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

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

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

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

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

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…[Read more]

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…[Read more]

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

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

Sorry Jean it should have been retire . Predictatex bath

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

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…[Read more]

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

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

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

We sent the form away just before Christmas and were advised it would take 6 to 8 weeks before Ian would be assessed. Phoned at end of January and were advised that the goal posts have changed and will now be a12 to 16 weeks till assessment. Payment will be backdated but I cannot claim carers allowance until Ian receives PIP ? Form was filled in…[Read more]

Helen

Looked at my post and am mortified. It should have read that Ian is going on Velcade for 6 cycles. Can’t remember what sex is lol.

Maureen x

Hi Andy

Ian going on Velcade and sex on Velcade on Velcade24 March so we are going to the Lake District on 17 March for 2 days.we are staying in Grasmere. Are you near us?

Maureen

Hi Tom

Glad to see you are doing well. Must be awful not able to sleep.

Ian is going for preassesment tomorrow. Consultant wants to start him on velcade on velcade24 March even though his light chains stayed steady. They don’t want to take any chances because of his past record. We have booked a break away at the Lake District for a couple of…[Read more]