My Mum

[Purrfik]

Hi all.

My mum has been diagnosed with pancreatic cancer which has spread to her liver. She is 77 years old and, apart from a few broken bones, has never been ill in her life. The only time she would touch a 'tablet' was when she had flu, which she hasn't had since they started having flu jabs. She's always been one to 'push through it'.

In mid March the weather was lovely and she pulled a garden chair from the shed. Not long after she started having rib/back pain. We all put it down to a pulled muscle and Mum refused (as usual) to see a doctor about it as it would mend in it's own time. But eventually the pain was too much and she started taking ibruprofen for the pain.

At the end of April we managed to persuade her to join the local doctors and make an appointment. My parents had moved from my home to their own little bungalow in a different area and as neither of them use doctors, hadn't registered with one.

The first doctor she saw gave her painkillers. The second one ordered a chest x-ray and a fasting blood test and other blood tests. The third one ordered an ultrasound scan. By this time we were getting worried as the pain wasn't diminishing, it was constant.

The radiographer said to my Mum that she could see a mass behind the liver, but couldn't make it out properly but the liver was clear. She said her doctor needed to order an MRI for her and an endoscope.

Mum phoned her doctor the next day. They had got the report from the radiologist and it showed a mass and Mum was to be referred for an endoscope which should be within 2 weeks. A letter arrived at Mum's asking her to go for a referral to see a lower GI specialist. I was concerned as I thought she was supposed to be having an endoscope and, if she should see anyone, she should be seeing an Upper GI specialist. Her doctor reassured her that she was going to the correct place and that the specialist would order the endoscope.

We went see the specialist who examined Mum. He said he could feel a lump. I asked why we had come to see him rather than an Upper GI specialist. He said it was because the mass was in her transverse bowel and that it would be a simple matter of cutting out the affected bowel and stitching the ends together. No stoma needed. This was good news as far as I was concerned as I'd thought, given Mum's symptoms, that it might be PC. Bowel cancer is slower, it was contained, it could be cut out.

They arranged for a CT scan and a colonoscopy. They couldn't get the colonoscopy done until nearly 3 weeks later and the scan was in two weeks.By this time Mum was on stronger opiods for the pain, which was unbearable when breakthrough pain occured. She had to go on a very low fibre diet (she has always eaten healthily, was not overweight, had regular bowels)as well as laxatives and four days before the procedure she had to come off the opiods and use paracetamol and ibruprofen for pain. That was really hard as they really didn't help at all. She had the scan - we didn't get the results until the following week. The day before the colonoscopy she had to drinks litres and litres of fluids while taking some of the most effective laxatives I have seen. It completely drained her.

The next day we went for the colonoscopy. We got there early as Dad had to go and bury his brother. While we were waiting we were told that the specialist nurse was coming to see us. She told us that Mum didn't have to have the colonoscopy as it wasn't needed. We asked why and she said that the mass wasn't in the bowel. We asked where it was. I was floored - it was in the pancreas. How had they got it so wrong???? Mum had had to go through the barbaric preparation for a procedure she didn't need. Since then not one person has apologised for the mistake. In the time since the ultrasound Mum lost nearly two stone in weight and as she wasn't overweight, this has made her look really gaunt.

We were given an appointment to see a hepatobiliary consultant later that week (end of June) who told us that it had spread to the liver. We were gutted. We were angry. How could they make such a mistake? They said Mum was good candidate for chemo and that they wanted a biopsy ordered. Mum refused. She was feeling very let down and had lost her faith and trust in them. We agreed to see an oncologist to talk about what could be done and we asked for a celiac plexus block (specialist nurse said it might be good for the pain). They said they'd sort it out and we came away with a note to the GP to prescribe enriched drinks, anti-emetics and Creon.

The GP duly wrote up the prescription but with no instructions on when to take so I spent time on the internet trying to find out how to take Creon.

Mum was on Zapain and Oramorph for breakthrough pain (occurring much more frequently now). Over the next few weeks she was sick - not all the time - but every few days - projectile. This made her less inclined to eat. We were constantly getting out of hours or the GP out and we said that she hadn't opened her bowels since the colonoscopy prep but we were told that she wasn't eating enough to create a bowel movement and not to worry. In a couple of weeks she went from being a healthy mobile person to a shell who struggled to get to the toilet in the next room.

The sickness did not stop - every 2 to 3 days she'd vomit and the next day be weak but not nauseous. I felt something was blocking her bowel. When her specialist nurse came back from holiday I urged her to do something and we got her into hospital. An x-ray that night (midnight) revealed she was impacted and food just couldn't go through her bowel so had to come back up after a while.

She's been in hospital 11 days now and it certainly hasn't restored her faith in the NHS. She's been crying with pain and told she can't have any painkillers (she was signed up for 'as and when' as the pain was severe) even though she hadn't had any for 6 hours. They keep letting her syringe driver run out (despite reminders) and one nurse decided to slow it down to take 3 hours longer to run out as she was 'busy'. She went for the nerve block yesterday. We were at her bedside when she came back to the ward. I asked the endoscopy staff who was with her how it went and she said great, they got everything they needed. I questioned this straight away. How could you get every thing you needed? What were you getting? What about the nerve block as this was what she gave consent for? Turns out the nerve block wasn't done as they couldn't find it. She said they hadn't 'taken' anything from Mum when I said I hoped they hadn't taken a biopsy as Mum specifically said no to that. She then said she'd made a mistake and meant to say that the block wasn't done. How can my Mum and myself trust these people? They are supposed to be making her more comfortable but instead are causing her pain and anguish.

Oh, I am so sorry for writing so much. I hope you don't mind but it has made me feel better getting it all down, although there is much more that's happened that makes me want to take Mum out of hospital and care for her at home.

[sandraW]

Hello Purrfik, welcome to the forum no one wants to join, however the people and nurses on here are full of support and advice. What a truly terrible time you and your poor mum are having, don't feel bad about writing it all, and I am glad you feel a little better letting it all out!

I feel so sorry for your mum no-one should be in pain like that, and it makes it worse for you if you feel she is not getting the care she deserves. Perhaps you could speak to the Sister in charge of her ward, and get some answers from her, and also make her aware of your worries about the pain relief, or lack of it Then ask for an appointment to speak to the consultant in charge of mum's care and try and get to the bottom of the nerve block/endoscopy situation, and where she goes from here.

I hope you get some better news soon, keep posting take care sandrax

[Cathy]

Hi there,

What a nightmare you've been having. And seeing someone you love in pain is a hard thing to bear so I do feel for you very much.

Suggest talking to your local PAL team about your concerns, but I also recommend talking to the nurses on this site (email support@pancreaticcancer.org) as they can give fantastic advice.

Best if luck. I really hope the journey forward proves less onerous than the path you have already travelled.

Cathy xxx

[Purrfik]

Thank you for the welcome. Mum has now been moved to a more appropriate ward, that understands pancreatic pain. The nerve block was not attempted as it was deemed that it would be too dangerous for Mum and as it was they had to give her more sedation than was normal for the procedure. She was signed up to start on gabapentin Friday but as of yet they haven't got it from the pharmacy. I just want to get her home where she can have the pain relief within a few minutes - yesterday, during visiting, she twice asked for pain relief and both times it took well over half hour as they were too 'busy' to deal with her request. Hoping that now she's on another ward that the pain relief will come in on time. The doctors have signed her up for everything she needs - it's just the nursing staff implementing it that fails. Thank you for allowing me to let off steam on this forum.

[Purrfik]

Update: Mum is still in hospital. She is much more comfortable on the new ward. Pain relief is instant from the nursing staff. She is sleeping way too much but better that than pain. Palliative doctor informed me today that her liver is failing, the disease is taking her faster than expected. She is hallucinating and confused. Dr says this is most probably due to the extra gabapentin along with the oxycondone and will be lowering the oxycodone which should help. She now has pain in the liver area which is quite stubborn. Dr is going to prescribe steroids to hopefully help that. I just want her home. I am gutted that her time has been taken up by being so ill that she cannot do what she wants to in her last days/weeks. My dad is distraught. It's their wedding anniversary Sept 6th and, although we were led to believe that she'd be there for that and my daughter's wedding in November, it looks like she'll miss both

[sandraW]

Sorry to hear mum is still in hospital, but glad she is at least more comfortable, perhaps when they get the medication sorted your mum will be more settled, and may be able to come home again. take care sandrax

[Purrfik]

We lost Mum yesterday They fast tracked her out of hospital. Not quite 8 weeks since diagnosis and she's gone

[brodders]

So sorry to hear about your mum - truly such a sad sad surreal time. I know exactly how you are feeling my precious mum died 4 months ago she was exactly 76 and 1/2. She died 11 weeks after diagnosis. Take care and lots of love Cate xx

[Didge]

So sorry to hear this. But it seems she was able to come home at the end? I am thinking of you x

[sandraW]

So sorry to hear you have lost your beloved Mum, thinking of you all take care sandrax

[wackywacky]

So sorry to here this x

[SusannaUK]

So sorry to hear this, thinking of you, take care x

[PCUK Nurse Jeni]

Hi Purrfik,

I am very sorry to hear about your mum, and the short time in which she declined.

I would like to extend the condolences of the support team and wider charity to you and your family.

Kind regards,

Jeni, Support Team.

[Cathy]

Hi there

I am really sorry to hear of your Mum. So quick!! Glad they managed to fast track her out of hospital though. You must feel completley numb by the speed of it all.

Thinking of you

Cathy xx

[Bowie]

So sorry to hear your news. Thinking of you and your family at this very sad time.

Fiona X

[Sueoliver]

I am so sorry to hear your news. My mum is deteriorating and it is hard to witness. My thoughts are with you and your family. Sue x