Hi Jules
Glad to hear a bit of good news. Hope your Mum keeps improving and keeps comfortable.
Love.
Mavis xxx
Hi Wendy
Just wanted to touch base and wish you well. I am sure you will sail through the treatment you are so determined. Hope you can enjoy life in spite of it. Shame about the cancelled holiday.
Love.
Mavis x
Hi Helen
Good to hear from you again. Such good news about remission – long may it last! Have you finished work for good now? I hope so. You have struggled on for so long. No doubt, as you were "lying under the infrastructure" you realised that there are things that are more important than others!
I do hope you are able to fill you days with good things and many things as equally exciting as the Rolling Stones!
Lots of love.
Mavis xxxx
Hi John
Just to say welcome from me! Also wish you a long remission. Bet you are putting the time to good use and keeping busy.
Best wishes.
Mavis
Hi Linda
Just to let you know I am thinking about you and your Mum.
Lots of love.
Mavis xxxxx
Hi Tina
It was good to catch up with your news. Sorry you have been feeling down inspite of a good remission.
As Jan says, you have been through a lot. Not just the treatment, but also the Trial. Maybe a period without treatment is just what you need so you can enjoy your remission and do some of the things that will give you pleasure.
How is your shoulder and your health generally? Will you be able to plan a holiday? I have now managed two with lots of planning and "aids"! Now planning my third.
The talking cure with a Counsellor often helps when you are down. I also found taking Jet's advice and making a list of things I want to do before I die has been very helpful!
Lots of love. Keep in touch.
Mavis x
Hi Dai
One thing occurs to me re your tooth saga! If there is no infection why can't a dentist just do a surface filling without going too deep? Just replied to another post … When I needed three roots out I had to stop Zometa for three cycles before they would do it, then leave it off for three afterwards. I was also given preventative antibiotics. I guess in an emergency they can't make you wait three cycles, but can give the antibiotics, as if you haven't had enough, and then leave off three zometas afterwards.
Sorry you have yet another thing to cope with. This MM is a b—–r!
Love to you and Janet. (Is she developing muscles pushing wheelchair or is it self propelling, but can't imagine that!)
Mavis x
Hi San
Great news about your Mum.
I had to have some roots out. I had to stop Zometa for three months before and three months after. I also had to have the work done at the Dental Department who prescribed me antibiotics and monitored me afterwards. It all went fine and I had no adverse effects from period off Zometa.
Best wishes to your Mum.
Mavis
Hi Jules
This is all so much to take in.
When I was asked if I wanted resuscitation if needed, while I was in hospital, my immediate response was "no!" I did have a discussion with the Consultant who said, with Mm and all the bone involvement and other complications, even if resuscitation worked life would have no quality. I decide it would be better to slip into the beyond rather than live a wretched existence here.
I guess it is hard making that decision for someone else, but previously, when facing life threatening surgery I had told surgeon and my family I didn't want to be resuscitated.
Do sorry the family are having such a hard time. I do hope your mum either takes a real turn for the better, or gently slips away.
Love.
Mavis
Hi Greg
Welcome to this Site. So sorry you have had to join us and so sorry your wife has had such a bad time.
My own problems with chemo treatment didn't start till later, but I got shingles and spent a week in hospital with sickness and some kind of infection. However, I was given two different sorts of anti sickness drugs up front and they kept things under control apart from this one occasion.
Having said all this, after six regimes I was in remission and have been for a year now. For various reasons I haven't gone for a Stem Cell Transplant (SCT).
It is hard but you will both find the strength to get through. Do keep in touch and let us know how things go and ask any questions. I have found this site a real life-line.
Very best wishes.
Mavis
Hi Christine
Just sending good wishes and love.
Mavis x
Dear Maureen
So glad that Ian is expected to come out of hospital soon. I remember so well doing my first few steps after having the similar operation to Ian. It felt like climbing a mountain and I had to have a special "pulpit" Zimmer to give me additional support as I had already had four hip operation! At that stage my plasmacytoma had't led to the diagnosis of MM. That came later after biopsy and blood tests.
I have always found I made more progress with the physics who came to the house. After that initial operation I was back walking on elbow crutches within a couple of months. Not great distances, but enough to begin to feel moe independent and to dispense with Carers.
I had a second episode of losing my mobility. Although I could do a minimal amount fairly quickly, it was only the impetus of my daughter moving tomLuxembourg that got me to request my latest physiotherapy at home. It has been like a miracle. I still use the elbow crutches out of the house, sticks inside, but can't believe how much more I can manage. DOING the exercises is the key. I have now been to Luxembourg twice, flying with my electric scooter. There is life at the end of all the treatment. You just have to hang in there.
I'm certain Ian will come on in leaps and bounds once he is home.
Love to you both.
Mavis x
Hi Scott
Have been away so just catching up properly with posts. Just wanted to wish you the very best. At those bad times just think of those pesky MM cells and see it as worth it to kick them well and truly into touch.
Wishing you a long and healthy remission when SCT is a dim memory.
Wishing you well.
Mavis
Hi Dave
Pleased things have gone so well for you.. One thought, have you had any bone involvement. If so I would be pressing for monthly infusion of Zometa or similar.
Very best wishes.
Mavis
Well Dai
They do owe you some claw back time! Just hope the darned stuff works its magic.
Love Mavis x