My friend is about to have a bone marrow transplant

[alifromtheforest]

And I have no clue how to best support her. She's pulled away from me quite a lot during her illness, but I just do not know what to say/do. She was diagnosed with some sort of blood cancer back in March, a very, very rare form that the haematology unit hadn't seen in 25 years. She's been having chemotherapy which she's responding well to, and she's strong enough to have the transplant done but apparently she has only a 50/50 chance of survival.

What do I say in response to that?? I feel like anything I say would be wrong/insensitive. Any help would be gratefully received.

Hi - I have a leukaemia, of a type that is treated by a targeted drug and (unless it stops responding to the drug) there is no need for transplant.

But not all blood cancers are that treatable. And for some the treatments are gruelling and with uncertain outcome.

If you know the name of the one she has, you might want to look on a reputable site (such as Bloodwise (which covers all blood cancers) for information (and also see if there is s more specific support organisation).

Macmillan produce good leaflets, eg this one:

be.macmillan.org.uk/be/p-251-talking-with-someone-who-has-cancer.aspx

She’s still your friend, still has the same likes and dislikes, but has a whacking great elephant in the room. I am less bothered by people saying the wrong thing than I am by people saying nothing at all. But you know your friend and will have a better idea than anyone here about what she might like.

When it gets close to the procedure, she may not be permitted visitors for a while. So go and visit before that happens.

And get into the habit of online comms (email or whatever). She may be too tired to respond promptly, but may well like to know someone’s thinking of her during the tough bits.

Golden rule: be led by her, some days she may be very withdrawn, others she might want to ignore the illness etc.

Hi Ali I had blood cancer and am in remission after having a bone marrow transplant in February 2017. I was given 50/50 survival chance within the first 2 years post transplant but I'm doing really well now. There are a couple of Facebook groups that are very supportive so you and/or your friend can join if you want to.

Bone Marrow & Stem Cell Transplant Patient Support

UK Bone Marrow & Stem Cell Transplant Patient Support

The Macmillan discussion forum on their website is really helpful and supportive too.

Can I ask how long you were in hospital for when having the bone marrow transplant? Were you allowed visitors after a while? And did a family member donate? I have a friend who may need to go through this.

Sadly my friend is really not doing well. She was discharged but back in hospital 2 days later and she's now sedated and ventilated in ITU with organ failure. I saw her today and it was absolutely harrowing.

There's still a chance that she'll pull through though, her consultants said.

Are you the OP @originally?

That’s so sad to hear. I don’t even want to think about how it may go for my friend. She’s too young to go through this 😢

Yes I am Pib. It's just horrible and so unfair, she has a young daughter.

Just awful 😢. I think, from what I’ve heard, that to survive the bone marrow transplant is quite lucky in itself. Dreading it. I hope your friend pulls through.

Very sorry to read your update, and wishing all the best

How is she doing @originallyfromLA?

@Pitbplob

My DH had a stem cell transplant (same thing, new name) at the beginning of last year, for a blood cancer, for which this was the only treatment.
I was pretty much his only support throughout...it's a hard journey -(and a very long one) but he's doing all right now.

Is there anything specific you'd like to know?

I meant to say, almost everyone is readmitted to hospital in the first year after transplant (average number of times - three) so I am hoping that this is a "routine" one for your friend.
How is she (and you) doing?

I have lots of questions but can’t think of them at the moment. Is all contact from behind screens? Is it true that any kind of cold etc could cause death? It’s so scary.

No, not contact from behind screens.
I was with my Dh almost every day. I had to wear a disposable apron and hand washing again and again was imperative. But I was able to be involved in his care (helping him shower/dress/eat/drink, foot massaging, etc etc) and sat by his bed all the time. I wore gloves for about half an hour until he said he didn't want to hold a glove, he wanted my hand so they went!

Things need to be clean...no visiting if you have any sort of sniffle or stomach upset (and this carried on at home, for us,, probably 18 months in all, 12 of that post transplant. DH has had most of his childhood vaccinations again (as the SCT wipes them all out) and we will always have to be careful, especially of things like chickenpox, that can't be re-vaccinated and could possibly be fatal. Obviously I have to be careful too, as I can't risk bringing anything home.

But it's not "boy in the bubble". DH was allowed books, magazines, cards, tablet etc (although he really was too ill to care about any of these). The thing he liked best was getting cards from family and friends. We blu-tacked them opposite his bed and he loved looking at them all.

DH was in hosp for 23 days in total. He then had to go back every other day for a couple of months, reducing down as he recovered. His donor cells (from his brother) were slow to graft, so after almost 2 years he still goes back every 8 weeks.

Hope that helps.

Gosh. Thank you. I don’t see how my friend would be able to get there every other day I’d she needs to do that. She will need trains and tubes and they will have all sorts of germs there. Sounds like it’s going to be a nightmare. Glad your dh is ok now though. All worth it in the end.

I had a round trip of over 80 miles a day but I was driving. It was hard work, especially as I was working part time too, and it cost a lot, but while you are doing it, you just get on with it! I did 5 days at hospital, a day of work and a day to do washing/housework etc. I was lucky that I had good friends and almost every day I would come back from hospital to find a dinner on my doorstep.

Hand washing is the most important tool in your box...whenever you've been out anywhere or touched anything...supermarket trolleys, door handles, public transport...everything! I still carry anti bac gel in my handbag. Again, you get used to it.

It just shows that we are a long way from recovery. Is your husband able to work now? Or will that never be likely again? Thanks x

He's not working, no. Nor am I ( I got made redundant). It is a very very long recovery time and varies, person to person.

Thank you.

I'm the OP. Cba to namechange and I think the previous one was more outing.

Sadly, my friend passed away three days before Christmas. She had contracted flu somehow and her body just shut down. The cancer had returned immediately too. It never lost its grip.

I know it's such a cliched thing to say, but she really has gone to a better place. She would have hated her new reality. Her funeral is the week after next.

Op I am so sorry to read your update. It's tragic and awful and makes you question everything. I am not Churchy at all but will say a little prayer for her DD tonight.

I'm so sorry to hear about your friend. Anything that requires a bone marrow transplant is hugely serious and always going to be difficult. I hope she, and you, are able to be at peace now.

Thank you both.

It's weird to think that her body is still here.....and next week it won't be. She won't exist in any way, shape or form.

I'm struggling now more than I did at the time. I caught myself earlier wondering if she was free this Sat to meet up! I keep thinking of her beautiful face before she was ill and it's inconceivable that she isn't here any more

Sorry for the moan. I'll update after the funeral. She loved wine so I'll definitely have a glass or two of that at the wake 🙂

Gosh that’s awful. 😢