Folfirinox started on Wednesday and other stuff

[Cathy]

I'm sure a week will make a big difference to how Ray is feeling. And, as you say, with this lovely weather - he may feel a new man by the end of it

xx

[J_T]

Hee-hee, here's hoping lol

[Cathy]

Wasn't it you who suggested mankinis that time..............

[J_T]

Might have been .... :innocent:

[karen17]

Oh please ladies you're not on about mankinis again!!! It was my husband you were thinking of wearing the thing if I remember rightly before we went to Spain LOL xxx

[J_T]

Well, they say every cloud.... We have had a super 1½ days in the sun. Youngest son came up last night with his partner and our grandson (no 5, we have 6 grandchildren!). We said we'd see how the day went and play it by ear but Ray was feeling much better and so they decided to day over. We spent this morning in the garden in the sunshine, then this afternoon went to Fell Foot at the base of Lake Windermere then stopped off at The Mason's Arms at Strawberry Bank for a swift one.

Ray was saying maybe he could have gone ahead with 4th cycle (although onc forbade it anyway) but then again he wouldn't have had this lovely day and his ribs are still a bit sore and he wants to get stronger for next week.

Lovely memorable day.

Wishing everyone well.

Julia x

[Bee]

Sounds like a really lovely day, sunshine always makes things better doesn't it? Hope then rest of the weekend is just as memorable : ))

[J_T]

day over? STAY over :rolls eyes:

Thanks Bee, it really has been a lovely day

[karen17]

Hi Julia,

It just sounds like the perfect day. Beautiful area. Wish we could all have met you at the Masons Arms for a swift drink. Bliss Fantastic news that Ray is feeling stronger xx

[Cathy]

Count us in for that drink at the Masons Arms!!

I hope Ray continues to get stronger - it sounds like the break has done the world of good

As we all say, onwards and upwards!!

Cathy xx

[Cathy]

Hi Julia

Isn't Ray due to have treatment today? I know he had his bloods earlier this week.

How's he doing?

xx

[J_T]

Hi Cathy and thanks for asking. He had bloods on Tues, including glucose and his blood sugars were perfect! Saying that his 'week off' he was great, it was the week before he felt light-headed and poo!

cycle 4 went ahead as planned yesterday and he suffered NO adverse reactions during infusion - yay! He's okay today, had a bit of 'indigestion' type pain earlier but had an oramorph and gone in an hour. His feet have also swollen a little, in fact before therapy but they don't seem to bother him. I keep telling him to put his feet up!

Hope Jonathan is continuing to improve day on day? Has his treatment finished for a few weeks now? (I *should* know but can't think off the top of my head!)

Julia x

[Cathy]

Hiya

Excellent news re his glucose and blood sugar levels. I know you were worried they might have been pushed up. Fingers crossed for you all for the next few days. Hopefully swollen feet and a bit of indigestion is the worst Ray will get.

Jonathan is improving day on day. He managed to walk 15 mins to his favourite pub last night (although was at pains to point out that he couldn't speed up... or jog, which kind of suggests to me that he tried ) A week ago today he was being wheeled (dramatically) by me into A&E so it just shows what a few days rest can do. He is still very fatigued but much better thanks.

Yes, he is having a break to build himself back up. Hopefully we will resume the treatment after we get back from Greece - I am nervous about leaving it longer although of course it is up to him.

You probably feel a bit like me in these little breaks now? I feel like it's also a bit of a break for me as well.

xx

[J_T]

Greece sound divine! Lucky you. Must say I would be windy about leaving the UK and in any case don't think Ray is up to that just yet!

Jonathan sounds like a trouper! 15 min walk whilst feeling fatigued, he deserves a medal! Probably feels safer on his own two feet, so strengthening his leg muscles hee hee!

Definitely agree about the breaks being good for patient AND carer! I know Ray benefited and I certainly did! Sadly we have to get back to it sooner or later - hey ho! Hoping he doesn't plummet too far. We have been given the extra steroids but whether to take them .... watch this space!

Have a fab holiday, have a drink for us!

Julia x

[Bee]

Have a wonderful holiday!!

If you are planning to throw him out of a wheelchair any time soon, then take a video, £200 ( I think) on you've been framed!!

Enjoy the sun x

Bee

[karen17]

Julia good to hear Ray seems to be tolerating the chemo a bit better now and that his blood results were ok. I think our brave men deserve a break from all this hateful treatment and so do we. Good to hear that Jonathon managed the walk to the pub. The drink at the end of the walk would be well worth it! Greece sounds just perfect Cathy. Enjoy xxx

[KATB]

Cathy have a fabulous holiday - you both so deserve it.

I hope mum and dad can get away at some point for a nice cottage break.

K

x

[J_T]

Well we are midway through the last cycle and its nothing short of miraculous! Up to last night, Ray had no side effects, no big dip on Monday so all excellent. He felt a little tired last night and he does today but nowhere as bad as before. Probably that week off did him a lot of good.

Saw the onc today - guess what? He has prescribed Creon! He covered himself by saying he was 'half right' as according to him there are two camps on whether you give it to folk who have no diarrhea. Well, whatever, we're getting it! Hurrah! Now awaiting a CT appointment.

So all in all everything going very well at the moment

Hope everyone is doing good too.

Julia x

[KATB]

It is great to see Dad so well! He is entertaining lots of visitors, going out places, eating well and it's a total contrast to the first couple of cycles where he couldn't get out of bed.

Long may it continue! I do hope the chemo is kicking it's sorry ar*e - it certainly feels like it.

Hope things are going OK for everyone else.

K

x

[Cathy]

Hurrah!! Great news!

I think you are right about the break - we had exactly the same experience - chemo was better tolerated after a little break between sessions 4 and 5.

PS - Jonathan has come on in leaps and bounds now he is on his break. Has lots more energy, can eat (and drink!) as normal and the muscles on his legs are starting to build back up. All tingling seems to have gone as well so he is back on his guitar. We've ordered his pic line cover for the holiday so hopefully he can swim as well (I'll feedback afterwards to recommend one, or not if it does the trick).

It definitely sounds as if Ray/Dad is headed in the right direction.

Very pleased to hear that.

xx

[J_T]

Thanks Cathy, SO pleased to hear about Jonathan too, what a difference it makes eh?!

Remind me, when do you go away? Bet you're looking forward to that!?

Julia x

[Cathy]

Hi Julia

We fly on 1 July all being well. We've got 2 weeks booked but if Jonathan feels unwell or doesn't want to stay for so long we'll come back early. Hopefuly once he's had his first glass of Mythos we can relax into the holiday and forget stuff for a while.

I still can't quite believe that it looks like we might be going after everything that has happened since we booked it.

So, I've got a week and a half to drop a dress size

Fingers crossed you manage to get somewhere lovely too.

xx

[J_T]

Sounds fab!

Lol at dropping a dress size - I wouldn't bother with the effort you'll put it all back on holiday! Just enjoy!!!

Holidays are bit further down the line for us but as we live in a lovely location we're doing okay

[Bee]

Julia,

You must be very restrained, think I would have struggled not to say" told you so" to the oncologist, you can now join the creon club, perfect!! Hope it helps, and things continue in a positive way, sounds like the chemo break has really helped.

cathy, have a wonderful holiday , relax and enjoy !!

Still not brave enough to book here, scared if we book all will go pear shaped!

[Cathy]

Thank you guys!!

I guess with us it wasn't so much being brave as that we had booked the holiday well before Jonathan even had any symptoms so the do we/don't we book decision was already made and it's just been a case of wait and see and still is really. I'll relax when we get there.

Talking about seeing - he's in bed at the moment with wonky eyesight which I think is related directly to his blood sugars changing and stabilising. I've been told that this can happen temporarily, his problem is that it has happened just in one eye today so he feels a bit cross eyed. Hopefully this is just a very temporary thing.

Bee - Chris sounds like he is doing so well maybe you could have a short trial run holiday closer to home first and see how that feels and also chat to your oncologist.

Ours very assertively told us we must go away (I hope they meant that in the nicest possible way.... lol)

xx