Pain!

[Jwilson]

We have had a dreadful time over the past few days with pain. Bill was on 15 mg night and morning of OxyContin with oxynorm for breakthrough pain. Suddenly he was experiencing horrific pain at night. Had to call the out of hours to come and basically knock him out.....three times! Meds up now to 30 mg twice a day and that appears to be hitting the spot. We have been told this is still a low dose so not so worried. You don't know these things until someone has cancer do you? Appetite gone now and he can't be bothered with food. Anyone else have the shocking pain thing? So hard to watch. The docs were great though and here in no time.

June

[Cathy]

Hi June

So sorry to hear about poor old Bill. Hopefully his med is now at the right level for him and he can get some rest and recuperate after his op.

Fortunately we haven't had too much of an issue with either pain relief or appetite so can't offer much advice, however, the steroids Jonathan had for anti sickness during chemo gave him a huge appetite.

If you haven't already, it would be worth discussing this with your GP as there maybe something specific they can recommend given the operation that he had.

Best of luck

xx

[J_T]

I've now written two posts and both have disappeared into the ether!

Ray had one bout of bad pain that saw him in hospital - they 'think' it was stent pain.

Ray is just reducing is slow release morphine tablets (MST) from 50mg to 40mg. Our medics want us to reduce this medication slowly and that's fine with us. he also has 8 paracetamol a day - which he hates taking. He's had virtually no pain since he started chemotherapy. He gets occasional 'indigestion' after food and this why we think he made need Creon although his bowels are fine. We STILL haven't had the results of the test.

Hope Bill has now got his pain sorted but don't be worried if they have to up it a bit, whatever he needs is what's right for him and it can always be reduced again like us.

Chin up!

Julia x

[karen17]

Hi June,

Hope Bill's pain is under control by now. Like Cathy we have not had a problem with pain either so can't suggest anything tried or tested.

Keep strong

Karen xx

[Jwilson]

Oh flip. The hospice nurse has him up to 40 mg OxyContin night and morning with oxynorm for breakthrough pain. Better than paracetamol. Please let this dosage sort out the pain. It's just dreadful and Bill is not a moan in any shape or form but he hasn't been able to get a handle on it. The pain also means he can hardly eat, he is like a twiglet! Fingers crossed no on call needed tonight. Thanks for the support everyone it really helps x

[Bee]

Hi, fingers crossed the increased dose helps and you all get some rest tonight, thinking of you xx

[KATB]

Fingers crossed the new dosage helps

K

x

[J_T]

Hi June, Ray has MST *and* paracetamol, though as I said we are reducing dose.

Has Bill started chemotherapy yet? Ray and Jonathan (Cathy's partner) and maybe others, pain went after chemotherapy started.

Hope you both get a decent night tonight.

Julia x

[Jwilson]

Ah right. Bill has an oncology appointment on Thursday. He was told that they were not going to start chemo until after our daughters wedding on July 6th. His operation was just there on May 15th and they told him he had to recover from that first of all. Maybe we will hear more on Thursday. Thanks folks!

June

[J_T]

Ah yes, we had to wait for chemo until Rays jaundice went. How was Bill's night?

[Jwilson]

His night was ok, however the prescribed sleeping tablet? Didn't take it! What are men like. He woke up just for a while and watched TV maybe an hour and then felt not too bad. Getting food into him is so hard. He hates everything, its like trying to cajole a wee kid into eating something. I know its not his fault its just the illness but I wish he could find something which was appealing.

June

[Bee]

Hi June, sounds like last night was a bit better, fingers crossed this continues tonight. If lack of appetite is a problem, have you asked or been given some high calorie prescription drinks, fortisip, fresubin etc.?? small volume but calorie packed, worth asking for them.

It is so hard for you and frustrating that there are no easy solutions. Keep taking one day at a time, sounds like you are doing so well.

Bee x

[J_T]

Ray was terrible at taking tablets - hated it! He's better now but still not keen :rolls eyes:

Its hard to get them to eat when they feel awful. Ray didn't eat much for about two weeks, you couldn't even mention a food, he would put his hand up to silence you! When we mentioned it to the docs they weren't that concerned and said, food not so worried about, just keep the fluids up. I guess they know the process. Ray didn't even have an interest in tv or much of anything then.

Once Bill starts getting treatment and/or starts feeling more comfortable his appetite will return.

Hope tonight goes okay too'

Julia x

[Jwilson]

Bee and Julia. Food just seems to have become an issue, however the lions tour on TV still holds his interest, even attempting to yell at the ref this morning! I have told him the food is there, I am not going to try to tempt him any more. Eat.....or don't eat, of course tomorrow I will begin again with would you like this would you like that? Here girls god help us all if we were ill, Bill can boil a kettle, just about and a piece of toast is a possibility. Cook? Na not his thing!

June

[J_T]

lol, I have been wearing a dust mask this week as I have a cold - unheard of for me usually!

[Cathy]

Hi June,

It is tough with the food. We've been lucky so far as Jonathan has pretty much had a good appetite throughout but the last session, that so wiped him out, was more difficult.

Really I gave up trying to second guess what he wanted and left it to him to decide as and when he might fancy something - often odd food he wouldn't normally eat, bland and boring. I'd make special trips to the shops to buy boring food which then he might or might not eat. Once he started to feel better I had a breakthrough with a jacket potato. It made me feel like Delia Smith!!

Bill has had a big operation but I'm sure as he continues to recuperate, his appetite will come back. Hvae you been given dietary advice for him for after his op?

xx

[Bee]

Good old rugby, guaranteed interest in this house too!!

Hang on in there June, little steps can climb big mountains xx

[KATB]

Cathy that is hilarious about the jacket potato! Mum did one for dad last week and he loved it and then when I was there on Monday he was asking for that again! He wanted it with eggs though - bit weird!

K

x

[Cathy]

LOL Kate!

I made him a jacket potato (crispy skin) with a bit of cheese, slice of ham on the side and a dollup of coleslaw and he thought it was the most delicious thing he'd ever eaten.

He still talks about "that" jacket potato.

He'll laugh when I tell him about your Dad.

xx

[KATB]

Haha! I can't remember what he had with it except peas - because he'd asked mum for beans and only as she scooped the peas onto the plate did she realise she'd cooked the wrong thing! LOL! He loved it though so no harm done!

K

x

[Cathy]

So your Dad wants jacket potato, peas and now egg?

Hmm.. I'll run that past Jonathan and sees if it tickles his fancy as well..

xx

[J_T]

whoever heard of baked potato with egg? or peas for that matter lol

strange meals being dished up chez J_T

[Cathy]

Does, in fact, J_T stand for John Torode?

I think it might do....

In fact - I think we should be told...

xx

[Bee]

I think if Chris wanted jacket potato and egg and peas I really would know he was ill, lol!!

X

[Jwilson]

So we have two weeks until our daughters wedding! Bill started on steroids today so hopefully he will find an appetite and put on a wee bit of weight. We have heard that steroids work quite quickly? It's odd that when he first got home from hospital he was eating well and now he can eat so little. Out of hours docs have rested in peace so far this weekend after three callouts in three days last weekend. Pain under control with 40 mg OxyContin night and morning and 10 mg oxynorm for breakthrough pain. Hope you are all having a peaceful weekend x