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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Battling to get treament

Postby toodotty » Mon Jun 11, 2018 4:31 pm

I am 55 years old, mother of two almost adult boys and wife to a devastated husband. I visited my GP in early March with annoying indigestion and weight loss, and despite numerous blood tests, 3 ultrasound scans and 8 hours in A&E, (who diagnosed constipation), nothing was found to be wrong. I paid privately to see a specialist and for a CT scan and was diagnosed with pancreatic cancer on the eve of Good Friday. By the following Tuesday, it was confirmed as having spread with 3 small lesions in the liver and a shadow on the peritoneum, so Stage 4 PC.

On the 3rd of April, to try and cover all options, my darling GP referred me urgently to two specialist cancer centres, the general view being that the sooner treatment started the longer my chance of survival would be. Little did this help, due to the ineptitude and total lack of urgency, days slipped into weeks and then started rolling into months. Nothing could happen until I had an endoscopy (one centre) and an MRI scan (another centre) and the waiting list for these was 2/3 weeks. Again we paid privately, and my husband drove the disks to each hospital and hand delivered them. For the one hospital we didn't get onto the MDT meeting for a further 3 weeks, then the oncologist was on holiday until the 10th May, the other hospital we got onto the MDT meeting within a week but then disappeared off the list and were not scheduled to see the Oncologist. Every day was spent on the phone, chasing, harrying, leaving messages and nobody ringing back. Even my GP was calling trying to figure out what was happening. I felt as though I was being treated as if I had an in-growing toenail, not a life limiting illness and being told by various professionals that the NICE guidelines say that you should start treatment within 60 days and this won't make any difference to the status of the cancer, is complete nonsense

During this time, my cancer started to get much worse and the pain levels were such that I was unable to sleep and would spend the nights pacing around downstairs as though in labour. Still no appointments, only the offer of stronger sedatives. The stress and anguish of the lack of progress, lack of urgency and general acceptance that this was in any way acceptable was almost too much to bear especially for my husband.

Eventually I got to see an Oncologist on the 8th May, and after discussion it was agreed that I would be started on chemotherapy, but was told that this only had a 30% chance of success. Personally given all the other odds I have read up about this seemed to be quite positive. I was then contacted about my treatment dates, and they were still another 3 weeks away, taking me to the end of May, 2 months after diagnosis. We were devastated and given how quickly I was going down hill I wondered if I would even still be alive by then.

I wrote to both my MP and the head of the NHS Trust about the shambolic, chaotic and shocking lack of urgency with which my case was being treated. The MP wrote a lovely letter back to me and has forwarded my concerns onto Jeremy Hunt. The NHS trust contacted me within 3 days, and lo and I suddenly scheduled for my PICC line and chemo to start on the 15th May, which it duly did, They then asked if I would withdraw my complaint, hah not a chance so I am still waiting to see what excuses they come up with.

However, by this stage I had lost nearly 2 stone in weight, was in a lot of pain and developed jaundice. 1st round of chemo made a big difference to the pain, but the jaundice became very severe. My 2nd round of chemo was reduced whilst they organised an urgent endoscopy to have a stent fitted, again a two week wait for this which has now delayed my 3 round of chemo.

Whilst checking up on the endoscopy procedure, I realised that the team needed to understand that I had a nickel allergy and that I would need a special stent if they were planning to use a metal stent. My husband spent a week trying to get a message to someone but to no avail. When I saw the consultant undertaking the procedure and advised him of my concerns, he knew nothing about nickel allergies and had to go and research whether they could use the titanium stents, and no they could not. After a really hideous experience, a plastic stent was fitted and despite an overnight stay in hospital, I left the following morning in a wheelchair. I was also advised that the stent would not drain as well as a metal one and would need replacing every 3 months.

My chemo for this week has been delayed whilst we see if my bilirubin levels have dropped sufficiently, glad to say that I feel much better and most of the yellow has gone. I managed to get a look at my medical notes whilst in hospital, and was alarmed to see that the priority for my treatment was classed as "routine", and that the base-line scan taken 6 weeks after my initial scan shows many more polyps on my peritoneum and possible spread now to my lungs. Talk about not being given a fighting chance. :cry:

This is a tough enough disease to fight, and due to the laxity of the commencement of my treatment, I am having to endure more risky and invasive procedures that may have other wise been necessary.

But, I have not given up HOPE, I have too much to live for and I will fight this cancer and the NHS all of the way. I have had so much support from my friends, family and colleagues who are rallying around me. I have also met some truly lovely professionals in the hospital, but unfortunately the organisation does not seem capable of joining up the dots.

Fingers crossed that the consultant gives the go ahead for chemo on Friday, so that I can nail this disease before it spreads even further.


PCUK Nurse Rachel R
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Joined: Thu Jan 25, 2018 10:52 am

Re: Battling to get treament

Postby PCUK Nurse Rachel R » Tue Jun 12, 2018 1:05 pm

Dear toodotty

I wanted to say a big welcome you to the forum, particularly from the Nursing team here. I do hope that you will find the forum family here a great source of support and comfort as so many do.

Thank you for sharing your story so far. I am extremely sorry to hear of your diagnosis and also your very difficult battle at each stage to navigate through the NHS system and ultimately start treatment. I applaud your perseverance and strength and I am sure this will spare others on.

I do hope your bilirubin levels continue to reduce enabling chemotherapy to go ahead later this week.

If you do ever wish to talk to us it would be a pleasure to speak to you, the support line contact details are below.

With kindest wishes

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

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Joined: Sat Jun 09, 2018 3:17 pm

Re: Battling to get treament

Postby toodotty » Mon Jun 18, 2018 9:48 am

Good morning Rachel,
Thank you for your reply, I would have responded sooner but couldn't access the forum. I had my review with the Oncologist last Thursday who was reluctant to allow the next treatment to go ahead but after reviewing my bilirubin levels with him, which were the best they have been for sometime, he agreed for me to have Round 3 on Friday. This has gone well, far less side affects that the last time and at last I am beginning to see the start of an appetite again.

The actual process itself was shambolic, clearly my records are not being kept up to date, I was prescribed drugs I am allergic to and nobody seemed to know what I needed and at which dose. Thank goodness I still am lucid and can speak English.

To all cancer sufferers out there, do not be a lamb taken to slaughter, you need to be a lion and stand up for your rights. If enough of us roar then they will take note. :x

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

Re: Battling to get treament

Postby Proud Wife » Mon Jun 18, 2018 5:53 pm

Hello Toodotty

Welcome to the forum although I'm only sorry you have the need to be here. None of us want to of course but the support you will receive here is second to none.

I don't normally post anymore having lost my hubby to PC 2 years and 6 days ago. I just find the number of people who continue to be diagnosed far too distressing. However, I popped on here as I do occasionally and could not help but be moved by your story. It's an absolute disgrace and I am so sorry you've been treated this way.

It's not for me to knock the NHS, I'm not really familiar with how the system works as my hubby was lucky enough to have private medical insurance at the time of diagnosis and was therefore treated privately. Although we didn't have to wait for anything and scans and treatment etc carried out immediately, I believe he was still treated as though he had dead man walking syndrome, which is just so typical when it comes to PC.

I wish you all the very best for your continued treatment. Please keep us posted and and rest assured, I am roaring with you.

Take care
Proud Wife. xx

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Joined: Sat Mar 12, 2016 9:49 am

Re: Battling to get treament

Postby Dandygal76 » Mon Jun 18, 2018 7:05 pm

I am also not on here much... the same as pw. However.. dealing with nhs and systems is my skill if you look at my thread for dad.. I can help you advocate for yourself quite effectively. Ask the nurses for my e.mail address if you would like sone help. pw mentioned there were people struggling and it was quiet on here. You are never alone. X .

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Joined: Sat Jun 09, 2018 3:17 pm

Re: Battling to get treament

Postby toodotty » Sun Jun 24, 2018 10:17 pm

Hi Proud Wife and Dandygal76,
Thank you for responding to my post. I totally agree with the being treated as "dead man walking syndrome", this is very much how I feel about my treatment, and something I want to challenge. My view is that we are all "dead men walking", it is part of a condition called mortality and something we all have to face. I just don't want to face it today and I believe we are all entitled to get adequate treatment to help extend our life as much as possible.
Gearing up for Round 4 this week, I have much more energy, have been gardening and even managed 25 minutes on the exercise bike today and felt fine. Planning to challenge the Oncologist on Thursday as to what happens at the end of my 6 courses of treatment and to explore other options that may be available outside of the NHS. Unfortunately my private medical cover was lost when my husband was made redundant in February, typical I had it for 20 years and never needed it.
Dandygal76, I would like to take you up on your offer of assistance, I am not planning to sue the NHS but press for fairer treatment for PC sufferers.

Best wishes,