I feel the need to let it out...

1 minute read time.
Where to start...ive been reading over this site for a few days now and just couldnt start a thread not even to introduce myself. So i decided to blog ,to use it to gabble away my worrys & fears. Im 39 and my partner paul is 38 he hasnt been well for a couple of months now,he had blood tests 10 days ago on the friday by saturday morning he was admitted to hospital. We sat waiting to see the doctor i sensed that we both knew this was serious but unable to share our fears. The doctor said it was serious,took notes asked ?s ...after a while came back and said it was leukaemia and that after bone marrow test it would confirm what sort acute myeloid leukaemia. Im still very shocked and very lost...not sleeping well 4-5 hrs a night...with paul im being very brave but behind closed doors i keep crying...worried that he wont get better. But feel like its a waiting game...and that there are no answers which there proberly isnt right now as its early days. He decided to take part in the trial and has been having chemo from day 1 ...they are giving him a combination of 4...hes had several blood transfusions...he feels okay and hasnt been sick as yet. He isnt a man of many words ... and im worried hes bottling up emotions but maybe thats his way of coping... Im confused as to what to expect next since the docs told us i feel like its a waiting game and thats the hardest part for me not knowing... There doesnt seem much info on here about leukaemia so any answers or help as what to expect would be appreciated. Thanks
Anonymous
  • FormerMember
    FormerMember

    So sorry to hear of your partner's diagnosis.  I am sure you are still trying to come to terms with it.

    I have cried buckets of tears since my sister's diagnosis,   and I am under no illusions she is doing the same.  Being strong is what you want to do but make sure you take care of your own emotional wellbeing  because all that stress will make yoi ill.  

    Your partner will be bottling things up, as no matter how close you are, there are things he will not share with you as he will feel he doesn't want to burden you, it is how my  sister is and I feel like screaming "Just share it with me, tell me how you really are" but you have to allow  them to have their feelings and privacy sometimes no matter how much it hurts.

    All you can do is be there to support him, it is good that they are starting treatment straight away, he will be quite tired during this, just be there but  try not to suffocate him, something all of us do and it can be infuriating for those we love!!!!

    It is a waiting game, you are right and there is nothing you can do about it, in the meantime, why don't you come into the chat room and talk to us , the reason most of us do that is to share our fears, laugh a little even cry a little, and let it all out on here instead of to our loved ones, because you will also find you may not be able to talk to your partner about how you feel too!!!.  We are a friendly bunch, don't be intimidated because you may get the impression we are all "tight" and know each other, we just all share a "bond" because we all know what we are going through.

    Good luck with yoiur partners treatment.

    Jo Mac

  • FormerMember
    FormerMember

    Hi there, In Feb 2008 me and my husband had a similar experience except he hadn't been feeling too bad beforehand and was found when he went to give blood - he was diagnosed with multiple myeloma which is a blood disorder a little bit like leukaemia, a terminal illness but he should have some years... I'm writing that only because I know a little bit of what it feels like to hear a shocking diagnosis. I shook for about a week, cried and cried, but you can't cry for 24 hours/day can you?

    I wasn't ever particularly brave and in fact we agreed to be very honest with how we were feeling as it felt like we should share everything; otherwise are you supposed to make small talk and be polite? It affects both of you and your families; that's why this site is for anyone affected by cancer.

    I'm lucky that my man is still here and quite well after 10 months of treatment last year, but I feel for you going through the awful first few weeks, so I really hope he feels better soon.

    An easy way to the info on leukaemia is to click on 'cancer types' at the top of this page and then leukaemia. You will get links to all the leukaemia postings on here, but on the right of the screen at the bottom, there are also links to the official info on leukaemia and its treatments etc. I hope that helps a little,

    Best wishes to you both, Clarity

  • FormerMember
    FormerMember

    Im sorry that we have to meet like this and wish you both the best with your family members.

    Thanks girls for your messages i have taken your advice onboard i will pop into chat at some point lifes pretty manic at mo takes me 2 hrs  on public transport to get to hospital oh joy! lol But worth it! My sister picks me up at night so ive lots of support and help.

    Its day 11 and its a juggling act getting kids sorted ,running home ect but getting myself finally into a routine!

    kez

  • FormerMember
    FormerMember

    If he isn't sharing, sometimes there's nothing to share.  Sometimes, you just need to be together, to go out for the day, relax, listen to the birds, but have fun and be happy.  It can be a chance for rebonding in a way you didn't do at the start.  A couple of days at the Seaside, or in the Forestry Commission cabins, can be the break you need.  

    Sit still for five minutes and worry.  Do it on purpose and worry about the worst possible scenario.  Keep doing it in a 5 minute burst  every day until you get bored with it.  I got bored in about 3 days.  The benefit is that you then can't worry spontaneously, and never at night.  Just getting a good night's sleep can make you both feel a lot better.  Then you find you only worry about the next stage.  The next scan, the next appointment.  I remember the last scan, and only think about the next one on the day I see the doctor and get the result of the next one.  It seems cold and clinical, but it helped me to support my family while I had cancer.  

    I told my husband that unless I said so, I was in no pain, and unless I was actually sick, mostly I had no nausea.  The chemo sessions were the worst because I felt sick all the time I was in the centre, and if they messed about wasting time, I would get upset.  

    He will need plenty of rest and keep his fluids up.  The recommended fluid intake is about 2L a day, and he should keep to it.  It helps when chemo knocks you for six.  A litre bottle of water in the room is less of a shock than ice cold tap water, so make sure he has plenty of ambient temperature water around.  Helping in a practical way, will help him relax, because seeing you relaxed will help him to talk if he needs to.  

    I hope this helps

    Rwth

  • FormerMember
    FormerMember

    I am so sorry to hear about Paul's diagnosis, you are right it is a waiting game and waiting is not easy is it, although you do have some distractions with the children!!  Life must be so  busy for you. Where is Paul being treated? It is a fact that the treatment for AML is very agressive and very intensive, there will be side effects, the immune system is wiped out and that is what the treatment is designed to do! There are quite a few AML sufferers and carers on this site and I am sure they will be in touch in due course. There are also some very informative and 'real' blogs, especially once you know which treatment route Paul  will take.  Several leukaemia sufferers and carers have found that writing a daily blog has helped them, and others have all supported and shared updates. I am not a sufferer myself, I found this site when my brother was poorly and found sme fantastic support and also made some good, albeit remote, friends.  I have a fair bit of knowledge myself about AML, treatment and options. Please feel free to ask me anything at all and if I can help or support in any way I will.

    Meanwhile I wish you and the family well - this is for sure a good place to come for support. Look ater yourself, the road is long and bumpy and you will need to remain strong

    Take care, with love Debbie xx