[PerkymiteParticipant]

Hi all, Third Pre Assessment Check-up today.

It went very well, I think! Once again no PP measure but I am assured that they have now got the system sorted out and I will have a pp measure next time (UGH). All my blood indicators were good and I am told that the pp measurement would have shown a down-would trend, if I had, had one that is.

As I have relatively few side affects from the Velcade injections the conversation passed onto Holidays, as it does, and the impending expiry date of my passport -Dec 2013. My question was, [i]"Please Ms there is this guy called Andy G who has Myeloma and has gone to Greece and had a great holiday can I go? – please, real nice please!"[/i] The answer was that I could "just do not break any limbs" after the treatment finishes. Which realistically means early 2014 I think. Anyway she advised I renew my passport, even at a cost of £72:80. 😎

Hey ho and on with the third course of Velcade stating Monday.

Kindest regards – vasbyte

David

[PeterJamesParticipant]

Hi David
Well done you! all things are possible,even with mm!
You do need that travel insurance after all
We have decided not to go foreign until later in the year, so off to isle of wight tomorrow for a week
At least we get a short cruise !
Peter

[tomParticipant]

Well done that David 😀 I am as pleased as punch for you, and get that passport updated 😎 I feel sun on "My" fat neck

Elaine has booked us away to Spain (ish) and I cant wait.

Have a good un you lot.

Tom Onwards and Upwards x

[AliParticipant]

Well done David,

May I suggest you don't book a ski holiday then! 🙂

Something to look forward to, great. Maybe you could get 1 or 2 brochures to get you in the mood.

Love Ali x

[VickiParticipant]

Hey David that's great 🙂

You crack on and enjoy it, no skiing or sky diving but hey I could live without that!

You have a great one too Tom and young bride. After all you deserve a holiday with all the supporting you do on here! 🙂

Vicki and Colin

Ali, hope your mum and dad got off ok….:-) I hope getting better weather than we have had! Thanks for the email….what I don't get is that colin can't string a week together without suddenly feeling rough or really knackered! I do worry if this is normal. Example of week; Monday work 0645am to 5pm, Tuesday work the same, Wednesday 0645am til 3pm then absolutely knackered for about 3 days on and off? Is he just doing too much? Today he was up by 9am, we went visiting til1pm then to garden centre til 2 then he has been absolutely wiped out. Because we have nothing to measure it by we don't know if that's right or wrong then leading me to worry about mm! Sorry to hog David's good news thread 🙂

Vicki And Colin x

[PerkymiteParticipant]

Hey no problem at all.

I have a similar pattern. Mo has learnt to recognise the signs and she tells me to rest, if I have not realised it already, which can happen. I get groggy, start to feel real tired, slur my speech a little(no Tom that is not the Guinness), not sure what I was doing or going to do just start to feel a little bewildered and very, very tired. Whilst in hospital, in 2009, Mo brought two recliner chairs. They are great I have a large "Throw" and I just hunker down, sleep could be 20 mins. and I am up and going or two hours. Mo just lets me sleep till I wake. My family are switched on to it and if I am visiting it is the same Mo will just say David's (Dad/Granddad) has got to rest and I am packed off to a quite room or bed and that is that. I rely on Mo if she says I need to rest I go rest. You must listening to your body.

Kindest regards – vasbyte

David

In retrospect and looking at Colin's programme I would say try to space things out a bit more. I set a job(jobs) to do most days once I have done that I can sit on my butt, if I want to that is, but I do not try to do too much.

[HelenParticipant]

Hey David that's great news I must admit my passport expired last month and I've not renewed it yet, you give me great hope, it's that Andy doing it on all the meds he's on, what a star!
I've just finished my first stint of velcade now, I'm ok but very sickly withit, ugh! Not as exhausting a drug as Revlimid was which I'm rather enjoying being off now.

I agree with David too Vicki, I think Colin is doing a lot, it took me a whole year to get back to work and then they let me return gradually over 6 weeks, it's very difficult getting the balance right. I watched the gardening being done today, and because I was wearing my sun hat they let me carry the basket and pick the rhubarb, but nothing more. Tomorrow I hope to tackle the hedge, while they aren't looking!
Love Helen

[PeterJamesParticipant]

Hi David
I agree with the regular siesta program , I can sleep on the proverbial bed of nails , must admit to less nodding off as time goes on from SCT
Re hols! We decided to try UK for first trip since Armageddon , so on Sat raced off to the I o W , found lovely apartment overlooking Cowes marina , for us the total journey was seven hours , plus lugging baggage at both ends , left me a bit tired at end of the day, but more than worth it to break free from our local area of hospitals & doctors, weather great as well .

Vicki , I would say your Colin is more than overdoing it , do those hours include travel , is the job stressful or physical , either which way , slow down ! I thought I was a tough old git , but I'm impressed with Colin
Take up gardening , fresh air & exercise , it's a very good recovery program
All the best
Peter

[andygParticipant]

Hi David.
I had a great time in Greece didn't do to much just sat by the pool reading, relaxing and having the occasional beer – 😎 in the sun. I didn't come back with any infections this time so that was a relief.
We're planning on going back again in September and maybe fitting a little trip to Belgium before then. Oh and got a few days booked in the lakes in October. All subject to my health being ok.
Strangely I found it hard to keep to my drug regime whilst away but I did manage to take then all but maybe sometimes a bit late. Took my drugs and syringes in my hand luggage, so I could keep my beady eye on them so they didn't get lost, and also a couple of letters from my consultant 1 to get me through passport control 2 a note for a doctor if I needed treatment. Oh my consultant also prescribed me some additional "just in case" drugs my bag did rattle a bit 😀
David I hope that velcade does the trick and you can get the passport out and flash it around the world.

Helen you made me blush! Me a star? Reminds me of my footy days lol I wasn't a star then either 🙁

Every day is a gift

Andy

[PerkymiteParticipant]

Thanks Andy, thanks a bunch:-( . ([i]He says through gritted teeth whilst green with envy)[/i] 😀 😀 .

You have got my vote as well as Helens. Mo and I get about a bit but that is mainly in the UK, one trip to France planned August. I might look at September time for a week or two in Greece, depends on my treatment. We have not been there for many years but we have real good memories of Greece, especially the Islands, of which we visited quite a few. Did you need your letters?

Kindest regards – vasbyte

David

[mhnevillParticipant]

Hi David

So good to hear the Velcade is doing its magic!

I took the chance and renewed my Passport. I had to have a new photo and with no glasses and no smiling I look like a corpse, but what the hell! Just a fortnight now and we are off to my daughter in Luxembourg. When I ordered my Passport it felt a real act of faith, but I'm so glad I did it.

You get yours renewed I'm sure, post Velcade, you will use it lots.

Love.

Mavis x

[eveParticipant]

Hi David and all the rest.

Glad to hear you are doing well on Velcade Slim found it much better than Thalidomide ,but alas for him it is considered a not to have worked,you must be looking at least half the remission time again if not more,so well worth a passport,.8-)

Andy is a brave soul,but I can see why he lives for today,we have just got back from France,Slim was ill but had antibiotics,got off boat at 6pm in doctors at 7pm,doing my best to keep him out of hospital,doc gave him antibiotic started Dex plus Claxane ,bloods taken today,saying all that I think we are going to risk a few holidays,this Myeloma is not going away,so it will just have to come on holiday with us.
I think remission is a word that's now confined to the cupboard in Slims case,Revidimide then maintenance is the order of the day,so lets hope it enjoys going on holiday with us.. Love Eve

[PerkymiteParticipant]

Hi Eve, Yes I remember your posts about Velcade not working for Slim.

I really do not think in terms of remission and I have not done so for some time. I tend to think it is time gained – another valuable day to be used wisely. I think you have totally the right outlook when you say, [i]"This Myeloma is not going away, so it will just have to come on holiday with us"[/i] Bang on 😀

We are taking a hopeful look at maybe end of Sep beginning of Oct, just after my treatment ends, to go to Greece. Might even go for 2 weeks as we are not sure we will get another chance, remember I have Advanced Prostate Cancer hanging around in the background :'-( .

Anyway have to go Mo is waving the wine bottle – oh ok why not – just the one;-)

Kindest regards – vasbyte

David

[MariParticipant]

Dear David,

Absolutely chuffed for you, great news, have a fabulous holiday. Greece sounds lovely, I have been enjoying pictures of Santorini, no idea if Stephen will be fit to travel any time soon and it is probably horribly expensive, but it's good to dream.

I will throughly enjoy thoughts of you jetting away,

Much love, Mari xx

[andygParticipant]

Hi David
Sorry for the delay in answering you question re the letters. I've been busy riding the Dex rollercoaster. I didn't need my letters this time I just mentioned to the customs man about my needles etc and he took my word for it. Though they went through the X-ray machine and he mentioned it to the operator. So I've still got my letters and "just in case drugs" all safely tucked away for the next trip – fingers crossed.
I know everyone is different and everyone's journey with this awful disease is different but since last October we made the decision to do as much as possible whilst we can. I'm not where I'd like to be health wise and I know I probably won't get any better than I am at the moment but we are going to do our best to enjoy what we have. It's simple to say but a bit more difficult to carry out. So tomorrow it'll be flight hunting again got a date set, the day after the info day in Newcastle, got a destination – kefalonia again – just need the tickets and a bit of health luck and we are away 😎 Now where's that magic credit card?

Every day is a gift – no matter how you spend it – enjoy it the best you can.

Andy

[Author]

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