Time for an update everyone it is nice to read items that are not depressing so a little light relief and please feel free to edit your self if it is out of date
Aaaww Gill.
Lifes a bi tch dont we know it. There is nothing that I can say that will improve your situation but I very clearly understand how you feel, believe me.
Like you I find it difficult to sleep but the blue pills are wonderful at giving me 6 hrs which will do.
Love MIn
I remember the cheque number that you had to remember 15527. They wrote in in a book and doled out the divvi every quarter and everyone with a number was a member of the coop.
I remember cos I worked there for a few months when I left school. And as I was a dunce and could not add up I used to loose some of my wages to make up for loses in my till. No cash registers then. and you had to work out in your head how much change to give.
I remember going tattie picking for pocket money too at this time of year and it was back breaking
Love min
Hi Chelle
I know exactly how you are feeling. My husband had had a stem cell transplant that failed then velcade then Revlamid.
We were devastated. But dont give up just yet.
What they did to start with was to put him back on Thalidomade which was a drug that he had responded to very well before.
Next they gave him a big dose of melphalan and once he had recovered from that they gave him a further dose and his stem cells from storage.
He has undergone this proceedure and is pretty poorly but no more so than most people with mm and a transplant go thru,
Im sure your husbands team will be having a meeting and discussing the way forward Bendamustine trial for instance. Pomalidomide and some of the old favourates from way back when that used to work before the novel drugs that there are now.
Try and keep calm and ask what the plan is of his consultant, more information means less fear.
I wish you both all the best and hope for a healthy outcome
Min
Yes Dai
and that being so I told him that if he had still been in the military he would be on a charge for letting his health fail.!
😛
The lack of an update leads me to suspect (Inspector Cleausau type) that you are now an In Patient Dai.
That being so Get well soon. If they sent you home with tablets Get well Soon.
Im sure you will make the holiday as planned keep taking the tablets. Janet must be looking forward to your holiday too and fearing you wont get well in time for it, as well as being a mm wife and worrying at every sniffle.
Min
In Wallsend where I come from we used to call the Saturday flicks, the tanner rush.
Interpretation a tanner was Geordie for sixpence.
The place is still there but its a Bingo hall!
Dear Bridget,
Im so sorry to hear this news. But I know you have a wonderful team looking after you and they will do everything in there power to keep you well.
If they are suggesting a few days in hospice to sort our your meds for pain it cant be so bad. My friend went in for just 3days and they sorted her out quite quickly as they are on site and can see how you react to each drug quickly.
Once they get it right you will be home again.
Its just a short cut to get the pain under control, and that is what you need most.
No good suffering in silence if it was a temperature you would be seeking help as soon as. Pain is just another form of problem that needs adressing but needs it to be effective so you can get on with your life.
Superstition well OK Im the 1st to admit I am the worst ….my most rediculous one being the colour green. Im terrified of it. Being in my house unless its a plant.
Good Luck with what ever you decide, but remember you poor man must be feeing for you suffering while he cant do anything to make it better.
Hope something happens soon to make you feel better
Love Min
I am afraid Peter is now proper poorly.
They moved him into a single room as he had had a high temperature all last night and when I went in tonight he was not in the bed but in the loo. Where he seems to spend most of his time!
There was a wonderful new machine in the room and I could see that his last temperature reading was 40.1
I went into shock at that and when he came out of the loo I could see he was on fire. His face was red as if he had sunburn and on feeling him he had a fever which was 39.2 after intravenous paracetamol.
He is on constant drips for this that and the other and he was due to have platelets but they could not give them due to the high temperature.
He is feeilng absolutly exhausted and the constant drips to keep him from dehidrating keep him up going to the loo.
This is all new ground for Peter who got a mild infection in his canula hole on his 1st transplant and about 3-5 days of feeling off colour. otherwise he sailed through it.
He had no concept of what others have encountered on SCT and we decided that as he is now suffering A typical smyptoms perhaps there is more likelihood of a better outcome than last time. (It was only 5 months )
He got the platelets when his temp dropped by a degree. At least he does not have rigors and he does have privacy with no one else snoring in the room!
The one thing he did say was that he had learnt a valuable lesson… in future if he gets a sniffle of a runny nose or any temperature he will be in hospital faster than he can say sick…
I have to feel sorry for him as he is suffering just now but I also have to say they should never have let him go home last Monday. As he had slept the whole time he was home.
Hopefully they will find the anti biotic that can get this under control as up to now they dont know what is causing it.
Ah Dai
Why cant all mm men be like you.
Know your ill and do something about it, not sit and wait for tea and sympathy and more problems that come about as a result of ignoring a temperature.
It is so much harder to treat an illness that has been ignored than nipping it in the bud, as peter has found out to his cost.
I think you need to have a word with him for me HEE HEE.
Hope your on the mend soon
Min
Gill
Its quite a relief to find I am not the only one who has to get a wayward hubby in check.
I thought I was alone in being married to a martyr who would rather be ill than admit he needs help.
I dont take any pleasure in 'grassing' him up but at least they know not to look at me when they ask him a question!
He is very sorry pixie now for putting me thru this and feeling very poorly slept the whole of my visit yesterday still has lots of temperatures and they are flushing him out constantly to get rid of pockets of chemo that seem to be the cause of this.or that he is telling me. mmm Perhaps I need to speak to the Dr myself methinks
Good Luck everyone on the Radio therapy hope your all out of pain soon
Love Min
Hi Susanah,
Bendamustine is a drug that is 40years old and out of license so should be cheap. Bout $500 per complete series.
here is a little bit of background american unfortunatly but interesting nontheless by its content.
I think there is a reluctance to use it because it isnt 'cool' and 'novel'
Who cares what if it works and does the job and if its cheap the nhs should love it. But if its not cool it will fall out of favour.
like Dones liver pills and wintergreen ointment and all those wonderful medicines we had as a child.
In there day they were considered cool and novel but thats progress for youOh dear there I go again hankering after my mis spent youth.
Min
http://mutated-unmuated.blogspot.com/2008/04/bendamustine-hype-or-hope.html
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 where I left my mobile phone. I have to ring myself from a landline to find it. Wonder how many others have to do that.
MIn
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 and get some soluble paracetamol, He asked me to pass his dressing gown as he was cold.
Of course he was cold he had a bludy temperature of 38.3. I let him have it on his feet and he grabbed it up to his waist and told me to go get a blanket. I could barely speak for laughing, and told him that as he had a fever he had to be kept cool. OMG he lost the plot at this point and told me that in the movies when people got a fever they piled on the clothes on them to break the fever.
So we ended up having a dreadful argument about his responses to temperatures, over the past few weeks and I threatened that he would not let him come home if we had to go thru this performance every time he knew he had a fever. I left.
I actually went home to get his slippers but it gave him time to think.
When I got back he got my wrath with both barrels and I got the usual apologies but the stress is unbearable.
I wouldn't do it if I didn't have his best at heart and I must be going soft in my old age but I give up too easily these days. I know he is suffering but what can one say in reply.
I daren't say I am suffering because whilst I am its not on the same scale but I know if I was ill and behaved in the same way he would have a hissy fit.
I am at my wits end with worry and had visions of him going into a home as I refuse to take on the role of jailer.
Hospitals are not pleasant but they are places that make you well.
Girls you made me laugh its good to know I am not the only one with an awkward cuss for a husband.
But this mm has given him RED BULL WINGS, that I have never encountered and i am at a loss to deal with it.
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 fire on in the lounge and a heatwave like Egypt hit me.
Peter was freezing. ugh huh.
I took his temperature again and it was well over 38-6 but as the room felt like the tropics I wasn't surprised. He was sitting there in his winter cardigan telling me to shut the door from the draft.
Needless to say by the time I took it again when it was cooler it was less but still raised.
This has now become a battle of wills with me begging him to ring the hospital and him telling me to leave him alone.
He went off this morning for his two bags of blood and I had to ring before he got there and grass him up to the staff.
He has just rung me to tell me he is not allowed home. Surprise surprise.
Why do I have to do battle every time he is unwell?
Why so they keep sending him home ?
This is his second admission since transplant and I cannot get them to keep him in. What have I got to do to make them understand he will not admit to being unwell and hates being an in patient.
I am sitting here having packed his bag but thinking he can jolly well wait as I wanted to go with him this morning and he flew off the handle at me.
I am siting here passing the time to make him sufficiently worried that I might not turn up with his jimjams and toiletries.
What is the problems if you are sick you go to the place where they treat sick people. end of.
You don't come home and suffer and jeopardise your chances by having a wobbly.
Thus endeth the rant again.
Min
