Hello!

It looks like you're new here. If you want to get involved, click one of these buttons!

Howdy, Stranger!

It looks like you're new here. If you want to get involved, click one of these buttons!

Coping for Partners and Carers

Sorry - Not so much a question but I appear to have missed the survey on the Forum and went on this morning to see if I could add that I would love to see a category for Partners and Carers. I am physically, mentally and emotionally exhausted [husband only 26 days so a long way to go yet!]. My 'free' time when he's getting up in the mornings is mostly taken up with admin and during the day with chores and I'm too whacked by evening to be able to meditate without falling asleep. I have the 'Mind' Carers coping booklet and one or two others in the same vein so know where I'm trying to go for respite but HOW do others deal with this?

Best Answers

  • Hi Mel,

    I think that's a very valid point and one that the Anthony Nolan team can hopefully consider when updating the forum. I know there are quite a few members who are carers of patients. There is a section for parents of children undergoing transplants but an equivalent section for carers might be very useful as I know there are several members who have partners, brothers and sisters or parents going through treatment.

    When someone gets ill with some form of blood cancer, or any major illness for that matter, people always ask how the patient is doing. But all too often its easy to forget about those around the patient that have to care for them when they are not in hospital, or keep things together whilst they are. I honestly don't know how my wife held it together during my treatment, taking care of my twin boys and a moody dog, whilst keeping things running at home. She very rarely showed the stress that I know she was under, but it broke the surface a couple of times over the months i was having treatment and there were a few tearful exchanges between us to keep each other going.

    Carers are truly the unsung heroes and need supporting just as much as the patients. I hope you find this forum useful, but you are right that a section for carers to share ideas and offload their concerns would be useful.

    I hope your hubby is doing OK. A you say it's early days and there is a long way to go, but I hope it's a smooth recovery.

    All the best,

    Steve.

    chelle_16
  • Answer ✓

    Hi Mel,

    I guess you and your husband are a lot longer along the journey from day 26 back in August. I hope that all is improving an getting better.

    I am in your position as a partner/carer. The first time you leave the hospital is terrifying, you don’t think you can do anything, especially after having spent so long in the hospital (my partner was in for 2 months before he got ‘released’), but, even when you’re thrashing about thinking you are hopeless, you’re not, you are sorting out the pills, counting the fluid intake, encouraging them to eat (and not succeeding!) and making sure hospital appointments are kept.

    Re-admission to hospital is not a failure for the patient or carer, the medical teams are often seem surprised that the patient has managed to get away with not being re-admitted earlier, so it is a success. Re-admissions are part of the recovery (we had 4 additional stays in total), I suspect that having the transplant, leaving on day 20 and not being readmitted is pretty rare. The thing that we found came out of nowhere was GvHD, nothing for well over 100 days and then bam, here it comes big time. Any sign you’ve got to jump on as soon as you can, even if the patient doesn’t want to report it fearing re-admission or just wanting to believe they are getting better.

    The only way I can describe being a carer is like a really long walk that you’ve no idea where you are going, how far it is, how hilly or when it is going to end, but you know that you just have to keep putting one foot in front of another. On the hospital visits you gradually move from twice weekly to weekly, then fortnightly and then even less frequent hospital visits, that is something to celebrate, even if you again go back to weekly visits. And those visits are a comfort, use the opportunity for ‘private’ chats with the nurses (esp. and Anthony Nolan nurses!), you can express your fears and ask questions you daren’t in front of your partner. They know you need this help and time and will give their time freely.

    In the same way watching the drug intake drop and reduce is something to celebrate, it’s a tangible indicator that the patent is recovering, even if they look as ill as ever, they are picking up and needing less support.

    If you can fully engage and understand the blood counts as best you can, there will be those that drop which is a worry to you both, but there is nearly always others that are going in the right direction, concentrate on those. I found watching and feeling an ownership of the numbers helped (but that might not be for you).

    If your experience is anything like ours there will be a stage when everything feels really tenuous and you don’t think things will improve, but then, for no reason that you can identify suddenly the recovery just seems to leap forward. For us that took a year from the transplant, but come it did.

    All of these are successes on your long walk; reaching the top of that difficult peak, the day you end the walking and don’t have blisters, the day you find a surprisingly good place to rest, and then eventually you are walking without finding it is an effort at all. And, of course the patient is improving and becoming more and more like their old selves. And the you can start to lean on them and talk through what you’ve been through, the hopes, and fears, the good and bad (and funny) times. Then you both start to own each other’s experiences of what is an extraordinary experience, that years after you both can’t quite believe you went through

    I don’t think life will ever be the same post transplant. But things do get better, and you’re bound to be doing fine, just accept that this is what your life is for the foreseeable and don’t and judge yourself, just keep on doing.

    chelle_16Dieseldrinker62amcnamee

Answers

  • Thanks, Steve - and for your wishes for my husband - I'm thinking a sharing of ideas as much as offloading concerns.....Admittedly I'm finding today slightly easier with the ambient temperatures falling a little and have stolen 10 mins for an exercise routine! I have sent a further and fuller response through the 'contact' email system .

  • Hi Mel

    Im also a Online community champion. Joining Steve in his role to support other memebers on the forum.

    I wqs in receipt of an Allo Sct and had mostly my Mum around. It was a tough journey for her and i think she has been left a little fragile after. I very much echo the point you and Steve have made that a Carers or Partners section would be usefull for you as a community to share where you have concerns and to 'off load'.

    I lived alone during and inbetween treatments I mostly pushed to remain independent but Im wondering in reading the things you face as both a Partner (to your husband) and also Carer (even if you don't view yourself as a carer) if you might find some emotional support helpful in supporting the juggling of so many things it is important you do find that time for your self too.

    Just from experience of having to take extra meassures to look after our mental health. Is there any way you can come up with a plan that you could fall back on when the days are a little harder?

    I think a space on the forum for this kind of exploration and dicussion is a great idea.

    Im sure as Steve says they will take this into account now you have mentioned it.

    Hope you and your husband are doing well at present.

    If there is any particular subject matter as a Partner or Carer you want to bring up please do mention it.

    All the best,

    Michelle
    Online Community Champion

  • Hi AH67 and thank you for that brilliant post. That sums up really well the observations I had of my wifes journey alongside mine and the way you describe the ups and downs along the way I can relate directly to.

    It seems like an extraordinary length of time going through this together but its so good when the walk is finally over and you can relax and look back on your achievement.

    Well done, and thank you.

    Steve

  • Just saw your post, AH67 - thank you so much. Particularly ...well, each paragraph really. ...Absolutely on the spot.
    Thank you too for your wishes - there is some improvement in that hospital visits [Day 61] are down to once a week ; some days are harder than others but I am beginning to get the hang of seeking out glimpses of life [for both of us] around the medical bits. I've got back in touch with one or two old friends which has helped.
    We have both been really grateful to the specialist nurses who encourage us to keep in touch with them [Covid precludes me going in to the hospital, but they respond very quickly to any questions on email or phone].
    Funny you should mention it - we didn't get the usual feedback on blood results last week and I've felt more anxious as a result - I think that if we don't get the info this week, I will check back with them. 'no news is good news' doesn't work for me right now!
    Who knows -we may even make a trip somewhere [local] next year and we have stopped avoiding talking about any kind of future, which helps in the 'positive thoughts' box.
    I will keep your post to hand to encourage me over the coming days-weeks-months.

    Dieseldrinker62
  • Hi Mel,

    I’m glad the post helped, and that you seem to be in a bit of a better place.

    Covid makes everything so much more complicated, but what we did a few times was stay a night in a top end hotel no more than an hours drive from home, just to get out and feel a bit more normal. Even when my partner was at his weakest, we’d do this. In a large part this will mainly for you - a night where some of the weight is taken off by ordering room service, and, where there are some different walls to look at!

  • That's definitely a good idea and is on our agenda for the future.

    For now. a practical question for anyone out there - hopefully this will appear somewhere appropriate:

    I'm in need of some help with laundry information. We are making six applications a day over 90% body area of creams. One is Enopen, mainly I think liquid parafin, which goes on four times a day ; the other is Clobaderm, a corticosteroid ointment, which goes on morning before clothes and evening before pyjamas. Between the two creams, my husband's clothes are becoming saturated despite daily laundering - which just doesn't clear the stuff out of the fibres. I've looked online and both fairy liquid and dishwasher powder/liquid are suggestions as pre-wash soaking elements.
    What does anyone else do? Any ideas would be hugely helpful.

    Best wishes to everyone else out there in the weird world of ours
    Mel.

  • Hi Mel, I hope you and your husband are keeping OK and safe.

    It sounds like your hubby is having a lot of trouble with his skin which I assume is due to GvHD? I had the option of using liquid paraffin, but to be honest I avoided it as I didn't like how greasy it was. I felt like a deep fried chip when I'd applied it! Is there an alternative you can use? I used to bathe each night in E45 bath oil which just left my skin feeling moisturised. During the day I'd use E45 cream to cover any itcy areas.

    The steroid would be more difficult to replace I guess as that has been prescribed? I was prescribed Betamethasone Valerate which is a cream rather than an oily ointment, which my skin absorbed quite well and didn't get soaked into my clothes. Occasionally I was given the Betamethasone as an ointment rather than the Valerate cream and found that it left a greasy feeling again.

    It may be worth raising the problems you're having with your husbands medical team and see if there are alternatives that are less problematic.

    I'm no expert on laundering (just ask my wife!) but as liquid paraffin is mineral oil based I guess the clothes would need some sort of pre-soak in a strong detergent that will break the molecules up. Maybe others reading this have got other suggestions?

    I hope this helps a little, but please let us know how you get on and whether you manage to find a solution that works or an alternative treatment of your husbands condition.

    All the best,

    Steve

    Tom_AnthonyNolan
  • Hi Steve, Thanks for this - yes, the GvHD on my husband's skin is relatively mild but extensive and the creams are an attempt to stop it getting too much of a grip, prescribed by his medical 'team'. You're spot on with your description of the deep fried chip - exactly how he feels though we're focusing everything on what's prescribed for now. He's on weekly checks - occasionally two weekly face to face.
    The GvHD is also affecting his gut [again, thankfully, mildly] and the meds [most notably ciclosporin, which they've just raised again to slow the GvHD] are affecting his blood pressure and kidneys. It's a bit of a game of shuffle! We're past the 6-month mark now, and much more well than he would have been by this time without the transplant so no complaints!
    So far as the laundry is concerned, I'm trying half a cup of Soda Crystals in a prewash which I think is helping, though if anyone on the forum [or your wife for that matter, since you mention it!] has found anything else helpful, I'd love to hear from them.

  • Hi all, hope you are well.

    Thank you all for continuing to support each other on this fantastic online community.

    We are pleased to announce that the online community now has a brand new category: Partners, Friends and Carers.

    Thank you for raising your interest in this category.

    This is an area for partners, friends or carers to say what's on their mind, get support from others and to connect.

    We hope this is a supportive space within the forum dedicated to anyone caring for a loved one through transplant.

    Best wishes,
    Clare

    chelle_16Dieseldrinker62
Sign In or Register to comment.