Living for the moment?

Living with ‘incurable cancer’ or a chronic illness it becomes hard work to plan anything, or to make any major commitments in life. I find I avoid planning things so I can avoid the disappointment of not being able to do them. Too many times in my life have I ended up having to cancel events or sell tickets because I’ve ended up in hospital with infections etc. I think its one thing that unless you are harbored with the uncertain world people like me live in, you will completely take for granted.

Today was my kings appointment. Blood test and biopsy done. Initial blood results not overly fantastic but not hideous either. My platelets are still lower and now my neutrophils have dropped down to 0.58 too. So not a great indicator, however it will be the biopsy that will really give us any answers (assuming its a good enough sample to do so!) So now I’m in the limbo time of waiting to see what the results are. Waiting to see what the next few months might look like for me…. and its all this waiting that I can’t bear.

When I was chatting to my therapist on tuesday she used quite an interesting analogy. “If you are waiting for a train and you are told its going to be delayed by 2 hours would you just sit there and stare down the track waiting for it to appear? – No, you would go get a coffee, make a phone call, etc. ” So putting this into the terms of my life, I’ve now got around 2 weeks to wait around for my bone marrow results. The one thing I know is that its unlikely things will change in these next two weeks, so why not take advantage of that, why not make the most of the time when I’m feeling good and do something I want to do.

So I’ve booked myself a week in Greece……. F*ck it!! The sensible part of me is trying to argue against the cost, etc and all that. But another part of me just thinks I should take advantage of a good situation and just go for it!! My savings are going to run out at some point, might as well spend them on fun things to remember!

 

 

 

 

 

What’s the point??

Wow – 2 months since my last update. There has been many a day when I have written a blog in my head, or thought “that would make a good topic” but have never got round to actually writing it down. Have a feeling this could end up being a long update!

I think my reason I have ended up not sharing anything is because I’ve been feeling pretty “meh” – sort of nothingy. I’ve found it pretty hard getting back into things since my last big infection and have found it mentally really tough to deal with. Lack of motivation to do certain things and to build myself up and generally feeling a bit down about everything.

Updates:

1. Cancer status – who the hell knows whats going on. The biopsy in March unfortunately showed that my blast % had gone up slightly to 7%, despite the last round of chemo. Obviously nobody is particularly happy with that result, but as my blood tests were good and my chimerism (% donor) was highest its been then they weren’t keen to dash straight into more chemo (especially after the recent infection). I was to spend 6 weeks focusing on recovery – keep an eye on my bloods and then have a biopsy. Now unfortunately my bloods have done a bit of a drop over the last few weeks; my platelets have dropped from 110 down to 60. This might be just a blip and mean nothing, or it could mean everything. This Wednesday I go to Kings for blood tests, bone marrow biopsy and consultation. Should get all results in 2 weeks time. Yet again I’m in the land of uncertainty…….. land of limbo. Just anxiously waiting to see if my life is going to get put on hold again or if I can allow myself to start looking ahead and book somethings in the diary.
2. Girly bits – Bleeding has stopped. Gyny didn’t think it was anything to worry about apparently and only had the suggestion to increase my HRT dose to reduce some symptoms (one being that having the speculum inserted felt almost as painful as a bone marrow biopsy!!) Getting used to the additional hormones, and no more bleeding.
3. Mental Status–  After failed attempts through the NHS I started looking for private counselors, but in the end I’ve started seeing a counselor at Macmillan. We are working to try and help me identify and deal with some of my unwanted behaviours and thoughts. We are currently working through some CBT and will be doing ACT (acceptance and commitment therapy). I’m currently trying to understand why I’m avoiding doing somethings and have put myself in a little bubble. Even avoiding things I used to love and enjoy – e.g. I haven’t been back to the gym since my last infection. I don’t fully understand my reasons for this, but believe it is a kind of safety behaviour. Not allowing myself to do things that I wouldn’t be able to do if I was sick again? So sort of living in my little bubble, so that it isn’t too hard to adjust to life being sick again? A sort of “Whats the point?!!” attitude – whats the point in getting strong again if I’m just going to lose all my strength?!?! But to add to this if I haven’t seen some of you for a long time then please don’t take it personally, I’m struggling to reach out beyond immediate family and even close friends at the moment – doesn’t mean I’m not interested, just might mean I don’t make the first contact!
4. Life in general – Day to day I’m doing ok. I’m getting myself into a bit more of a routine outside of hospital life of going to the odd yoga class, art class, walking the dogs and even trying out some boxing fitness! Been trying to take on projects to keep me busy and focused, this week I have been mostly cleaning and prepping my decking to be painted (with the help of my dad and brother!). Turns out we were only able to get one coat of stain down before the heavens opened!! Hoping to get out and finish the job next week! (Starting to regret buying the house with a big garden and huge decking now!!) Mostly I’m pleased to of gained a level of concentration back again – I’m able to watch films, read a book, knit/crochet etc now. My brain definitely isn’t firing on all cylinders, but its getting there. Will have to try and find some brain training to do.

I will update on wednesday with my blood results – someone poke me to remind me. And poke me to remind me to blog too!! Its helpful for me to do it and I’m hoping its helpful for some of my readers too!!