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Hi everyone,
Following information from UK Government and the publication of NICE guidelines, we have updated our advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Read our coronavirus guidance here: www.anthonynolan.org/coronavirus

New to the Forum

Hi! I'm new to this. My husband was diagnosed in 2011 with MCL. Lots of different treatments, all with their own distictive 'journeys' and all thankfully successful, albeit that each one was rather more briefly so than the one before. We both appreciate how fortunate he's been to have had the wonderful medical care available and are thankful for the intermittent periods of good health. Now awaiting STC transplant expected to start in a few weeks' time. Much complicated in my mind by Covid...Just feeling a bit 'stuck' so thought I'd say hi to other people out there...

Comments

  • Hello Mel

    Welcome to the forum. It sounds as if you and your husband have had a very difficult time over a number of years. How are you feeling about the forthcoming SCT?

    Thinking of the two of you at this challenging time.

    Rachel

    Tom_AnthonyNolan
  • Hi Mel, and welcome to the forum.

    You and your husband have already been through so much by the sound of it, so hopefully your husbands transplant will resolve his illness and allow you both to lead normal lives.

    Going into a transplant is nerve wracking enough without the added complications of everything that is going on at the moment and I can imagine it's a very nervous time waiting for it all to start whilst avoiding infection probably more than we usually do. I'm guessing that if the STC is due in a few weeks time your husbands immune system is already low due to the treatment he's had so the current pandemic will have brought on some added anxieties.

    Most of us here are patients and family members at various stages of transplant and we're supported by the fantastic Anthony Nolan team. We help each other get through the transplant process and I hope you'l find the forum useful and a good source of support. We've all either been through or are going through transplants so we know how it feels from the patients side. Please don't hesitate to ask questions about things you're unsure of or that might feel strange. The chances are that someone has had the same experience and can help and support you through and put your minds at rest.

    Please keep in touch and let us know how things are progressing.

    All the best,

    Steve

    Tom_AnthonyNolan
  • Thank you Rachel and Steve for your responses. Feeling a bit glum today so logged on and am grateful to see your comments. Steve , I love the story of how you came by your Dieseldrinker handle which I saw somewhere else on the site, by the way!

    Thoughts of the forthcoming STC are challenging and I mostly manage to keep the aim in sight though every now and then, the negatives creep in....With the added complications of Covid, a thought crept in last night that it could be more than a year before we enjoy the company of our young grandchildren again and that if it weren't for That virus we'd be enjoying a few days away somewhere nice before the start of things....or even just for my husband to be able to visit his mother [95 , presently not too well and living too far away for us to get to for a day] ....Hence a bit of a dip and quite a lot of anger today. Then again, I was reminding both of us yesterday that we'll be looking back on all this within a year.....Perhaps even as soon as his 70th birthday early next year.! That first thought also started just with me thinking how strange this all is and how I should be feeling, what I should be doing....is there something better or more that I should or could be or do to make it all feel better for both of us....What do other other-halves do? What do other Steves look for from their loved ones? Am I on the right track.....but then that's 'letting your mind get caught in your thoughts' I suppose [a quote from Mark Williams' meditation CD which Maggies introduced me to]. or maybe that's just too many 'I's and so should be castigating myself for being self-indulgent.....I dunno...Thanks though for your advice - any kind of normality just seems an awfully long way away right now ...

  • Hi Mel and thanks for the update. The Dieseldrinker is just something that stuck with me!

    It's easy at the stage you're at to think of all the things that can happen, but in reality many of them may not. There's no doubt there will be good days and bad, and many ups and downs along the way, but I found it easiest to take each day as it comes, tried to get over the bad days and enjoyed the good days, but always focused on the final outcome which was to get better.

    For me my focus was to get over the transplant so that I could see my boys grow up, and I set myself an additional goal to climb Snowdon within a year of my diagnosis (which I did, but it was a lot tougher than I expected). I tried to stay positive throughout my treatment and that was definitely challenging at times, but I think it's what got me through in the end.

    For you, your sights would probably be on being able to spend time with your grandchildren. I don't think there should be any reason that you couldn't see them during his recovery, despite the Coronavirus. It should just be a case of being as cautious as you would by avoiding contact with anyone that has a cough or cold. His 70th birthday early next year could be another target to focus on and cause for celebration.

    Setting those goals for when he is better may help get over the little hurdles along the way.

    And you must not lose sight of yourself in all of this as you need support too during your husbands transplant. Seeing a loved one go through a transplant must be really tough and I for one recognise the support my wife gave me, but can also see how tough it was on her at the time. So make sure you have your support network in place through friends and family so that you can take a break and spare some time for yourself.

    I hope this helps and that you can look forward to a time when you can look back on this as a memory.

    All the best,

    Steve

  • I’d echo everything Steve has said but thought I’d tell you my experience which I hope will give you grounds for optimism. I’m very conscious not everyone has the same experience or outcome but here’s mine.
    I had my transplant in 2014 and have made a complete recovery. I was out of hospital on day 16 and whilst very tired, bald and two stone lighter I made a pretty good recovery in six months and I’d say I’m now no less fit and well than the average 68 year old, a similar age to your husband.
    When it was open I was in the gym every day and we’ve been on three long distance holidays.
    The tiredness went slowly but surely,the hair came back and so did the two stone.
    I won’t pretend the treatment isn’t tough and the hospital stay boring and isolating but if you try and keep your eye on the goal, a cure, it’s manageable.
    Finally a really great bonus. As well as saving my life I have a new lifelong best friend in my donor. At the time a seventeen year old college student now a 23 year old brilliant mum of two. We are in touch all the time and I regard the kids as surrogate grandchildren.
    The best of luck to you over the next few months I really hope all goes well for you both.

    Dieseldrinker62
  • Thank you both for your thoughtful and insightful responses – I am very grateful and certainly feeling more supported today, reading them. We are at least now organising things my husband can look forward to doing when he comes home from hospital afterwards which helps.. [he's keen to revisit model making since life-size DIY will be difficult!]. Hope all continues to go with for you both too. ...Bless you. Mel

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