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Hello, new to Carers uk - Carers UK Forum

Hello, new to Carers uk

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Hello, I have been caring for my husband for five years. He was diagnosed with leukaemia in 2010 and given two hours to live. He got through that and was given a 20% chance of surviving the leukaemia. Chemo, radiotherapy and a bone marrow transplant followed, he is still in remission but as a result of all the treatment now has terminal lung damage. We have a 7 yr old daughter. He has outlived the doctors prognosis but almost died on a number of occasions. He has numerous medical problems so I am required to carry out intravenous antibiotics at home myself, I also do his blood tests. All with
20 mins of training! We moved to a new area two years ago as could no longer afford to live where we did. I gave up work a year ago to care full time but after five years am exhausted and drained. The emotional rollercoaster we are on is very tiring and holding it all together is tough. We are extremely positive and hopeful and laugh a lot but I am feeling down at the mo. We cannot plan ahead for anything, in case my husband is ill. We don't go out as he is too tired. Life is tough and am fed up of putting a brave face on!
Hi, and welcome to the forum. First of all, may I say an enormous congratulations that your husband is still alive! He has been through an immense ordeal since his diagnosis, and it's fantastic that he is still here to tell the tale.....

Congratulations too, to you for having 'carried' him this far, for so long.

I do have an idea of the stress you are going through, as my own husband was diagnosed terminal some years ago - alas, he did not make it, and we lost him within the year he was diagnosed. I say that deliberately, not that you need it said, because once the cancer diagnosis is made, we all know that it is a question of 'holding on and holding out' for as long as long as one can. But you see now why I give you such congratulations that your husband has made it this far.

(We were fortunate, however, in that our son was 15 at the time, so he had had a lot more 'normal life' with his dad than your daughter has been able to have.)

But, yes, when a partner gets the cancer DX, then we, the spouse, suddenly have to 'take over', don't we? An onslaught hits us - terror of losing our partner, fear for our child/children, an urge to protect everyone we love, and, as you describe, the sheer ghastly emotional roller-coaster of treatment, and not knowing, never knowing, just what the future will bring - fearing the worst but hoping for the best....day after day after day.

It takes its toll....

It's fantastic - and maybe emotionally essential? - that you 'keep on smiling' as you do, and make the most, the very, very most, of all that you do have, and can still do. But yes, it limits possibilities, that is for sure.

Can you 'adapt' for grabbing things in 'small doses'? I appreciate you can't plan ahead (well, you could, but you know you may have to drop everything for sudden treatment etc), but could you change to being 'opportunistic' in attitude, 'seizing the day' just as and when it seems possible? In terms of going out, would a wheelchair help, I wonder (if that's not something you already have). Your husband may hate the idea, but if, say, it enables you all to pile into the car for an afternoon and get somewhere nice, just to lift the spirits and get a bit of an outing, would that help at all?

Again, you won't need me to say that one key focus has to be on ensuring your little girl gets as many 'treats' with her dad, so that, if the worst does happen, then she - and you - have as many, many, many treasured memories as possible. (PLEASE take photos - I know it's a dreadful, dreadful subject, but the photos I manage to take of us all as a family are now my most treasured possessions....)(and videos too, even more so!).

I do hope your daughter's school are being supportive, and especially in terms of having time out from the school term, if that is a better time for you to grab any holiday time. My son's school was wonderful, and we were able to go on a deferred holiday at the start of the autumn term which turned out to be our last ever family holiday, again, a treasured, treasured memory.

Finally, are you in any support groups for cancer/leukemia, either 'real world' or online? Although my husband was not a 'groupie' type of person (!), I found them immensely helpful myself, both for emotional support, and practical tips and advice, and also, I sort of served as my husband's 'medical researcher', finding out from specialist cancer support groups just what the latest treatments coming along were likely to be. Again, you will not need me to tell you that new treatments come out of research all the time, and that with cancer, the name of the game really is 'hang on in there as long as you can, as the next drug being developed may be the one that gives you another few years, another few years, another few years'......

Best wishes to you in such traumatic circumstances, and I do hope that with spring on the way, it can help to lift spirits again. Kind regards, Jenny.
I think if i may give you a ((((((((((((((hug)))))))))))))) i think you need it.