[jellybabyjanParticipant]

Hi Eve

Thank you for your wise words. Mike is doing very well since I last wrote. He has very few low BP incidents now and the wheelchair is redundant. We feel like a miracle has happened! We know it is probably down to ‘no chemo’ and he will have to go on another one soon, but we are enjoying the moment. We are making the most of each day and still ‘hoping for the best’.

Jan

[jellybabyjanParticipant]

Hi Karen

Things have got worse since Sun. We’ve now been told by his consultant that this could happen any time and we might not be ‘so lucky’. Prepare for the worse, hope for the best. They have contacted our local hospice. His BP tablets have been doubled and we now have a wheelchair. So far so good. We are shadowing his every move and ‘hoping for the best’.

Jan

[jellybabyjanParticipant]

Will do. Thanks.

Jan

[jellybabyjanParticipant]

Hi Pat

Sounds like you had it tough in the beginning. I'm hoping he will feel at lot better when on Dialysis. He's is having Peritoneal Dialysis at home at night because he can't have Haemo because his heart can't take it. Quite confusing and complicated so we have to go on a training course for 3 days.

On another note, we hosted a quiz night on Fri in aid of Amyloidosis and raised £1,030.00. Fantastic night and so well attended. Thoroughly enjoyed it and Mike was great!!

Get excited about your holiday. Part of the fun of going away is the build up!! 😎

Jan x

[jellybabyjanParticipant]

Hi Pat

I see you have had the same treatment as Mike. When was you first diagnosed? They've told him this will be his last cycle (6) as his body can't really take any more. His FLC are at 53 atm. I think Mike's kidneys are beyond re-generation like yours, which is a shame cause he's not looking forward to Dialysis. Like you his hands are ok but it's affected his feet quite bad. Terrible coldness and numbness. He's on a cocktail of drugs every day and hates taking them!

Glad you got to see your daughter and grand daughter, and you managed a trip so far away. It makes you realise how precious family are when the chips are down! Ours have been amazing. I couldn't have got through the first 3 months without my kids. We were told later on that Mike only had 8 weeks to live if he hadn't started treatment!!! Scary eh!!

You are right about everything of course, I just have to realise it myself!! I think it's because Mike has it in his heart that I worry so much. He has been very unfortunate in that respect but we have to deal with it the best we can. It's not just gonna disappear!!

How very exciting for you and Kev jetting off to America. I'm sure it will be the trip of a lifetime! Enjoy 😎

Jan x

[jellybabyjanParticipant]

Hi Mavis

Thanks for your lovely post. Yes we are both young and that's what I find hard coping with. As I've said, I don't want to be on my own at 46!!
Mike has Amyloidosis not MM, even though the same drugs are used. He has come such a long way since May and we are grateful for every day. Sometimes though, you feel angry, annoyed, upset and all the other emotions and the 'why us' question.

I think because he has it mainly in his heart we worry a lot more. His kidneys are shot to pieces and he's going on Dialysis very soon. So that can be sorted. But his heart, that's a different ball game. He can't have a new one, they've told us that!!

Keeping my fingers crossed (permanently) for a cure 🙂

Jan x

[jellybabyjanParticipant]

Hi Megan

Thanks for the info about SCT. Mike has his 6 month, 2 day check up at The NAC in Dec. I'm gonna ask then about it. Just want to know if it will help him and if he can have it. If not then we'll have to cope without!! It seems that everyone has Amy in different places and has gone through different treatments for this disease. I'm just praying for a cure ASAP!! 🙂

Jan x

[jellybabyjanParticipant]

Hi Gill

No I've not been on that one. I will look it up, thanks 🙂 I'm on the outskirts of London and my husband travels to The Royal Free Hospital in London each week for his chemo.

Jan x

[jellybabyjanParticipant]

Hi Gill

Yes I'm a member of Inspire. Is that the one you mean? Very helpful but I wanted a UK based forum as well.

Jan

[jellybabyjanParticipant]

Hi Megan

Glad to hear that Phil is much better. I know Mike is too because I saw him at his worse in May and he was very close to dying! To see him now is remarkable. We are thankful for this. I'm trying to live one day at a time but I guess it's gonna take time to be like that. It seems something different happens every week that sets him back. At the moment it's being sick nearly every day and postural hypertension. He's not had any chemo or steroids for 3 weeks now and we think that could be causing the sickness. Hopefully get some answers on Thurs.

Everybody is so nice and helpful. I feel better when I hear of others with the same issues, (wish we didn't!!) I'm hoping Mike can have a SCT but at the beginning it was a no no. Not sure if his heart can take it. I believe this is the way forward for us.

Jan

[jellybabyjanParticipant]

Hi Eve

I did ask lots of questions when I went up with Mike to the hosp. Now he goes on his own as I'm back at work, I give him a list of questions to ask and I expect a full list of answers in return!!! He does his best bless him. Each week we have another shed load to ask as different things happen. I have no problem with this as I need to know and understand the enemy. They are really good and very honest with us. Sometimes this is hard to take though. I thought I knew it all and then something else happens and throws a spanner in the works.
Thanks for your words.

Jan x

[jellybabyjanParticipant]

Hi Eve

Hot drinks are a real problem for Mike as he has a fluid restriction of 1.5 litres. He finds this very challenging because of his dry mouth. He relies on chewing gum and sweets. I know I shouldn't try to look to far ahead but it scares the bloody crap out of me and I'm normally a planner!! As I said I want to celebrate our 30th, 40th and 50th wedding anniversary and grow old together, this is what I find difficult.

Sorry but need somewhere to get it off my chest 🙁

Jan x

[jellybabyjanParticipant]

Hi Tom

He is ok in bed cause he has me to cuddle!!!! 😉 I bought some long sleeve thermals and some long johns yesterday and they seem to have done the trick today. 🙂

Jan

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