A forum for family, friends and carers of pancreatic cancer patients

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Go green sue
Posts: 38
Joined: Thu Jul 17, 2014 10:41 pm

Re: Roger's Story

Postby Go green sue » Sat May 09, 2015 7:56 pm

Hi Sue, Fortunately my
tumour was caught in the pre malignant stage and I have been quite well since my distal pancreatectomy 8 months ago. I had a scare last month when they thought a new tumour had grown when I had my follow up MR I scan but they decided it was a split duct but the thought does niggle in my mind.
I am no stranger to PC though as I nursed my mum with it 20 years ago. There was no chemo or rad offered then and it was inoperable so she was fortunate to live 2 years.
It is such a debilitating wicked disease but try and live for the moment and have faith in the treatment even though life feels a struggle at times.
I am waiting for a phone call from my daughter at the moment as my lovely 11 year granddaughter has just been admitted to hospital with suspected pneumonia. I couldn't go on my last holiday in October as I had an abscess following my pancreatic surgery so we rebooked and should be going on a cruise tomorrow- armed with creon ha ha- but I don't know if we wi make it now with Jessica being so poorly. Isn't life cruel sometimes ?
I wish roger all the best with his treatment and I'm sending you hugs.
Sue xx

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Roger's Story

Postby Sueoliver » Mon May 11, 2015 10:33 pm

Hi Sue you sound much more upbeat in your last post! I am glad Roger tolerated the chemo better. My Mum had hers reduced by 20% each time! It does seem to make a difference!
Let's hope he continues to do well.
Stay strong,
Love Sue x

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Roger's Story

Postby kittycat » Sat Jun 06, 2015 4:46 pm

Well, I haven't posted for a few weeks but I have been reading all the posts and what a lot of sadness there is. No matter how optimistic I try to be the disbelief of what has happened and how things can only get worse just take over me at times and I just cry for nothing.

Roger has had a few ups and downs - 2 stays in hospital, one with constipation and dehydration which was sorted in a couple of days and one with water works problems which was rectified over night but it meant that his chemo was delayed for a week so that he could build himself up a bit. He's been feeling much better and because of this we were able to see Prof **** in London regarding Nanoknife and have booked in for the 1st July which has really raised Roger's spirits. Unfortunately he then developed a chest infection which meant another delay to his chemo but on the plus side this has meant that he has felt really well and able to enjoy life a little more although he hasn't put on any weight despite his good appetite. He has chemo this coming Monday and hopefully a fortnight after before going to London for the Nanoknife and I just hope he will be strong enough for the journey as he has really suffered when he had the last two sessions. Hopefully we will be able to handle the nausea and sickness better this time but you just don't know do you.

His back pain has increased and he is now taking morphine tablets and liquid morphine to control it and being comparatively pain free has increased his well being too.

I do feel for everyone out there going through thi, you just don't realise how many people this dreadful disease affects and we can only hope that they find a solution soon.

Take care everyone.

Sue

MBN
Posts: 1
Joined: Sun Jun 07, 2015 11:05 am

Re: Roger's Story

Postby MBN » Mon Jun 08, 2015 9:47 pm

My Mum was diagnosed on Friday with PC and it has been really helpful to read these posts. I've learnt about stents draining away the bile, the use of creon and also about the type of chemo. My Mum is 86 and the tumour is supposed to be large. She is jaundiced and the only mention of anything yet is the putting in of a stent. We have not heard from an oncologist yet. She mostly just wants to sleep now.

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Roger's Story

Postby sandraW » Tue Jun 09, 2015 1:10 pm

Hi MBN
welcome to the forum where no one really wants to be, but where yu will get lots of advice and support. Sorry to hear of your Mum's diagnosis, my husband had jaundice and it made him very tired too.
Why don't you start your ow thread, then we can look out for your posts, and offer more support, hope you hear from the oncologist soon, take care sandrax

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Roger's Story

Postby sandraW » Tue Jun 09, 2015 1:19 pm

Hi Sue,
I have not been on the site for a while, so just been catching up on your posts, sorry to hear of Roger's diagnosis, hope he is feeling ok after his chemo yesterday, and that he improves soon, take care sandrax

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Roger's Story

Postby kittycat » Tue Jun 16, 2015 8:50 pm

Well, Roger definitely coped better with this cycle of chemo but as we enter the second week the sickness is back although not as bad, but also with diarrhea as well. It seems like I'm forever giving him tablets and he's asking when is he going to feel better. This is an awful disease. When I'm with him I can be strong but there are some really dark moments when I'm on my own. I know i'my not alone in this butI just hate seeing him suffer so and he's so thin even though he's eatig well and taking creons. I just tomorrow will be better for him.

Sue

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Roger's Story

Postby Sueoliver » Tue Jun 16, 2015 10:51 pm

Hi Sue this is an awful cancer but you are doing a wonderful job! We all have dark moments but we seem to get through them and posting on here helps.
I'm glad Roger coped better this time with chemo lets hope he starts to feel better. Look after yourself as well and stay strong.
Love Sue x

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Roger's Story

Postby kittycat » Fri Jun 19, 2015 9:33 am

Unfortunately Roger was admitted to hospital yesterday following diarrhea and vomiting - we only went for a routine Oncologist appointment but she could see that he wasn't well and is arranging for a CT scan and blood tests in order to find out the cause. It could either be the tumour that is progressing or the chemo causing these dreadful effects. His CA19-9 has gone up from about 3300 to 3900 and from diagnoses in March he has felt pretty awful. His best few weeks were when he had to have a break from chemo and he started to feel better then. I can only hope that things are going to get better soon - I keep hoping and hoping but it hasn't happened yet. If I had to look for plus points in all this, Roger is getting good care and they are trying to sort him out pretty quickly. This does however put the Nanoknife on hold as it was planned for the 1st July and Roger should be having chemo that week, whether it be Folfironox or something different, but hopefully we will be able to get Nanoknife rearranged quite soon.

Hopefully I'll have better news when I visit him today, or at least some answers because he can't go on like this.

Sue

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Roger's Story

Postby kittycat » Wed Jun 24, 2015 4:17 pm

it's been an absolutely dreadful week this week. Roger was discharged from hospital on Monday but still has really bad constipation and I can't speak to the GP until tomorrow as he doesn't work on a Wednesday. We see the Oncologist again tomorrow but she is questioning Roger's quality of life as a result of the severe side effects he has suffered on Filforonox. His tumour has grown but not enough to say that the chemo is working and he could have another 3 cycles before having another scan. The alternative is to have a different chemo which is less effective but hopefully kinder on the side effects. To make matters worse we had the District Nurse today and she is talking about special mattresses and rings for his seats and maybe a chair for the shower. He doesn't need any of these - it's far too soon, but then she asked where the hospital bed would go when the time comes. I don't know how I'm holding it together at the moment and tomorrow we have to make this difficult decision with the Oncologist. I try to keep optimistic but it just seems to get worse and Roger just wants to feel better than he does now. Don't know what will happen next but surely it must get better soon.

Sue

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Roger's Story

Postby Didge » Wed Jun 24, 2015 7:38 pm

Sue, you poor thing. My fella found that enemas were the only thing which worked on constipation! I do hope things become easier for you both soon. xx

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Roger's Story

Postby kittycat » Tue Jul 07, 2015 9:25 pm

Roger had his 4th round of chemo yesterday and has been OK really. He's only been sick once but has spent pretty well most of the day in bed, but I'm sure things will improve in a few days. As long as the sickness is controlled I think Roger can deal with it, and he is eating OK, a bit less today but generally he has a good appetite. It was good news to learn that although Roger's tumour has grown slightly, is still suitable for Nanoknife and we've rescheduled for next month so fingers crossed everything goes smoothly in the next few weeks.

I feel more in control now and am managing to take one day at a time - I don't make any plans and just enjoy every day that we have together whatever we do. This dreadful disease really does make you appreciate the little things in life and count your blessings.

Sue

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Roger's Story

Postby Sueoliver » Tue Jul 07, 2015 10:44 pm

Hi Sue I am glad Roger is tolerating the chemo and a rescheduled appointment for nanoknife is something positive to focus on. You certainly sound as if you are more in control and dealing with this awful disease. It is hard as you never know what it is going to throw at you.
Stay strong for Roger you are doing an amazing job.
Sue x

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Roger's Story

Postby kittycat » Sat Jul 11, 2015 7:49 am

Chemo has just been so much better this week with practically no sickness and after being in bed practically all Tuesday he hasn't7 needed a nap all week so we both feel much happier about things in that respect. On the down side our beautiful cat of 20 years had to be put to sleep yesterday, my mum was taken into hospital and Roger was accidentally knocked over by two small dogs when we visited family. As Roger is so frail it didn'the take much to send him flying and has hurt his back and slightly grazed his arm - do I need to worry? I've put antiseptic cream on his arm so hopefully it will heal but not sure what else to do. Apart from that it's been a good week and we're hoping that it continues that way.

This board really is a life line, just to read about others and know i'm not alone, even though it'a really lonely place right now. Thank you for listening.

Sur

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: Roger's Story

Postby sheena » Sun Jul 12, 2015 6:53 pm

Hi my lovely I too am feeling lonely ,fills like I'm in limbo unsure what will happen next or even what I'm supposed to be doing .chin up and think of lovely things x