I've had monthly blood test number 6 of 60 (we are monitored for 5 years from the start of treatment, I'm already counting down) and I'm pleased to report that my Lymphocytes are still behaving and not repopulating too quickly. They are currently at a reasonable level of 0.51, 6 months post round 1 of treatment. I'm hoping they will get to 0.9/1.0 by next February to put me in good stead for round 2.
My health has been pretty good in the last few months, I've had a few blips along the way where my platelet count dropped and I developed menorrhagia and then I had a pseudo-relapse/exacerbation where my body "remembered" the symptoms of a previous relapse for a few hours and I panicked and thought I was going into a full relapse. Thankfully, my support network sprung into action (Jonny, Sue and Pete - sorry Sue for wailing down the phone!) and I recovered quickly.
On the whole, life is good. I've been working normal hours and coming home to cook afterwards (but resting in the evening - I'm learning!). I've been back in the garden a lot - my Tomatoes have done amazingly, I'm going to be knee deep in soup this winter and I literally cannot wait to dig up the maincrop spuds, eeee! Again, no idea where I'll put them, mash 'em and freeze 'em perhaps? It will be lovely to give lots to friends and family too.
The hardest thing I have found since my treatment and the diagnosis perhaps is that although I am starting to learn my limits, sometimes they are decided for me, often without discussion. I touched on this in my last post 3 months ago when I was finding this most difficult and although I still find it hurtful now, it's becoming less so.
I am very aware now of belonging to a part of society that is a minority, and there are certain things that I can't always take for granted. I can't assume that the opportunities I once had will come up so easily, because now I come with an added risk factor. And although I am protected by the Disability Act, there are still things that aren't covered by this. Which has sadly been a particular problem in my work.
The last few months have been an emotional roller coaster as a result, I never quite expected to be sat in front of the lovely lady at Occupational Health asking what more I can do to help others trust that I AM still able do the work that I used to do. She is incredibly supportive and writes me lovely reports each time outlining what I am capable of, she also always makes a joke about me being the only person that steps into her office demanding to be given more work. The only thing that we can do to build trust seems to involve spending the next few years "writing a new rule book", by demonstrating good health, (i.e. not requiring time off work because I've overdone it in the week) risk assessing and planning for every probability - always having a plan B and always being prepared.
(Which reminds me of when me and my friend Emily used to laugh at how our Mothers packed suncream, sunhats, brollies and raincoats for every school trip in Primary school regardless of the activity, season, or the weather! Always be prepared!)
It does make me think though, that when you have a disability or any chronic illness, you have to play the game to a higher level in order to prevail. You also have to become much more patient, because it takes time to build trust and to educate people to overcome their assumptions and their prejudices, and trust me, boy do those assumptions start to grate on you quickly.
I can definitely understand why some people don't allow their illness to become public knowledge, because it's easy for others to make quick assumptions about their shortcomings, in fact it's hard not to UNTIL you are educated otherwise.
But it's not just me, or others with something that puts them in the "minority" who have the opportunity to provide the information that helps to educate others. Both those who are lucky enough to be in the majority and those of us in the minority can and SHOULD help to educate others. After all, we live in a society now that is comprised of so many different minorities - race, gender, religion, health etc that we really should be trying harder to work towards equality.
