[Anonymous]

Hi everyone

Went to MRI yesterday to meet marc's consultant who will be overseeing his SCT in a couple of months. He was really lovely and made Marc feel really comfortable and at ease.
During the consultation he informed us that Marc has AL as well! Couldn't believe life could be so so cruel!!
He now has to have a kidney biopsy, another bone marrow biopsy and heart tests as well as trying to keep the mm under control ready for SCT.
I just want one clear month for Marc to be as healthy as this awful illness will allow him! Surely it's not too much to ask is it?

Love Pauline

[mhnevillParticipant]

Hi Pauline

So sorry Marc has this other problem to deal with. As his SCT isn't for another couple of months, isn't there any way you could have a week or so without any treatment so you could have a holiday? There are obviously difficult days post SCT so hope you can manage some quality time.

As Eve said in a different post, you have to try and stop MM completely dominating your life! Easy to say but harder to do, but worth the effort.

Love.

Mavis x

[Anonymous]

Hi mavis,
Thanks for the message. Marc has appointments every week until middle of august, with his consultants and various tests to verify 100% he has AL. Been told its 99.9% but need a kidney biopsy to make it official. He's also booked in for several tests re heart. Keeps getting really bad chest infections and they're keeping an eye on that. Then he starts cycle on tuesday, so really it looks impossible to go away. Luckily the weather is lovely now so a nice sit in the garden is called for! Marc really doesn't dominate my life, and I apologise to you and him if that's the way it comes across. I'd like to explain a little if I may. Marc has always been brilliant at planning and compartmentalizing everything. He loves lists and having an orderly regime. Before mm and it's problems he would have a mental to do list for the next 2 months! Unfortunately he is very immobile and can't do what he used to. It's really hit him hard that where he was MY full-time carer it's impossible for him and it really upsets him. He also feels incredibly guilty that he has a grandson who absolutely idolises him and can't play football with him anymore, or take him for walks. I am very, very protective of him and just want to help him anyway I can, I'm sorry but I won't apologize for that. Thats just my genetic make-up I guess, and now it's my time to try to help him and I'm more than happy to try, even though its more comical with 2 grown adults trying to do cooking , housework etc. And we're both hopeless now.
Thanks and look after yourself and stay healthy
Love Pauline. Xx

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