[mhnevillParticipant]

Hi tina

Aren't we all different. You can't wait to start treatment – I can't delay it long enough!

All best wishes to you. Hope the shoulder heals well, I know they can be tricky.

Love.

Mavis

[mhnevillParticipant]

Hi Terry

Excuse me if I invade your post to reply to Fadia! Hope you are keeping well.

Hi Fadia

You seem to be in a similar position to me in being led by the nose to CDT and not being happy aboout it!! See my posting "Starting CDT." There have been very helpful replies.

I am awaitng full body xrays and a bone marrow biopsy. I will be in a better position to make my final decision then. No one can make you start treatment within a week. Tell them you want to wait to get your head round it. After all, it is your life! Keep in touch.

All best wishes.

Mavis

[mhnevillParticipant]

Dear Joe,

So sorry for your loss. Of course all of you will be feeling wretched. It is very early days and the grief is very, very raw, especially as your Dad had such a bad time of it and died so young. It does seem unfair.

Don't beat yourselves up because you feel you can't cope – it is natural at this stage. Is there anyone else who will support your Mum when you go back to Uni? I'm sure your Dad would want you to finish your studies even if you have to take a bit more time off. You have been a good elder son, doing all you could to support the family through the past three years.

AS others have said, take comfort in your good memories, of which you will have lots – polish them off and revel in them, especially funny incidents. Even if they make you weepy it is a good thing to do. Eventually they will help crowd out the bad memories of more recent days, but it will take time. And, if you can, take comfort from the fact that this life isn't all there is. As I watch the signs of spring it convinces me more and more that we humans are also programmed for a "new"life, even if we can't understand what kind of life that might be.

Much love to your Mum, 34 years is a long time – it will feel a shock, but having been so brave these past three years she will get through to the other side. She will never forget your Dad, but it will gradually become less painful. Hope you are a family that can share your love for one another.

Love and prayers.

Mavis x

[mhnevillParticipant]

Dear Tom. Bridget, Lyn and Penny

Thank you all for your encouragement. I knew I could rely on my friends on here! I am awaiting bone marrow biopsy and full bone scan then I will know when I start. Being an optomist I am still hoping I can delay it a bit longer if I drink loads and get my kidney figures down.

You all take care of yourselves. One thing about the dreaded MM, it makes fighters of us all doesn't it!

Love

Mavis xx

[mhnevillParticipant]

My dear Bridget

I am gutted at your latest post – missed earlier because of grand childrens visit. (A great but exausting few days!)

What to say? Your positive approach must stand you in good stead and I will be praying for a miracle.

Enjoy these days of no infusions! I'm so glad you've got a supportive family around you. Will think of more to say, but wanted you to know I am continuing to remember you even when I'm not on site.

Much love

Mavis xxxxx

[mhnevillParticipant]

Hi Tina

How I sympathise with you over water intake. I know it's so important to me, but I really struggle with it. I hate our tap water (and feel guilty about it!) I have to drinl squash which my son-in-law says are full of carcigens! Your post reminded me I must try harder!!!

Best wishes.

Mavis

Hi Dai

Glad you have at last got on a regime of treatment – soory it has been a bumpy landing. Like Tom, I'm fastinated to hear how they know your shoulder pain is down to MM and not arthritis or muscle strain? Did you have another xray or MRI scan?

Hope things go better from now on, who knows, you might respond better to Revlimis and Dex better than you would have the Trial drug. Hope you don't get too many restless nights with the dex.

Very best wishes.

Mavis

[mhnevillParticipant]

Hi Chris

Good to hear from you. Glad PP levels are going down steadily.

What lovely news about your forthcoming wedding. I'm sure it will be a very special day and brting some well needed normality into your life to put against the invsion of the dreaded MM.

I'm not going to put any bets on you not getting to pension age though! You were very fit before diagnosis, and are responding to first line treatment, and there are so many more in the pipe line. Mind you, the way Governments are whittling away at pensions, and increasing pension age, evantually there may be no retiremant age at all – just enndless DLA like booklets to fill in to collect anything!!!!!!!

Hope everythting goes smoothly till May with no more hospital visits. And yes, don't forget the photos – we need cause to share celebrations on this site.

All best wishes to you and to you both!

Mavis

[mhnevillParticipant]

Hi Jacqueline

So sorry that your Father has this rare development of myeloma.

I send you my love and prayers.

Mavis

[mhnevillParticipant]

Hi Gemma

Welcome from me too. It is veru generous of you to be willing to share your experiences, and your Dad's, after what have obviously been four difficult years.

One thing I would be interested in is, how was your Dad diagnosed? From all the complications your Dad suffered I presume he was at a late stage when he was diagnosed?

All best wishes to you.

Mavis

[mhnevillParticipant]

Hi Terry

Welcome from across the pond! I enjoy visiting the Myeloma Beacon site. It is interesting that there are differences between treatment regimes here and in US.

Do hope your smouldering state lasts for many years. I think that the Trial you are on will be very helpful for people who are diagnosed early.

All best wishes.

Mavis

[mhnevillParticipant]

Hi Dai

I realise how gutted you must feel for not getting on the Trial. Yhere have been some good reports of Revlamid as a maintenance drug. I do hope that you are surprised at how well you do on this regime. Eventually, if you need it, maybe the Carfilzomid will be available all tested and dose adjusted.

Hope those PP levels remain very low and that you generally begin to feel more like it!

Very best wishes.

Mavis x

[mhnevillParticipant]

Hi Bridget

Put it down to a senior moment!!!!! I just read the date on your post. I'm sure there have been some later ones in this category. Wonder what happened to them?

Still, good wishes anyway!

MAVIS XXX

[mhnevillParticipant]

Hi Bridget

How like you to be focussung on others when you have so much to cope with -including supporting yur own daughter. I do have to say I didn't see anything in our local paper about CF Week, but do hope it has been generally successful.

Your daughter has obviously inherited your inner strength.

How is your grandson? MY two arrive on Wednesday to stay till Sunday. We are really looking forward to it, but praying for some fine days as our bungalow is very small when two very active children are running around!!!!!

Much love to you all.

Mavis xxxxx

[mhnevillParticipant]

Hi Eve

So glad that at last there is good news. Do hope everything goes smoothly until the STC.

Maybe a last minute cruise will come up. Mind you, after the news today perhaps another kind of holiday might be better! Still, think, after SCT and recovery, there will be so much time for lovely holidays.

Lots of love to you both.

Mavis x

[mhnevillParticipant]

Hi Dave

Interested by your reply. Someone else on the site said their Consultant said PP of 30 before any treatment, if no other problems with blood and kidneys, but when I asked my Consultant, she said she'd rather go by how the PP was rising, i.e. whether steeply or slowly.

Aim of all other treatments is to get PP down to zero for full remission, but some folk seem to cope very well with a partial remission.

Hope your PP levels keep low for many years. It's what I wish for myself.

All best wishes.

Mavis

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