Hi Both of you!
Do revel in such marvellous news!! May it last for ever. Well, we can always hope and pray!
Love Mavis x
Hi Maureen
I am a real believer in Physio. If you have a good therapist they can work miracles provided Ian is willing to put in the work and i am sure he will.
I have returned to mobility six times so I know it is possible!
Lots of love Mavis x
Dear Sue
My thoughts and prayers continue to be with you.
I am relieved to know that Michael is at last free from pain and at peace, but I appreciate just how empty and low you will be feeling. Your grief will be harder to bear, as you have been carrying such a heavy burden these past couple of years, as you have valiantly fought this horrible disease alongside him.
You have been a wonderful wife. Those of us who are the MM suffers will realise just what that will have meant to Michael, and how much that loving care and support will have meant to him, and kept him going through the darkest nights. We will also appreciate, as Dai has expressed so well, just what a gift it was that you enabled him to be in his own home till the end, at such a cost to your own health and strength, and what a battle you fought to get the support to enable you to do this. We will all admire you for it.
I do hope you are able to plan a funeral that is a fitting celebration of the good, pre-MM. days of Michael's life. His family life will be the
biggest part of this.
The will be very dark days ahead, it is the cost of such a deep love, but I do hope, that your closet friends will be there for you. Do let them know what help you need – even if it is just someone to be there while you weep you tears.
I am glad you and your daughter have got each other.
Much love.
Mavis xxxx
Dear Sue,
It's strange, I came on Site to send a message to you, as I was thinking of you and Michael this afternoon, as I was enjoying the sun and a bonus day out. I felt sad that you and Michael wouldn't be enjoying it. I didn't realise quite how grim things were, although I knew they would be pretty bad. I do feel for the really tough time you are having. As a priest I have been with many families as they have gone through these extremely difficult days and I think it is as bad, if not worse for those "who wait", as if things are as they should be, the patient isn't feeling the pain, and often, like Michael, aren't aware because of coma or drug indused sleep.
I have most of my arguments with God about why folk don't slip gently away. This will now be my prayer for Michael. In the end, death does come as a strange friend. You and Michael now need the peace it brings and death never has the last word.
Don't feel bad about how you feel, it is so natural. You have been a tower of strength and it is marvellous that you have kept Michael at home all this time. Although you feel so exhausted at the moment, it will give you some comfort later when you know you have gone the second and third mile. What a wonderful wife Michael has.
You will be much in my prayers.
Love to you and your daughter who must also be finding things hard.
Mavis xxxxx
Hi Sandie,
Glad others have put you right about the infusion being every four weeks, not four times a week!! I find it much better than the time contstraints with the tablets.
When I have a Consultant's appointment they always arrange the two things together. Mind you, if yor Mum is reliant on ambulances for transport, as I am, she may be better off not having to make the additional hospital visits even if only four weekly. If your area is the same, waits for a return ambilance can take upto four hours.
What I have read says Zometa is more effective than Bonefos, but I guess it is what your system can take.
Do hope your Mum's feeling of sickness subsides. On the few times I suffered I found Metocloppramide tablets really helped.
Love to you and Mum. Your Mum sounds a lovely lady.
Mavis x
Hi Dai
When they were discussing the serious weaknesses of the NHS recently, I thought we had some stories we could tell them where little things would have meant such a lot! I also thought of some of the experiences you have had. How do we get things to improve? If the motor industry can get its cars under construction through a Plant with some kind of order and efficiency, why can't the NHS find some way to make sure patients don't fall through a hole when they are waiting! Surely someone out there has the savy!! We can but hope, but in the meantime we carry on suffering the painful results of long waits.
Keep strong Dai. I do hope you are able to go ahead with the next treatment.
Love Mavis x
Hi Jean
So glad that Frank has got his date. I send him my very best wishes. If he has an ipad I am sure he will find it very useful for passing the time.
I know, from reading the accounts from others, that Frank has a tough time ahead, but I pray it will lead to a very long remission.
Keep strong. Love.
Mavis x
Hi Chell
The publicity must be good. Will look out for your post re when magazine is being published. Congratulations.
All best wishes to you both.
Mavis
Hi Sandie
Hope my answers can help you! I was diagnosed in 2010, as I said, following a painful colapse and the discovery of a tumour. I was started on bisophonates straight away – it was called Bonefos. I didn't get any sickness from it although I found the timing of taking it a bind! About 18 mths ago they put me on a dour weekly infusion (by needle) of Zometa. I have to go to hospital for it and it takes about 25 mins, but spend much longer at hospital waiting about!!! I think I am on this foir the duartion, no one seems to want to take me off it, but watch this space!! I think, like all things with MM, they are learning all the time. I seem to remember they did a survey about Bosphosonates some time ago.
I wasn't keen to have any chemo treatment immediately I was diagnosed, so was monitored until I had my second "colapse" some 18 months later. It was then, when I had full body xrays, that all my lessions were found. My Consultant was quite upset she hadn't suspected them before, but I took the line that I hadn't wanted treatment any sooner. I hade six three week regimes of chemo CDT. I didn't have a lot of side effects except loss of appetite and horrible taste. I also had thinning of my hair after I finished the treatment! I only occasionally had to take anti-sickness tablets.
With your mum's advanced age, I think the Consultant is very considerate to suggest a liberal regime of treatment. That's why I haven't gone for a stem cell transplant. I am 68 yrs.
Sorry your Mum had had to come off anti-inflamatories. I am on Oxycontin 30mg twice a day which helps with my arthritic pain. I am also taking ai's, but they are taking me off diclafenac because of my kidneys.
Hope you and your Mum go well!
Love
Mavis x
Hi Nicki
I also send my comiserations that Sam has relapsed and much sooner than you would have hoped. What a good job there are now other treatments on offer. Do hope Velcade works well for him.
So sorry you are having your own health issues when you are needing to be strong. Like Tom says, I hope you are getting support.
All best wishes.
Mavis x
Hi Maureen and Ian
Just wanted to give you some encouragement about the mobility bit!!! I have had two occasions when I "crashed out" and became completely immobile. First time was because of a tumour on my spine and I was having to be hoisted everywhere till I had it removed. They warned me I might not walk again, but due to marvellous surgery, lots of prayer and effort I got going again on two crutches and was able to drive our automatic car. The second time led to my having CDT as my PP had climbed and xrays showed lots of lessions and my Comsultant was frightened of stress factures. However, now another year down the line I am in remission and my mobility is getting better in spite of worsening arthritis. I can now drive again and walk short distances on crutches. I have also bought a mobility scooter which has improved my quality of life.
There is hope of better things for Ian. It just takes time. My next objective is to get away on a short break!
Lots of love.
Mavis x
Hi Sandie
Sorry your Mum has had to start treatment. I just wanted to give you some positive feedback about lessions. When I had to start treatment last year my Consultant said my body was full of lessions. So much so she had me have an electric bed at home to help me out of bed. However, none of my bones did break, and although my spine continues to deteriorate becuse of arthritis, a recent xray showed no signs of lessions or breaks. So all I can say is that bones can get better. I have continued to have Zometa, an infusion four weekly, a version of bisphosonates.
All best wishes to you and your Mum. Don't want to worry you, but do keep a watch on yourself though, because I nearly missed diagnosis till it was too late to save my mobility, becaus both my GP and I put it down to my arthritis. If you have any falls because of weakness ikn one of your legs, do insist on tests.
Love and best wishes to yor Mum and to you.
Mavis
Hi Pat
I really do agree with you, little things do mean a lot. We have so enjoyed two days of sunshine and being able to sit in our conservatory for the first time this year!
Hope you continue to have lots of "little things!"
Love Mavis x
Hi Tom,
So pleased to hear your news. I know how you feel because I got a reprieve this week, till May! Unfortunately I still have to go back every four weeks for Zometa after four months off it because of my dental treatment. Still, I think my poor old bones need all the help they can get. It seems like they keep you on Z omertà indefinitely now. Has anyone else heard anything? It used to be two years!
keep strong and enjoy life. – even the odd tipple! They say "a little of what you fancy!"
Love Mavis x
Hi Daily,
Agree with Tom, you are always an inspiration and I think of you as one of the key players on the site so you have got to keep going strong in spite of all the hi coughs.
Love to you and Janet. It is strange, but helpful, to have all these friends we never meet. I find myself having more and more cyber friends. Since tentatively joining Facebook I have rekindled quite a lot of of old friendships!
Mavis x
