[GayeParticipant]

I have been so touched by all your wonderful messages. What can I say? My control freakery has now gone out of the window along with the bra which is now too painful to wear – not a pretty sight. Showering is now hilarious each morning with what seems like half the nursing staff watching for the latest river to be created! It is certainly not boring.

I will try to keep in touch. When the weather is good we have a lovely garden at the hospice which I try to enjoy as often as possble.

Love to you all.
Gaye xx

[GayeParticipant]

Dear Dai – such beautiful words on a beautiful but windy day. What has struck me is that 3 deaths have come after such a long time but sadly it is inevitable with such a vicious disease.To all of us battling with myeloma well done for the courage and fortitude you have all shown in however you have faced it. To all carers and families supporting us thank you so much. Dai is so right in saying about the future – I remember being told that "nothing ever stays the same for ever" and its true.

I wish you all the courage and love in the world.

Love, Gaye xxxx

[GayeParticipant]

Hello all you lovely people. I wish I could spend more time on here but my energy levels just won't let me. I have been reading some of your postings with various good ones and not so good.

My latest is that the Pomalidomide is keeping the myeloma steady but no world breaking figures. It sounds like lots of you are in pain with various ways of dealing with it I hate painkillers as they make me feel like a complete moron – can't string a sentence together and could sleep for England. Yes, Bridget I am under palliative care as well as anything else that may come along. I am seeing the spinal surgeon at the Royal London this Thursday to discuss a possible kyphoplasty. I know there is no cure but I would like if possible not be doubled up in pain. I think that none of us deserves excruciating pain.

Love to you all and keep being positive.

Much love, Gaye xx

[GayeParticipant]

Dear Tina – Thank so much for your reply. Yes you are right. The last few weeks have been awful regarding back pain and I am still awaiting whether or not a kyphoplasty is still on the cards. However, it is the pomalidomide that will decide my outcome and with the polidomide and pain it is all out of my control.

You have been such a good supporter and I thank you so much for that. Now your new future will begin and so many of us will be thinking of you. Dear Tina thank you once again.

Much love
Gaye xx

[GayeParticipant]

Dear Tina – I read with such sorrow your posting on the loss of Patrick. I hadn't heard from you for a while and had a feeling that maybe all was not well. And so it wasn't. The other patient at Barts is struggling with it as am I. You have been a wonderful carer and wife to Patrick and you must be feeling wretched. I can't imagine how you are feeling right now but my love and thoughts and completely with you.

Much love to you.

Gaye xx

[GayeParticipant]

Dear Bridget

Sorry that I haven't replied for a while and you sound in complete agony. You try to do a bit too much and and it repays you with massive pain. I feel for you very much.I think you have got the point that you need to contact the hospital tomorrow and get some idea where the pain is coming from.

I still have no answer to my back pain other than the radiotherapy didn't work but the surgeon who operated last year has asked to see me again to see if he can operate this time. I wish you well Bridget and that you get answer pretty soon.

Much love to you.

Gaye xxx

[GayeParticipant]

What a wonderful array of kisses to go with the beautiful sunshine today. Thank you all – fantastic.

Much love, Gaye xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

[GayeParticipant]

Good morning Broncho and Dai. It is so kind of you both to write.I'm afraid that the news is not good regarding the pain. We are trying another pain killer to see if this will help.

The pomalidomide seems to be working so that is reasonably good news. I haven't been able to write and keep up with your news but I hope all is well.

Much love to you all.

I told my consultant about putting kisses on my last email to her and she said how many emails she gets like that so she wasn't too embarrased!

[GayeParticipant]

Bridget – the surgeon at the Royal London who did both my operations was Mr John Yeh and I think it is likely that he will come to the same decision as yours as it is now two years on and more damage has happened since then. Not a great outlook but must keep hopes alive.

Is it me but even though I cannot understand Swedish or Danish, let alone French, I still find the need to turn the sound up. Any one else as batty as me? Come on, out of those language closets!

Love, Gaye xxx

[GayeParticipant]

Thanks Bridget – My consultant has sent a copy of my MRI to the Royal London to see if a kyphoplasty is feasible. The consultant there is the specialist in spinal surgery and kyphoplasty in particular so if he says no then that's it.

Some of the french detectives are just vile and 'Monsieur don't I look lovely with my grey but suave hairstyle' looks as corrupt as they come! Keep watching. From one tough old bird to another ………..
Love, Gaye xxx

[GayeParticipant]

Hi Bridget – yes I did but I have to get into it. I am still pining for Wallander and The Killing and the female detective seems to have a permanent look on her face that leaves me desperately worried about her. I loved Lund in The Killing so I will have to stay with this one.

I noticed myeloma was mentioned in Waking the Dead but not very much to make any impact.

It looks like my radiotherapy hasn't worked. It is now nearly 6 weeks and no sign of any relief.

Love, Gaye xx

[GayeParticipant]

Dear Ian – I had partial remission first time round which lasted 18 months. I was told I would get half the time for the second which happened.I know of only 1 person who had remission from his second SCT which lasted years longer than his first, but from which he has since relapsed. Definitely an exception to the rule.

It seems the info you were given was round about right.

Good luck Ian. Gaye

[GayeParticipant]

Dear Dai – I am so sorry that the bugger has come back and I well understand the feelings you both have right now. I know how I felt after my first remission and was devastated. You didn't move home for nothing and that fighting spirit will come back to you once you get the new treatment regime. I wish you good luck as you come to terms with your new situation and new treatment.

Love, Gaye 🙂

[GayeParticipant]

Dear Jean – this is why so many people do not get diagnosed soon enough because it can feel muscular when it is bone pain and GPs are not always aware of MM pain. I can only say from my bone pain experience is for Frank to take this seriously because it has all the hall marks of MM pain. He sounds afraid and I suspect a bit in denial. It's hard on you but it sounds like he wants to do it his way however difficult it is for you to watch.

Good luck Jean and I hope Frank will change his mind sooner rather than later.

Love, Gaye xx

[GayeParticipant]

Thanks for all your replies. I was with friends yesterday and we just couldn't stop laughing. I remember her introducing me to a student saying this wasn't a normal doctor/patient relationship. It was totally patient led! Before diagnosis I had never called any health professional by their first name but the department is very relaxed and first name terms are completely normal. Bridget how lovely to send a letter of complaint with some sort of endearment on it – wonderful!

What's happened to the sun? Enjoy the rest of your weekend everybody.

Love, Gaye xx

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