[Jade.WallParticipant]

Hello,

My Mum was diagnosed back in August with Myeloma and unfortunately she become very ill in the November and treatment had to start. She starts her third round of chemo next week and after this the plan is for her to have her stem cells collected. Then she will have another 3 cycles of chemo before her stem cell transplant. Mums  sixth round of chemo should finish end of April and I’m guessing she will go in for SCT ASAP. I just wondered how long the recovery process was for you all? I get married on the 5th June  and obviously the most important thing is my Mum getting better but  I really want to know if there is a chance she will be able to make my big day as I can’t imagen her not being there for the day. If the dates work out how I think they will there will be 5 weeks for her to become well enough to attend. I know she will probably be very weak for the wedding but will she even be allowed to go or do you have to be home isolated once your out of hospital.  X

[HelenRParticipant]

Hi Jade,
I didn’t have an SCT just 4 cycles then the harvest and may do SCT in future – but I wanted to write and share thoughts just as I know what it’s like when you’re trying to plan ahead and figure it all out date-wise. I don’t know if you’ve factored this all in already but timing tends to slip: e.g. sometimes they have to delay a cycle by a week because of an infection or something; before SCT they may need to do a bone marrow biopsy to check the response, then it can take 2-3 weeks to get the full result from that and discuss them, then they may need to do heart and lung functions tests etc etc etc before authorising SCT. So there’s a fair amount of faffing around and paperwork etc – even ‘ASAP’ doesn’t mean quite as fast as you may think. They also can consider things like weddings in some cases.

Oh and the harvest may also have 5-10 days of injections before it too, so that’s also a delay.

So (I hope) you may well find that the wedding fits neatly in the gap after treatment but before SCT. Of course it’s hard to predict but I really hope it works out like that. Does your Mum have a Macmillan nurse or someone who can talk you through the usual sort of timings at her hospital?

I really hope it works out!

Helen

[Jade.WallParticipant]

Thank you Helen for your reply. I hope it all works out ok too , not just for my sake but I know Mum wants  to be there more than anything too. My parents live in Spain and I’m in the England, so apart from when Mum took very ill in November and I flew out to be with her, I did meet her  consultant then but due to how poorly Mum was and the shock of it all  the wedding was the last thing on my mind and we were  just taking one step at a time. Its only now that  Mum  seems to be doing so well on treatment then it’s been on my mind.  It’s quite hard because Mum doesn’t seem to be wanting to ask her consultant any questions  about any of the treatment and she is very clueless about it all, she is just going with the flow and taking one month as it comes, which I guess if that’s what  is working for her then I completely understand. My Sister and I fully understand all about Myeloma due to researching so much on it (which I know isn’t always a good thing) and have been able to  give Mum bits of information but even then Mum doesn’t seem to want to take it in, bless her. I actually think the wedding is what is giving Mum so much strength and to be honest I think it would break her heart if she was told she couldn’t attend.  I will be visiting  Mum next month and will go to her appointments with her so may get a chance to have a chat with the consultant then.

Im so sorry for your diagnosis, I hope your doing well and I wish you all the luck in the world.

Thank you again for taking your time to reply yo my post. XXX

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