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Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Newly Identified Tumours One Year on from Whipple

Postby Cathy » Fri Jun 13, 2014 6:28 pm

He Anne and Amanda

So pleased to hear that both your husbands seem to be doing well and seem to have a lot in common - that can be a very supportive thing.

Take care

Cathy xx

Amanda J
Posts: 13
Joined: Thu Sep 12, 2013 3:59 pm

Re: Newly Identified Tumours One Year on from Whipple

Postby Amanda J » Thu Jul 24, 2014 12:32 am

I can not comprehend the devastation this thing is causing to our beautiful little family. David has struggled since the surgery in May but thankfully we did mange to go to our Nephews wedding in Cyprus at the beginning of July. Our daughters were Flowergirls, so it was really important that we made the holiday. Our GP, Macmillan nurses and Marie Curie Hospice were amazing in helping to get us there. The taxi was arriving to take us to the airport at 11.15 and the doctors appointment was at 9.10 to confirm he was fit to fly. We had a lovely time but he did struggle a little on some days. He seems to have a good day where he is up and about and then a bad day when he doesn’t have the energy to be out of bed for long and them his back really hurts. Does anyone have any experience of the upper back pain that can recommend anything to help? The out of hours doctor has just been as David is struggling with abdominal pain again. He said it feels like trapped wind. He has not stopped vomiting since yesterday morning. He has a high temp and fast pulse. They wanted to blue light him to hospital but we managed to convince the doctor to give him some medication and I will monitor him through the night. The plan going forward is to get him strong enough to have the Chemotherapy but David is not keen on more treatment. He has had 5 abdominal surgeries in 2 years and says he is sick of feeling sick now and just wants to have some rest from the pain. We have an appointment with the radiotherapy team to see if the Cyber Knife is an option. Steve, I see you on here and so wish my husband had the want/energy to be part of this forum as I am sure it would help him in accepting the next proposed treatment for him. I do feed back the positives but he has mentally blocked it out. He had 2 sessions of it last year prior to the Whipple and did not tolerate if very well both physically and mentally. We can’t even use the word as it makes him feel agitated. We are planning to take out daughters to Disneyland Paris in the next few so he has that to work towards. It really is the hardest thing to watch someone you love so dearly in so much pain and unable to stop it apart from helping with pillows and position. Well tomorrow is a new day and it’s been 4 hours now since the last sickness so fingers crossed its just a bug he has picked up and all will be fine again.

Wishing everyone all the very best.

Love Amanda. x

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Newly Identified Tumours One Year on from Whipple

Postby Slewis7313 » Thu Jul 24, 2014 5:14 am

It is truly relentless Amanda. It's great to see that David is fighting and that family trips are something to focus on as things hopefully improve (albeit slowly). Now things have settled down with Folfirinox, I am coping really well with the treatment. I am however lucky that to date I have never had any serious issues with pain, other than in the early days shortly after diagnosis.

This place has been such a support and I am not sure how I would have managed without it. We obviously meet many cancer sufferers at the Chemo Unit and Maggies, most of whom compare notes with fellow sufferers, but of course Pancreatic Cancer is so rare, the only sharing I can really do is here. It certainly helps me (and my family).

I hope all goes well with the Disney trip (brings back many happy memories of when we visited with our girls when they were small).

Please take care (both of you).

Steve
X

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Newly Identified Tumours One Year on from Whipple

Postby jay » Thu Jul 24, 2014 10:01 am

Hi Amanda, sending you a massive, massive hug. My husband had a whipples Oct 2013 and on Tuesday we were told it had now spread to liver and possibly in the site of the original pancreas. Hes waiting to start folfirinox ! He too has severe back pain during the night. It starts at about 11 pm and lasts until 3am. This started Saturday. His onocologist examined his back and said you can get back pain when the cancer has spread! Hes going to phone the nurses on this site later.Hope you all have a good day today.
love jayne

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Newly Identified Tumours One Year on from Whipple

Postby nikkis » Thu Jul 24, 2014 11:48 am

Hi Amanda,
So sorry to hear David is feeling so rough. My advice, from our experience, is to get him to have whatever it takes to get the pain under control so he can start the chemo which should relieve the symptoms and help him feel better. Paul has found gem and abraxane (not always easy to get on the NHS) easier to tolerate than folfirinox, but I think the feeling is that folfirinox hits it harder. Paul still has regular morphine for the pain, and I don't think you can underestimate the ongoing strain that the surgery can put on the gut and then the cancer and chemo make everything so much worse.

Our local hospice admitted Paul for a few weeks to get the pain and sickness sorted, but he was free to come and go (including for his chemo) while here was there, so as you have those links it might be worth considering. Paul has an electric heat pad that has really helped in the past with back pain, and was also prescribed amitriptyline, which may or may not have helped. I really hope you manage to have a successful trip away with your girls.

Jayne- I am so very sorry to hear your news. This thing really stinks!

Paul had to stay in overnight on Monday because of his shingles, and the pain consultant, who has not seen him since October popped in to see him. He said that Paul was a very sick man when he saw him last, and could not believe he looked so well. He still has cancer, he still has some pain, we do not know what the future holds, but for now our quality of life is so much better. So do not give up hope ladies that things can get better.

Lots of love,
Nikki

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

Re: Newly Identified Tumours One Year on from Whipple

Postby sandraW » Thu Jul 24, 2014 1:08 pm

Hi Amanda, so sorry to hear David is struggling, this disease is so wicked, and relentless. My husband, Trevor's, tumour markers are starting to rise again so we know he will be back on treatment soon, he had 6 5FU, and then 6 folfirinox, his last treatment was only in April, so he won't have had much of a break, but we did manage a holiday to Gran Canaria.
We are trying to build some memories for our grandchildren, and are taking our 2 granddaughters to Disney too, in 2 weeks time.
I do hope David gets his pain sorted it must be truly terrible watching someone you love suffer in pain, we are so lucky because, like Steve Trevor is pain free at the moment, and feels well. Lets hope that he can get it under control, as Nicky's Paul did and then I am sure his fighting spirit will return. take care sandrax

Jayne, Trevor had his surgery in September 2013, and 2 small tumours found in his liver in January, I think our oncologist suspects it is also back in the pancreatic bed too but there is nothing on the scan. He told us if the tumour markers rise Trevor will be straight back on treatment, they are up to 846 from 220 6 weeks previously, so that's where we are headed. I hope you get the pain sorted and get on treatment soon and that he feels better, take care sandrax

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Newly Identified Tumours One Year on from Whipple

Postby J_T » Thu Jul 24, 2014 8:58 pm

Hi Amanda, just wanted to my support, small thought that is. I fully understand the stresses and strains this horrible disease puts on everyone and I can well understand David's feelings, he has really been through it. Ray survived only 7 months from diagnosis but later in the process he kept saying 'I hope I feel better tomorrow', it was heartbreaking because I knew it was unlikely but of course didn't say so. Apart from the awful physical side effects, the mental and emotional side is just as great and the thought of yet more treatment must be so disheartening and it must be SO hard for patients to keep their spirits up through the weeks and months of treatment. I am sure and your family are a great support to David. I'm really hoping David's pain gets under control and then he can focus on the next step, whatever that is.

You are all amazing people and its just so unfair.
Wishing you all strength and love.

Julia x

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Newly Identified Tumours One Year on from Whipple

Postby jay » Fri Jul 25, 2014 9:28 am

Hi Amanda, hope things have improved. Husband tried tramadol last night for the back pain and it helped. He had them left over from the op. He did check he could take them yesterday. If its a nerve getting trapped opium based pain killers wont work. The nurses on the site are amazing. He is now getting pain in his stomach after eating at night if this doesn't settle im contacting his surgeon for advice, as your paul had a blockage.
Take care Jayne x

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Newly Identified Tumours One Year on from Whipple

Postby jay » Fri Jul 25, 2014 9:30 am

sorry Amanda, your david ! x

PCUK Nurse Jeni
Posts: 1063
Joined: Mon Jun 14, 2010 1:30 pm

Re: Newly Identified Tumours One Year on from Whipple

Postby PCUK Nurse Jeni » Fri Jul 25, 2014 5:04 pm

Hi Amanda,

I would agree with Nikki - it may be the best way to get this pain under control is to be admitted, preferably to a local hospice. The reason for this is they can monitor it and change things quicker than if out in the community, where its a bit more of a delay. Whereas, at the hospice, they have specialist staff who can treat all symptoms, including sickness, and titrate pain relief in a more controlled environment.

Also, if it is not responding to opiates (much of the nerve related pain in PC does not), then they can instigate these types of pain killers quicker also.

If you can give this some consideration, it would be a way forward. Just to note, hospices are routinely used in oncology for symptom control, and it does not mean "no active treatment", as this is a common misconception by some people.

Kind regards,

Jeni, Support Team.

EmmaR
Posts: 197
Joined: Fri Sep 20, 2013 11:06 pm

Re: Newly Identified Tumours One Year on from Whipple

Postby EmmaR » Fri Jul 25, 2014 11:11 pm

Hello Amanda ,
I found this forum the only true support I was getting during the short time my hubby was unwell ( 8 weeks from diagnose to his passing ) but don't want to give you negative thoughts if we don't have hope what do we have ! My Jon had back pain our home treatments included rubbing Vick in his back ,wrapping his pure wool scarf around him ( it was his scarf for golf worn during winter rounds of golf ) hot water bottles, my man was one who tried everything to avoid calling the doc out lol so just do what ever makes David comfortable ,this is a truly awful disease but who knows what treatments could be around the corner ,my hubby would never have posted on this forum but during some trying moments he would say ask your friends on the forum what they would do ,and they would always give me very good advice , so as one of our lovely forum members always says keep on keeping on .
Sending you big cyber hugs and xx
Emma x

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Newly Identified Tumours One Year on from Whipple

Postby jay » Sun Jul 27, 2014 9:46 am

Hi Amanda,
Was just wondering how David was today ?
love jayne

Amanda J
Posts: 13
Joined: Thu Sep 12, 2013 3:59 pm

Re: Newly Identified Tumours One Year on from Whipple

Postby Amanda J » Wed Feb 25, 2015 12:18 am

After a long and brave battle with Pancreatic Cancer my wonderful husband sadly passed away on 2nd January 2015. At the tender age of 37 he passed away peacefully at home with his family. He was a wonderful person who I had the privilege of spending 11 wonderful years with and we had two beautiful little girls. He has battled through six operations since he was diagnosed in June 2012, After two attempted Whipples in the UK he had his tumour removed in Heidelberg in May 2013 which gave us an extra year together as a family to make some very special memories which afforded us the time take our little girls to Disneyland Paris. When you are given the devastating news you never think it will happen and I truly believed, even when David was really poorly over Christmas that it would all be ok and someone would help us in this crazy situation. I sat on the bed next to him watching him sleep and I would have sat there forever just watching him breath. We had a wonderful team looking after David which ensured he was in no pain. I can not thank Macmillan, Marie Curie and our wonderful GP and district nurses enough for the help and support we had throughout his illness. We did manage to have a lovely Christmas Day with our little girls which I am so thankful for and I truly believe that David’s sheer strength and determination to go through Christmas and New Year was just the way he wanted it. Frank Sinatra was one of his favourite musicians and he certainly did it ‘His Way’ amazing doctors and nurses throughout. His celebration of life service took place on 13th January and was a perfectly fitting tribute to a wonderful inspirational young man. Over 600 people attended with every part of his life represented from the midwife that delivered him when he was born to the nurses that cared for him at the end and all of his friends, teachers and colleagues in between. He touched everyone that met him with his unique personality. We are completely devastated by our loss and will never come to terms with what has happened but we have comfort that David is now at peace. We live in a little village and were able to have the burial at the local church which is next to our daughter’s school so we are able to go and visit ‘Daddy’s special place’ everyday. Our little girls who are just 6 and 4 are dealing with it very well. They understand that Daddy has gone to Heaven and we can’t see or hear him but he is always with us and we can talk to him at anytime. I asked our youngest daughter if she would like help with a jigsaw she was doing and she replied “no it’s fine Mommy, Daddy is helping me”. We have lots of videos, pictures and memories that will last forever. He was a wonderful Husband, Daddy, Son, Brother and friend who will be sadly missed.

I would like to say thank you to everyone who offered advice and support on the forum and although I didn’t manage to come on very often we did get some great advice and tips from people at various stages. I wish you all the very very best and you continue to fight this because there are success stories and people do beat it and I truly hope it’s you.

Thank you,

With much love

Amanda.x

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: Newly Identified Tumours One Year on from Whipple

Postby MSH » Wed Feb 25, 2015 12:55 am

So sorry to read your post Amanda. With over 600 people there he must have been a very special person to all those around him. Yet another taken far too young.

My condolences.

Mark

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Newly Identified Tumours One Year on from Whipple

Postby nikkis » Wed Feb 25, 2015 7:06 am

Amanda,
I am so sorry to hear David has lost his incredibly brave fight. How wonderful though that your little girls will have all those lovely memories of their exceptionally brave Daddy,

Take care,
Nikki