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toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Battling to get treament

Postby toodotty » Mon Jun 11, 2018 5:31 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.

toodotty

PCUK Nurse Rachel R
Posts: 28
Joined: Thu Jan 25, 2018 10:52 am

Re: Battling to get treament

Postby PCUK Nurse Rachel R » Tue Jun 12, 2018 2:05 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

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

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Battling to get treament

Postby toodotty » Mon Jun 18, 2018 10:48 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
Posts: 733
Joined: Sun Jan 17, 2016 9:28 am

Re: Battling to get treament

Postby Proud Wife » Mon Jun 18, 2018 6:53 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

Dandygal76
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: Battling to get treament

Postby Dandygal76 » Mon Jun 18, 2018 8:05 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 .

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Battling to get treament

Postby toodotty » Sun Jun 24, 2018 11:17 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,

toodotty,

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Battling to get treament

Postby toodotty » Thu Jun 28, 2018 9:08 pm

Hi everyone,
I have had a really good week this week, treatment is clearly making a big difference to me. I have gained 2kg in weight this week, and completed 35 miles on my exercise bike in 5 days, doing 10 miles yesterday and today.
Went in to see Oncologist today, feeling very positive but Dr Doom was as downbeat as ever. I can go ahead with round 4 of Folfirinox tomorrow ("of course there will be a build up of toxicity in your body so there will be a point when you can't take it any more" quote Dr Doom). All bloods are fine and I am hopefully of going through to round 6 as planned. I have questioned Dr Doom about other treatments such as Nanoknife and Heidelberg and he was quite scathing, however he has agreed to support me if I decide to go down this route. I have again repeated that I am not expecting a cure, and I will fight for extra time but more than anything I (we all) need hope.
My cancer nurse was with me in the session and she was much more positive, saying how fantastic I was looking and just how much more lively and upbeat than the last time. She has also booked herself to take to chemo tomorrow to ensure that they get me started straight away and that I am not left waiting on the ward for 5 hours before starting treatment.
I do have the possibility of being included on the Polo clinical trial (assuming I have the correct gene mutation), so that it also something else I will need to consider.
Meanwhile, enjoy the good days and keep on smiling,

Toodotty

kate2101
Posts: 64
Joined: Fri Jun 15, 2018 4:20 pm

Re: Battling to get treament

Postby kate2101 » Fri Jun 29, 2018 7:43 am

Hi,

I’ve just started on this very unexpected and horrendous journey. Diagnosed a couple of weeks ago with tumour in body of pancreas and multiples in liver. Just 60, husband, three just grown up children, fit as a fiddle and loads of plans, gutted! I’m meeting with oncologist next week and hopefully starting the Folfirinox regime.

Very sad to read your shambolic treatment at the beginning, but your attitude is admirable and so glad you are feeling so much better. Like you, I’m trying to be positive, read just positive stories and not give in to it. Agree that the ‘dead man walking’ attitude is all to common, we’re alive and receiving treatment, advances are being made all the time and we need hope not doom!

Be interested to hear any updates if you go down the Heidelberg route, my family have been looking at this.....they are understandably exploring every option, they are brilliant and I want to be here with them as long as possible.

Keep up that positive mental attitude, it’s a great help to others too to read your story. :)

PCUK Nurse Jeni
Posts: 1021
Joined: Mon Jun 14, 2010 1:30 pm

Re: Battling to get treament

Postby PCUK Nurse Jeni » Fri Jun 29, 2018 11:21 am

Hello Kate2101,

Thank you for your post, and welcome to the forums.

I am so sorry to hear that you have recently been diagnosed with pancreatic cancer - it is such a difficult diagnosis especially as you have been fit and had been enjoying making plans for your future.

It is a common theme that we encounter when it comes to those diagnosed with pancreatic cancer - they do want hope, and a positive attitude. Hope is very important.

Its good to hear that you have an oncology appointment next week, and I hope that this goes well, and that your chemo starts quickly.

In the meantime, please do not hesitate to contact us should you need to.

Kind regards,

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

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Battling to get treament

Postby toodotty » Fri Jun 29, 2018 11:58 pm

Hi Kate2101,
I am so sorry to hear about your diagnosis, and feel both for you and your family. I must admit that I have not yet told my sons the seriousness of the situation, I believe that there is plenty of time to mourn and it is not now. I am trying to get everyone to carry on with their lives as normal, as much as possible, but it is proving quite difficult. I have however, persuaded my 86 year old mother to take a weeks holiday as I am not planning on going anywhere soon. My husband is still the hardest hit, and I keep telling him to remember the good times, we have been together for 38 years and I have told him that I don't wish to finish my days married to a grumpy old man! He is learning to cope but I do have to keep an eye on him.

You will be feeling full of odd thoughts at the moment, my most surreal moment was when I was planting some early potatoes and having the sudden thought that they would probably live longer than me! How wrong, I am currently enjoying stuffing my face with them liberally dosed with butter. So don't believe everything you read.

If I had my time again with the oncologist there are two questions I would now ask:
1. What priority is my cancer treatment being given (I saw my records and I was down as routine; by the way you are entitled to see all of your records under the new GDPR rules and regulations, including minutes of meetings, emails, voice recording, even CCTV. Good to know if you wish to make a bit of a nuisance of yourself - it is called a Subject Access Request).
2. How quickly will your treatment start? Sorry the NICE guidelines are not good enough for a 30 or 60 day pathway when this cancer progresses very quickly. Quick diagnosis is no good if treatment is delayed.

Also, find out where they will administer the chemo, I was shown the chemo suite which was quite a hot crowded room with a bunch of reclining chairs. I quickly realised that I was struggling to sit down and the first Folfirinox takes about 5-6 hours, hardcore when you are not feeling well, insist on a bed because it is exhausting and my first three rounds took over 10 hours. Today it was 7 hours and they were on my case straight away and very efficient. I did feel pretty rubbish at one stage and did suffer quite a bout of vomiting so was relieved to be able to lie down a sleep it off.

I too was fit and healthy but did start to go down hill rapidly, even the first dose of chemo made a big difference to me so keep positive. But expect to fight, and don't be afraid to complain (one of the cancer nurses actively encouraged me to, even pointing me in the right direction!). You will met some truly amazing people on this journey, including the wonderful nurses and doctors who will treat you, but there are not enough of them.

Good luck, keep fighting and don't give up hope.

Toodotty

kate2101
Posts: 64
Joined: Fri Jun 15, 2018 4:20 pm

Re: Battling to get treament

Postby kate2101 » Sat Jun 30, 2018 10:13 am

Hi toodotty

Thanks very much for your advice, very helpful. Not a good day yesterday, collected my daughter from London, she’s been there for a couple of months on an internship. She is devastated. I’ve tried to play down the seriousness of it all as much as possible but she’s not stupid. Think it’s made it more real for me too. Anyway, positive mental attitude!

I had a liver biopsy last Monday and my oncology appointment Tuesday is to discuss results and chemo. I’ve been led to believe, if all suitable, this should start within next two weeks. Who would have thought I’d be looking forward to being pumped full of toxic chemicals! Was supposed to be on holiday in Cornwall but I want to get going with regime.

Still doesn’t feel possible this is happening but we have no choice but to get on with it. Keep telling myself the longer we can hold on the more treatments will be out there. Hope you feeling ok today and not too many side effects.

Thanks again for advice, much appreciated.

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Battling to get treament

Postby toodotty » Sat Jun 30, 2018 10:29 pm

Hi Kate2101,

Unfortunately everyone who knows you will be devastated and find it difficult to cope. Some of my friends have admitting to crying continually, it even has taken one 2 months to ring me because she was afraid she would break down on the phone. I made her come and visit me today, we had a good laugh, including me trying on a range of my disguises (courtesy of head scarves, wigs etc.). I told her that I have rationalised my disease as there are worse things, such as dementia, motor neurone disease, (look no further for inspiration than Stephen Hawkins), persistent vegetative state etc. She went away feeling much better as she could see that I was coping, and that I clearly am not on my deathbed.

Had a really good day today, not leaving hospital total exhausted yesterday has had a positive affect today, I haven't even needed any painkillers.

Interesting that you have had a liver biopsy, I had a biopsy of the pancreatic tumour but they have not taken much interest in the liver, though I have only 3 small lesions on the liver.

Good luck for Tuesday,

toodotty

kate2101
Posts: 64
Joined: Fri Jun 15, 2018 4:20 pm

Re: Battling to get treament

Postby kate2101 » Sat Jun 30, 2018 11:20 pm

Hi again,

Multiples in liver so easier to get to I think. Better day for me too, ‘normal’ day, food shopped and bbq in garden. Ate quite well and think my daughter reassured that I’m still the same mum. She disappeared out and came back with an assortment of healing crystals, wish it was that easy to heal but I’m sleeping with them under my pillow 😊.

Hopefully another good day tomorrow, friends joining us for another bbq, making the most of the sunshine and reassurance I am still me!

Like you, I keep comparing my illness with others and have reached the same conclusion....there are worse positions to be in. Still not fair but have to get on with it and make the most of every day.

Glad you had a good day too, here’s to many more!

😊😊

PCUK Nurse Jeni
Posts: 1021
Joined: Mon Jun 14, 2010 1:30 pm

Re: Battling to get treament

Postby PCUK Nurse Jeni » Mon Jul 02, 2018 12:55 pm

Hello Toodotty and Kate2101,

Thank you both for such positive & inspiring posts over the weekend.

You both seem to be just "getting on with things", so to speak, and being able to share stories, and support one another is lovely.

I wish you both the very best in ongoing treatment.

Kind regards,


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

toodotty
Posts: 147
Joined: Sat Jun 09, 2018 4:17 pm

Re: Battling to get treament

Postby toodotty » Mon Jul 02, 2018 10:55 pm

Hi Jeni and Kate2101,
Absolutely, no point in mooching around feeling miserable. Making the most of the time, could be run over by a bus tomorrow, there is no certainty in life. Was a bit worried I might be arrested on the suspicion of shoplifting today, as I was the only person in the shop in bobble hat, gloves, coat and long trousers, thanks to the tingle fingers, toes and nose. But that will diminish in a couple more days, once the chemo has gone through the body.
Starting back on the exercise bike tomorrow, as the steroids are really doing for my legs and buttock muscles. My bum will never look big in trousers now!

Good luck for tomorrow Kate2101,

toodotty