Sarah

I take one day at a time and try not to look to far ahead. Ian is walking much better and now walks a little without sticks so do not give up hope that M will progress. Hope the treatment is not too harsh on him.

Thinking of you both

Maureen x

Sorry to hear that younhave relapsed. Hopefully you will get treatment which doesn’t have too many side effects and will give you a long remission.

Would you go for another SCT?

Maureen

Izzie

My husband will have to make the decision to go for SCT if he reaches remission. It must be very frightening but if it was me I would always wonder what if.

Hope all goes well and you will get a long remission .

Maureen

Jean

Hope the results of the MRI are good and you get away ok. Are you going somewhere nice?

Maureen x

Sarah

Good luck with the new treatment, you certainly deserve it.

Maureen x

Jean

Hope you got good news today. I dread meetings with consultant too.

Maureen x

Dick

Ian had Neuropathy with CTD on previous cycles . He has noticed a slight change in his legs but nothing to be concerned about yet!

Have your FLC reduced?

Maureen

Staying at Rockliffe Hall, got a very good deal. Plan to visit Durham and Harogate

Maureen

Hi Helen

Enjoy your retirement. I was wary of retiring but now I don’t know how I fitted work in. An hour extra in bed, and taking it easy. Out for coffees, massage and breaks away. I also do pilates and sing in Rock Choir.

Ian finished first cycle of 6. Results on 28 th. Fingers crossed it’s working. Off for a few days tomorrow to Darlington…[Read more]

Hi Richard, thanks for your reply. Another couple of tips in your reply about attitude and there being no point in feeling guilty. Your are right, but easier said than done sometimes eh?

Also rereading your earlier post, I must also make a point of remaining anonymous.

Regards
Karen

Hi LoisLobann and all. I have not been on for a while so I have only just noticed this. I totally identify with Alpenator’s words about realising this is it, never going to get the old me back. And of feeling guilty, I too feel very very guilty I have inflicted this on my husband, and daughters, they do not deserve it. I am also on a lot of…[Read more]

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