Reading this some months later but loved your using lemons instead of the full word. It is very strange but somehow my brain struggles to cope with writing/ typing/spelling the word even 12 years after my diagnosis. I think it is trying to deny the condition. I can spell LEMONS, though. Hope all is well. Sometimes a shock like this allows us to appreciate smaller things - though we’d all like to come to that without the shock of a diagnosis. Tricia
2 Likes
You certainly sound like you’re trying to be as positive as possible @Debbie36 and it’s totally natural to feel so anxious. This sort of treatment certainly isn’t pleasant (speaking from experience) and I know you’ll be there for your husband every step of the way. If I were going to give any sort of advice, I’d say snatch every moment of something nice you can get, even if it’s only something little. It will feel like a victory. Do let us know how things go.
3 Likes
Thank you for all your kind words and support.
We recieved a letter Friday from the consultant it was a copy of the one sent to our GP. And there it was in black and white that he has explained the prognosis and the 40% survival rate. Ive said all the right things to my OH including how he has beaten the odds so far. I think i sounded convincing.
Then in my quiet moments i think of all those who have survived their brush with blood cancer on here. Of course those who didnt arent here to share their story.
I touched base with my GP this last week and although i know her really well she got the well rehearsed ‘Im doing fine’. I just know if i start telling the truth and how i really feel that fasade will fall away and i will be broken. Im no use to anyone broken…x
4 Likes
Oh @Debbie36 thanks for being so honest with your thoughts and feelings, but from personal experience I can only keep up the facade or mask for so long and then my fears and emotions come pouring out, usually for me when I am on my own, and weirdly for me I find it is a release from those pent up fears and emotions and actually gives me renewed strength to cope better.
I have blood cancer, but I have also been a carer.
Again it is a personal thing as a blood cancer patient but I do not want family or friends to ‘make it better’ in any way but just to listen to my fears, emotions, thoughts and practicalities.
It then usually turns out that we are both feeling and thinking similar things and then that means that we can both speak pen and honestly which really helps me.
I have realised how can the GP help me if I keep saying ‘I feel fine’.
Personally I found counselling helped me so did Pilates, a massage, a local Carers Network and this forum
I believe the saying is that if the carer does not look after themselves how can they have the strength to look after someone else.
Look after yourselves and be kind to yourselves and please keep posting, your honesty helps me as well.
1 Like
My OH isnt great without reassurances. Once he is admitted on Thursday 16th i will be able to just let it go.
Thank you for your great perspective xx
2 Likes
Best of luck to you both, @Debbie36.
I should not worry too much about these supposed ‘statistics’. I have read and also been told by various consultants, that they can be out of date; based on just a very small set of data, from perhaps just one part of England, during a small time window (the Acute Myeloid Leukaemia data, for example) and they are averaged out. Your husband is not an average, nor a statistic. None of us are. And survival rates have improved tremendously over the last decade. I cried my eyes out at the 50:50 chance I was given, of being alive and disease-free two years after my stem cell transplant - but I was quickly reassured to take that figure with a pinch of salt. They have to give you an approximste figure so you know there are risks, but actually time is very likely to show long-term survival rates are far higher. The trick is to put away the fear so that you can enjoy your new future together.
Hope the process is not too bad. It’s very variable. I’ll have everything crossed for you both.
All the best. X
3 Likes
All the best to your husband , I hope everything goes to plan .
2 Likes
Hi @Debbie36, I wanted to touch base and wish you and your husband all the best for his treatment. Thank you for sharing what you have been going through. Please do keep us updated and as has been mentioned, you’d be very welcome to give us a call if you’d like to talk (0808 2080 888). Best wishes, Tanya.
2 Likes
@Debbie36 thinking of you and your hubbie today. Sending nothing but positive thoughts now. No reason why he shouldnt be in that 40% xxx
3 Likes
Thanks Ashob
I have delivered him in the best shape we can manage the rest is completely out of our hands.
Thanks for your kind words and support.
Debbie x
4 Likes
Sending lots of special wishes to you both! X
2 Likes
Just a quick update from Oxford hospital. All going well with my OH. Getting ready for those stem cells going up on Thursday.
I had a lovely visit this afternoon but the 5 hour round trip is knackering.
How is everybody else doing? X
3 Likes
So good to hear that everything is going according to plan. I bet he was so pleased to see you but you must be exhausted tonight! X
1 Like
I will sleep well tonight. X
1 Like
Good luck with everything @Debbie36 . You’re allowed to have worries and feelings of your own and I hope you feel able to talk about them. As others have said, doctors always give you the worst case scenario with statistics, in reality for many people it is much better. If my doctor was correct, I should already be gone but I’m still enjoying a fairly normal life and getting what I can out of it without too much bother.
4 Likes
Hi @Debbie36 now that your husband is being looked after by Oxford Hospital it is a chance for you to really look after yourself.
I have no idea how you are doing the 5 hr round trip.
Be ever so kind to yourself and spoil yourself and keep us posted.
1 Like
Just a quick catch up. Firstly if you have been following my ramblings my daughters wedding last weekend was just wonderful.
Secondly my OH has been in hospital since 16th June and after his stem cell transplant has struggled. He has mucusitis, I think thats how you spell it. So hasnt eaten or drunk anything for getting on for 3 weeks. They tried an NG tube but his throat was too inflamed and still is. He has been unable to walk more than a couple of steps to the ensuite, which he needs to do frequently because of horrendous diarrhea. He has become very weak and when i spoke to the doctor yesterday during my visit she confirmed he has been quite unwell over and above his transplant and chemo. It is going to be a slow recovery she said.
On the plus side there is evidence that the transplant has gone well with new cells appearing very slowly. His other blood numbers are slowly starting to rise.
He is having episodes of confusion which is being monitired closely incase there is CNS involvement starting to show.
He just looks so unwell and there is nothing i can do for him except be there virtually and physically when i can.
3 Likes
Oh @Debbie36 I hope with all my heart he is over the worst of it. It really sounds like he has been thru so much. Hopefully now as his bloods continue to improve he will start to feel a bit better.
I cant imagine how hard it was for you all to go through the wedding without him there.
I hope you get the chance to be good to yourself too as life will be busy once you get him home xxx
2 Likes
Morning Debbie. There is so much going on for you. Firstly, I just wanted to say that I’m so glad to your daughters wedding went so well. I bet she looked absolutely stunning?!?! You must have been a very proud mum!
It sounds at though your OH is having a really tough time of it and it just be really difficult for you both. Are they allowing you to visit?
That’s great that they do see some progress but that just be hard to see when he is so poorly. Hopefully - day by day - things will start to improve.
Please keep us updated when you feel able to. How are you doing, really doing? I know you said you gave your GP the well rehearsed ‘I’m fine’ last time you saw her and the travelling was exhausting for you.
Don’t be afraid to ask for help. In the meantime we are here for you, alongside the support services.
Please take care of yourself.
Sending lots of love X
2 Likes
Thanks 
It was a lovely few days away and it reminded me what ‘normal’ feels like. Being by the sea with my children and grandchildren enjoying the sunshine was perfect. I have attached a picture from the day you may like.
I am able to visit my OH but due to the distance i am only managing once a week. Its quite difficult when he is unable to hold a conversation and just sleeps and pops to the loo the whole time im there. So i potter around his room and collect his washing to bring home.
How am i doing? I honestly have no clue.
Debbie x
5 Likes