[andygParticipant]

Hi all.
Just got back from a wonderful week on the Greek island of Kefalonia. No health issues 🙂 the sun shone 😎 the food was good and the beer was cold and wet.
Due to the timing of our trip I got my consultants permission to delay cycle 20 of RCD so I had 2 weeks off my chemo tablets. That cut down the amount of luggage a bit. 😉 I still had to take all the other pills, potions and syringes etc though oh and my emergency supply of antibiotics, so kindly provided by my consultant, in case of problems.
Anyway everything passed without any medical drama. My back restricted me a bit so we didn't travel far by foot. Sat by the pool mostly. Ok ok Eve and Tom! I sat by the bar too :-0
I've started cycle 20 today and hopefully injected myself for the last time, over 700 times was a bit much, I'm now on a tablet anti coagulant. I don't think I'll be reaching the free Revlimid at cycle 25 as my consultant thinks there's now an upward trend in my PPs, they're up to 26 now 🙁 so the search will begin again for another treatment that'll keep me holidaying for a while.
Oh my consultant has added to my daily intake of "anti" tablets – I'm now on anticoagulants, antibiotics, antivirals and now I'm on antifungals as well! She's certainly making sure I get my monies worth out of the NHS. I'd list everything I'm on here but I don't think even Dex could keep me awake that long!
Got to get used to my new schedule of what to take when :-/ some with water, some with food and some on an empty stomach! It's a full time job.
My diary is pretty full too. Oct 8th off to the lakes for 3 nights, Oct 1th off to Nottingham for the beer festival, Oct 16th off to spinal consultant to see how my op has gone and the biggy next month on the 25th to see my consultant and blood tests. Actually the 8th is the really big date it's our second wedding anniversary 😀
Ok that's enough from me for tonight only another 3 Dex ramble nights to put up with this cycle so you've been warned.

Everyday is a gift
Live it the best you can

Andy xx

[eveParticipant]

Hi Andy

Well the holiday has done more for you than the tablets,I hope they find another drug for you soon,Slim has also been put on the RIVAROXABAN instead of Claxane but he also has been put on GCFS. Injections to help with his immune system ,it's only 3 a week,so not to bad.
The different tablets at different times,plus as you say empty or full stomach is getting Slim down as well,he usually looks after his own tablets,but I now keep an eye on what he is taking and when because some clash with food also.

We have trials of pomilidomyde starting in Kent ,but I know the consultant wants Slim to stay on CDR as long as it works,but the fact is as soon as he stops or the drug stops working,it comes back, reading up on it 15 percent are high risk myeloma,buying time but no remission and no miracle cure..

Enjoy your anniversary,make it special,as you say every day is a gift.Love Eve

[tomParticipant]

Hey Andy

My you do have a full diary 😀 its the best way to do it, and as for the laying about on the Sunbed well lord I see younger and fitter ones doing that some don't move for food just lay and lay some more ha ha.

You keep on doing what your doing my friend its doing you both and us some good.

Onwards and Upwards Tom x

[PerkymiteParticipant]

MY HERO, I should be starting Revlimid and Dex this Friday. I have my head scan on Wednesday at 8:50. I have told them they will not find anything. my friends have been telling me for years that my brains are in my "bum" 😀

I am hoping that I can now organise some quick Radiotherapy after the debacle the last time. My ribs are giving me real problems now.

Enjoy your anniversary on the 8th, 100th?, I love the Lakes area. Unfortunately it was raining the hole time we were there, forced us to stay in the Pubs pretty much all the time 🙁 .

Kindest regards – vasbyte

David

[bandityogaParticipant]

Hi Andy

Great that you managed to get 2 weeks chemo free in the sun, holiday sounds good. You are making the most of life and getting out there. I will be doing the same with Ian when he gets out. Got cinema lined up and drives in the country. Holidays will come later.

Good luck with the back and I hope they find another treatment that will work for you.

Every day is a gift, live it to the full.

Maureen x

[andygParticipant]

Hi all;-)
I managed a ramble free night last night even though I didn't sleep much. Haven't quite managed that tonight >:-)
I'm only planning a short post tonight you'll be glad to hear.

Hi Eve
I'm on that Rivaroxaban now instead of tinzaparin so hopefully the needles are the thing of the past. Not throwing away my knitting ones though 😉 I'm feeling ok at the moment though that could be the Dex effect. We even went out for a Indian tonight 😀

Hi Tom
I just lay there and sent Steph for the drinks and food 😎 then I woke up and I went and got them 😛

Hi David
You make me laugh – "MY HERO" – We're just making use of the time that's left to get about whilst I can 😉
I hope your scan went well today. I'm looking forward to your Dex fuelled musings over the weekend.
We try to get to the lakes twice a year and it nearly always rains. Mind you it would be called the valleys if it wasn't for the rain >:-) and the pubs are pretty good. I can just about walk from one to another even when the suns shinning.

Hi Maureen
It took me a long time to become confident of being away from my safety net of the hospital and I was only in 3 weeks. It's still a worry now when we go abroad but in my case it's got to be done whilst I can. You may find you'll need to be patient with Ian and gradually build up his confidence – but I could totally be wrong and he'll be confident from the off. I know Steph worries about it too even more so than me I think.

Ok I said it was going to be short and shortish it nearly is. It's my last Dex day tomorrow, err today now, so only one more night of potential rambles from me left. Then we can all sit back and read David's rambles over the weekend which will all make a great deal more sense than mine. Now do I watch a film or read a book now decisions decisions.

Everyday is a gift
Received with thanks

Andy xx

[mhnevillParticipant]

Hi Andy

So glad the Greece trip went as well as hoped for and you have more planned!

Do hope they find a drug that really suits soon.

Keep drinking! I guess the stronger stuff can count towards your three litres!

Love

Mavis x

[VickiParticipant]

Hi Andy and all,

Glad you and steph had a great holiday Andy….when we went to kefalonia it was in the July and the worst weather in 30 years! Too cold to be on sunned without duvet! And boy did it rain. Still you had a great time so that's all that matters. Those pesky pps not the rise, that's a bugger and not on the plan! Hope the back is feeling a bit better and fingers crossed for the next phase of treatment.

You're right, life is a gift! We all need to value it 🙂

Keep well all

Vicki and Colin xx

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