Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Hi, I’ve not been on for a while, been trying to sort out the many emotions going on in my head and heart.
After my stem cell last October I was ready to start living again, I knew I still had a mountain to climb but felt more ready to face it. Last year I’d signed up to five trials (what’s a bit of extra blood to save a future sufferers life eh?), one of them was a DLI trial where I would be given a top up at set intervals instead of when I actually needed it. My blood levels seemed to be recovering well, except my red cells, which the health professionals were expecting because a) that’s the sub type of my leukaemia and b) due to the mismatch of me and my sisters blood groups... anyways long story short I have become blood transfusion dependant. It was decided that as I hadn’t suffered any GVHD the docs were going to give me a top up to see if it would kick start my red cells into working properly, not a biggie I thought as it’s just like having the stem cell again minus the crappy chemo lol BUT on going to my follow up appt my consultant gently informed me that my sister has refused to donate again... at first I laughed, a weird but normal reaction from me when I’m given info that my brain can’t compute, obviously they’re not allowed to tell me why because of patient confidentiality but I needed to find out why. Don’t get me wrong my sister and I have a complicated relationship, I was surprised she offered to donate the first time but why start something if your not gonna see it through to the end... anyways I texted her for an answer and she said it caused bone and muscle pain that none of the docs can explain or get rid of?? I didn’t text back ... I was so grateful she’d saved my life but so angry that she could so easily turn her back, I don’t know how to feel towards her and have chosen at the moment to cut her from my life mentally and physically before I drive myself insane. The anger I felt, once my brain had processed all the info was about to consume my life and put me back at square one.. my councillor taught me how to use that anger to my advantage and to her I am so grateful.
Im now going for weekly blood tests, regular blood transfusions and there is talk of me maybe having a new pill to help with the iron overload problem... in six months time if my red cells don’t start working on their own I will have to have EPO injections to try and help instead... I’ve just had my day 180 biopsy and am now waiting on the results. It’s stupid but I need my sister to be winning inside but there is another part that secretly wishes she wasn’t ... sibling rivalry at its worst and ironically totally out of either of ours control.
Hi Kerrie and first some warm ((hugs))
Those having an Allo SCT have no idea what it is like giving Stem Cells. My brother had to do it 4 times and although he was happy to do it the last two harvests were very hard work but fortunately his team did take enough spare cells for DLIs as on day 281 post Allo number two I required a DLI as my counts were down at low 50% and my system needed some help.
Its unfortunate that you sister is not willing to go back for another harvest, the amount of Stem Cells required can be very small so the harvest would most likely be nothing like the first time.
What to do? There is a possibility that without the DLI all the hard work that has been done by both of you could be lost (but there are other tools your team can use) If it was me in your situation I would be in contact with her to lay the truth out and take it from there.
The post SCT journey is indeed full of twists and turns, but all you can do is to keep on pushing your team to look at ways of move this in a positive direction.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
like you, our daughter was reliant on red cell top ups, as it took her new marrow over 2 years to learn to produce red cells, bug it did happen, without DLI’s, virtually overnight. She unfortunately couldn’t cope with the meds to reduce iron overload (was loosing weight fast, tmi as to why!)
her team tried EPO and also Rituximab, took her off ciclosporin fast, nothing worked, but it just swapped suddenly from O Rh- to A Rh+, her donors group.
So even if your sister sadly couldn’t cope with the injections to boost production of stem cells again, it’s possible all may well sort itself out. And if your sister does agree, using Loratidine each day with regular paracetamol, and starting before the jabs, that lessens the bone pain.
Thank you for your replies,
I did talk to my sister just after the actual stem cell donation, when she said the pain in her back was excruciating I had said that I had had the GCSF injections twice myself so I knew what she had gone through.. I had also recommended before she started them that it would be worth taking Loratidine to help but she chose not to take them. I was being nice when I said that I had chosen not to have contact with her tbh it’s the other way round but I refuse to dwell on her decision and will face my new path with the same hope and smiley face that I’ve had from the beginning of this journey (It’s not let me down yet lol)
I have full trust in my health team and I know they’re watching me intently, I will try any treatments they offer if it will keep me alive.
I have felt so many different emotions over the last few months and I think I’m finally accepting that I will never have complete control over my life anymore but I sure as hell won’t let the negatives take over. One day at a time is all I will worry about, not tmrw as that does not exist.
Wow Kerrie, I’ve just read your update and all I can say is what a completely crap situation, my heart really goes out to you.
I must admit, the thought of what your sister has done didn’t even cross my mind - my big bro has always been someone I’ve looked up to, it never crossed my mind whether he would refuse DLI if I needed it because I can’t ever imagine refusing it if he needed it. That must be a horrible situation. It has got me thinking what I would do if I was in that situation. To be honest with you, I think I would feel a little less love towards my brother. It’s true that he would still be my absolute hero, I owe my life to him, but I would think it weird that he chose to not continue to help me when I still needed it. I must admit the stem cell harvesting wasn’t very pleasant, but when we’re talking about someone really close who really needs it, I’d hope he would do it for me.
Is there any way you can speak with your sister to ask her to reconsider? Explain how much you really need her support?
I’m really sorry you’re having to face this Kerrie. You seem to have a good mindset. Here’s giving you some more encouragement to keep ploughing on through this crapness.
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I'm sorry about your situation. Do the DLIs have to be from the original donor ? I think I remember someone on here with a similar problem, and they had to wait to find another compatible donor.
Yes I feel that life will never be quite the same - in some ways that is good. I've cut out a lot of trivia, so what I have left is of more value. I still haven't regained my stamina after 22 months, so can't plan long walks or trips out that I used to enjoy. They say my haemoglobin is back to normal but are now watching my blood sugar levels.
I just read your profile and remember well the shock of having to leave my home on a dark winter night with just a holdall, and having to rely on neighbours to bring me all the things I'd forgotten. Ever since then I've kept a 'grab bag' with all the basics in it, and keep my home tidier in case I have to give people directions of where to find things.
Several friends and family have been a big disappointment. They only wanted to help when it didn't inconvenience them. It felt that I was less important than their French lessons, bridge game or church coffee morning. But others went the extra mile, offered to be tested for cell donation themselves, or came to visit when they had serious illness in their own family to cope with.
Some people who didn't help much at the crisis time are being more supportive in the longer term. While others who were kind at the start are impatient for me to be 'normal' again, despite me keep repeating that this is a long term thing. I am having to constantly review my opinions of people and manage my expectations.
I think I would be very disappointed with your sister too if I was in your situation but think Mike is right and perhaps a phone call and meet up to lay it all out might perhaps change her mind, it certainly can’t do any harm. Perhaps she just doesn’t appreciate how much it may help you.
The stem cell harvest I found uncomfortable but that was more to do with needle size than any back pain I suffered so I won’t judge anyone that suffers badly but the thought you’re potentially saving someone’s life and especially a family members would hopefully push you through the pain. My sister is a Haplo match for me and has said she is willing and more than happy to do it for me (although I have another donor we are potentially going to try first) but I have always told her she must be comfortable doing it, especially mentally so perhaps your sister may be struggling with this aspect more than you know.
Anyway, good luck and hopefully you can sort this out.
I haven’t posted on here for a while as my husband is now 5 years post SCT, but your post really affected me.
it brought back the painful memory of the time my husband was very poorly. He was on morphine and in a bad way. His brother phoned him in hospital and spoke to him on the speakerphone, my husband told him his only chance was a SCT and a sibling would be the first choice. It still makes me sick to recall his reaction. He absolutely blew up and shouted ‘who said I will do it, I’m 64, I will have to take time off work, I have my family to think of, it’s going to cost me 2 days pay, etc, etc’. My husband just responded, yes but this is my life. At that low point we could easily have cut off all ties with him.
Luckily a 100% match was found from an anonymous donor. We still speak to his brother but I can never forget. You hear stories everyday of families brought closer by cancer and supporting each other. In my case nothing could be further from the truth. It has made me see how selfish people can be. They are so wrapped up in their own lives and not willing to put aside their routines to help out. We had absolutely no support and then my daughter in law decided they might catch something from the chemo. She refused to let us see our grandson or our son and we have had no contact for 5 years now.
My husband is doing great, he is well and so grateful to be alive that he accepts what has happened and is able to move on. I am still struggling mentally but I hold on to the belief that there are nice people out there and our wonderful donor is evidence of that.
Ah fanilow, a warm group hug from us all xx
Great that husband is doing good.
Thank you so much everyone for your replies,
Fanilow I’m so glad your husband is doing great but so sorry I have dragged up such bad memories.
I remember my sister mentioning the affect it would have on her life, with work and family but I guess I wasn’t with it enough to take the remarks seriously and she did go through with the first donation so I can’t moan about that but when I asked her why not the second time she had every opportunity to tell me the truth of the whole situation so maybe I could ask questions to the health professionals for her but she chose to just say it was the pain, if she had said she was scared or that it would cost her her job I would totally of understood but she chose to go with that simple answer and then refuse to talk to me.
‘It is true how you find the special people in your life when something like this happens... unfortunately my circle has become very small now as a lot of my ‘friends’ got bored of me being ill, I became the unsociable fart that couldn’t be relied on to go out or even have coffee with, so they don’t bother talking to me anymore... I occasionally get a ‘like’ on FB if I put an update on there which I sometimes do ironically as a reminder for me lol.
I know I sound so bitter but I’m not... life goes on, I understand that and when I manage to get some normality back into my life, I get to make new friends and try activities that my new body can do .... a goal I look forward to!!
your remarks about friends is sadly very true, it’s when you yourself are in need, that you find out how true your friends are. And there are times like that, that your list of friends diminishes but you then find true friends, people you hardly really knew before, who step up and stick by you.
the saying ‘you can choose your friends but are stuck with your family’ is sometimes sadly also very true.
daughter was the mainstay of a quartet of musicians, organising them, getting gigs, finding appropriate music, fixing meetings, (having done Theatre Studies, she has a natural introducing and announcing style so did that too) practises and so on. And thought the other three were her good friends. Sadly, when she was just out of her auto (years before her allo) on a gig, one was overheard to say ‘it’s a good thing ____has been so ill, she’s been able to do all the Admin work’! Have to say, if that had been me overhearing it I’d have given them a good tongue lashing! Needless to say, daughter left the quartet, unfriended the other three for many years, and the quartet has never again been as successful!
But those friends you (and she has) make now will be among your friends list for many years to come!
Fanilow, so very sad that you’re both still out of your grandchildren’s lives.
That really bites. I'm sorry. I hope that isn't your last ditch effort and that your numbers turn around or a new donor is a possibility.
Hey Kerrie, I haven’t been on the forum for a while, so have only just seen your post. I am so sorry that this additional stress and emotional pain has landed on you. It sucks. As others have said, you cannot choose your family.
As a donor (who’s donation didn’t go well, resulting in a visit to the ER and 2 weeks to recover) I do understand the impact that it can have. That said, I would do it again in a heartbeat. I think maybe because I have the mindset that whatever I went through pails into insignificance to what my sister continues to go through (Day 229 post SCT, which hasn’t worked, still transfusion dependent, first DLI top up 2 months ago).
We all get wrapped up in our own life bubbles. I am not sure if it is worth catching up face to face with your sister, not to ask or pressure, but so she can see how you are, understand how things are for you. Maybe if she sees what you are going through, she will find it in her heart to give you this gift.
Either way, stay strong and take care of yourself. I’m sending love and healthy vibes your way.
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