Great!
This new category is SO welcome. While clinical consultations with Consultants along with the specialist nurses deal wonderfully with the medical stuff and Maggies drop-in centres [if you are luck enough to have one] or Anthony Nolan's online Emotional Support are great with the emotional stuff, there are a myriad of other things going on which I'm sure many others out there are affected by .
One such for me has been trying to work out how best to deal with clothes that have to be changed and laundered daily during the time when we were applying steroid creams and moisturisers to 90% of my husband's body four or more times a day, saturating the fabrics to such an extent that normal laundering simply didn't touch and his clothes were constantly sticky! Although to a lesser degree, that is still the case. As it happened I did find a solution that works, but if anyone else finds this a problem, perhaps a place to share ideas.
Finding a way round having every minute of every day not being absorbed by health issues - for both of is - has also been challenging. Although his blood counts are currently rather poor so we are still having to be ultra careful, the lifting of the Covid restrictions has meant we have been 'allowed' to calculate the risks for ourselves and visit our [grown up] children and grandchildren [the grandchildren] for the first time since last March.
My husband was diagnosed with MCL in 2011 and having received various chemotherapy and related treatments and radiotherapies is now eleven months post-allograft Stem Cell Transplant. He has just celebrated his 70th birthday and happy to acknowledge and be hugely thankful for the skills and breakthroughs of the clinical teams, researchers and others - specially donors of course!
Out of time now - as usual! but just wanted to say thank you to the A N team for adding this category and hello to others sharing the journey [a term I used to avoid but I'm afraid does somehow seem to fit this phase of life just now].
Best wishes to all alongside.
Comments
Hi Mel - I just wanted to respond to this and say that this category is incredibly welcome for me also! My partner had a bone marrow transplant in May to treat relapsed Hodgkin's Lymphoma. It feels like we are right at the beginning of whatever our journey will be here - but I'm so pleased that there's a place where it's possible to make links with other people in similar positions and to ask stupid questions that those who are further along might have views on (!)
Very best wishes to you and your husband,
Hannah
Thanks very much Mel.
And thanks to you & others for suggesting this category. We're extremely glad we've been able to expand the Patients & Families Forum in this way.
All the best,
Tom
Hi Mel and Hannah
Although not a partner or carer, as a SCT recipient and online community champion i hope this fantastic new space gives you the space you so rightly stated can help with seeking supporting with the degree of things that can occur outside of consultations, clinical support and emotional support that maybe doesn't get covered or the above spaces can't offer support, tips or advise on. Sometimes there are things that can come from those in a similar position (role) to you, in this case partner, carer or friend.
Best wishes,
Michelle
Hi Mel,
May 21... a special time. I had my sct in the June. Still suffering from chronic gvhd. Wanted to make a laundry suggestion, add a tiny amount of bicarb of soda to the detergent draw. I have the same problem with socks that have changed colour with all the creams.
Hope it helps and greetings to hubby , all the best for you both.
Something great to report, my mouth gvhd is maybe subsiding. I woke with natural moisture in my mouth this morning for the first time in months.
Only this last Tuesday was told I have the gvhd in eyes, mouth, liver, skin and genital but thankfully the bowel gvhd has subsided.
A little ray of sunshine, much appreciated.
Best wishes to all of you
Helen
Hi Helen,
Good news on the mouth GvHD hopefully and with luck the remaining effects will start to subside too.
Steve
Thanks Steve. I'll keep you posted.
Best wishes
Helen