I don't know where to begin

[zabka]

Hello.

 

I'd never given pancreatic cancer a second thought until Monday of this week. Since then I've been desperately reading and researching and trawling through people's experiences on this and other forums. What an excellent resource this website is - credit to all who keep it up and running.

 

Today has been one of the weirdest days of my life.

 

On Saturday 27th July, my partner (K) and I nipped to her sister's (M) house down the road to celebrate her 43rd birthday. We sat and ate some food, watched a film, had a beer. It was like any other relaxed birthday. Except for her partner (P, 47), who looked pale and was complaining of stomach pain.

 

He was a little unsteady on his feet and had lost a noticeable amount of weight since we'd seen him last. M suggested she take him to hospital about the pain but he refused, all stoic and macho as ever.

 

I didn't think too much on it until Sunday 4th August, just over a week later. The pain had worsened and P was struggling to catch his breath, so M dragged him down to A&E to get checked out. He was booked in for the night and put on a drip for fluids.

 

On Monday 5th, M arrived at our house in tears. After blood work and maybe a scan, I'm not sure, P had been diagnosed with pancreatic cancer which had spread to the liver and was situated very close to major blood vessels. It was immediately deemed inoperable. His calcium levels were very high, platelets low, and they were unable to do a biopsy to explore treatment options.

 

This sudden and bleak prognosis out of the middle of nowhere didn't align with my previous experience of cancer and I refused to believe it. He's young. How could they be so sure when tests only started yesterday? With no biopsy? Nothing made sense.

 

And so began the quest for information. My heart sank further with every forum post, every statistic. I could see that most people diagnosed were older, with other health conditions, and tried to retain some hope. But it all seemed very dark, and things weren't looking good for P.

 

Tuesday passed with a blood transfusion and no real updates or changes. The team would be meeting on Wednesday morning to discuss P's case.

 

On Wednesday afternoon P, M, and K were told that chemo would not be an option as the cancer was too advanced. P had perhaps days left, a couple of weeks at most.

 

One of the nurses commented that 22 years was a long time to be together, and asked why had they never got married. M said they always planned to but it just didn't seem like a priority. I guess you always think you have more time.

 

The nurse said they could try to arrange a wedding in the hospital and both M and P jumped at the chance. M and K went back home to scramble for a dress, rings and so on. Friday was discussed as a potential date.

 

Today (Thursday 8th Aug) I'd just left home for the office in a taxi and got a message from K. Wedding at 11am. TODAY?! Absolutely mental. I didn't think such things were possible.

 

Managed to divert to the hospital and met K on the way in with cake and balloons. She's been such a rock for M this week and I am so proud of her. There are no other family members nearby - all of them have moved to the UK from another country - and M and P are a private couple who don't keep many friends.

 

The service was brief and K and I were the only proper guests, so served as witnesses. A clinical photographer mixed things up for the day and came to take some impromptu wedding photos. The room had been kitted out with some basic decorations. There was a cake, alcohol free prosecco and a small buffet.

 

All the nurses and doctors had gathered outside and watched M and P exchange rings and vows. P could hardly get the words out and was struggling with a tight shirt over his bloated stomach. I don't think anyone had dry eyes by the end of it. At one point he looked at her and there was such relief in his face.

 

I'm so glad they managed to do this before he passed, but it might be the most heartbreaking thing I have ever seen. I feel so sorry for both of them. How can your life get ripped apart like that in the space of two weeks?

 

P is very weak and can barely get himself to the bathroom. His food intake is severely limited. From what I have read here, things are likely to take a turn for the worse and rapidly decline in the coming days. I worry for M and K's mental health over the next few weeks, and have tried to gently suggest they request some support in that area as past experience suggests it can take some time to arrange through the NHS, but they don't seem interested.

 

Sorry this is so long. I am definitely the least impacted person in this whole situation as I'm not related to anyone else by blood and they have all known each other for longer, but it has just been so shocking and has developed so fast that I am struggling to process. Hoping that writing it out will help in some way.

 

My thoughts are with anyone here reading who has been impacted by this awful illness. I am grateful that this space exists.

 

Sorry for the lack of detailed information on P's condition - today was the first day I went to see him so haven't heard any of the doctors first hand, and there's something of a language barrier as none of them are English.

 

Massive credit also to the team at P's hospital, who have really gone above and beyond since the news yesterday. They all came in one by one to congratulate M and P today. It was very special.

 

That's all for now. I will probably update with developments later.

 

Thanks for reading, if you made it this far!

[zabka]

P came home today.

 

He wants to die at home. He has already been moved. There is no hospital bed - apparently one will be delivered at some point - and no commode. There are no medications - he only has some Oramorph. M has gone to collect some items from the hospital - hoping that includes the emergency drug kit I've read about in other people's stories - and K has had to go sit with P in the meantime.

 

A nurse will visit once a day. This starts from Monday. So there will be no support at all over the weekend.

 

I am terrified. I feel that the move home has happened too soon and hasn't been fully thought through at all. I have been raising concerns with K that she is M's sole support and too heavy a burden is being placed on her. She cannot give everything that M and P rightly need right now and I feel the load needs to be spread wider for all of their sakes.

 

For example, what if K becomes ill from the stress? Who will help M then?

 

Neither M nor K have ever witnessed someone die of cancer. I have, in a hospice where they were properly cared for and made as comfortable as possible. It is not an experience I'd want to relive in a house without experienced medical professionals.

 

I feel like they have a very idealistic view of how this will go. They think P will slip away happily and peacefully in the next couple of days. I think this is incredibly naive and they should seriously be considering a hospice if that's an option.

 

From the lack of activity here recently I doubt I'll get a reply. But if anyone is reading, I'd really welcome your perspective on what is happening here. Am I being an unreasonable, selfish and terrible person? Or are these concerns somewhat justified?

Edited August 9 by zabka
Added a couple of points

[Janecav]

Hi

My Husband and I decided he would be at home when he passed.He had pancreatic cancer which had spread to liver and lungs.From his first symptoms to his passing it was 2 and a half months.He deteriorated quickly ,having only oramorph,codine and paracetamol for pain relief.

The last 24hours there was just the two of us-no nurses no medical help.I think he thought if we called for help then they'd take him into hospital and he'd die there.

The negative of that was that he didn't have the pain relief he should have done and I worried that I was meeting his needs.The positive was that I was there for him till the end.Just us,no strangers & he was fully aware of what was happening. It was so personal to share that time and wasn't scary but was special if that doesn't sound too strange.  You're not being any of those things you say,you're looking out for them.Theyre lucky to have you.

[zabka]

Janecav - thank you for replying. I really appreciate it. And thank you for sharing your own experience - in a way, that does reassure me, maybe it will be easier than I anticipate. I have read that it may help in the grieving process too, to care for the patient, but feel like it'd make being in the house quite upsetting after?

 

I am sorry for your loss, and for your husband's pain. Thank you for helping me feel a little less guilty too, for having these thoughts.

 

Update:

 

Thankfully a nurse was arranged for the Saturday so P got his first intravenous morphine dose, and they now have the emergency medical kit. Macmillan have been very present and practically helpful. But there is still no proper bed or other equipment, and the coordination between the hospital and GP has been shocking to nonexistent.

 

On discharge, P was told that the GP would do a home visit on Monday. They ended up having to fight for a phone consultation because the GP apparently hadn't been told anything. It only resulted in a painkiller prescription and being told that it is 'too late' for Creon. The general vibe is that P is basically already dead and doesn't deserve any additional resources. I'm disgusted and appalled and heartbroken for both of them.

 

I read through P's discharge notes today and there was a form about respect or something to record P's preferences as to priorities in his care (comfort/ lifespan). It was so barebones and lacked any detail or useful information. Half the boxes were blank, and some stuff was listed in the 'do/ do not recommend this treatment' box with no indication of whether those were the things to avoid or achieve! No additional documents linked, like a proper end of life care plan. I'm confused as to what the GP is doing in all of this, as from what I've read here they are supposed to be responsible for the damn plan!

 

The detail on the tumor, prognosis etc. made for a pretty harrowing read. The pancreatic tumour is over 6cm x 7cm in size and has either enveloped or invaded some blood vessel which sounds like it's related to the spleen. The liver metastases are widespread and extensive and his lymphatic system is badly affected. He has ascites. Apparently they tried to drain fluid at the hospital but it wasn't possible for some reason, and then nobody's ever tried again since. I don't understand why that is, as his abdomen is really badly swollen and is causing him great discomfort.

 

The Macmillan nurse estimated two weeks when she visited Sunday, based on P's current mobility and how he looks, but I guess you can't put a proper number on these things.

 

K thinks she's managed to source some Creon from a relative with pancreatic issues in the absence of a GP who cares. The nurse doesn't have an issue with him trying it, and he does still have some appetite, so that's the only real vague hope right now, that maybe he can enjoy a few good meals while he's still here.

 

M seems to be opening up very slightly to other people who aren't K and I - work colleagues for example - so hopefully that's a sign that the support network could be growing. Sadly no other family have come to support. I think K feels quite sad and almost abandoned by her parents, who aren't making a real effort to travel here to help. I'm also possibly unfairly frustrated with their cousin, who's meant to be really close with M and is the only other family member in the UK, but can't get here until the weekend because she's on holiday (and she's known for over a week!). I guess at least she is planning to come at all, but you'd think someone literally dying might take priority over a holiday. Like I say, maybe I am being unfair.

 

The whole thing really sucks. I feel so sorry for P and M. I feel awful for K. I'm sad about losing P. I'm frustrated by the really shoddy coordination of his care and the neglect of M and K's family. Too many feelings!

[zabka]

P has deteriorated over the past few days and can no longer make it to the toilet. M and K spent half an hour walking him back to bed yesterday. He is in constant pain and can't really communicate. M is exhausted and is barely sleeping. She doesn't have the strength to move him alone and has had to put him in adult nappies for the time being.

 

She has finally accepted that she cannot do this and is trying to find a hospice placement so he can be more comfortable and his needs can be properly met. I think she is upset but she has done everything she can, more than anyone could be expected to.

 

I wish this had been easier for them. I wish the NHS had given a more realistic view of how this could go, and helped them to accept this might be the best thing for both of them earlier than now. The booklets about 'what to expect' are so clinically worded and don't do justice to the trauma and emotional turmoil of end of life care.

 

A nurse is on the way and they are trying to find a hospice space. I haven't seen P myself but K said his breathing is more laboured and raspy today. I'm not sure what will happen if they think he is going to die in the next 24 hours - will they want to risk moving him? I hope that if it's deemed better to leave him at home, some more robust nursing support can be provided, a syringe driver arranged and so on.

 

It's a waiting game now I guess. This disease is awful. Nobody deserves this to happen to them or to someone they love.

[rhi]

I’m so so sorry to read this. How awful. I know, I’ve been through it very recently. 

My beautiful Mum was diagnosed in Jan and passed at the end of March. GP hopeless. I feel like you, she was written off.

 

Gabapantin did help somewhat with pain, it’s a nerve blocker it may help. Ask. Background morphine and oral. As much as required. 
 

We had a large amount of siblings to share the care but it nearly broke us all at the time. I think we are all broken. I’m not sure we’ll be the same again. I’m sorry. It’s bleak and so awful. 

 

Shout for the nursing support, reach out to local charities. 
 

It’s truly the worst. Just be there and support as much as you can. Now and afterwards. Almost 5 months on and I still struggle to believe what’s happened.

 

Thoughts are with you, hope you get some support that you all need.