[PerkymiteParticipant]

That is great news Ozzy. One hell of a drop 48 to 10 😀 😀 . You seemed to have settled down well to Velcade – none of the dreaded PN ?

Kind regards – vasbyte

David

[PerkymiteParticipant]

A lot of people get confused between a terminal illness and disability. You can have a terminal illness and not be disabled and of course vies versa.

To qualify for Attendance Allowance you need to be a Pensioner. i.e. over 65. Disability Living Allowance is for those of working age.

Put quite simply to qualify you MUST NEED someone to look after you virtually full time. Again being simplistic; if you can dig the garden, walk the dog, cook your own meals, go to the toilet without assistance, take your medicine without forgetting, get dressed by yourself you do not qualify for either allowance.

I worked as a voluntary Case Worker for 10 years with Soldiers, Sailors and Air Force Families Association (SSAFA) and I would always recommend you go to CAB or Macmillan to fill in the forms. The words you put down are very, very important

Kindest regards ? Vasbyte

David

[PerkymiteParticipant]

Hi Guys and Gals, Thanks for the support and advice very welcome.

Yes, Eve, I very much intend to see my flowers bloom. I have just received the first batch of Plug Plants, 340 Red Geraniums ? I now have to pot them on which is always a tedious job. The garden will look the same as last year; I tried to persuade the better half to go for something else this year to no avail, having said that last year the Garden looked a real picture.

Hi Keith, I have bog standard Myeloma G, nothing complicated and the PPs show up the progression of Myeloma like a Light house beacon, so no need for a BMB. Actually, I have only ever had one BMB and that was prior to my diagnoses in July 2009. The reason for the scan is that I have some mysterious pains in my chest, I am not sure whether it is bone Pain or not and I am taking Tramadol at night to help me sleep. I also have advanced prostate cancer which also attacks the bones so they want to see what is happening inside me I think! I will know all in 6 weeks time.

Kindest regards to all ? vasbyte

David

[PerkymiteParticipant]

Hi Eve, The hosptial is 500 yards from me so going in is not a problem. How many doses of Velcade did Slim have?

Yes, your are right "[i]no live myeloma cells in marrow[/i]" is a lovely phrase.:-D

kindest regards – vasbyte

David

[PerkymiteParticipant]

I had my SCT in Dec 2010. I vaguely remember taking anti shingles medicine at the time to prevent it :-S ! I am never sure whether my ?chemo brain?, forgetting things etc?, is ?chemo brain? or part of life?s rich pattern at 70 years.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

Apart from a short period when the Beacon Centre was getting established and my hospital notes got lost between departments, in 2009, I rarely have to wait for my appointments. Probably 30 mins sometimes and once I even went in early, having said that my appointments have been to see the Consultant only and not for any form of treatment. If they are running late they generally put a notice up.

Little side story: I was sitting in M&S café yesterday when a couple of ladies asked if they could take the empty seats beside me. They were discussing their friend who had just died of a Brain Tumour. As I had a niece who had just died of a brain tumour I entered the conversation. The discussion led on and blow me if one of them did not have another friend who had Myeloma, for 12 years! It is a small world.

Kindest regards ? vasbyte

David

p.s. M&S bacon rolls are great 😎

[PerkymiteParticipant]

That is really good to hear. I love the word "complete", so powerfull in this instance.

Long may it continue.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Go for it Babs 😀 . Wonderful news, and as Jean says, it is great to read these uplifting results.

I go for my appointment on Friday, Mo and I are planning a trip to Mainland Spain in June so I will be looking for clearance of some sort (helps with the Insurance).

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

Hi Robin, I cannot come anywhere near your Dad?s terrible time. However, I was first diagnosed in July 2009. I broke my neck getting out of bed, luckily the Hospital was real switched on and after having surgery to put in internal scaffolding, to hold my head up, I am right as rain, as they say. (Never really understood that saying but there you go).

The Consultant came around whilst I was in hospital to inform me of the bad news. Interesting she said I had had Myeloma for at least 3 years. During those 3 years I had had several major problems, including a DVT with Pulmonary Embolism in my lungs. But it was the persistent urinary infections I had been getting for some time that was apparently the real give away coupled with anaemia.

Hope this is of some help

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

It does sounds good Maureen, very soon he will be under your feet and in the way 😀 😀 . All the best to you both

Kindest regards – vasbyte

David

[PerkymiteParticipant]

RED PEE 😎 Where have I been since 2009! Never heard of it before so I must have completly missed those posts! What ever next. Oh, welcome to the site.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Yes, I think you are right Pat and I certainly know what you mean.

I drove to Exeter for lunch and coffees with my Wife, our Son and Daughter and their partners yesterday and had a great time it was a real nice day – not the weather, the company.

I felt good.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

That is great news Tom. 4 months my golly gosh! I visit my Consultant next
Friday 22nd. Tomorrow I give my sample of blood to see what is going on:-P – hold on it is tomorrow already!

At the moment I cannot sleep so I am taking this time to catch up on the posts. I have been taking Tramadol every night to ease a pain in my chest but have to stop taking it tonight to see if I still have the pain in my chest for Friday?s appointment LOL. Tramadol as, most of you probably know, is addictive and can make you spaced out or sleepy. I think I am going through withdrawal?8-)

Hold on my eyes are getting tired, I will try to get back into bed without waking the wifey 😉 .

Yep, great news Tom..
Kindest regards ? vasbyte

David

[PerkymiteParticipant]

Hi Trish, Sorry to hear about the relapse. I am in the same boat, but my SCT lasted 2 years which was six months longer than predicted (best guess at the time). I have just started relapsing and at the moment it is a gentle curve up, I am now on 6.7 pp. You never know it may just decide to go down, who knows for sure with this awful decease. I go for my next appointment on the 22 Feb when I will learn more.

I am very much getting the impression that Velcade, with different drug additions, is the second line of treatment for the general run of the mill sufferers. I already have some PN from my first bout of Chemo some years ago so have a question mark over it at the moment. But we shall see on the 22nd.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

+1 Dai. (I notice the youngsters put +1 when they agree with something on a forum so being every young I thought I would too).

Kindest regards – Vasbyte

David

[Author]

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