[mhnevillParticipant]

Hi Eve

Sorry to hear Slim is having a bad time again. Tell him having a buggy meant I could go to Luxembourg and get around with my grandchildren and I only grounded it once! Tell him the freedom it gives far outweigh s any embarrassment.

By the way,for all out there with wheelchairs, did you know that for a few hundred pounds you can get a simple to attach motor that makes life so much easier for the pusher!

Love to you and Slim.

Mavis x

[mhnevillParticipant]

Hi Diane

It really was a tonic to hear you so much more positive after having a much better experience this time round.

Let's hope it all bodes well for the future – a long future!

Are you able to think about a short break between treatments? They say we are going to have some summer so hope you will be able to enjoy it.

Keep battling on.

Love to you and Janet.

Mavis x

[mhnevillParticipant]

Hi Annette

I just caught up with your post on your Dad's birthday. It was obviously going to be a difficult day. You must've beat yourself up that sometimes you feel overwhelmed. Most folk would in your situation.

Sorry haven't got any light to shed on why things are like they are medically, but wanted to say that your Dad's painkiller dose wasn't way above what many household have.

I think I have learnt that bloods aren't all the answer to what is going on with the MM.

I agree with David that you need more help. Have they put you in touch with the Palliative Care Team yet? You do need them or a McMillan Nurse. I'd advise you to follow it up on your Dad's behalf.

Much love at this difficult time.

Mavis xxx

[mhnevillParticipant]

Hi Dai

I'm just glad you have got Janet to fight for you, and I know it takes something exceptional to get her riled.

Is it my imagination or is your place getting worse? Seem to have been a lot of delays/mistakes recently. Oh the NhS, we wouldn't be alive without it, but it does need an almighty kick up the backside to appreciate the patients perspective.

Now feeling a bit better, I am trying to do my bit by joining our GP Practises Patient Forum. Our two main issues are getting an appointment without having to go through the 8.00am phone lottery, and being able to see the Dr of your choice. An uphill battle I think, but if we can engage the GPs in a meaningful discussion it might help!

All the best Dai. Hope the Velcade continues to bring those numbers down and that those bed sores soon heal completely. Another rosette for Janet!

Love

Mavis x

[mhnevillParticipant]

Hi Tom

Best wishes from me too. Will be praying for you. Look forward to your postings when you are the other side if it.

Haven't been there myself, but from what others say the first week is the worst, so hang in there and think of future gains.

May it bring you a very long remission, by which time, who knows what miracle drugs will be available.

Love.

Mavis x

[mhnevillParticipant]

Hi Carol

Sorry to have to welcome you on this site. As others have said, we all get attacked in different ways by this horrible disease. I had a tumour on my spine which I had to have removed. I then had nearly a year with no treatment except bone strengthening tablets. They obviously didn't do much good as I then had an "episode" of losing mobility, and was then found to be full of lessions. My consultant was affraid i would get stress fratures, but I never did. I put that down to going onto the other form of bone strengther, Zometa, which I have 4 weekly by infusion. I think most folk have this now.

I was then put on CDT. It is toxic, and it made food taste funny. An advatage was I lost some weight. Otherwise I didn't find it too bad. I never had Dex days! I did get shingles, and didn't realise what it was at first, so do be on alert for infections. I also had one very sickly week in hopsotal.

I had six x three weeks on it. I did get moon faced and my hair thinned AFTER I finished the course. (I found some hair products called Ossie very good.) HOWEVER, now nearly a year on I am still in complete remission and am gaining more mobility, which was very compromised (I already had bad arthritis!) and have just come back from Luxembourg having taken my electric scooter with me! First holiday for three years.

MM isn't the end of the world. Keep as positive as you can and ask any questions and someone will help.

Very best wishes.

Mavis

[mhnevillParticipant]

Oh Dai

I am so glad to read this news! I had been scanning postings as I didn't seem to have heard from you lately. I do hope and pray this revised Velcade regime works. If it does it will be another option for others.

Do hope, that in spite of all the treatment you and Janet are able to get away agin soon.

Lots of love and baskets full of good wishes.

Mavis x

[mhnevillParticipant]

Hi Maureen

Glad there seems to be some light at the end of a very long, dark tunnel, for you and Ian. Yes, it will be hard when Ian comes home, but let the Carers take the strain. Hope you have some good ones. I have been very fortunate the two stretches I have needed them.

Look forward to hearing about Ian's homecoming and your daughter's Civil Partnership.

Happy Birthday when it comes.

Mavis x

[mhnevillParticipant]

Hi Sandie

What a wonderful example your Mum is. I do hope she can keep up the Zometa. Is she certain it is that which is causing the problem? I have been on it for over two years and will continue to be.15 months ago, my Consultant was very concerned I would get stress fractures because of how many lesions I had. I haven't had one and I put that down to the Zometa.

Love to your Mum and you!

Mavis x

[mhnevillParticipant]

Hi Sue

So glad to hear your good news. Just goes to show what a strange disease this is, when your partial remission has bought you a much longer remission than some who had full remission.

May you have many, many more treatment free years.

Love

Mavis x

[mhnevillParticipant]

Hi Angie

Yes, I remember you. Thank you for coming back to visit. It's really sad to hear about how your Mum's illness progressed so swiftly. It is no wonder you needed professional help to grit through it. Glad to hear you are feeling strong enough to fly the flag for the MM cause.

Love to all your family.

Mavis x

[mhnevillParticipant]

Hi Rebecca

Sorry to have you join us, but as you see, you will get lots of support here whatever your MM journey brings.

Don't despair if you can't go down the SCT route. There are several of us on here who haven't, for a variety of reasons. Me, because I wouldn't chose to. I was diagnosed over two and a half years ago, managed to put off drug treatment (CDT) till last March and have been in full remission for about a year. I'm hoping for many more.

Myself I think attitude helps a lot so keep strong, travel hopefully and make the most of each day. I have just been on my first foreign holiday for three years because of bone damage so never give up!

Lots of love for your treatment's success.

Mavis

[mhnevillParticipant]

Hi Terry

You don't have to have another SCT if you don't want one. As Peter says there are other options.

Some of us on here aren't even having a first SCT and are still here to tell the tal. I feel so sorry for you about your Consultant. I must say that all the many Drs I've seen on my MM journey have been very helpful and kind, BUT I had an orthopaedic Surgeon who was the most arrogant man I have ever met. He wouldn't admit I had an infecTion in a hip he had replaced so I had to live with it for '18 months while my pelvis was being eaten away. I only got anything done when I took my friend with me who happened to be one of the Hospital social workers! Perhaps you should take someone with you, or ask if you can record what he says!

Keep cheerful.

Mavis

[mhnevillParticipant]

Hi Tom

I agree with what all the others have said. He just caught you on the raw, but you are going to get the longest of remission a following you SCT just to show him who has the last laugh.

Look forward to hearing when you are through the other side.

Regards.

Mavis

[mhnevillParticipant]

Hi Maureen

Sorry Ian is having such a tough time. Is he being given any exercises to do in bed? I have recently started physio again and am amazed how some very small movement, which I do on the bed have helped both my back and my shoulders. Blow what the powers that be say, can't you get a friendly personal trainer to visit Ian. It's his life after all. I am sometimes amazed at all the physio the wounded soldiers get because it is paid for by donations. Hospital physio service stinks in my view. I have never found it very reliable or creative in any of four hospitals where I have experienced it.

So sorry to hear about the bed sore. I do hope they are taking it seriously as they can be very difficult to heal if not kept an eye on.

Lots of love to you both.

Mavis x

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