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Coping with being an onlooker to ongoing issues

Hi there. The future’s looking a little more cloudy just now – nothing obvious but a few setbacks and a general lack of improvement since my husband’s run-in with cellulitis in April and in the run-up to Day 365 post-allo SCT . Persistent fatigue, oedema, breathlessness, sight and balance difficulties, dry skin [despite three applications a day of Enopen], spontaneous bruising, continuing low Hb, White cell and neutrophil counts.. The GvHD seems to have run its course but at one time we were told that would be a problem as it could signify the graft isn’t at work so much. So lots to worry about…..’cept worry won’t help. He’s off ciclosporin, at least, now – which we are taking as a positive {?}. Gotta be positive, right?
Anyway, thanks to my husband’s extraordinarily positive outlook – after all, it could be worse and he’s seen others in the clinics who clearly are a great deal more poorly – we have now ventured out to a meal in a restaurant with our [adult] children a couple of times. His gut is mildly affected but not so much that it’s putting him off eating – for which I am SO thankful. Too scared to take much risk though in going anywhere which might be crowded, or in the sun [sun?] or too far from the hospital..or...or… etc. He gets dressed up in jacket, gloves, mask and hat to cut the grass but otherwise doesn’t do anything active and has even halted the limited progress he was making in a fairly simple DIY project in the garden. He’s not immune to low mood from time to time but somehow it rarely hangs around too long.
It’s so strange – he’s not obviously ill, but is clearly none too well either. I’m told not to expect too much improvement from now due to his age and the amount of treatments he’s had before but we are extremely thankful for the quality of life he still has.
We have to look for the positives and I get outside when I can, go for [short] walks, exercise, meditate etc. Sleep can be difficult but I try to follow the suggestions on that. Also trying to see this as a separate thing for me from how it is for him, which was initially quite hard after 44 years of marriage!
Anyway, just thought I’d drop in again and wonder if this incredible see-saw of effects and emotions is common. I have little doubt it will be but sometimes wonder how others deal with it all when they are not actually suffering all these things – after all, we’re bystanders and a bit more effort on our part to keep things running is hardly a chore - but seeing it all and what it means…I sometimes think empathy isn’t all it’s cracked up to be!
I hope you others are coping and send best wishes to all - Mel

chelle_16

Comments

  • Hello Mel

    Thank you for sharing how things have been for you and your husband of late. Empathising with your husbands continued chronic fatigue, breathlessness, dry skin, balance and sight challenges, these things can certainly make the spell of low mood valid. Although it seems he has a general predisposition to trying to be on the positive side.

    Given the challenges it is completely valid he hasn't been so motivated by his Diy project but doing these other small things you mentioned which are actually huge in comparrison to the average 'well' individual is offering some quality of life, as you mention.

    Myself, as a recipient, i coped with my holistic well being, specificaly mental health by writting down all the ailments causing me distress and breaking down how i can problem solve it i.e. resting regularly with intent before, during and after tasks/activities.

    I can't speak as a partner or carer but i can only imagine the challenges you face as an observer. I know my parents and grandmother found it incredibly difficult, emotionaly it was trialling on them and they became fatigued too. They where supported by my team, given opportunities to participate in clinical reviews, if i wanted that.

    Im hoping someone in a similar position to you can share insight into how they have experienced things during times of treatment to support you!

    All the best,
    Michelle
    Community online champion

    Tom_AnthonyNolanClare_AtAnthonyNolan
  • Hi Mel,

    Thanks for the update and I'm sorry to hear that your hubby is still struggling with recovery. It's good that he sounds like he's still staying positive despite it all and perhaps seeing people that are worse off than him helps with that.

    It does take an extraordinary length of time to recover from a transplant, longer than I think we realise and in your husbands case the celluitis and GvHD may have slowed things down I guess. It does sound positive that he is off ciclosporin. I was on that a long time due to my GvHD and it was reduced very slowly to reduce the risk of my GvHD flaring up.

    He's right to cover up when out in the sun, particularly given the issues with his skin. Even now 8 years after my transplant and with GvHD long gone I am cautious about being out in the sun. I find that it seems to sap my energy and leaves me feeling exhausted quickly.

    I still suffer from low moods too and the past year with all that has gone on certainly hasn't helped. Like your hubby it's usually short lived and I perk up again.

    It's still a case of keep building slowly and try to maintain his positive outlook. Thanks to my GvHD it took a couple of years for me to feel like I was something approaching how I used to be, but I don't think I've ever got back to the way I was. Our bodies have been through so much I think it knocks some of the stuffing out of us that never gets replaced.

    It must be hard for you seeing him the way he is compared to how he probably was before his treatment. Unfortunately I'm not sure any of us get back totally to the way we were before, and we have to accept what we often refer to as our 'new normal'. Your hubby may still have a little way to go yet, once he is over his setbacks so I hope there is yet some progression and his quality of life will improve further.

    Keep looking for those positives, if he is still in remission with no sign of his original disease and his chimerism is high, then that is hopefully a sign that his transplant has worked and his body just needs a little work to help itself find his feet.

    All the best to you both,

    Steve

    Clare_AtAnthonyNolanchelle_16
  • Hi both - I am continuing to process these things but in the meantime wanted to thank you both for your feedback. Your insights Steve, into your experience, are particularly prescient....things to ponder... Stay safe, one and all; and many thanks again, Mel

    Dieseldrinker62
  • Hi Mel, you know we’re always here to bounce concerns off, as are the Anthony Nolan team who can offer you direct support as a carer if you need it. As transplant recipients, we’ve see it from the other side and know how your husband probably feels. But we’ve also seen our loved ones go through it all with us too and at times struggle to cope with seeing us as we are. I can’t imagine how that must feel, but I’m sure there are other partners and family members here on the forum who can relate to your feelings.

    So much focus goes on the patient, but those immediately surrounding them need just as much support, if not more, as they don’t have the medical teams focusing on them as they do on the patient. We probably don’t see the changes in ourselves so much, but our friends and families do.

    I hope you have some form of support network around you that is giving you support and perhaps giving you an ability to have some ‘time out’ and get a break for yourself. It’s good that you can take yourself for walks, meditate and so on, and hopefully as things are easing you can also meet family and friends for a coffee or drink, or even a good natter on the phone. It’s so important that you get some ‘you’ time and look after yourself and I’m sure that your husband is independent enough now that you can get that bit of breathing space.

    Don’t be afraid to seek help yourself if you need it, and I’m referring to professional help, such as your GP or your husbands medical team. They may be able to help with advice or support for things such as you not being able to sleep and so on. The Anthony Nolan patient services team may also be able to offer independent confidential help and contact details are available on the Patient and Families link at the head of this page.

    Take care and look after yourself. We’re all here for you both.

    Steve

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