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

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PCUK Nurse Jeni
Posts: 1055
Joined: Mon Jun 14, 2010 1:30 pm

Re: Concerned husband

Postby PCUK Nurse Jeni » Mon Feb 11, 2019 4:29 pm

Hi Saxon,

I will email you.

KR,

Jeni.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Saxon
Posts: 24
Joined: Mon Jan 15, 2018 8:35 am

Re: Concerned husband

Postby Saxon » Tue Mar 26, 2019 1:02 pm

It’s been a very up and down few weeks since I last posted.

My wife finally started the parp inhibitor drug and has been on that for 4 weeks. In the meantime the pain management initially improved and then went down hill together with a loss of appetite and increased sickness. The sickness got so bad that the other week I took her to hospital where she was admitted for a potential stomach blockage. They couldn’t find anything, but after having a stomach drain in and then increasingly stronger laxatives together with steroids, they got things going enough to let her home last Thursday on a strict diet of no roughage and having foods blended.

She was also told during this stay that a recent scan has shown further progression of the secondary liver tumours. As a result of this she is now being taken off the parp inhibitor and put onto another chemo treatment – carboplatin.

Chemo should have started on Monday, but after being discharged she spent all her time in bed in pain and also she started to get very bloated – she looks like she is 7 months pregnant. She felt like she was going to burst. So took her back to hospital on the Monday where she has been re-admitted. The swelling is due to the tumours producing fluid and this being retained around her stomach.

She was also told that she couldn’t have chemo until they’d drained the fluids and her platelet levels had improved as were lower than 75. They did a blood test in the morning and this showed that the platelet levels are now below 10, so they cannot do the drain or the chemo. She has had a platelet infusion and now waiting for the platelet levels to pick up.

She is very low. The see saw of being in pain and then no pain, being sick and then constipated, the swelling and then bad news on the tumours and platelets and now being stuck in hospital has depleted her spirits.

I’m sure that there’s loads of you out there with similar and worse experiences, but it just gets hard to cope for all of us as well as my wife.

PCUK Nurse Nicola
Posts: 7
Joined: Tue Sep 04, 2018 9:40 am

Re: Concerned husband

Postby PCUK Nurse Nicola » Wed Mar 27, 2019 2:21 pm

Hi Saxon,

Its Nicci here, one of the nurses on the support line. Saxon I am so sorry to hear that your wife has been re-admitted into hospital. It must be very difficult for you to see her feeling so low in mood and struggling with all these symptoms.

Saxon I will email you directly to discuss this in more detail, I hope that’s okay.

Kind Regards

Nicci

Nicci Murphy
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Saxon
Posts: 24
Joined: Mon Jan 15, 2018 8:35 am

Re: Concerned husband

Postby Saxon » Mon Apr 08, 2019 4:33 pm

Just to let you know that my wife sadly succumbed to complications related to her pancreatic cancer on 29th March 2019. The end was quite sudden, with being admitted to hospital on the Monday and everyday there was a plan to take some action to address her ailments, but on the Friday morning, with her being uncomfortable, in pain and suffering from the other complications; we were told to think short days. She was given oxygen and pain relief and slipped away just over 4 hours later surrounded by her mother, sister, son, daughter and me (her husband).

From being diagnosed 16 months ago and being told to think months not years, she has fought valiantly and the time she had was spent doing the things she loved and being with family.

She will be greatly missed by all of us.

PCUK Nurse Jeni
Posts: 1055
Joined: Mon Jun 14, 2010 1:30 pm

Re: Concerned husband

Postby PCUK Nurse Jeni » Tue Apr 09, 2019 12:18 pm

Dear Saxon,

We are so sorry to hear of this news about your wife. We are all sending our condolences and best wishes at this sad time. It sounds as though it was quite sudden - I hope that you and the family were well supported. It is good that your wife was surrounded by all those who meant so much to her.

Thank you also Saxon for being a regular part of the forum family, and for your support to others on here.

Thinking of you and the family.

Jeni & all the nurses.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

kate2101
Posts: 81
Joined: Fri Jun 15, 2018 4:20 pm

Re: Concerned husband

Postby kate2101 » Tue Apr 09, 2019 1:04 pm

Devasted to hear your sad news, thinking of you and your family at this horrible time. X

sandraW
Posts: 1036
Joined: Thu Oct 31, 2013 5:38 pm

Re: Concerned husband

Postby sandraW » Wed Apr 10, 2019 10:49 am

Saxon, I am so very very sorry to hear of the loss of your lovely wife. This disease is truly insidious it just overwhelms the body, no matter how hard the fight. I am glad you were all able to be with her, when she passed she would have been aware of all your love I am sure. wishing you love and strength to cope with the next stage of this journey, please take care love sandrax

RLF
Posts: 226
Joined: Tue Nov 19, 2013 9:30 am

Re: Concerned husband

Postby RLF » Fri Apr 12, 2019 8:45 am

I’m so sorry to hear of your loss, but yes she did fight valiantly and managed to prove them wrong which is always the best thing a person can do. I hope you find some peace and strength in the next few days/weeks knowing you did everything you could and I’m sure she was just grateful having you by her side through all of this.

Try and take some time for yourself now, it will be hard and strange to not have to focus your energy into someone else’s wellbeing, so try and focus on your own.

Rob
X