Invisible disability or people who think that you're back to 'normal!

Lol! So cute all the same!

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Hi! So pleased you made it to your son’s nativity. I spent many years preparing Nativity plays when I was teaching…3-7yr olds, and was responsible for the music. When I left teaching 16 years ago the last show was a Calypso Nativity with 60 children. I enjoyed being in the back of the hall, dancing with other staff. The children could see us , but the parents couldn’t.
It is such a balancing act knowing what we can do and medication needs. I hope that you are able to enjoy a problem free Christmas and that cancer can take a back seat until the new year. Best wishes to your family xx

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Thanks Pisces… That sounds like so much fun organising shows for the little ones!

Hope you and your family have a great Christmas too xx

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@Goody, I’m so glad you got to see your son’s nativity performance and echo Erica and Su pleased do make sure to look after yourself and enjoy the festive season.

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Thanks Bav, have a great Xmas x

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Hi @Goody,
Life does return to ‘normal’.
Just hang in & take heed of everything your medical team tell you.
Sometimes your real friends need to hear exactly what it’s like to be you at the moment. People cannot understand if they don’t know what it feels like.
I have never had GVHD. At my 2 year check my consultant asked if I’d had GVHD, when I replied NO, he just made a note of this. So I enquired what not having it meant, he replied that they didn’t really know!
Just keep taking those baby steps of achievement.
All the best
Christine

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Apparently I am back to “normal” my old friends are relieved to tell me; cancer and death being the taboo subjects that I remind them of.

Tuesday I had a GVHD clinic appointment in London.
Wednesday I had haemato-oncology appointment at a different hospital in London.
Friday another 1.5 hour train journey to London for a biopsy on my lower lip necessitating 3 stitches and a packet of neurophen. Then again on Friday ECP treatment for GVHD and same again this Saturday morning from where I write.
Back up for biopsy results next week - fingers crossed.

After 8 years post ALL diagnosis this is all “normal” - my normal.

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How we all empathise with you. Nearly 11 years after my HL was finally seen off my ‘normal’ involves more GP visits than I care for, as well as audiology and gynaecology appointments. I was only discharged from haematology 14 months ago. Good job I have a sense of humour. When an elderly lady stopped in the supermarket the other week as I was struggling for breath, and said (jokingly) that I needed to give up smoking she didn’t know where to put herself when I told her I had lost part of a lung, and I had never smoked.
What would we spend our time doing if we weren’t challenging the NHS and making these visits? :wink:
I hope your results go well. Do pop back and let us know

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Sorry just seen this message, thanks! Been another tough couple of weeks still on high dose steroids and immunosuppressants.

I’ve caught a good few viruses the past 2 months, catching them like Pokémon! One being the cornoavirus but a different strain from the one that is on the news my Drs have confirmed!!

I honestly feel I bore people now with my hospital/health chat…I actually get bored hearing myself talk haha. Once I’m off these steroids and feeling a bit better I’ll get back to my yoga/mindfullness class.

I’ve chosen to see a private counselor/therapist as I had to travel far for my regular clinic apts and was expected to see the psychologist there aswell in the same clinical rooms where I see the doctors. She’s not always available either. Hoping a more relaxed atmosphere talking to someone else might help me.

I want to talk to people about ‘normal life stuff’ but life right now just isn’t normal.

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I’ve only just jumped on the gvhd train!! Gut, oral, skin, privates!:grimacing:

Robson can I ask where your gvhd is? If mine doesn’t clear up do I still have a chance to enjoy life the same? Is there much you can’t do now that you did before? I’m dying to take my boys swimming but drs say right now it’s a big no no. Before this I didn’t even take paracetamol, I can’t stand the way the drugs make me feel.

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Deffinitely having a sense of humour has got me through! Glad to hear it helps you too! Wow just discharged from hematology…I’ve got my year anniversary since diagnosis coming up on the 13th February so many more apts for me too. Deffinitely been an eventful year. Trying to plan things to look forward to. Going to a psychic night with my sister in law’s in march, never been to one. Will be great to have a girly night though. X

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Hi @Goody. The reason why I was not discharged for so long was because of the many complications and also I had an aggressive relapsing HL. I think my consultant and myself also had a bit of mutual admiration going…he always looked so pleased to see me well :heart_eyes:
Enjoy your leisure times. I think a counsellor away from hospital is probably more ideal, and gives you more freedom as its not linked to cancer units etc
I hope your other health problems become more manageable. Take care, Louise xx

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That’s amazing that you are now finally discharged. :face_with_hand_over_mouth: Haha Your consultant must have been one of the few yummy ones. Thanks Louise xx

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Goody, my first symptoms appeared about 6 months post transplant in my digestive tract - mouth and throat ulcers with chronic diarrhoea. Anything I ate at all went straight through me, l made my peace - it was miserable. Within 5 days I was back in hospital on IV steroids. Whilst it never returned to my guts, 7 years on I still steroid mouthwash twice a day and to be honest whilst the ulcers come and go I have learnt to live with it. Next it attacked the skin on my shins, again ulcerating it, then splitting the soles of my feet and palms of my hands. And yes I too suffered from a thrush like condition below that was the ultimate insult. Overtime, as ECP sorted out my external skin conditions, the GVHD then attacked my eyes and lungs. ECP has again come to the rescue with the pulmonary GVHD but the damage to my tear glands was unfortunately permanent, that again I have learnt to live with.

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My goodness, you have really gone through the mill. The impact on your daily life, and not being able to plan ahead must be tremendous. I send you my best wishes xx

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What a rough time you have had! Are you experiencing a loss of taste because of the oral gvhd? They have spoke to me about ECP as steroids don’t seem to be targeting all the areas as well as they hoped. As far as I know ECP will be a minimum of 1.5 years of treatment? Glad to hear you are still managing well considering xx

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From a physical point of view, the fact that these personal battles have all come along one at a time has enabled me to defy the survival statistics and just get on with it. From a mental point of view, this war of attrition that I long ago accepted would have only one outcome has been much harder for both myself and those around me.
I liken GVHD to the board game Snakes and Ladders. Just when you are nearly at the finish you land on a snake…

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Good way of explaining it…after so many years I can only imagine how that has effected you and your family. I know you have probably accepted that another flare of some kind is round the corner but I really do hope you eventually get some peace from it all xx

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Hi, yes, a really good way of explaining it as @Goody says. How have you and your relationships coped with the ‘Snakes and Ladders’ effect mentally and emotionally?

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I started ECP on a 2 weekly cycle July 2014. When I started treatment, despite being on high dose steroids and Ciclosporin my body was a mess with GVHD. With the benefits of the ECP taking over my immuno-suppression over the next 6 months I weaned myself off the steroids that made me feel ill, kept me awake at night and generally made me impossible to live with! And what I didn’t realise until a year further on gave me steroid induced cataracts. Whilst I accept they are essential as a short term fix, the long term the side effects can be brutal. Not only have I met others like me who have had to undergo cateract operations but more significantly other “professional patients” who have developed diabetes and/or osteoporosis in their hips as a direct result of long term high dose use of these drugs.
2 years after starting ECP I likewise weaned myself off Cyclosporine, that at high doses not only had me up every couple of hours throughout the night to toilet but more significantly gave me permanent and lasting hypertension.

I readily accept that everybody and every cancer is different (unique) but I can categorically state without question that ECP has saved my life. Being canulated 96 times a year for the first 2 years is not for everyone, nor is being hooked up to a machine for 8 hours a month BUT compared to the evil side effects of the active immune suppresion drugs? From my own personal experience and from that I have witnessed.from my fellow transplant “victims” it is an absolute no brainer.

To answer your question about taste? I lost my sense of taste on chemo but it returned and has not subsequently been effected by GVHD. Eat hotter curries? Probably not a helpful suggestion with a mouth full of ulcers

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