A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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Mags
Posts: 6
Joined: Thu Aug 03, 2017 11:34 pm

What lies ahead

Postby Mags » Fri Aug 11, 2017 10:45 pm

Hi everyone

Im fairly new here,been looking around for the last few weeks just reading other peoples stories and wondering what lies ahead for me.

In April 2014 my Husband has a triple bypass,in the July this failed and he had another heart attack the scan that was done showed a small mass on his Lung which was diagnosed as small cell cancer for which he had 20 sessions of Radiotherapy which reduced the size of the tumour but we were told it was inoperable and it was just a matter of time.

He finished his treatment in October 14 and we settled down to wait and see what happened. What happened was that in November 14 he had a Stroke[a large bleed which he wasn't expected to survive] but he did because he was always a fighter. Physically he was not to bad but he had a lot of memory loss. He forgot how to read and write,that he lost his Mum 10 years earlier and could not remember any of his friends,Im sure you get the picture.

He was in Hospital for 6 weeks and another 6 in Nursing home to recover,there was little improvement until he finaly came home in February of 15,even then progress was slow and a lot of things didn't come back to him. His biggest was problem was that he was unable to let me out of his sight,I gave up my job and became his full time carer 24/7. The odd times that I did get a break he would be phoning me wanting to know when I was coming home. Again we settled down to wait and see what happened next.

In December 15 a routine scan showed that the tumour had started to grow again and had spread to his Liver,we knew we were on the last leg of the journey.

April 16 I started having problems with my stomach but an ultrasound I had came back as no further action required so I just put things on hold and concentrated on caring for Hughie as he went down hill. A routine blood test also in April showed me as having Diabetes which was controlled with Metphormin. Sadly in June 16 Hughie lost the battle.

It was a difficult time,we had been together for 33 years had no children and it was like I had lost my right arm. Christmas that year I started having problems again with my stomach and February of this year decided to go back to GP. He fast tracked me for an Endoscopy and a Colonoscopy and I was diagnosed with UlceratedColitis. Because of the severe Diarrhoea I was prescribed Steroids and Pentasa.After seeing consultant twice in 6 weeks he was concerned about the weight I was losing [2-3lbs a week] even though I was on a high dose of steroids and he fast tracked me for a body scan which showed a mass on my Pancreas. Another Endoscopy with biopsies shows that I now have an Adenocarsanoma [think that's right] tumour.

As yet I have not seen Oncologist as he is on holiday [appointment for 21st] so I really have no idea about what my next step will be. My support nurse has been brilliant and has spent a lot of time on phone with me,hoping to meet up with her next week as she is on holiday as well,I picked the wrong month to be diagnosed LOL. She has told me that its almost certain I will be having Chemo and that there are two types that I could have but that of course will be down to Oncologist when I see him.

Right now I feel like I just don't know which way to turn,some days I feel like im really up for the fight then others im not so sure. When Hughie was diagnosed with his cancer it was like I really didn't have time to think about these thing it was just about supporting him and trying to keep him strong but now the shoe is in the other foot and it feels so different. Im not sure that after the last three years I have any fight left me in.

Sorry for going on so much but its as if once I got started I couldn't stop. Promise any future posts will not be this long.

Thanks for listening
Mags

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: What lies ahead

Postby Wife&Mum » Sat Aug 12, 2017 11:49 am

Dear Mags

Welcome to the forum but I'm so sorry that you find yourself here. I'm sure you will find it a very caring and supportive place.

I can't really help at all with your question of what lies ahead, as everyone is so different and it will depend on your own disease profile and how you respond to any treatments. But I would caution not placing too much emphasis on the statistics for pc as they are out of date as soon as they are published and survival rates have improved recently due to better treatments.

If your cancer hasn't spread beyond the pancreas you may be a candidate for surgical removal of the tumour. This is something to discuss with your oncologist. My husband became operable after a course of chemo followed by chemo radiotherapy and is alive and cancer free over 2 years on from his diagnosis.

If the cancer has spread there are still options, usually chemotherapy which can be aggressive or not, depending on your medical situation and your preferences.

My heart goes out to you Mags as you have had such a hard time recently with the loss of your husband. If I were you I would grab whatever support is offered and this forum is a great starting point. Do take advantage of the PCUK help line for any medical queries. For emotional support if this forum is quiet there's also a pancreatic cancer group within the Macmillan forum - they seem to be pretty active at the moment.

And you never have to apologise for long posts here - vent as much as you want if it helps. Everyone here will understand.

Wishing you lots of luck for your first appointment with the oncologist. As you'll know only too well from supporting your husband, waiting for important appointments is so difficult and so often it feels easier once you have an action plan.

Love
W&M xx

stmfst
Posts: 10
Joined: Wed May 06, 2015 3:59 pm

Re: What lies ahead

Postby stmfst » Sat Aug 12, 2017 12:01 pm

Oh Mags, I am so sorry that you are going through this on your own. As someone who lost my husband to pancreatic cancer in August 16, I know how exhausting it is to care for someone who is terminally ill. The grieving process after you have lost someone you love is hard enough to cope with, never mind being told that you are ill. I hope that when you see the oncologist on Monday week that you get a plan and am glad that you have felt supported so far by the nurse. As W& M says, the nurses on the helpline here are a great source of well informed advice and helped me to ask the right questions when we were seeing the oncologist and explained anything that was unclear. There is nothing I can say that will help, except do try and look after yourself. With very best wishes. Mary

Marmalade
Posts: 58
Joined: Thu Jul 06, 2017 4:29 pm

Re: What lies ahead

Postby Marmalade » Sat Aug 12, 2017 11:03 pm

Dear Mags,

You have made the first important step in finding your way by posting on here, this forum has the potential to be your personal place where you can bring your thoughts and feelings privately and safely with the guarantee that those who post and watch completely understand.

Sadly no one can tell you what your journey will be like but the process at this point will be to find out exactly where the tumour is and what if any other organs and blood vessels are involved. From that point your team will come up with a proposed treatment plan and discuss it with you but I expect your nurse has told you this and that you already know quite a bit of the process because you cared for your husband.

The PC diagnosis is always a terrible shock, the prognosis can be grim but a few do well even when the cancer is very advanced with just low level palliative chemo, others have chemo and are then able to have surgery and although a major procedure which takes many months to recover from, it can give years of good quality life. Sometimes the options are limited or you may not want treatment but even then you will find hope and comfort.

I am sure you find it hard not to worry about the future. We tend not think about the details of how or where our lives will reach their conclusion and no one would blame you for being anxious or feeling low given the exhausting and harrowing time you have had. All I will say is there is hope, people do achieve good quality of life however long that life may be, there are many good experiences of both treatment and, sometimes of really fantastic palliative and end of life care on this forum. In truth, none of us know the day nor the hour, we have to take each day as it comes and make the most of them.

I am so very sorry you are in this position but glad you have made the step of sharing and hope that this helps bring you peace and comfort.

Marmalade x

Proud Wife
Posts: 733
Joined: Sun Jan 17, 2016 9:28 am

Re: What lies ahead

Postby Proud Wife » Sun Aug 13, 2017 11:02 am

Hello Mags

Welcome to this wonderful forum with it's equally wonderful forum family members.

There's nothing I can add that's not been covered above but I just wanted to you to know my heart goes out to you after everything you've been through. Life can be so unfair. Never, ever apologise for long posts, I found this forum an excellent way just to get things off my chest when my hubby was dying.

Thinking of you.

Lots of love and best wishes
PW xx

Mags
Posts: 6
Joined: Thu Aug 03, 2017 11:34 pm

Re: What lies ahead

Postby Mags » Mon Aug 14, 2017 8:53 pm

Hi everyone

Thank you for replies its good to know that there is support out there for this disease,I Had support when Hughie was poorly but PC is not something Ive had to deal with before,and now knowing that the only way to beat it completely is surgery can be a bit scarey.

My support nurse has told me that the tumour is only in Pancreas with no spread but its non operable as it is growing around the surrounding blood vessels,she also said that it looks like the drains are not blocked, but I suppose I will have to wait till I see the Oncologist to get the full picture.

The last few days have been rough with tiredness and no appetite even though I should be trying to eat sometimes its just impossible. Constipation is a big problem with me due to the low dose of morphine Im on.My GP has prescribed Laxido but this just seems to bloat me then I don't want to eat after taking it, I am going to try to get an appointment to see her tomorrow and hopefully she will give me something else.

Another thing that worries is if I get a Flair from the Colitis while having treatment will it be put on hold while things settle down which can sometimes take weeks or months and the last thing I want is treatment being delayed.

W&M so pleased that your husband seems to be to be doing well and I hope he continues to improve.

Mary and PW sorry that your husbands did not beat PC,I know you must miss them terribly,losing someone you love is never easy and can take a long time to come to terms with. I would do anything to my Hughie back.

Thanks again for listening

Mags

AndAde
Posts: 29
Joined: Thu May 18, 2017 8:51 pm

Re: What lies ahead

Postby AndAde » Tue Aug 15, 2017 12:58 pm

Oh Mags, you are really going through it, emotionally and physically. My heart goes out to you.

When Adrian was on oramorph he became constipated, he was prescribed Laxido, 2 a day to start off with.....he found them very effective.

It must be so difficult when you know you should be eating, but are struggling to get anything down.

Good Luck with your appointment xx

PCUK Nurse Jeni
Posts: 1019
Joined: Mon Jun 14, 2010 1:30 pm

Re: What lies ahead

Postby PCUK Nurse Jeni » Wed Aug 16, 2017 10:32 am

Hello Mags,

So sorry to hear that things are a bit rough for you at the moment.

Mags, are you taking pancreatic enzymes to help your digestion? Such as Creon?
It could be that the bloating and colitis type symptoms are related to this?

Please feel free to drop us a line.

Details in signature.

Kind regards,

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

Mags
Posts: 6
Joined: Thu Aug 03, 2017 11:34 pm

Re: What lies ahead

Postby Mags » Mon Sep 18, 2017 9:00 pm

Hi everyone,not posted lately had a lot of appointments with Doctors,Consultants and Nurses and the list goes on as Im sure you can imagine.

I had my Hickman line put in on 13th and my 1st hit of chemo [folfironox] on 14th with the pump removed on 16th.

Fingers crossed at the moment Im not having a lot of side effects,my biggest problems seems to be tiredness and constipation, at the moment neither are causing me to much of a problem,I just need to go to the toilet which is obviously uncomfortable
Im open to suggestions.

My weight is still dropping though I don't think its as bad as it was,but I am still not able to eat properly.

Thanks for listening,will keep you updated

Mags

Marmalade
Posts: 58
Joined: Thu Jul 06, 2017 4:29 pm

Re: What lies ahead

Postby Marmalade » Fri Dec 01, 2017 11:33 am

Dear Mags,

Was just wondering how things were going with you?

Constipation is very uncomfortable. My doctor daughter suggested the old fashioned California Syrup of Figs for my husband as it does not use anything to make your stomach cramp unlike some laxatives. Also, the GP recommended children's suppositories, they are gentler than the adult ones.

Marmalade x