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I have noticed the fear in everyone on this site , of the unknown. One cancer, two corona virus. My fear is if my blood tests go down even further, not knowing where my blood is up to and getting my medications. Volunteers have stepped in , but then its relying on others outside if things get worse. I have faced a lot of unknowns, as everyone on this site. All emotionally draining, but i am not in charge of my fate, and know in my heart and head medical staff will try to get some kind of appointment even if things get worse. I am five months in to a bone marrow transplant and will soon come off immuno suppressants. I know in my head from past experience i can get antibiotics for other viruses, but for corona virus i cannot. Its the unknown again, more time out of my life isolated.
I feel like i started a prison sentence again, for no crime committed, just when i was getting somewhere again. After breast cancer, leukemia and transplant. I know others are the same as me. Please share your thoughts on how you feel at this moment in time, and where you think you will be in two months time. Lets have some good goals and peace in our souls.
Hi Shazam and welcome to the Community.
So having been through two Allo Stem Cell Transplants I totally understand where you are coming from.
The isolation is a major part of SCT I was 6 months after my first SCT then 9 months after number two.
I have to say I am doing ok with this shielding thing as I know it’s not forever and I am healthy.
I can totally understand the risks that surround you being on immunosuppressants but you are getting close for them to be reduced. Your team will do all that is required at these challenging time to look after you, it may not be straight forward but they will do it.
How I feel at this moment?..... I feel safe, safe in what I am doing to keep clear of infection risks and this pesky virus.
Where will I be in a few months....... I think I will still be doing exactly the same as this is not going away quickly but I am content that we are doing the right things to get through this and au can sit in the back guarded with a coffee as the weather up in the Highlands will be great.
I see you joined our very supportive Stem Cell Transplant group.
Posting in this group will open up your concerns to a wider group of people who know exactly what you are going through at the moment as we have walk the SCT walk.
Follow the link I've created then introduce yourself to the group and post questions after selecting 'start a discussion' and you can have a look through some of the existing conversations and join in by clicking on 'reply'.
((Hugs)) from a distance.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
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I read your information given on joining the site, you are a very brave and intelligent person, and i thank you for your reply and time. Your right in what you are saying. I have joined several of the groups and thank you for the link that was kind of you .
I want people to be able to express themselves and open up to me emotionally and i myself for support, on our journey of life.
I am doing a lot of craft at the moment to keep myself busy, what do you like to do, what are your interests and dislikes, hopes and dreams. I find some people have terminal cancer, and it is a very hard thing to come to terms with. A negative one it seems. But i made friends with a nice lady in hospital, and she could not have a transplant, she was given five years to live. I said it could be me that love, if it where i would cherish the moments when i felt alright and days, and try to do what i could in what i wanted to do and have never got round to doing. And tell everyone how thankful i was for being part of my life, and as they go with me i will always be carried with them where ever they go as part of them. She did not want me to go to the next hospital, and i said you made friends with me and you have plenty of people who would love to know you, and bring joy in what you have left. Do not waste it. What do you think on this subject, how would you think and react.
So glad you are enjoying your weather, i have started some seedlings with gloves on of course in pots.
Hugs back shazam
Hi again Shazam, as a child in 1995ish I used to go to the Saturday afternoon pictures and there was a superhero who used to say Shazam and would change into being the superhero.
I do strongly recommend that you introduce yourself in the Stem Cell Transplant as SCT is a rather unique journey that only folks who have walked the journey will totally understand and are able to support each other, regardless of the ups and downs that SCT brings.
Keeping yourself busy with some crafts is great as it focuses the mind away from the stuff that clogs the brain and feeds anxiety…… my daughter runs an online craft supply business from the Highlands going world wide.
I love books, play guitar, have a workshop (I used to teach Joinery) so have a few projects for the back garden for our 4 granddaughters all under 7 years old to do…. when we get to see them again.
Cancer, regardless the journey you end up on is a challenge - in 1999 I was told that I was incurable but treatable and would never see remission ……….. zoom forward to 2016 I was then told I was in remission...... and I am doing great.
But under no illusions that my cancer can’t come back again, but I don’t allow this to clog my brain and replace the good things I have available for me to enjoy.
I am grateful for each day I wake up and am thankful when I go to bed. That simple foundation is a good platform for building on. In late 2013 I was told I have 2 1/2 years on the clock so this treatment needs to work - and so far so good.
A cancer diagnosis does bring life into a different type of focus and indeed, a lot of people are now going through just the same with this virus.
I will keep an eye open for you in the Stem Cell Transplant group
I have done as you have advised and introduced myself to the group. I did not do this originally as when i joined the site i applied for four of the groups as they are personally applicable to me. And also it came up on the page shazam and several other people have joined the group, so i thought i could just start conversations as it went through. My mistake. Anyway thank you so i could learn and rectify my mistake.
Its good you have so many interests as myself , i love to read to its how you learn , like i have just done. I know you will have so much fun and pleasure with your grandchildren on your garden projects. Times to be treasured , and besides you have a purpose of being here for your grandchildren and to teach others.
Thank you for the advice , and i have introduced myself to the community.
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