[bandityogaParticipant]

Hi Clara

We live in Dunblane in Perthshire. We don't know if my husband will get a SCT.

It is a horrible disease and hard to cope with. How is your mum coping?

Maureen

[bandityogaParticipant]

Hi Tom

I would do anything to make Ian more comfortable but yes I do have to have time to myself to.

Don't know when the treatment will resume as the bed sore has to heal before we can move forward.

Maureen

[bandityogaParticipant]

Hi David

Good idea about taking the phones of the hook as most people phone me when I get back from hospital and all I want to do is relax.

Take care.

Maureen

[bandityogaParticipant]

Hi Megan

I prefer to make meals and take them to Ian. He needs lots of protein to heal the bed sore. He had a visit from the dietician and is now on another menu but I have made lasagne to take in tomorrow.

Having a night off tonight and now sitting with my feet up and a small sherry.

Maureen x

[bandityogaParticipant]

Hi Got the night off from visiting Ian as one of his friends is visiting. I intended to do some spring cleaning but after making lasagne and doing the ironing I am now sitting down with a small sherry and will have an early night.

Ian had an mri scan today to determine how big the bed sore is. We should get the results tomorrow.

Hope you and slim are coping.

Maureen x

[bandityogaParticipant]

Hi Andy

Enjoy your holiday in Greece. Hope all goes well with the surgery.

Ian not mobile yet.

Maureen

[bandityogaParticipant]

Hi Jo

You mentioned you didn't have a SCT because of your kidneys. Did you have to take any treatment after your 4 cycles of CDT and did this give you 3 and half years remission?

I don't think Ian will be able to have a SCT so I am curious to know what happens.

Maureen

[bandityogaParticipant]

Hi Clara

Do you live in Scotland?

Good luck with your dad's SCT

Maureen

[bandityogaParticipant]

Hi David

So sorry to hear that you have relapsed. Hope all goes well on the velcade.

Maureen

[bandityogaParticipant]

Hi Eve

Hope you and Slim are coping. It must be hard when the myeloma rears it's ugly head again. How long is it since Slim had his SCT? It is a good idea to keep a diary.How about going for councelling? I have to see the same councellor as Ian this month. I will pray for you both.

Ian has an infection in his bed sore and is on antibiotics iv. He had to be transferred to FVH in Larbert for this. Basic care is very poor. Had to pull up the nurses as Ian is meant to be on a 30% tilt and they put him on his back. They have delayed the chemo treatment at the moment to let the bedsore heal.

I keep thinking Ian will be one of the lucky ones and have 10 years. I hope I am right.

Love to you both.

Maureen x

Love to you both x

[bandityogaParticipant]

Hi Eve

Ian first went to the doctor in April last year with backache and in his records he said to the gp that he thought it was something sinister. The gp is quoted as trying to assure him it wasn't. Went back several times and was given pain killers each time. By June it wasn't getting any better and he asked to be referred to a specialist. Saw a dcotor in Forth Valley hospital in June who advised that he was a bit stiff and he should go for physio. Went 13 weeks for physio and was getting worse. He asked to be referred privately and the doctor he saw sent him for an mri scan the following week. The mri scan showed a mass on his back and he was kept in hospital. It was such a shock as we were due to go on holiday the next day. 2 days later Ian was diagnosed with mm. The steroids started attacking the tumour on his back but his spine started to crumble and his legs started to wobble. He was rushed to Edinburgh for a spinal operation and we thought he wouldn't survive. The surgeon in Edinburgh said I should make a complaint about the specialist he saw. I have typed my letter but the surgeon wanted to see it before I sent it so I am still waiting for him to get back to me.

Ian managed to go in a wheelchair today and wheel himself along the corridor. It is such an achievement for him but he has a temperature of 38.4 and raised crp so he might have to be given antibiotics iv. He has mrsa in his bed wound. We always seem to go one step forward and 2 back. Won't get much sleep tonight worrying about him. I pray he will be ok.

How is Slim?

Maureen x

[bandityogaParticipant]

Hi Nerys

My husband was daignosed with mm in late October. He had been suffering with backache since April and was sent to a specialist in June who sent him for physio. We had to go private for an mri scan and that was when a tumour on his spine was detected and mm was diagnosed. Like your mum, my husband's legs started to wobble and he had to have a spinal operation and has been bedridden in hospital and partly parylised. Ian is now just finishing cycle 3 of CTD and at the start his light chains were 7000 and now down to 147, his paraproteins are 5.

It has been a nightmare for both of us and we hope that with good physio he will be mobile again soon.

Love to your mum

Maureen x

[bandityogaParticipant]

Good to know that a cure is being sought.

Donations are needed to keep up the good work.

Maureen

[bandityogaParticipant]

Hi Eva

Hope you are well and look forward to hearing from you when you return.

Ian has an infection in his bed sore. I am so frightened he will get sepsis again.

Maureen x

[bandityogaParticipant]

Hi

My husband Ian is still in hospital and we don't know if he will be able to walk or be in a wheelchair. He was 57 last week.I too feel like I have no life. I travel 20 miles back and forth to the hospital each day, and on at least 3 days, twice.

I do pilates on a Thursday morning which is a release for me and sometimes a go for a coffee with freinds.

I yearn for our old life as we were both so active, swimming, walking and travelling. I cry when I think back and don't know where this will lead but I pray for Ian every day and want him back home. I get so lonely without him but I too will have to give up work to be his carer. Life is so unfair.

Maureen

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