[bandityogaParticipant]

Hope you both enjoyed your break in Chester. We have been there and liked it very much.

Hope you didn’t wake all the guests with your partying.

Maureen x

[bandityogaParticipant]

Jean

Ask your occupational therapist. We were also assigned a social worker who organised the grant from the council. Hope you are successful .

Maureen x

[bandityogaParticipant]

Good news Jean

My husband Ian had to stop treatment early last year, to allow a bed sore to heal. His light chains were at 52 and he got 1 year remission.

Hope Michael recovers soon.

Did you get a grant for a wet room?

Maureen x

[bandityogaParticipant]

You will both be relieved.

Take it easy and look after yourself. Hope M glets stronger and will ve on his feet soon.

Maureen x

[bandityogaParticipant]

Sarah

Ian got social worker when he was discharged from local community hospital. She arranged carers (which we no longer require, a wet room, for which we received a grant. Not means tested and the reach team for physio. Ask your MacMillan nurse.

Hope M is doing well on the steroids.

Maureen x

[bandityogaParticipant]

Sarah

Ian did not have vertebroplasty either for his spinal compression. He has 4 operations to date. First to put in 2 pins to support the spine, 2nd to clean out wound as he had sepsis, 3rd to take out 1 pin, 4th to take out last pin as he had an infection .

If you have a social worker, I would push for physio at home. The reach team should come out twice a week.

Helen

Hope you are doing well on the velcade and steroids. Ian is very argumentative and emotional on the2nd day of steroids and day after. I was glad to escape for some respite yesterday.

Maureen x

[bandityogaParticipant]

Hi Sarah

My husband is on the same regime. Had 2nd velcade injection yesterday and on day 2 of steroids. A bit more emotional and talkative but otherwise well. Don’t know if this is reducing his light chains yet.

Can I ask if M is getting physio to help with his mobility? Ian had physio when he basin the local community hospital and then the reach team came to the house. He couldn’t walk at first but progressed from a zimmer to sticks.

Glad I can be of some help as we also had a horrendous year when Ian was diagnosed.

Stay positive.

Maureen x

[bandityogaParticipant]

Hi Sarah

My husband went loopy on dex too but he also had sepsis due to the wound in his back after an operation for spinal cord compression. He is now on velcade given once a week and 20.gm of dex for 2 days a week and coping well so far.

Hope this helps.

Maureen

[bandityogaParticipant]

Hi Jean
Hope Michael is continuing to improve and keep fighting for him. Ian was in a wheelchair but is progressing and walking with sticks.

Maureen

[bandityogaParticipant]

Sorry Jean it should have been retire . Predictatex bath

[bandityogaParticipant]

Hi Jean

I retired when Ian came out of hospital in October. I was working part time but found the first 2 weeks at home very hard. We weren’t used to being together all day. I now don’t know how I ever fitted work in and we go out most days even if it’s for a coffee.

Regime if you can afford it.

Maureen x

[bandityogaParticipant]

Dick

Sorry to hear your SCT has not been successful YET. There have been a few people on this forum with the same problem only to discover that after a few months they got remission so I hope it will work for you.

Will have to keep an eye on Ian’s hands and feet as he has tingling already.

Eve

I didn’t ever think we would get to this stage a year ago.

Ian is coping well with velcade so far but it is early days. A bit hyper on the dex but managed to sleep last night which is better than me. He keeps a small light on and I find it difficult to get back to sleep when I have to get up to the loo through the night. I will have to get an eye mask.

No problem with his legs yet but will massage.

How are you coping and is Slims treatment working?

Love Maureen x

[bandityogaParticipant]

Jean

What a relief that Michael is on the mend. Infections can be really bad as the immune system is lower with myeloma.

My husband Ian started on velcade today so thermometer will be out every day.

Take care of yourself too.

Love Maureen x

[bandityogaParticipant]

It was good to talk to you and Steph . Ian hasn’t talked much about myeloma and he gained information from you. I on the other hand get lots of information from this site.

Hope you enjoyed your holiday, apart from the weather and had a safe journey home.

Could have been worse, snow forecasted here for tomorrow .

Maureen x

[bandityogaParticipant]

Eve

I use a Samsung tablet which is why my posts are sometimes erratic.

Andy

We are staying at daffodil hotel if you want to meet up for dinner or a drink.

Maureen

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