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

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Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: CHEMOTHERAPY

Postby Ellie » Sat May 09, 2009 8:34 am

Hi everyone

Just an update on my hubbie. He is feeling really well at the moment. Since he stopped the chemo, he's had no headaches (the docs said the chemo shouldn't have caused them, but they obviously did!) and he has more energy too.

He has to go for a scan this week, to see how the spot on his liver is doing, whether it's got bigger, or hopefully stayed the same. Depending on the result of that, they may start the next chemo earlier. We've got a break booked early in June, so if all is well we can go ahead and take it. If not....well, we start the next fight!

As always, keep positive, stay strong and wishing everyone all the very best.

Love
Ellie
x

gillvb1
Posts: 76
Joined: Sun Sep 28, 2008 10:31 pm

Re: CHEMOTHERAPY

Postby gillvb1 » Thu May 28, 2009 11:30 pm

Well, after my Dad was doing so well it has all gone so terribly wrong. My Dad had his final session of Chemotherapy earlier in May 2009 but not known to any of us he had developed a temperature. Be warned - if anyone receiving Chemotherapy feels unwell they should get it checked out straight away - his low white cell count meant that he could not fight of infection. My Dad didn't seek help and put up with his symptons. On Friday 15 May he was admitted to hospital. The following day my family was asked to come to the hospital where we were taken to a sitting room and told that the next two hours were critical. My Dad had septicemia which came on so quickly. He was put into an induced coma and placed in intensive care for 9 days. The last 4 days have been really tough as they reduce his medication to bring him round. My Dad is very confused, has been having hallicinations and looks jaundice and frail. Just two weeks ago he was the strong, active person we know, now he is in a body that will not work. He was on a ventilator and on dialysis and had so many tubes leading to and from his body but now he remains on dialysis which may or may not be permanent. It's been very tough on us all and we have been told that my Dad will never be the same - what that may mean I don't know but we are hoping for quality of life for him. Gill xx

chinup
Posts: 47
Joined: Mon Jul 07, 2008 2:22 pm

Re: CHEMOTHERAPY

Postby chinup » Fri May 29, 2009 10:44 am

Dear Gill

I'm so sorry and shocked to read what's happened. What a terribly cruel blow after getting so far. I remember telling my mum and dad how well your Dad was doing on Chemo and after his surgery and they were genuinely pleased that someone out there with the same disease was winning the battle. Gill, it is not over yet. Please do not lose hope - this is a very terrible time and probably the toughest test your Dad has faced to date but he is clearly a very strong chap and he could yet pull through. I don't know if the doctors can judge how much damage is done, I suspect it is a waiting game and I wish you all the strength in the world to bear it. Never lose sight of how incredibly well he has done so far - and don't blame yourselves for missing the signs - again, a indication of the strength of character your dad has that he didn't notice anything seriously amiss.

Don't know what else to say other than we are all thinking of you and your family at this awful time. XX

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: CHEMOTHERAPY

Postby Nardobd » Fri May 29, 2009 1:22 pm

Dear Gill

We haven't 'spoken' before but I just wanted to say how sorry I was to hear about your Dad. From your previous messages he seems like a very strong chap so I'm keeping my fingers crossed that he overcomes this battle too.

My thoughts go out to you and your family at this very traumatic time and don't forget that if you need to vent, we're here for you.

Love

Nicki x

gillvb1
Posts: 76
Joined: Sun Sep 28, 2008 10:31 pm

Re: CHEMOTHERAPY

Postby gillvb1 » Tue Jun 02, 2009 11:03 pm

Hi Ellie and Nicki, thank you both for your words of encouragement - what a blow to have this happen. Of course there is hope of a positive outcome, I've been saying what Ellie once said to me, 'one day at a time' and those words are so true now. My Dad is still in the xx Hospital but is now on a low dependency ward. He still has jaundice and has 4 hrs of dialysis each day. He is unable to get up out of his bed/chair but he is receiving physiotherapy and I am sure he will come home soon. Each day we see positive improvements. He is far more lucid now and is off his drips and tubes, in fact he is no longer dependent on a feeding tube so he just has to get strong now. My Dad is very close to my 6 year old daughter and he seemed to have left her in the past so I talked to her and she agreed to visit him yesterday. I was hoping it would really give him a boost and I think it did to a degree but after being so strong and withstanding 6 months of chemotherapy he is feeling low and he worries that he won't be able to walk again. I've told him that there's nothing wrong with his legs and that we'll be taking him home soon but he's not convinced. This is the beginning of a new chapter for us and who knows what we'll be up against but I have never been so close to seeing death. The hospital staff had put a sign above my Dad's bed stating 'Do not resusitate' but we soon changed that! After we described the active life my Dad had and the huge achievements he's attained, the consultant admitted that he looks at patients and doesn't see the person within - well he does now!!! I think that very ill patients should have photographs of themselves on display so that the hospital staff can see that these people were and still are worth something and that there is so much more life to come. Having said that, the hospital staff have been outstanding and he is getting the best care so we have comfort from that. I think that once he is up on his feet again he will feel that he can conquer this setback but he is still very ill. Gill xx

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: CHEMOTHERAPY

Postby Nardobd » Wed Jun 03, 2009 6:45 pm

Hi Gill and I'm really pleased to hear that there is some improvement. You're quite right in saying that we need to remind some clinicians about the person and try to make them see past the disease.

Hopefully your Dad will be back on his feet soon and that will help to give him the strength to make as full a recovery as possible. I've now had a chance to read some of your previous messages more carefully and I really admire your Dad's fighting spirit and determination so I'm sure that this won't keep him down for long!

Do let us know how your Dad is from time to time and, of course, if you need a friendly ear we're always here.

Love

Nicki xx

gillvb1
Posts: 76
Joined: Sun Sep 28, 2008 10:31 pm

Re: CHEMOTHERAPY

Postby gillvb1 » Wed Jun 03, 2009 9:06 pm

Hi Nicki Ellie and Chinup, thank you for your responses to my posts. My Dad has now had a liver scan and he was told that his liver is okay so thank goodness for that, also there's no indication so far that the cancer's returned so I am thankful for that. I took a magazine to hospital for my Dad to try to get him engaged in the outside world. It worked, he kept picking it up and thumbing through the pages which is encouraging because he had no interest in anything since his relapse. We're seeing that my dad is now going in the right direction and I will certainly stay in touch with this site and keep you all posted with his progress. I sincerely hope you are all having a far less eventful time of it. Best Wishes, Gill xxx

gillvb1
Posts: 76
Joined: Sun Sep 28, 2008 10:31 pm

Re: CHEMOTHERAPY

Postby gillvb1 » Fri Jun 05, 2009 10:33 pm

Hi, my Dad has been told that the cancer is most likely back since he had a scan which revealed that a nodule has formed in the bile duct - he is due to have a stent fitted on Monday. My Dad has been in hospital since Friday 15 May and he still isn't on his feet yet. Since being given the bad news he has said he feels that there's little point in having physiotherapy or eating but hopefully he will feel more positive after his procedure on Monday. We just need to get him home so that he can recover in familiar surroundings with the family around him to give him the psycological lift he needs. Gill xx

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: CHEMOTHERAPY

Postby Nardobd » Sat Jun 06, 2009 7:03 pm

Hi Gill and so sorry to hear the news.

If your Dad's bile duct is blocked that in and of itself can make him feel very unwell. Ted, my hubby, had a stent put in under an ERCP procedure (the endoscopy one with the tube inserted via the mouth) and it was fine - just a little uncomfortable.

Hopefully once your Dad gets home and has his loving relatives around him that will boost his morale. Let's face it, hospitals are no fun when you're ill!

My thoughts go out to you as always and I'll send an extra prayer that your Dad's procedure goes well on Monday. Do let us know how he gets on.

Love

Nicki xx

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: CHEMOTHERAPY

Postby Ellie » Tue Jun 09, 2009 8:07 pm

Hi Gill

Sounds like you're going through a rough time again with your Dad. So sorry to hear that they found something in his bile duct. I hope that the stent will sort things out for him next week.

I have been through what you are going through now. My hubby was devastated when he learnt the cancer had spread to his liver, but he's bounced back again now and is staying positive and will keep fighting. Hope your Dad will do the same.

Tell him - he's got this far, so he can't give up now!

Thinking of you and sending my very best wishes.

Love
Ellie
x

Lisa

Re: CHEMOTHERAPY

Postby Lisa » Mon Jun 15, 2009 9:42 am

Hi Gill,

Was just wondering how things are going with your dad? Has he had the stent fitted, is he able to go home yet?
Not sure who your dads oncologist is but my Mom is being seen by Dr Peak who is based at the QE but she is having her treatment at Sandwell hospital. Small world isn't it?

Just to let you know I'm thinking about you and hoping your dad is doing better!
Lisa x

gillvb1
Posts: 76
Joined: Sun Sep 28, 2008 10:31 pm

Re: CHEMOTHERAPY

Postby gillvb1 » Tue Jun 16, 2009 2:15 pm

Nicki, Ellie & Lisa, Thank you for your support at this difficult time. My Dad has been in hospital for a month now but is showing signs of improvement albeit only over the past few days. A stent was partially fitted but they were unable to get it property aligned so we have been on edge today whilst a second procedure was performed. I have received news that the stent was successfully put in place in the bile duct and my Dad's drain has been removed - hurray!! Also, he no longer needs dialysis (touch wood) which is also an excellent result. A biopsy wasn't taken but the medical team are fairly certain that cancer has returned and will carry out a CT Scan in 3 months time.

Lisa, My Dad was treated at xx for a time but since his cancer was diagnosed he’s been treated at the xx. We await the day we can take him home - recovery will be steady but more comfortable for my Dad. How is you Mum getting on with her chemotherapy? Does she have to travel far to the xx or do you live locally? Gillx

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: CHEMOTHERAPY

Postby Nardobd » Tue Jun 16, 2009 6:01 pm

Gill

Glad to hear that the second procedure went well and that your Dad's now showing signs of improvement. Please let us know how he's getting on from time to time.

Nicki xx

Lisa

Re: CHEMOTHERAPY

Postby Lisa » Wed Jun 17, 2009 8:23 am

Hi Gill,

I’m glad to hear your dad is showing signs of improvement, having to stay in hospital for a month must be really hard on him (and all of you).
Hopefully he has turned a corner now and they’ll let him home soon – where I’m sure he will recover much better!
Keep us upto date and if there’s one thing I’ve learnt so far its to take one step (and day) at a time, I’m sure you know that. I can imagine it’s hard not to think about what the scan may or may not show, but for now if your dad can get home he’ll start to feel better!

My mom’s chemo is going well so far, this is only her second week, so early days, but she hasn’t been sick with it at all yet – just very tired! She is having the chemo done at Sandwell at the moment and she lives in Oldbury (close to Bearwood) so its luckily very close.

Take Care
Lisa x

gillvb1
Posts: 76
Joined: Sun Sep 28, 2008 10:31 pm

Re: CHEMOTHERAPY

Postby gillvb1 » Wed Jun 17, 2009 9:30 pm

Hi Nicki, Lisa and Ellie, what a rollercoaster. Thank you for your support - always so welcome and reassuring. Unfortunately we were given not so good news yesterday - my Dad's stent couldn't be fitted properly, contrary to what we had first been told. Because of this setback it is likely that the stent will become prone to blockage and that could be devastating for my Dad if we don't catch the symptons in time (and then I don't know how effective the treatment will be). You'll be aware that we've just been through an episode where my Dad has suffered sepsis and remains in hospital after 5 weeks of treatment so we'll have to be on our guard.

Myself, sister, brother and mother will attend a meeting at the xx Hospital on Monday to discuss the feasibility of my Dad coming home. It now seems that we have a choice which is very upsetting, I didn't ask what the alternative arrangement would be but my sister was insistent that I agree that he comes home. The problem we have is that myself and my siblings all have mortgages and bills to pay so taking time out of work in the long term would be difficult. My mum is pretty frail after a failed hip replacement operation so the future is uncertain. Social Services will carry out an assessment of my Dad's anticipated needs and hopefully we can come to agree a package of medical help for him. We are adamant we want him home but we need to know that we can cope. My Dad is still very ill and we've been told that he may or may not be around for Christmas - not knowing doesn't help. I'll be sure to keep you posted. Your messages are a huge comfort and remind me that I have people out there who understand the uncertainty we are all going through. One day at a time .... Gill xxxx