My continued battle with the never ending twists and turns of my AML. Having secondary illnesses of heart and lung problems due to chemo and the, what seems like, the forever wait of getting a SCT.
My instant thought was this has to be a sign..to get an appointment to see my favourite haematologist at Kings hospital on the eve of my diagnosis last year. With all the crap I’d gone through with my ruptured appendix, major surgery, etc this past few months and not being able to have my chemo injections because of it... I need some good news.
She explained that considering what I’ve been through my bloods seemed to be holding their own, still not in the range required to be healthy but at least I was producing some Due to my secondary heart and lung problems she wanted to me to have them checked again and to have another biopsy ..think this is the 7th.. (oh the joy of having another one done really excites me...NOT!!) After all these tests over the next month I will be off to Kings again to find out which plan is best for me... the choices at the mo are if I’m healthy enough they will go for the stem cell transplant but they are worried that if I get any of side effects or infections associated with the transplant, they will go straight to my weak points and I could either end up a lot worse than I am now or worst scenario dead. The other choice is to keep me on maintenance chemo, it means any dodgy cells are kept under control but will not go away completely..... Mmmmm not sure if that’s good news or bad.. a bit of both maybe?
Amazing how, when given choices like that, inwardly I’m screaming
‘I just want to live, have some normality back in my life’
Neither of those options sound like I’m ever going to get that... I don’t want to choose .. a life without AML would be the best news but not with that huge cloud hanging over my head that the path to it, could mean living life half dead on chemo or completely dead because my body couldn’t take it.
I guess I have a lot to think about, we’ll see what the tests say... I’m grateful I’m alive, that’s what counts at the moment... being grateful for all the extra special moments I get to spend with my family and friends, who remind me daily why life is worth fighting for xx
Just a quick one to say thinking of you whilst you wait for biopsy results. Waiting is hard. Besides the biopsy (which involves waiting) have you had repeats of your heart, lungs etc tests? Wondering how those are healing.
You mention your Favourite haematologist as a “she” not the Aussie bird Victoria Potter by any chance? She is just excellent IMO! No nonsense sort n she knows her stuff.
My husb is going from strength to strength I’m happy to say. we waiting for latest biopsy results etc n those results should be in soon.
Yes I was referring to the wonderful Victoria Potter, as you say a ‘tell it as it is’ sort.. she has always been straight with me and love the fact that no question asked is stupid or unnecessary.
I’m still awaiting a biopsy date from my local hospital and strangely haven’t been asked to get blood tests done... most unlike the team at Eastbourne. I’m off to Kings for an Echo and chat with the cardiac team next week(13/7). I’ve been and had the lung function tests... I remember the first time I had these tests, blowing/exhaling into tubes and holding your breathe was pretty much impossible but this time I made it through them without feeling like my chest was gonna explode, in my eyes a great improvement but I won’t find out the true results till the mid to end of July.
Keeping my fingers crossed that your husband’s biopsy is good news and his strength gets better everyday... the waiting for appts, results and never knowing is a constant battle that does not sit well with me as I have for as long as I can remember always wanted the answers yesterday lol Patience is definitely not one of my virtues
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