[mhnevillParticipant]

Hi everyone

And only three more weeks to Christmas!! I am praying for a snow free one this year as for, the first time, I am hoping to make the the journey from Yorkshire to London to spend Christmas with the grandchildren, four and 19 months. The last four years I have had Christmas services to take so haven't been able to get down. You can imagine how I am looking forward to it.

Because we have moved back to our adapted bungalow, we have already sent all our cards, and I have wrapped about half of the presents! Now waiting for Gordon to do the tree, he really does a loevely one.

Hope all your plans are coming together and you all have a really good and peaceful time.

Love

Mavis x

[mhnevillParticipant]

Hi David,

I know i have been a long time answering this post. First off, I am sorry to hear about your neice. We have just had a similar experieince with one of our younger friends who just upped and died. No ryme or reason to it.

But as a Priest I have been thinking about what Eve said about funerals. I am sorry and apologise on behalf of those who have had bad experieinces. Most ministers really put a lot of work, and emotional energy into taking funerals – it is emotionally draining to give someone a good send off. About the money – Church of England Priest don't get to keep the fees – it goes into the general pot that pays their wages so they can be available. The fee covers the initial visit, taking the funeral, and, if appropriate/wanted a follow up visit or phone call. Lots of unpaid priests, like me, and Readers, don't take the fees, and again they go into the general pot.

I do think it is a good thng to plan your own funeral. I am planning mine, although i hope it isn't for a long time!!! Mustn't Jimmy Saville have had fun planning his!

Lots of love David and Eve.

Mavis

I agree with Eve though, a good humanist service can be very meaningful, but I believe they charge too!

[mhnevillParticipant]

Dear Gina,

A bit late, but may I also send my sincere condolences to you and the family. At least there is some comfort that your Mum hasn't to fight this dreaded disease any longer. She was very brave.

Love

Mavis x

[mhnevillParticipant]

Hi Meera

Glad you can now concentrate on strengthening your back. Some folk seem to do really well quickly. I am 14 months past my op and still need two crutches, but mine is complicated by arthritis.

One thing to be careful of is lifting. I got worse a few weeks ago when my grandsons were staying and I lifted the four year old onto my knee, so beware as your toddler gets older. It's very sad not to be able to do this, but it is all a balancing act of causes and effects. Hope your tiredness is getting better. I certainly fall asleep much much less now.

All best wishes.

Mavis

[mhnevillParticipant]

Hi Debs

Sorry you are finding the Revlimid so difficult. I do wonder if a lower dose would do as well. At least, would you be able to have a break from it to enjoy Christmas with the family?

So glad you have a wonderful family.

Love Mavis x

[mhnevillParticipant]

Hi Bridget,

I have been wondering how you are. Often lift up a little prayer for you. Sorry the new treatment is having these strange side effects, but see you are coping with your usual fortitude. Have you lost your hair again this time? Not the weather for it!

How did you know the PP levels weren't accurate?

Do hope things get better over the next rounds and that you are feeling much more alert for Christmas.

Love Mavis x

[mhnevillParticipant]

Hi Tom

What good news! You must really long to be treatment free.

All best wishes.

Mavis

[mhnevillParticipant]

Hi Vicky

Hang on in there for your Dad. At least he is the right side of SCT and, we hope and pray, looking towards a long remission. Let's hope he is over the worse by Christmas and can get a bit of an appitite for his Christmas dinner.

Best wishes to all the family at this very difficult time.

Mavis

[mhnevillParticipant]

Hi Shirley

I share others' disappointment at your breathing complications. Do hope things improve as time passes and that you can really enjoy the Christmas period.

I admire your determination it is sure to pay off in a general improvement.

Love

Mavis

[mhnevillParticipant]

Hi Carol

So glad to read your good news that CDT is having such a good response. What a good thought to take into the Christmas period. Do have a wonderful time with your NZ daughter and the rest of the family. SCT is for another day!

Love.

Mavis

[mhnevillParticipant]

Hi Jo

I too am delighted at your news. I am roooting for much more than 3 years partial remission for you.

Love

Mavis x

[mhnevillParticipant]

Hi only me

Sorry, can't answer the question about SCT, but wanted to send my best wishes to your Mum – she is having a rough time. From what I hear from others, the end to these horrible reactions do come to an end.

Hang in there – good job your Mum has you fighting for her.

Love to you both.

Mavis

[mhnevillParticipant]

Hi Helen

It's strange isn't it! Because of the various side effects of treatment, in your case hair loss, we wish the months away – it's hard isn't it. I do hope the Revlimid maintenance works for you and the side effects diminish. I guess if not you can ask for a lower dose. You have already put up with so much.

Hairs to the future!!!!

Love Mavis x

[mhnevillParticipant]

Hi Bridget

Glad to hear your rash is subsiding. Hope your energy levels rise soon. Guess your tum must feel like a pin cushion. Wonder if they will ever get it so that these drugs can be used with drivers diabetics use, which I understand aren't so painful.

Something Dai said a while ago struck a chord with me, and thinking of all you experiences reminds me. It's a shame we haven't a way, on site, for people to catalogue their various symptoms and treatments, with a contact email address, so that if anyone has a similar MM script, they culd make direct contact.

There is so much good info on this site, but very doted around, for obvious reasons, because of the nature of the site. Oh the things we think of in the middle of the night!!!

Much love Bridget.

Mavis x

[mhnevillParticipant]

Hi Jo

I must have missed this post last time I was on site. I am gutted that you have to start treatment again – you were doing so well and so upbeat. However, that will stand you in good stead for this next round of the battle. Your PP levels sound low so was the treatment started just because of your kidney problems? Excuse my ignorance, but can't they just treat the kidney problem without the chem? I guess thye know what they are doing, but you know me, less chemo is baest. I'm so glad that they are giving you low doses. I agree with what Dai says, that it is worth hearing what the Americans are saying about lower doses being just as effective.

Have they talked about giving you Velcade by injection instead of infusion? I read it has lower side effects. I do so want this to be easy for you.

God bless and keep you in these next days and keep you looking forward.

Much love,

Mavis x

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