Hope you enjoyed Beamish Ted, its like a journey back in time, I was there last half term with my grandchildren who are a little to young to apreciate it but it brought back so many memories of childhood.
There now no problem remembering 50 years ago the fact that the decor in my Grannys house was exactly like one in Beamish
But cant remember…[Read more]

What a day, I have had.
I got to the hospital to find him having his 3rd bag of whole blood and no Idea that I had got him in there.
Then I remembered I had forgotten to pack his slippers doh.
I listened to the story of his admission, and a short while later he got dreadful rigors shaking uncontrollably. While the nurse went off to call the Dr…[Read more]

Well Well, wish he was!
Yesterday Peter went for a bag of that clotting stuff and a chat with Dr. He came home and told me that he had to go in on Saturday for two bags of whole blood.
From the time he got home, he was feeling cold. took his temperature and it was a little raised. some time later I took the dogs out and came back to find the…[Read more]

Hi Russell
My advise would be. Worry when you have something to worry about.
Maybe you have a smouldering kind of MM that has been found early and you can get on with your life for quite some time.
If you have to wait for the results from your bone marrow I imagine you are being treated at a smaller hospital as most of the big ones have…[Read more]

High Susanah
How dare they put Michael at risk because of a trial. If he needs platelets or neutraphils he needs them Full stop.
At what point will they intervene?
I believe the Dr's oath is First do no harm. I think you would do well to remind them of it.
Just as a matter of interest is it a condition of the trial that he has his…[Read more]

Hi
Sorry to hear of Stevens problems here is hoping the radio therapy gets him back on his feet. I can understand how worried you are by the lump too and I am sure they will calm your mind on Tuesday. Good Luck to you both
Peters second transplant is becoming very unpleasant compared to his 1st. In our case we are actually hope full that this…[Read more]

Why is it that 4am is an hour that keeps you awake. i can usualy get to sleep no problem at al but waking at 4am means I am just washed out for the rest of the day whilst my imagination goes into overdrive.
I think we need a 4am posting board so we can swop our demons and put them to bed.
Does everyone have middle of the night insomnia?
Min

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 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

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 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 Cathy,
I am a carer too, never said this before but I have two years experience of it! I know I would rather not be here, but I wish I had dipped my toe in the water earlier so to speak as the isolation of having a husband with one of the rarer cancers is mind numbing.
Our nurse specialist was the only person we could refer to at the outset,…[Read more]

Eve
During one of our heart to hearts, Peter asked me if I was ill?
Whilst I am not I am extremely tired and had made an appintment with one of the older female GPs in our practice no appointments unitl 1st week in september !!!!!!!as I am reaching the point where I need some pills to pop so to speak, feeling tearful and dreading the…[Read more]

I went to a leaving do last week. For an old workmate who had met at Training school in 1970
There were equal numbers of old and retired and new and serving colleagues.
Without exception all the 'old' people asked how Peter was, One young person asked too and another said Im sorry MIn Im frightened to ask how peter is in case it upsets you or…[Read more]