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…[Read more]
It is ages since I last wrote and I haven't been near nor by the website since March. I have just accessed it and read some of the postings particularly those from Tina and Sarah. I am so sorry to learn of your losses and for all of you going through difficult treatment. Hang on in there – I know what a B…r it is.
For the…[Read more]
Gaye replied to the topic Of Kevin and Patrick and Patrick and Michael et al… in the forum General 11 years ago
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…[Read more]
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…[Read more]
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…[Read more]
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…[Read more]
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…[Read more]
What a wonderful array of kisses to go with the beautiful sunshine today. Thank you all – fantastic.
Much love, Gaye xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
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.
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…[Read more]
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…[Read more]
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…[Read more]
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…[Read more]
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…[Read more]
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…[Read more]
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…[Read more]
I had to send an email to my consultant yesterday and on re-reading this morning I discovered I had put Love, Gaye xx. AAArrgghhhh. She has been my consultant for some years but didn't think we were that close. She has probably run to the hills by now but I am horrified. I put it down to the pain but maybe the dex is the most…[Read more]
Dear Friends – 4 weeks since having RT and still no relief from back pain. I am almost convinced it will not happen and beginning to despair. Help!
I eventually started my third cycle on pomalidomide this week in the evening at around 9pm but slept around to 9.15am. Is there a good time in the evening to take the tablets to get optimum…[Read more]
At last my month's supply of pomalidomide arrived on Friday evening round 8pm delivered by a rather lovely young man so I can now start cycle 3 tomorrow evening. At last. All that it takes to get our medication but at least it is here!
Love to you all. Gaye xx
Hello Pamela – thanks for your information and I am so glad your bone pain is now under control. Tramadol has long been ruled out as it contradindicates with my anti-depressant drugs. You win some you lose some! Thank you anyway Pamela.
Love, Gaye xx