[PerkymiteParticipant]

Loved the last line Dai, [i]'Whatever It Takes', Onwards & Upwards, Vasbyte[/i] 😀 😀 Good on you.

I was pulled off Velcade because of severe PN, mainly in my legs. It is hard to explain, they are not painful as such they just feel very, very uncomfortable all the time and I have to get up during the night to walk about a little bit to settle them.

They also thought at the time that Velcade having taken my pps from 17 to 8 was not holding the pps down. They had gone from 8.0 to 8.4 and whilst not a big jump up, coupled with my legs taking a bashing the consultant said they would move me onto 3rd line. Revlimid.

I have my bone infusion today and my Assessment on Friday when I believe the Revlimid should start.

Best of luck

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

Hi Jan, That sounds very cheap for insurance. What Company are you with?

With regard to your mother have you tried tracing her back through Birth, Marriage, and Death certificates. They can be pricey to buy about £25 each is my recollection but thay have some fascinating information on them. Apply for your mum's certificates and this will show parental information even relatives in some cases (shown as witnesses etc..). You can then apply for Grandparents certificates etc. There are several sites where you can also research BMD certs, although you still have to pay or buy a copy of the original cert. I hope this of some help.

This year I placed a memorial stone on my father' grave. He died in 1944 and it was a very moving moment for me. Photos attached. I hope this is of some help.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Sounds good to me – count me in.

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

Yes, Dick you are right.

The difference is that SSAFA and RBL encompasses them all, so an application to SSAFA or RBL then goes to, shall we say for some hypothetical person, The Army Benevolent fund, Royal British Legion (RBL), Corps Association (mine is REME), Royal Navy Charities and Marine charities(if he has served with the Marines – like me) , Parachute regiment Associations if he has served with the Parachute Brigade (again like me). It also looks at his civilian service and applies to any Trade union or Work associated Charities. It looks at local Charities – There is one in my area that supports people who have fallen on hard times who live in the Trull and Commeytrowe area of Taunton. The list goes on. There is lots of help out there you just need an organisation like SSAFA or the RBL to find them for you 🙂 and they have the data and information to do that easily.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

I love your missives Gill, keep them coming.

Best of luck on your trip to France.

My kindest Regards – Vasbyte

Davod

[PerkymiteParticipant]

I have never had any of my vaccines redone.

When there is a danger of shingles I am given a tablet to take – sorry cannot think of the name of the drug.

Kind regards – vasbyte

David

[PerkymiteParticipant]

Hi Vanessa, It is my understanding that most of the consultants working for BUPA and the like are in fact NHS Consultants, they have a private practice and work for the NHS. You should have no fears about going NHS I have had great treatment.

The money side I would definitely make an appointment to speak to Citizens Advice before you take any decision. Before you go write down all your income, debts and expenditure; include everything such as groceries, TV licence, petrol for the car, road tax etc… They will need all these details as well as information about your Mortgage.

Stewarts self esteem – do not underestimate the damage this can do to a human being. Try to get him into a voluntary job as soon as you can if he cannot find work. And be a bit lavish, without going obviously over the top, with any praise for doing the dinner for example.

Lastly has he any direct military connections, was he or his father in the forces for example. If so you should immediately contact an organisation called SSAFA (Soldier, Sailors and Air force Families Association). They WILL help you sort out things, with money and good current advice, and they will stay helping you. (I used to be one of their Case Workers.

The very best of luck.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Thanks San, One of the nice thing about our group is we have great empathy for each other we know, or can guess, the problems each other are going through.

I feel so much for some of the people on this site. I am a ripe 70 years of age and have had a full share of life. Some on here are half my age and just developing young families. For them it is a real tragedy and I sincerely hope something comes along for them soon. There are good things in the pipe line, we just need it to flow a lot quicker 🙂 .

Best of luck with your Mum and please keep us posted about her progress, good and bad.

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

Best of luck Mr Guiney Pig 😉 , I mean that in the nicest possible way 😎

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Helen, That is what Mo I do. All the trips this year were planned with the proviso of "depending how David is" 😀 I have made every one so far 😎

Kindest regard – vasbyte

David

[PerkymiteParticipant]

+1 Dai.

Go for it Gill, in my world Stephen will be right on your shoulder. He may not be able to be with you physically but he will be there.

I wish you al the best on your personal adventure.

My kindest regards – Vasbyte

David

[PerkymiteParticipant]

What a nice bunch you all are and I think that is the link with Myeloma "only nice people get it". Many thanks for the nice replies.

That was my "Living and the Dead tour" Dai, going from Taunton to Scotland back to London and Home. I planted Daffodils, from my garden, on all mine and Mo's ancestors graves going back to Great, Great, Great, Grandparents and at the same time visiting friends we had not seen, in some cases for 30 years. I am well aware of the beauty of Wales having been there several times. Pen e Fan(?) in the Brecon Beacons has special memories, both good and bad 😀 🙁 😎

We are already planning several trips before Christmas, mainly in the Cornwall area at present.

Hi Maureen, I have lots of friends that have done cruises and not one of them regretted it, far from it – Go for it.

My kindest regards – Vasbyte

David

[PerkymiteParticipant]

Well Mo and I never had a Bucket list Eve.

During a hospital visit to see me in 2009 I gave Mo a blank sheet of A4 Paper and I had one sheet as well. We had already seen the film the Bucket List, but just to cap it my son gave me a copy when he heard my diagnosis – we have the same sense of humour. I asked my wife to bring her list in when she had written ten things “We must do before I die”. A few days later she came in and gave me the sheet, and, I gave her mine. We both opened together and we both laughed. They were both blank.

That is not to say that I have just sat on my bum since 2009. Mo and I are thankful of the time we have been given and have made the absolute maximum use of it. Those who have followed my posts will know we have not been a home for very long before we are off again.

Mo and I have had a good life together for the past 50 years. We have had our ups and downs just like everybody else but we have stuck together and helped each other no matter what. We have been places and seen things many people just dream about, Maldives 5 times will give you some idea. We both started with no family, I in an orphanage, my family destroyed in the London bombing, and Mo’s family split up in pieces. Mo and I have made it our business to pull together cousins and nephews etc… left from both our families, we have seized every opportunity to bring them together. I will shortly send out a family tree to them showing their places in the Marriott Clan (going back to 1666). When I end my life it will be with a wonderful family; and to add to that I have watched my Grandchildren grow.

Of course I would like more time but my end is now on the horizon. My ONLY regret is that I would have liked to nurse my wife in her final moments but that is not to be and she will now have to nurse me.

Please do not think I am being “pessimistic” or not “positive”, that is not in my nature. I very much intend to live as long as I can. I am just being realistic and facing the facts and that makes it easier for everybody I think. Mo and I have told my hospital consultants (one for each cancer) that I want “Quality of life not quantity”

Kindest regards – vasbyte

David

[PerkymiteParticipant]

I have just been pulled off of Velcade, because of bad side affects, and I am due to start Revlimid (something like that anyway 😀 ) second week in Sep.

Kind Regards – vasbyte

David

[PerkymiteParticipant]

Hi Mary, Sorry you have had to join us. I suffer from constipation. Prunes and Laxido are my answer.

If I have not been for awhile I will eat 8 prunes on one day and four on consecutive days until I go, then I resort to the Laxido.

Kindest regards – vasbyte

David

[Author]

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