Taking the plunge!

[Bee]

Hi everyone,

Finally a more positive day, hooray for the ptc, metal stent now in place!

I am so relieved, hopefully if all goes ok tonight he will be home tomorrow to get some sleep.

He has seen the pain team aswell who he says are really lovely and work across the hospital and our local hospice, and he can now contact them at any time. The feeling is that it is neuropathic pain and have started gabapentin, they were in agreement with all his other meds and hopefully the new one will mean less oramorph for breakthrough pain.

He is now very keen to get home and of course get back to work but true to form he has been sat in the hospital working on his laptop!!

Take care everyone

Bee xx

[InfoForMum]

YEY!

Really good news Bee That stent should quickly make a difference and I believe having a metal one greatly reduces the risk of infection and blockage and yey again for having the pain specialists on board. Fingers crossed they find a balance for him that works. What a trouper getting back on the work train although I'm sure you sometimes feel like strangling him for it.

Take care

Sarah

XXX

[nikkis]

Fab news, that's a big corner you have turned, keep them coming!

Nikki

[Cathy]

Hi Bee

Great news!!

I hope Chris does manage to get home and get some rest (lock up that laptop).

So now it is onwards and upwards to some more treatment and give that disease a good kicking!!

Hurrah!

Cathy xx

[Bee]

Hi,

Home yesterday, and slept in his own bed last night! Was stripping the bed at 0700 yesterday before work,so all nice new sheets, silly eh?

So pleased he is home, chemo to start next Friday , hopefully we will get there this time.

Take care all

Bee xx

[Cathy]

Hi Bee

Great news!!

I am sure it will happen this time - fingers crossed it does. New sheets make all the difference in my book..

xxx

[karen17]

Great news Bee and of course clean sheets matter! Keep up the good work both of you

Karen xxx

[cestrian]

Clean Sheets! Luxury!!

I'm probably the laziest member of this forum and simply love my bed where I am comfortable and can choose from reading, watching I-Player, listening to the Radio, a combination of these or just sleeping. I honestly do think my early nights help me and prevent my feeling fatigued during the day though I do sometimes retire for an hour or so during the day as well if so inclined as I was yesterday after lunch out and a glass of wine!

Made myself fall about laughing yesterday morning as when I was getting out of the shower a few minutes after getting up I found myself thinking of what I would do when I got back to bed last night!! Mind you it is the perfect antidote to a thoroughly miserable day weather-wise so no real apology!

Love and Peace

Mike

[J_T]

Hi Bee, glad to hear things are more positive for Chris and you of course!

Hope the chemo gets started as planned.

Julia x

[Bee]

Hi everyone,

Thought I would update as I haven't done so for a while.

Finally we got started and first cycle of folfox successfully completed. Difficult to establish the side effects as pain killer juggling has remained ongoing, so if it's not been pain it's been nausea! I think (touch wood and lots of it!) we are finally getting there.

Saw oncology team yesterday and a bit more juggling of anti emetics but nothing more than that. Constipation also ongoing which I am sure is linked to ever changing painkillers aswell. On the good days it feels like we are getting somewhere , on the rough days I just feel so useless and that's so frustrating and makes me sad. So we plod on and start the next cycle on Friday.

There has been so much loss and sadness on this site recently and my heart goes out to all of you who are having going through such difficult times. I have to count myself lucky that chris is still relatively well and things could be a lot worse but sometimes my bravery deserts me and I want to curl up and sob. I also feel so fortunate that on every level from gp receptionist to consultant the care is outstanding and I know that is not the same for everyone.

Take care everyone

Bee xxx

[Cathy]

Hey Bee

Oh we do sound like we are in similar places you and I juggling pain killers and constipation. I hate it. The constipation thing is so distressing isn't it? We haven't got anywhere near managing that but hope the treatment does its trick.

I'm glad that you feel you are getting there with Chris's folfox. I am sure you are! From our "first line" treatment last time (not folfox but similar to) I remember the first session was like reaching into the unknown, the later sessions were "easier" in knowing what to expect and how to manage those. Now we are starting your old too.

I loved your expression "so we plod on" , like I muddle my way through... I doubt you are plodding, even if it feels like it. You're fighting (very proactively) an enemy none of us looked for.

Take care Bee and Chris

Thinking of you and sending lots of strength and love

Cathy xxx

[J_T]

Hi Bee, glad you've updated,I've been wondering.

Hope Chris settles into his sessions well and the stuff does it's job. It does feel like a slog at times but we just have to keep going.

You are doing a fantastic job, don't ever doubt it!

Julia x

[Bee]

Hi guys,

Thanks for your support, doesn't it just help so much?!

Julia, how are you? Amazing that you are still on here supporting others, well done you!

Bee xx

[nikkis]

Hi Bee,

It's really good to hear how you and Chris are doing. Yep, it's a constant juggle of medicines here as well. It seems as soon as I have ordered a repeat prescription we have, or a doctor has, decided something isn't working and I have a drawer full of drugs we aren't using but I can't help keeping "just in case"!

Despite the fact that things are better for us I still have days when I really struggle to cope, but yes it really helps to know others know how this feels, but sometimes it all seems so unfair and I feel so sorry for myself,

Take care,

Nikki

[Bee]

Hi,

Nikki, your drawer sounds like my kitchen cabinet, I had a cracking headache the other day , looking for nurofen and was laughing out loud as it occurred to me there was definitely a few items in our kitchen which would sort my headache out! Some days are so difficult aren't they, and it does seem so unfair, well it is incredibly unfair and no one should have to go through any part of this, I tell myself the hard days are just me being human.

I write this after an unsettled night , and have just had the conversation that when we pitch up for chemo in a couple of hours will ask to see the docs, griping abdo pain again and I think a "full" looking tummy, (or am I just paranoid?), and a lot of oramorph down the hatch. So the roller coaster continues at sometimes a terrifying pace, and we will see what's at the next turn, hold on with grim determination and do so whilst maintaining normal life, work, kids, walking the dog!!

What is it I do, oh yeh plod on!

Moan over!

Take care all

Bee xx

[Bee]

After my moan this morning I have at least established that I am not paranoid. Chemo planned for today but all change!

Short version, after amazing attention from specialist nurse and consultant ( again!), chemo all delayed as duodenal stent now needed. Stomach not emptying properly due to duodenal compression by that blasted tumour, hence a stent needed. Waiting for confirmation of the date for this procedure.

So on one hand pleased no paranoia evident, and also that a cause for fat tummy and foul smelling burps has been found. On the other hand gutted that this means a delay in treatment and also very afraid of a very slippery slope.

Bee xx

[Slewis7313]

I don't know about paranoia Bee, sounds more like you have a really good 'handle' on the situation. Yesterday was obviously still a difficult day for you both, especially with the delay in treatment. I hope they get the stent sorted quickly and good to see the medical support is as it should be.

Take care both

Steve

X

[Cathy]

Hi Bee

Oh I do hope you get a date sorted soon. You must feel so worried although it is good that they have found the cause of a problem.

I kind of feel we are both in a similar place at the moment. Our treatment due to restart Thurs but poor Jonathan still struggling terribly - oncologist thinks as a result of disease on his tummy (so suggested treatment should help) and although X-rays and scans showed no blockage internally I worry they may be wrong.. Or that the treatment doesn't work and he continues to have this pain.

Oh, sorry for rambling on on your thread. I've got my own for that!

Excellent that you are pleased with the medical attention you are getting. That must feel so reassuring.

Keep on keeping on Bee

Cathy xxx

[nikkis]

Sorry to hear this Bee, we always hope our paranoia is unjustified, it's such a bugger when it's not. Hope you get it all sorted soon, and good to hear that you are getting good support.

Picking up on what Cathy said, When Paul was in a great deal of pain and became distended, they could not find a cause on scan but when they took some fluid off there were cancer cells in this and we were told these we're making his bowel "sticky". They pressed on with the chemo, and although he still has some pain, things are much better. We now suspect (hope), that most of Paul's ongoing problems (pain,diarrhoea,tiredness) are due to the tough chemo.

Nikki

[Cathy]

Hi Bee

Not heard from you for a little while and have been thinking of you and how things have gone since your last post. How did the stent go?

I do hope all is well with you and Chris...

Cathy xxx

[InfoForMum]

Hi Bee, just to back up the other comments, what a double edged sword. Good instincts, harsh outcome, but hope you both feel it's better to know the root cause for all that discomfort and hope the stent puts your man in a better place to withstand and benefit from the chemo and perhaps regain some strength in the mean time.

I remember standing toe to toe with a young doctor and forcing him to back down when Mum looked at risk of being discharged with no diagnosis when she went to hos with abdo pain after her biopsy. I was treated as a pain in the arse by all, but borne out by the blood results that confirmed my diagnosis of pancreatitis and sent them all scuttling around.

I said afterwards, without a trace of humility, that I was the best informed person about Mum's condition, likely root cause for issues and likely best steps (in the absence of any nurse or doctor who had the full history of her disease, treatment, symptoms and general day to day state of mind and health). That's true of most carers who feel able to read up on and understand the googlies this thing can throw at you.

Sending hugs and hoping the stent gets sorted quick and done well with no hassle during or after. Keep on their cases Bee - you know you're right

Sarah

XXX

[karen17]

Hello Bee, Nikki, Steve, Mike, Sarah and Cathy. I don't post on here often now but just wanted you to know that I do follow your posts and you are all in my thoughts and prayers. Good luck today Sarah, you are a force to be reckoned with, your post made me smile as I think I was classed as the carer from hell too but as we all know we quickly become experts in PC and the shared knowledge from this site is just fantastic. Look after yourselves and your loved ones. Big hugs karen xxx

[nikkis]

Hi Karen,

You are always in my thoughts too, hope you and your children are coping ok.

Bee,

Really hope everything is ok with you and Chris.

My fellow HV's, when are they going to realise that the way they are training nurses now isn't working? So many people here have had experiences at the hands of nurses that just don't seem to care, it so very sad,

Lots of love,

Nikki

[InfoForMum]

Karen hon, thank you for your kind word and lovely to hear from you. Nice also to know you are around even if not posting as long as you're not holding back feeling like you shouldn't.

I know I'll speak for all if I say we're all here for you if needed for any re-going over or reflection. This journey doesn't stop when a loved one is lost. It seems like it almost starts again at that point. Looking at the whole thing from end to end with the attention you didn't have to spare while in the middle of it. If there's some of that going on, come have a chat!

Lots of love to you and the family and hoping the "normal"/good days are beginning to tip the balance against the other harder sort.

Sarah

XXX

[Bee]

Hi everyone ,

I have been reading all of your posts over the last few weeks and know that some of you have been wondering how Chris is, and how the duodenal stent placement went. Well what can I say?

Duodenal stent was requested on Friday 22nd November and we went home to await the appointment , but under instruction call us if anything Amiss or you are worried. Sunday 24th ( day off our sons county rugby trial!!) chris passed a little blood and off he went to hospital. We visited that evening, gastric tube in, stomach emptied, poorly but comfortable and popping with pride as our son got into the county squad and chris has coached him since aged 6.

Monday morning, phoned the hospital, chris asleep, informed had another again bleed overnight. So instincts set in and I abandon work and go to hospital.

After 24 hours of IV fluids, blood transfusion , antibiotics , ct scan, we were told the tumour had perforated the small bowel and his entire bowel was extremely sick, no surgical treatment possible. So our world crumbled a little further.

Chris was fully aware of the ct results and the implications. He was transferred to our local hospice within two hours for pain management. We were given a timescale of several days but possibility of only hours.

So in true chris fashion he blew the statistics and we had fifteen days, he died yesterday.

I stayed with chris for 14 days and nights, and so did the kids. He couldn't come home, but home came to him. Me and the kids were with him throughout and we talked to him for many hours , I have no doubt Chris knew he was adored and loved.

Throughout his illness chris wanted very little, other than to live life to the full and carry on as normally as possible for as long as possible, he did that and three weeks ago was working full Time with not a days sick leave since diagnosis. I am inordinately proud to have spent twenty five years with him, and to have the privilege of being there for his last breath.

So now I plan a funeral at Christmas and watch our beautiful,children go,through terrible pain. Nothing prepared me for this , it's an overwhelming hurt that cannot be described, but I have to hope that I can be strong enough for chris and the kids.

Take care all and if you didn't tell,someone tonight how much you love them, do it now xxx