Good luck to you Shirley and I hope that all goes well for you. You know we will all be supporting you and I am so glad that you have celebrated your Christmas today. Now, as young Tom always says "it is onwards and upwards". Such a wise man!
Love, Gaye xx
Couldn't agree with you more Bridget. I seem to remember that chilblains were supposed to respond by sticking your toes into some pee (you own preferably) but as I never fancied that I just suffered the chilblains like you – hearty souls we were! Didn't ever let Dad's long johns go up in smoke but the newspaper we put around the fire to draw it up always did and no smoke alarms then. Yes we were practically on top of each other getting the best place around the fire for Sunday tea of cockles, winkles (of which my sister used to make a winkle sandwich) and crumpets and when the day of the Rayburn fire came there was much jubilation. Warmth all round the room! Let nobody take my central heating and double glazing away now!
Love, Gaye xx
Dear Jeam
Welcome home Jean and I am glad that Frank is feeling much better. Trouble is with myeloma you can never take anything for granted except infections and they should always be treated with care. I laughed when you said that Frank was a law unto himself and a part of me really admires him for that. It's a bit like 'don't let the b*****d grind you down'. The other part feels for you as it must be so frustrating at times. Anyway, you are home, and you son is right when he said this is more like summer than last week! We must be thankful for small mercies!
Love, Gaye xx
Hello Paul – I have just noticed that Claire (Scotty) Scott has a post on here called Joining In. If you post on there hopefully you will get a reply. Failing that telephone Ellen at Myeloma UK.
Best wishes, Gaye
Tom – I would say you are doing very well – if I had counts like these I would be over the moon. Your paraproteins look good and all the others look in good shape too. By my reckoning you are doing well and long may you do so young Tom. I truly think it was the red wine and cucumbers during the summer that did it! When were you diagnosed Tom and have you had an SCT? This is only my reckoning on your counts – I hope others will agree or else I am talking a load of rubbish but I hope not!
Keep well.
Love, Gaye x
Dear Jean – just create the image of being back in your own lovely warm home, with the usual nice cup of tea (why do we always say 'let's have a nice cup of tea?)and start the healing process.
When I asked the question of a possible long journey afterwards I had a feeling that, with your surname, it could well be Northern Ireland and it seems I was right. It's a long time to wait for a plane particularly when someone is ill. You will think about holidays again but possibly not yet and certainly not a repeat of this one!
Safe journey home.
Love, Gaye xx
Thank you Dai – I have just been for one of my countless blood tests, then off to Hadleigh Castle for a coffee and the view here in Essex where the Olympic 2012 mountain bike event is being held. It overlooks the Thames Estuary, it is sunny, still snowy with bright blue sky. I have just listened to your 'card' to us all – thank you. It is catchy, a magnificent voice and along with Hadleigh, cheered me up no end.
You talented person you. Well done!
Love, Gaye x
Hello Paul -sorry to hear you have been diagnosed at such a young age. There is an under-50's group run by Claire (Scotty) Scott which is separate from this discussion group. Trouble is I don't have her email address to give to you but hopefully there are others on here who do. Failing that I am sure Ellen at Myeloma UK will have it so contact her.
I know people find that group really helpful and I am sure you will benefit from it.
Good luck Paul.
Best wishes
Gaye
Dear Sharon – I am so sorry to hear your news. As yet you don't know if it has come back and that's perhaps the hard part – the not knowing. I can only say that I shall be thinking of you through this difficult time and hope for good rather than any unwanted news.
We seem to be going through a rough patch on the discussion board with our current situations, both patients and carers, plus having the coldest and snowiest November in yonks. Well today here in lovely Essex (no we are not all Essex girls and boys!) we have a lovely blue sky and some sun which I hope will take away our blues and the snow.
Nobody told me that dealing with myeloma would be easy and how true that is. Thankfully we have our discussion board friends to help let go and to all of us battling away I don't know what to say other than hang on in there and enjoy the good things we still have, whatever they may be. My favourites are children's conversations and our beautiful countryside.
Much love, Gaye xx
Dear Gill – your attempts to avoid any naughty word to describe your feelings were magnificent but they were understood all the same. I don't think many of us would have reacted any differently to you. My reaction after my first relapse was precisely the same. Lost the plot and needed another doctor to tell me all over again – I was devastated, more so than on diagnosis.
Your Dr S is right about the second line of treatment although I can only speak with any authority on a second SCT. Here the strength of the melphalan was less than the first time round. I think it was something like 140 strength rather than 220. It is also said that you dont usually get as long a remission with the second as the first but I know someone who got many years more with his second and then went on to have a third. So it is not written in stone.
As for the "how long" question I think they wisely avoid answering because at this stage they really don't know. I too was given 4-6 years but I have passed my sell-by date and have now reached 7 years. Just keep going Gill – once you both pass the total shock stage you will be better able to face ahead and do so with optimism. Right now you need to ask Dr S the questions your mind blanked out so you can be completely informed on what's ahead.
I'm glad the champagne was there to help you (plus a drop more). I am sure many people here understand completely how you are feeling right now. I know I do and remember how difficult it was to take in but you both will bounce back, of that I am sure.
Love, Gaye xx
Dear Jean – so you think you can escape the cold and leave us floundering back here in good old and cold Blighty? Oh dear Jean – it's absolutely Sods Law isn't it and you both must be so fed up. During my recent stay in hospital due to an infection, I was given antibiotics and they certinly gave me a 'run' for my money. It was horrible and I can understand why Frank is feeling so grotty. Along with a cold and possible tooth abcess it's just too much. Do you have far to go when you dock in Southampton? I hope he will soon be feeling much better.
Thinking of you.
Love, Gaye xx
PS I always think Christmas is at the wrong time of the year because every body becomes unwell with winter. Let's change it to summer.
Dear Min – The pox to myeloma. What an awful day for you and Peter not only with the news but how tiring it must have been. I have never heard of "the first kick in the slats" (I smiled a wry smile but not sure if I ought to) but it gave me an idea of what was to come. There's nothing I can say that could possibly take away the anger and probably fear of it all. It's one of those periods during our treatment that we have to confront and it is awful. Whenever I get these times I know I must stay with them until I can get my head around it and rebound. You are such a support to Peter and I know you will be again through this difficult time. Like Bridget I am with you and supporting you. Much love to you both Min.
Gaye xx
PS Yes, I agree about the snow. Although thankfully it has now stopped it is still on the ground and very icy. Come on sun, let's be 'aving you!
Dear Pamela and Bridget
Thank you for your lovely replies. Pamela, I see what you mean about good news and bad news. Great news about remission but not so good regarding your bones. Not being able to drive for so long would also cheese me off. I had a week of it with the snow and that was enough. Well another myeloma warrior facing yet more challenges but I know your positivity will come back because that's what we do!
For myself, having had the disease for 7 years my options are very limited. I spend lots of time having needles put into me but this is par for the course. So yes, I do get very down at times but it feels great when my positivity comes back! Seeing the back of the snow is also a boost!
Love, Gaye xx
Yes, I thought it was me and my computer but it is slowing driving me bonkers! Aaaargh!
Over and out, Gaye xx
Dear Pamela – I am so sorry you are feeling a bit duffed up at the moment. MM has this habit of doing its own thing and I am in a similar place right now. One of the great things about being a Brit is that we tend to have a sense of the ridiculous and humour. I know that mine has kept me going through some dark hours and when I see a 'silly' like this one I like to pass them on because normally they just crack me up. It's good to know that they make people laugh so I am glad you enjoyed this one.
I am thinking of you Pamela.
Love, Gaye xx
