Hi Pauline this lousy illness plays havoc with all our lives! You must be very hurt by your husbands reactions but I think Jean and Eve have raised good points and as Jean said it has got better Perhaps you could contact his specialist nurse , in confidence , explain the situation to her (or him) and she may find a way to approach him about his…[Read more]

Snap
We are having one done too. and as I write I have the man (fitter) who I thought I had seen the last of back. For a gas leak
When He had finished the job, the very last thing he did was to fit the lights under the wall cupboards and a switch.
Peter is always on the loo with diarrhoea and as I dont use that bathroom I thought the smell…[Read more]

Ah Dai
I recognise these symptoms only too well. Its like I go upstairs to get something, get to the top of the stairs and haven't got a clue why I am there!!!
Have to go all the way down stairs retrace my steps usually to remember what it was ,
I call it my senior moments. Believe you me, its got nowt to do with velcade dex or otherwise its…[Read more]

Hi Sue really good to hear Michael is home at last and they have got that infection under control You must be sp pleased to have him home but I bet you are exhausted , no wonder you feel low after having the worry of Michael being ill and hospital visiting him. I hope that you can both relax a little now and please try and make some time for…[Read more]

Hi Sorry havent posted for a while but Michael only came out of hospital yesterday Hes been really poorly there still unsure why but his blood pressure has been dangerously low 70/54. The infection seems to be under control but there keeping a close eye on him. The trial has stopped for the moment to see if his bloods recover still neutropenic…[Read more]

Dear Gaye Im so sorry,i think the only comfort now is that you are free of pain and can now rest. When I look back at some of my postings, who was one of the first people to reply,Gaye.
Thank you to a brave lady

God Bless You
Sue

For Gaye ; This morning when I read that you had left us I cried . As the day has gone on I have been thinking of your wonderful warm nature and how your posts written with such warmth showed us what a caring person you were .When I first found this site I was unsure as to whether the forum was something I wanted to take part in , but the warm…[Read more]

Hi Ivan I am glad you were seen on the ward it really does make sense for them to see you as they know all the relevant details of your illness and treatment . I can understand you being disappointed having to take time off work but sometimes its the best thing rather than struggling on and making things worse. We have all had these minor blips…[Read more]

Hi Russel
I feel for you and your family who must be reeling from a diagnosis of the b stard illness. I hope you are receiving the best of care that is available, and if not let us know and we will keep you right.
A diagnosis of this kind is mind shattering, and I would be lying if all of us did not feel devastated at the time of diagnosis.…[Read more]

Rest in Peace Dear Gaye,
You were a bright light at a time that I was in a dark place and I will be forever grateful for your support and humour.
I am touched that she thought of us to the end, God Bless
Min

Thankyou Ellen for letting us know Gaye was a very big asset to this forum and she will be missed by a lot of people . I will remember her for her compassion and wonderful sense of humour even when she was going through very tough times Bridget

Hi Russell you must be reeling from the shock of hearing you have myeloma .The internet does throw up some scary facts , be careful about searching on there as information is often incorrect or out of date The average age is much lower than 70 now and although you are very young at 28 there are quite a few under 50s and several under30s , so…[Read more]

WHAT £150 you got to be havin a laugh!
Who on here knows anything about Data protection?
I know criminals are allowed to see a copy of there record and the charge is zero theres got to be something wrong here… oops I feel a momentary annoying letter to my MP coming on if this is true! As you can see I am in Rant mode. And its not due to any…[Read more]

Hi Carol
Good news is the best and the more of it the better. Bad news happens but hey someone has to do it.
Hope your 0 pp lasts a very long time and you can get on with life now. All the best
Min

Hi Carol its great to hear your good news please dont heasitate to share good news with us it always lift our spirits and as you say lately there has been a lot of sad news .I hope you start to feel the benefits of a lower dose very soon although it does take a bit of time to get it out of the bloodstream Heres to lower doses for a long long time…[Read more]

Hi Ivan I agree with Eve your hospital is the best place for answers to this one It could possibly be a side-effect and my advice would be to ring them for any new troubling symptoms rarher than your local gp Good luck let us know how you get on Bridget

Hi Ivan
Look up Peripheral Neuropathy. if your symptoms are identical to a typical PN speak to your healthcare team at the hospital ASAP. The helpline card you should have for evening use will give you access to a Dr who can ansa the questions you have.
Min

Thank you one and all
He made it, got him home just in time to throw up! Said he had had salad for lunch. Followed by yogurt
Whats all that about then. I thought these SCT patients had to have a neutropenic diet. Doesnt anyone check that men as dopy as my husband should not have this kind of food.
Ah well perhaps it was just excitement at…[Read more]

Hi Cathy,
I believe you should have been given a card by the hospital that is treating your partner with phone numbers to ring in the event of a change in condition, reaction to the drugs or a temperature etc etc.
Now I have no personal knowledge of PN periferal neuropathy as it seems to be THE only thing my husband has not had with this blasted…[Read more]

Hi Min haha I love the image of the pir of you tip-toeing out of the hospital for big macs!! I bet Pter felt a whole lot better as Sundays are horrible in hospital, apart from the lunches!! I hope he gets home today for a few days of normality , which you must both be desperate for. love Bridget x