collection at work, and that raised some good money for bloodwise (although I won’t ruin the work announcement by saying how much).
Also a friend of mine (Clive Wells) is having a gig on the 9th of February, which he has offered to do for charity. I’ll be there with some tins and some t-shirts.and would welcome anyone who can make it. It’s in London at the Erebuni bar and restaurant. https://www.erebuni.co.uk/
And I would welcome any support (and I might buy you a drink, if you are lucky).
Aside from that our children continue to develop. Grace reads a mean version of going on a bear hunt, and likes singing, Avery is experimenting with words (especially chocolate and chocolate cake, you might see a theme) and is walking a bit now.
Looking at their achievements, it’s always strange to consider their growth and development, as when you become an adult things seem to stop marking time for you in the way school did. When you have kids, suddenly they are one, then two, then school etc. It’s weird to think how shortly these children will become independent adults we can (hopefully) be proud of, superceding these bright young sparks of life they are at the moment (and maybe a good deal less work… Maybe).
I was considering over the last few days what it would be like it I was to get bad news and then to die in the next couple of years. It would be crushingly sad for some but probably worst for my children. It’s difficult to think about not being there for them whilst they grow up. I know everyone’s in the same boat, but people with a condition just think about it more.
If I do pass I hope to leave them with a stable life until they have their own adult responsibilities, a loving extended family (and my family and Jos family are great) and as much love as I can, even if they don’t remember it. (Dependant on circumstances).
Avery would also be super angry if I didn’t provide for his habit, so I will put aside a small amount of money every year for chocolate.
Still enough of the maudlin, and that wasnt the plan or his post. There is no reason to suggest this won’t be like any other year and the results are benign. If it isn’t then the most probable worst case is that I will need some treatment, and you can see by previous posts that the Rituximab course is around 95% successful for 5-10 years. I might also consider getting rid of my old chum, the spleen, which is another option.
So there are options, good ones. And I need to stop thinking about it and concentrate on the upsides in life, of which there are many. My new obsession (old?) With magic cards. Our business going well, a great family, and a nice house to live in as well as some great friends.
Really I should be happy about the place I am in, and I am determined to remain so.
So here’s to The doctors and nurses who don’t get enough praise for helping people like me, and also for the stupid hours they do, especially over Christmas. And here’s to friends and family and watching our families, or our family family’s grow. Most of us reading this are very lucky!
I’ll let you know how I get on :).
I’m anxiously awaiting your results. We all love hearing from you as most of us are in about the same position. Your attitude is wonderful and it always cheers me. Merry Christmas to you and your family.
πΎπA very Happy Christmas to you and your family ππ x
Great to hear you are doing well 5 years in I was very distraught when I read your blog 1 year and a half ago when I was initially diagnose My white are consistently going up but everything else seems ok so so far no treatment. Best for you and your family and a happy New years
Hi!
Iβve been recently diagnosed with SMZL too. Iβm 30 and mum to my baby girl who turns 1 in a few weeks.
Iβm on watch and wait too but totally get the what happens if I pass and what will happen to my baby girl. Itβs so hard to contemplate but hoping with time maybe they will find a cure.
Can I ask how long you have been living with it? Any tips?
Best of luck for your results.
Shara
Hi Shara, five and a half years now. I was 30 when I was diagnosed with it and have a one year old and a two year old. Cures aren’t likely at the moment (although never say never) but they have an excellent treatment which mostly delays it for many years. Also I have not had to have treatment since I was diagnosed, so it’s a very slow burn. Just remember you could have many years yet and don’t plan anything rash with worry about short term. I have up running, as I found it irritated my spleen, but I’m sure that was unusual. Just eat well, live well and focus on eating things which up your red count, as this is what can get hit sometimes depending on the spleen. For other options (spleenectomy) look at my earliest posts. Two main options for treatment, both which can be very good.
Bit rambely, but hope that all makes sense!
Best of luck, keep me posted on your progress π marcus