[PerkymiteParticipant]

~Blast, and I gave up smoking years ago 😀 😀

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Very interesting and no doubt one day there will be a cure for Myeloma. Regrettably, not in my time I think:-D However like Eve I do not give up hoping.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

When I first started, July 2009, at the Beacon Centre, The Musgrove Park Hospital unit in Taunton that deals will all cancer patients, it was very much like that, but, to be fair to them it was a brand new unit. Previously cancer patients in Somerset had to travel to Bristol, 46 miles away from Taunton and with the most horrendous parking problems you can imagine. Fortunately The Beacon Centre is just a 500 yards walk away for me.

My impression is that over the last 2 years they have got a lot more organised. I used to wait up to two hours to see the consultant now if I am early I go in early or at the very least on time. My wife was caught out last time, she followed me across to the centre, I was already in with the Consultant by the time she got there. She said knocking on the Consultants door was like being late for school 😀 .

Kindest regards ? Vasbyte

David

[PerkymiteParticipant]

When I was first diagnosed with the Tumour in my neck they spent a lot of time looking for the site of the cancer, because they considered the tumour Secondary. I had a host of cat scans (so many that they started to be concerned about the dose of radiation I was getting) and MRI scans. However they could only find the one Tumour in my neck with no other lesions on my bones. I realise now reading your post that I have never really understood what a Plasmacytoma is/was so I thought I would Wiki it. The result is as follows.

[b]Plasmacytoma[/b] refers to a malignant plasma cell tumor[1] growing within soft tissue or within the skeleton. The skeletal forms usually have other occult tumors and frequently disseminate to multiple myeloma over the course of 5?10 years. The soft tissue forms most often occur in the upper respiratory tract, rarely disseminate, and are cured by resection. Most but not all cases produce paraproteinemia. Solitary tumors in bone can be treated by radiotherapy.

Hope this helps.

Kindest regards ? Vasbyte

David

[PerkymiteParticipant]

Sorry Chelle I can offer nothing but support.

I am 8/9 months post SCT and go for my next appointment at the end of September. Although I feel great and am managing to live a relatively normal life I will go to my appointment with some trepidation, so I have a small idea of how you are feeling right now.

I wish you and Hubby the very best of luck, as Min says do not give up seek and demand the answers to your questions from the Consultant.

Kindest regards ? Vasbyte (South African word meaning Bite Hard ? think about it and you will know what I mean 😉 )

David

[PerkymiteParticipant]

One of my earliest memories is the Ration Book. The reason this sticks out was that my Mum had misplaced it and there was a real panic on to find it. When it was found and put back on the mantel piece where it was always kept I remember, as a very young child, looking at it in awe.

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

It was good value for my Sixpence, remember those silver little things 😀 .

KIndest regards – Vasbyte

David

[PerkymiteParticipant]

Ahh, Those were the days Eve, but, I can remember packets of 5 Woodbines :-D. Half a Crown pocket money my God somebody had a rich Daddy.

kindest regards – Vasbyte

David

[PerkymiteParticipant]

That is one of the problems with MM you are never quite sure what is lurking behind the little niggle.

Hope you get on your holiday I am coming to the last of my travels for this year. One weekend to go, my old skittle team are going to "re-vist" Newquay for the weekend. It used to be a real booze weekend but we are all over 65 now and a couple of beers and we are off to bed!!!!

Best of luck Dai

Kindest regards – Vasbyte.

David

[PerkymiteParticipant]

I just sat and cried when I read Ellen?s post reporting the death of Gaye, one of the stalwarts on the site who always had a kind and encouraging word for others. I will miss her as I am sure we all will.

All my love to both Gaye and Gordon.

David

[PerkymiteParticipant]

In some ways I am pleased that I have been told that only one SCT for me. I fully appreciate that if I was younger, 68 now, I would jump at the chance probably but it seems a very unpleasant experience. My SCT in Nov/Dec went very well and apart from a doggy 24hours a walk in the park. I wish both Peter and Steven a speedy recovery ? VASBYTE.

My walk time is down one minute to 22 mins, from 23.5 mins, so I am getting somewhere I think

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

I agree with Min Dai. I sometimes have the same confusion. I tend to hit the pillow and go straight out. Then I wake at say 11:45 and think it is 5:00 am! And, your right about forgetting things Min. I see it as good wholesome exercise going up and down the stair trying to remember what it was I went down or up the stairs for in the first place. Great Old Age in'it.

kindest regards – Vasbyte

David

[PerkymiteParticipant]

At the present time I have not got the bike out. It is planned for the future. I am banned from doing any exercise which puts undue pressure on my bones such as Gym work and running are out. My wife is concerned I will fall off the bike 😉

I do find my, now daily, walk very therapeutic and it gives me a small sense of ?I am in charge?, I know it is an illusion but you know what I mean I am sure.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

I think this is a very very good idea. It would make so much difference to Consultant appointments.

Well done Dai and MMUK

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Sally, I am sorry to hear about your Dad and the problems in the family.

You give very little information about your Dad other than he has now been diagnosed with full blown MM from MGUS. Have they already collected Stem Cells from him during his MGUS period?

I was diagnosed with MM in 09 aged 66. I find it difficult to imagine how I would have coped without the support of my wife but when I think about it I did not need all day all night treatment and therefore it would be possible for you to perhaps help with his treatment as you cannot rely on your mother.

Can I suggest you attend all of his consultations from now on, if you are not already, and make sure you make notes of what is said.

Perhaps you could come back when you know a little more and we could then set out the framework for you of ?standard? treatment that might give you some ideas.

Kindest regards ? vasbyte

David

[Author]

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