Folfirinox started on Wednesday and other stuff

Hi guys, thought I would update.

Ray has not been well at all, still isn't. From the round of chemotherapy on 22 Aug he has been in bed, apart from a couple of forays downstairs at the beginning. He is feeling weak, tired and low. His appetite is not great and he's not drinking nearly enough fluids. On the plus side he doesn't seem to get much pain, just the occasional feeling of discomfort that oramorph seems to sort out.

He does have odd moments of being a bit more chipper, like yesterday afternoon (his birthday) when we had a lively chat with KATB and son #2. He still has a ready wit!

I do keep up with posts but forgive me if I don't always make a response, I am thinking of you all and how you are doing.

Julia x

Hi Julia

Really good to hear from you!!

Not so good to hear that Ray is still so bloomin poorly. I knew of course and have already posted a reply to KATB but I'm sure you will have read that. I'd been thinking of you all as you hadn't posted for a wee while.

Has Ray got any more treatment scheduled or is that on hold until he feels bit stronger? You must be feeling so frustrated and exhausted by it all. Good news that he isn't having much pain and that he can still be chipper. That is a good sign!! Wish him a very happy birthday for yesterday from me.

Hope you manage to have a nice restful weekend and that things pick up for the better very very soon

Cathy xxx

Hi Julia,

So sorry to hear Ray is feeling so poorly. How I wish I had a magic wand and eradicate this b####### disease.

As you say it's positive that he is not in pain. I hope you are managing to look after yourself aswell, we are all thinking of your family.

Keep us posted, sending hugs.

Bee xx

Hi Julia,

Just seen your post and realised that Ray is not feeling great. I'm really sorry to hear that and hope that he gathers some strength soon. So pleased for all of you that he does not appear to have much pain because that is just so draining. Hope he managed to enjoy his birthday ( happy belated birthday Ray! )

Thinking of you and sending a big hug

Karen xxx

I hope Julia you don't mind me hijacking your thread briefly but as it's Friday I just wanted to wish and hope that everyone on here has a wonderful and relaxing weekend.

Also Julia, how is Ray?

Karen, how is Bob?

The last time you both posted an update they were both feeling poorly and I was wondering.. hoping.. that they are both feeling better??

Cathy xxx

Cathy,

I have also been wondering..

Fingers crossed

Bee xx

Hi Cathy and Bee, thanks for asking about Ray.

He's not great. Yesterday they started the syringe pump, not because he's in a great deal of pain but because taking all the meds was having an adverse effect on gastric comfort, and his emotional state - he's always hated taking them. Not unusual I think that.

The district nurses will come every day now and that's let me off the hook re clexane injections!

They have taken out midazolam from the pump because he woke up a bit spaced out and has slept most of the day. I think this is going to be a good move re comfort levels.

We have an open appointment with the onc so that if Ray is feeling up to it, he can just turn up and will be seen.

He's not eating or drinking much and is pretty fed up (understatement!).

The local medics, GPs, DNs, Macmillan are all being brilliant, so grateful for them.

Hope everyone else is doing well. I've been wondering myself about June and Bill, not heard from her for a while. I hope everything is okay over in Ireland.

Karen, hope Bob is improving and feeling better and you've resolved work issues.

Best wishes

Julia x

Hi Julia

Well, it goes without saying, I hope, that you know we are thinking of you and have fingers crossed things improve. Hopefully with those changes Ray will perk up.

It sounds like you are getting very good support and good you are having the DNs in each day which will give you some respite as well.

I also hope all is well over in Ireland. Hopefully June has just been busy with retail therapy...

Hope you and Ray manage to have a restful weekend and that things brighten up very very soon.

Cathy xxxx

Hi girls,

Julia I'm sure that Ray will be so much more comfortable with a syringe driver and hope he starts to perk up. You will have fantastic support from the district nurses and will build up a great relationship with them. They are usually so good at lifting spirits and will be just invaluable. I was a district nurse myself for 10 years and it was such a rewarding job. Don't know why I left really!!!!

Cathy is sounds that things are pretty stable for you two and yes where is June? I'm missing chat of her shopping expeditions! Hope everything is ok June.

Bee - how are things with you?

Ive left a quick update re bob on Sarahs thread - still in hospital but things moving forward I feel. He managed to call me this morning and sounded much perkier. They thought he had a blockage in the external drain which could be causing the infection so yesterday went for another procedure. He was terrified as when it was initially performed he did not have adequate pain relief and felt everything. I turned up at his bedside at 07.30 and did not leave him, including standing outside the room where they did the procedure. Again they said he would be ok with paracetamol! But I persuaded them to write up midazolam and fentanyl and he slept and snored through the whole thing. I could hear him. Following lots of complaints about the right people not been onboard we now have a whole team with oncology and palliative care teams being brilliant.

With regard to work Julia I went to an occupational health appointment following my last sickness and she sent me straight home on long term sick leave. Bit of a relief really I have to say.

Have a good weekend everyone and June if you are there I have been so deprived of shops I taken to online shopping and have made 2 inappropriate purchases for dresses that are too small and probably too young for me! Who cares..... I plan to slim into them!

Karen xxx

Hi Karen

Good to hear from you! Not so good to hear Bob is still unwell, but on the mend hopefully? It sounds like you are doing a great job with the hospitals but must be shattered. You wonder don't you how people who are poorly manage without having someone to advocate for them?

Lets hope it's onwards and upwards for Bob here on in.

Jonathan is ok (ish). He still has the tummy aches that I'd posted about a little while ago and I eventually managed to persuade him to try creons and got some from the doctor last week. They seem to be a low dose, lower than everyone else uses but as we see the oncologist Monday think will stay on what was prescribed till then. Monday also brings SCAN RESULTS V v apprehensive about them as he hasn't had treatment since May. 2 good things I guess... he is still off the pain killers and is no longer taking insulin so we'll see.

Not been shopping myself for ages, can't face getting a larger dress size (post diagnosis fat, largely wine related) but still hoping for some more maxi dress action before Autumn truly sets in.

So fingers crossed for this weekend and hope it brings some positive news for you and Bob, and everyone

Xxxx

Hi Karen,

I have noticed from previous posts that you are a Health Visitor as I am. I do not know how you have managed to work at all with all this going on. My GP signed me off sick when my husband had a whipples then a pancreatectomy back in May and he hasn't been great since, he has been in and out of hospital and rough in between. Feel pretty guilty about not being there for my team when we have so much going on, but I wouldn't be much good to anyone! Paul is now going home on TPN, so at least we wont have to worry about him losing more weight or being dehydrated. We were also worried that they might have to stop his chemo as he was so ill. Feeling quite fortunate that they have been able to arrange this.

Everybody's story is so different but all so difficult,

Nikki

Hi ladies,

Nikki, another HV, then there were three )! How odd is that?

Sounds like you and Paul have had a rough time since May, fingers crossed home TPN does the trick.

Karen, I am not at all surprised to hear you have been signed off, definitely a good move and one less ball for you to juggle! Glad to hear Bob is making positive steps forward and as you say all the right people are now on board.

Julia, I have everything crossed that Ray has had a better 24 hours complete with syringe pump and district nurses. As others have said they will be able to support you aswell and relieve the pressure. Hoping to hear soon of Ray perking up x

June, I am also looking for an update from across the sea, hope all is going well , and the Irish economy is ok if June isn't shopping!

Cathy, you must be very nervous, here's hoping for some positive news and hope the creon is helping too! Keep us posted and try to enjoy the next few days a such as possible.

We are ok, scan also coming up and already I am dreading the results, fear of the unknown and all that. Keep pushing the terror back in its box and trying to be positive. Currently refusing to shop and instead trying to get back into my winter wardrobe before I look entirely inappropriately dressed for work!! Am doing a charity walk tonight to raise funds for our local hospice, hoping to burn a glass of wine or two off! Do you think they should add to website info that should your partner/husband or close family member be diagnosed with PC you will gain a large amount of excess weight?!

Take care everyone,

Bee xx

LOL.

I thought the moderators ought to start a new fat club forum. I can't face my winter wardrobe yet - I am choosing to be inappropriate for now until I am beaten by frost bite and jeering small children.

Thanks for the good wishes Bee. I will post results on here. The creons we think working a little as his stomach pains have subsided until he needs the loo but he is on less than most 10000s x 3 day. He's doubles that but that still might not be enough. Hopefully this is all that is. Not put him off wanting to go watch Chelsea at the pub.. He's anxiously waiting for me now as I write.

When are Chris's results due?

Very best of luck for tonight - hope the rain stays away for you.

Nikki- I'm not a HV but wish I was sometimes. Have just cack handedly changed Jonathan's tegaderm over his Picc which stuck to everything. You all have my utmost admiration.

Have a good evening everyone!!!!!!

Xxx

Even after years of nurse training tegaderm still defeats me Cathy!

Three Health Visitors, that is strange. Thank goodness that numbers are rising so we don't have too feel quite so guilty about taking time off. My student from last year has just taken over my caseload, which is great. Hopefully will be able to avoid taking some of those families back!

Nikki

Hi NIkki

I agree that 3 HV's is strange indeed as there are not that many of us. Also strange is that I had a part time student over 2 years and during that first year she lost a close family member to PC within 4 months of diagnosis. So in her 2nd year with me when bob began 2 get symptoms it was just terrible for both of us.

On a lighter note to cathy......... Don't worry about the tegaderm, it was made especially 2 give us all hard time and even worse when wearin gloves!

Very best of luck on Monday Cathy, everything crossed for you.

Re the Creon, you can't overdose on it, so give him more!

Julia x

Cathy - I will be thinking of you tomorrow and hope to see good news

Julia - Hope your weekend is going along ok and Ray is feeling a bit better. Sending a big virtual hug to you

Karen xxx

Ps - Actually hugs to everyone

Thank you!!!!

I feel very nervous so trying not to think about it and concentrate on Sunday Brunch instead...

Jonathan doesn't seem nervous at all. His main priority is to discuss his ongoing tinglyness... I guess that's a good sign.

Karen - I was wearing gloves. The tegaderm stuck to all the fingers of both of my hands whilst still refusing to unstick from Jonathan. I thought we'd have to go out like that LOL

Have a good Sunday everyone

Xxx

Hi all,

Sleep seems to be avoiding me tonight, so have been catching up with all the forum. It's so sad that so many people are in this horrendous position but yet so lovely that everyone is willing to support one another.

My brain is on overdrive tonight, no particular reason but we all know how it is, endless questions in your mind, all hypothetical and even if you try to answer them they pop back five minutes later. Wish I could switch off my thought process as I wasn't to bed at night. Scan and results all coming in next few weeks so probably why the anxiety levels are not he up, which in itself is pointless cos worrying wont change the results!

Julia, just to say not seen any updates for a while and was wondering how Ray is doing, I know you were having a difficult time , so hope things are ok.

Karen also, hope Bob is continuing to make some steps in the right direction and has managed to get home?

Still no news from June? Unless I have missed an update, does anyone know?

Have a good Sunday everyone,

Take care,

Bee xx

Hi Bee

Good morning!! I'm away this weekend (at the seaside )so have been off line. Only accessed forum via my phone but its not ideal.

Hope you managed to get some sleep. Having just had our scan results I am with you completely in how the run up to those feels. You just want the results NOW but at the same time don't want the day to arrive. I think Chris has been doing well hasn't he? I know that is a very important sign

I've also been thinking of everyone a lot and hoping everyone is ok...

Have a happy Sunday

Xxxx

Things not great chez J_T

Ray has been in bed for weeks. He can get to the loo and back but it quite tires him out. He wasn't eating anything at all but over the last few days has managed a little fruit. Drinks not a lot either.

Days are the same. He has no interest in watching TV, listening to music, reading or anything really. Nights are wakeful and I'm shattered too.

Pain is the one thing that seems to be under control although he is uncomfortable at times. Syringe driver has made his gut more comfortable.

We carry on.

Hope all is well with the rest of the 'family'

Julia x

Hi Julia

As per June's thread.. Really great to hear from you So sorry that Ray is still feeling poorly - mostly wiped out by the sound of it rather than any discomfort? KATB might have mentioned that we exchanged tweets over the weekend so she updated me a little then.

I do so wish I could wave a wand and sort it all out (for us all). I hope you are managing to get some rest yourself when you can. I understand that you might not always feel like posting but I'll keep looking out for your post when you do.

Keep on keeping on Julia, you're doing great!

Cathy

Xxxx

Hi Julia

Have been thinking about you and not see a post lately, hope things are ok and that Ray remains comfortable. You said his appetite had improved a tiny bit so hope that trend has continued.

I hope somewhere in the middle of everything you are managing to look after you aswell!

Take care

Bee xx

Thanks for thinking of us Bee.

Things are not so great here, but under control, more or less.

Julia x

Just checking in Julia and sounds very tough for you both. Guessing it's hard not to let the fear in, so wishing you both strength and calm.

If you're feeling overwhelmed we're here for you.

Sarah

X