[PerkymiteParticipant]

I am right behind you Nettie, well not quite right behind you well ok mayby a yard, ok a mile behind you 😀 I spent 15 years in the Parachute Brigade and I am terrified of heights !!!! My £1 or so will be on it way, best of luck. And remember Vasbyte!

kindest reards

David

[PerkymiteParticipant]

Hi Sandy, I am from Somerset so regret I cannot help you with your Hospital.

I had my SCT in early December. My local hospital seems to treat SCT differently to the others. I was kept in for a full 3 weeks after the procedure and just got out in time for Christmas. And, again, the facilities were different, mine was first class. I had a private ward with en-suite, fridge, TV, toaster the works. Breakfast was served in china not plastic and I had a tea pot for tea not out of an urn. All in all a superb experience, no I wasn?t private good old NHS.

I did not suck ice cubes etc… and I did get a soarish throat, but not too bad. I mentioned to my Consultant about sucking Ice Cubes and he was not for it, not against it either but his opinion was that you were having SCT to kill the cancer cells. His ?opinion? was that by sucking ice cubes you were stopping the Melphlan from getting at the cancer cells in your mouth and throat area. As he said it is just an opinion nothing proved or otherwise.

I wish you the very best of luck and look forward to hearing from you when you have had your SCT.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

I just have to say how right you are Dai I too am delighted to see Sarah, Tina and Roz posting as often as they do and who could miss out our Min and Bridget the list goes on! We seem to be building a very nice comunity here.

Kindest regards – vsbyte

David

[PerkymiteParticipant]

That is really great news Dai, I am so pleased for you, strange how MM and the ?cures? affects us all so differently.

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

Well done Helen,

I am 8 months post SCT. Had mine as a Christmas present from the MHS. I am now fully recovered the last part to rebuild was my Jaw. The right hand rear was very sensitive to hot and cold and I could not chew on it but it is ok now. I have started my exercising again, 3 mile walk now most mornings and I feel, and, apparently, look very fit. My next appointment is on the 29th Sep and that will be 12 weeks since I saw the Consultant, which is the longest I have been without seeing a Doctor/Consultant since Jul 09 when it all started.

I wish you a long and happy remission.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

OK, I will put you out of your misery ? frivolous is spelt with an o not an a >:-) , Sorry…… but I just LOVED doing that.

David

[PerkymiteParticipant]

Great to know you are on the mend Keith, keep going buddy.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

It really comes down to that old say, said many times by many people on this site, [b]listern to your body[/b]. I do, and, I think it pays off.

Kindest reagrds – vasbyte

David

[PerkymiteParticipant]

Please do not be silent on the site I have always enjoyed your posts and I,and am sure everybody, would feel some lose if you left us.

The Captain is still striding alongside you he cannot help with the dishes but he will be beside you.

Kindest reagards Min – now is the time to really vasbyte.

David

[PerkymiteParticipant]

Hi Amelia,

I think there is an element in us all that deep inside we want to believe that really there is nothing wrong with us and if we just keep working hard it will all disappear and go away. Unfortunately, with MM, it might disappear from view for awhile but it never goes away.

As you know I am 68 and retired but I still have my Job list and every morning I get up and select something from it to do. Today I am going to clean the Carpets, yesterday I painted the outside table and chairs ready for the winter. The point is it is just one job, it may take time or be mucky and even hard to do sometimes but when I have done it I feel great and I go and play on the Computer ? I play Age Of Empires Online and World of Tanks. These games make my brain go into overdrive I have to think fast and react quickly most people I play against are between 11 and 35.

So what about you and John sitting down and looking at a different life style, picking up on the things he likes to do?

I hope this is of some help.

Kindest regards ? Vasbyte

David

Opps edit Tom to John

[PerkymiteParticipant]

Dear Min, Thank you for a powerful and brave post.

Right from the diagnosis of my mm I asked for the REAL prognosis, two to three years. The Surgeon who repaired my neck came and had a chat with me before we parted company. During the conversation he said, ?If I have to die of a cancer I would choose MM, it at least gives you time to say the things that need to be said and do the things that need to be done?. That really hit home with me.

Ever since that day I have been planning my departure, I am that sort of guy, and every day I have told my wife of 48 years just how much I love her and how much she has meant to me. Even the funeral and new grave set (I have a grave next to my late son and they are going to make it into one grave) are planned. Mo and my children are aware of my wishes and I have written my will. I made up a bucket list of friends who have really meant something to me and I have spoken personally to each one about our friendship ? it has been hard and there have been a few tears on the way.

And,therfore, when I come to meet my maker ?I will have said the things that needed to be said and I will have done the things that needed to be done?, and, I will be ready.

That is not to say I accept the prognosis and I am going to lay down and die at some pre-ordained time, I will fight this bl**dy cancer with all my strength with my dear Wife and wonderful Family supporting me, but, I am a realist.

Thanks once again Min

May your God walk with you, Love ? Vasbyte

David

[PerkymiteParticipant]

Well done Gill that was very very informative. I had NS with a negative (something) Staf (not sure what the other word was now), about a week or so after my SCT. It was when they took my central line out and it released a load of bugs into my body. A worrying 24 hrs but lucky I was already in the Oncology ward at the time.

Kindest regards ? Vasbyte

David

[PerkymiteParticipant]

Hallo Allison,

Firstly welcome to our merry band, not a band any of us wanted to join but you will find lots of support here from fellow sufferers and Careers. Have a good look around the sight it has bags of up-to-date information on it and this forum is just a very small part; albeit a nice part though!

I assume you are talking about an Auto (your own stem cells being reintroduced back into your body after high does Chemo) and not Allo (a relative or donor matched stems cells being introduced to your body after high does chemo).

Allo is considered risky even for a fit person, but several on here have done it, with different degrees of success. Auto is almost routine now, provided you are considered fit by the Consultant, apparently the cut off line is 70 years of age.

I had my Auto STC last December aged 68. It went very well with the exception of one 24 hour period when I had a serious infection, touch and go then but I am here to tell you about it! They gave me a maximum of 18 months before it resurfaced again but I decided (a maybe) 18 months was worth the risk, and who really knows I might just beat their prognosis. I have had a good year so far life back to normal, as much as it can every be.

I have to be honest I would have taken my Consultants advice in this and if he had said no ASCT I would have been very disappointed but would have accepted it.

Hope this is of some help.

Kindest regards ? Vasbyte

David

[PerkymiteParticipant]

My Dear, Dear Min,

How sad and upset I was to read your unexpected posting. Everything that can be said has been said by all your ?Cyber Friends? and I am just no good at condolences. My heart goes out to you. Remember we are all still your ?Cyber Friends? so perhaps we will still have the pleasure of your company. May your God be with you at this time.

Love ? Vasbyte

David

[PerkymiteParticipant]

Hi John, Nice to hear from you that Cecelia is doing ok. Not a problem I have at the moment I have veins like tree trunks I am told!

Kindest regards ? vasbyte

David

[Author]

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