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What will normal be?
This was the question I kept wondering about. Back & forwards to the outpatient clinic post SCT & semi-isolation at home, no contact with my young nieces & nephews, or anyone who had anything etc. for the first few months......
Well 5½ years on life is normal!
Last week I was able to go upto visit my daughter & go for a massage & lunch in Harvey Nicks.
I was retired due to ill health for a job I loved, as it wasn't a good environment healthwise, I had to accept it. But have just signed up to volunteer at the local oncology dept MacMillan Information Centre.
Can't wait to be able to give something back & perhaps help others.
I'm so glad to be around for my close & extended family, to be a MUM, WIFE, DAUGHTER & FRIEND to all who cared about me when I was up against it.
Still enjoying 'Good to be Alive Days!'
Well 5½ years on life is normal!
Last week I was able to go upto visit my daughter & go for a massage & lunch in Harvey Nicks.
I was retired due to ill health for a job I loved, as it wasn't a good environment healthwise, I had to accept it. But have just signed up to volunteer at the local oncology dept MacMillan Information Centre.
Can't wait to be able to give something back & perhaps help others.
I'm so glad to be around for my close & extended family, to be a MUM, WIFE, DAUGHTER & FRIEND to all who cared about me when I was up against it.
Still enjoying 'Good to be Alive Days!'
Comments
I am 18 months post transplant. I think about my transplant and my health every day.
I am still having a bit of treatment, lymphocytes every 3 months which I guess doesn't help the thoughts of being 'ill' go away.
I don't feel ill. I do like to sleep and if I have a few busy days I can be wiped out for a few days/week (I'm thinking Christmas!!)
I lost my job due to my transplant. It doesn't just take away your health, it can take away the career you had and financial stability. HOWEVER!!!!!!
I love my life now. In some ways it is better than before!!!!
I appreciate everything I have and every day. I am a volunteer presenter for Anthony Nolan (R&Be), I have just launched my own Inspirational speaking business, I am at home when my daughter gets home from school and my son from work. Last summer was the first summer I have had at home with my children, my daughter who was 15 said it was the best summer she had ever had....and we didn't even have a holiday. Blessings come in many forms and I count mine every day. I
I'm reminded all the time to be vigilant about hand hygiene especially when visiting cafes, bars, restaurants and using public transport. When I was recently discharged from hospital I was told frequent hand washing can help to avoid viral infections.
I'm trying to return to normal or to accept a new normal.
Now I find myself listening to my grown up children who encourage me to engage decorators to decorate and other tradesmen to do odd jobs that once I would have done myself. I'm told to go out and enjoy myself with my wife, I think they are right, we are now going out for more walks, coffees and meals, I have one day a week doing voluntary work, slowly we seem to be getting back to the new normal.
That is until this week when I was told my youngest grandson had chickenpox, it was discovered Tuesday, I had seen him on Sunday and Tuesday! I knew it was bit of an issue so after contact with my local hotline number I was given a vaccine today with antibodies which I'm told should solve the problem. I can then carry on getting back to normal and enjoying life and see my grandson again.
I was allowed to fly to Portugal at nearly 3 yrs, fly to Barbados & cruise the Caribbean 9 months later. I never thought I'd do that pre-illness let alone post! I cruised for 28 days from Chile to Sydney last February, cruising past Easter Island, the Pitcairn Islands, calling in at Tahiti, Bora Bora, Fiji, New Caledonia & Brisbane. Unbelievable! Lucky enough to cruise the Caribbean last November again & am flying alone to Dubai in March to spend 2 weeks with a girl-friend who's lived out there on 3 different occasions & is possibly coming home for good in the Autumn. So it was now or never! Had to be earlier before the temperatures got too hot. BUT I always wear my Factor 30! Was told I should wear F50 but I'm a bit of a rebel & didn't want to end up with rickets!
So anything is now possible. And I'm doing it all while I can.......
I'm about 14 months post-transplant and in myself, I do feel normal. I have some GVHD complications which manifest themselves in my skin, primarily on my hands which can get very dry and sore. I've been on steroids (Prednisolone) since about May last year, and Photophoresis since September and the GVHD seems to be coming under control.
Other than that I do feel normal and am attempting to do some of the normal things I used to do, including some gardening. I get breathless more easily than I did before my illness, but I guess that's just a case of building up my strength and stamina again, though I was never the fittest of people anyway.
I'm working again, albeit being based from home rather than in a busy office or on a construction site as I used to. I hope eventually things can return to normal so that I can go back to the job I enjoyed properly.
I'm constantly conscious of avoiding infection and am fastidious about hygiene, particularly hand hygiene. I seem to be having difficulty instilling the same into my 12 year old twin sons!
I hope normal does come back but at the end of the day I'm thankful to be still here, so if surviving means there are certain things I can't do any more, then I'll take it.
Well like I said previously my 'normal' is actually better than my pre AML normal! I haven't experienced GVHD & at 2 yrs asked what that would mean. My consultant said they didn't really know. I'm still here & extremely fit & healthy.
Stamina - this gradually builds up. I remember coming home & struggling to get up the stairs, well now I go to the gym 3 x a week & swim 2x & attend Aquafit. When I started swimming a month ago ( always first thing in the morning when the pool's cleaned overnight) I managed 10 lengths, well last week I was up tp 24 lengths! I do find I have to pace my weeks, do something one day & not quite as much the next.
Heather, I'm sorry to hear that you've had a very personal negative effect of the treatment. I was lucky to have already completed my family & was already fast approaching the menopause. It must be SO difficult for you when all around you seems to be having just what you long for.
I realise I am VERY lucky that apart from some pain from the shingles that got me a couple of years after transplant that they knew I stood a 99% chance of getting once they stopped my Aciclovir, located in top right quarter of head & on my eye, which has left me with ants clog dancing across my right temple & strange pains in my head, resulting in raising the total of tablets taken each day. I know I'm so lucky to still be walking the planet, literally.
I am last man/woman standing from 4 females who became friends at outpatients clinic, even though they try to dissuade you from doing so. I feel very lucky but sometimes the guilt is a strong emotion but at those times I do something that I know all 4 of us would have enjoyed or benefited others from & that helps a little.
Was in London yesterday at Luekaemia & lymphoma Research HO having photos taken for the launch of a new part of their website, went on my own, something I wouldn't have had the courage to do before!
So today I've stayed in bed late & am having a day infront of the tv with my knitting. Tomorrow I've got my induction as a 'Macmillan meeter & greeter' in their info centre at my local hospital, so I'll be trying to use my grey cells tomorrow!
Good luck to everyone & like they keep telling us, everyone's journey starts from a different place & follows a varied route.
Just stay positive!,
Christine
Just thought I'd let you know that my body is telling me I've done too much over the last 2 weeks, swollen glands in my neck, so I know I need to slow it all down a bit.
I have pruned 3 rows of champagne vines in the last week, a very physical task but also very enjoyable, especially when you receive the fruits of your labours - 7 bottles /row last harvest!
I did my second stint volunteering at my local Macmillan Information Service. Only 3.5 hrs but I was absolutely drained after that. Not used to learning & concentrating all at the same time.
Went for a 4.5miles walk with my friends yesterday but today I am listening to my body & not going to gym or Aquafit today & taking it easy.
It's surprising how quickly you forget your limits. Back to pacing myself over the weeks to come, a busy day followed by a more relaxed day.
My trouble is that someone will give me a call to suggest something & I'm such a sociable person I find it difficult to day no!
The thing a friend I met at the Leukaemia & Lymphoma Research HO reminded me of was another piece of very valuable advice I was given after transplant & that was 'Little Steps'. So I'm back to taking Little Steps instead of giant ones!
Christine
I hope you are feeling a bit better soon.
Chiara