Grumpy's Story

[Quickasyoucan]

No not one of the 7 dwarves! My Dad, John, aka grumpy to his 7 grandkids (his choice of grandparent moniker)

Just thought I'd start a thread in honour of my Dad.

Dad is 83 and until a few months ago a v active go up a stepladder with a chainsaw to trim the hedges type of 83.

We lost my darling Mum at 70 to motor neurone disease in 2010 so unrelenting b*stard diseases seem to be our thing.

Dad had a blip in 2014 with a large dvt in his leg and, as I have mentioned elsewhere, they did ultrasound him at the time but nothing pc found. Since then he has made several trips here to Australia (where 2 of us live) and generally acted like a 60 something.

Fast forward to end of September 2016 and dad gradually becoming itchy yellow and unwell, losing 10 kg and a grindingly slow Nhs wheel to eventual stent and diagnosis of pc, adenocarcinoma in head of pancreas. Cant look back but dad suffered with delays and lost strength which could have served him well in this journey.

He was initially being considered for whipple but after further tests found some lymph node involvement and possible small liver met was referred for chemo.

Offered gem only until dad asked for gem cap and commenced just before xmas.

Unfortunately we have had 3 hospital visits delaying one chemo: one for raised temp, one for cellulitis in legs and current admission for possible infection.

Dad has developed lymphedema in both legs which is really his main complaint. He takes creon, omeprazole and one dose of codeine at night but his digestive symptoms are no worse than 2 months ago.

He has finished one cycle no scan as yet but on Monday oncologist told him he thinks lymphedema is from tumour pressing on vena cava and may be chemo resistant "or I might be wrong". That is obviously upsetting for us and dad and we would prefer actual scientific confirmation via ct than a hunch but it appears urgent ct are not a thing in the Nhs.

Dad was admitted today as temp went up lovely doc who wants to get to the bottom of it. Likely to have ultrasound to check stent but still chasing that elusive ct.

a few hours post admission temp is down and dad not even lying down but FaceTiming me here!

Anyway that's where we are at. Tomorrow is another day. Although it's actuall tomorrow already here!!

[Justamo]

Hello Quickly. Grumpy sounds like a lovely man. Do you have other siblings living close to him ? I know you mention a sister in Australia, I just wondered if he had someone here.

My Peter will be 85 this year and at the moment is full of plans for "when I get better". There's not much you can say to that without destroying every bit of hope, so I go along with it. He looks so fit and well at the moment but suffering quite badly from constipation from the chemo.

It's good that he manages FaceTime. I got Peter a tablet so he could send his own emails but he has to be reminded every single time about which buttons to press.

It's good to hear from you. I'm doing my usual waking up at 04.30 !

Love, Mo

[Quickasyoucan]

Thanks for responding Mo. yes my eldest sister and my brother who is the youngest are in the uk. My sister lives in the same town so is on the PC coal face. Lucky dad is technology mad so I normally FaceTime him each day before and after work. It makes all the difference to see him face to face. Dad also has George his rather noisy 11yr old welsh springer for company. G is the reason Dad was so fit 3 walks a day. We have now found a dog walker and my poor sister and husband are also doing that. She is really bearing the brunt and it is frustrating being so far away. I am visiting in a few weeks which will be good for her and lovely to actually be able to look after Dad.

I have been here 20 years so uk no longer feels familiar. Scans and the like are readily available in shop front centres with a pretty good rebate from Medicare so the delay aspect in the uk took me by surprise. Having said that I understand outcomes for PC are much worse in remote and rural areas in Oz and I benefit from being in a large city. Plus I've never seriously tested the system thank goodness!

[Elaine123]

Hi as you have already seen this forum is one of the best places you could be for support and knowledge from a wonderful group of people and nurses. My husbands story mirrors your Dads and The forum and nurses have pulled me through the worst seven weeks of my life.

Thank goodness for Facebook eh it can make the miles between melt away but you will be so glad to visit soon and be involved in your Dads care. Thinking of you and Grumpy

Elaine

X

[Dandygal76]

My son calls my dad grumpy. That is what comes up on his phone when dad calls.

It is such a shock isn't it when they are so fit and active. I remember when dad first got symptoms I thought it could not be PC.. He was the healthiest person out there.

I am sorry about your mum as well, that must have been truly awful.

We all know about those horrible delays. It has pretty much affected everyone I know diagnosed in the uk and they do lose strength fast and it can feel so helpless. The medics do also sometimes come out with random things and I would say don't give up hope just yet. No one knows if the tumour is resistant, only a scan can tell you that and one round of chemo is not enough to determine it. I think that getting an early scan won't help matters, especially if you had cancelled chemo as well.

It is common to get these infections and chemo to stop every now and then. You need to just dig in now and let things do what they will do because you are already doing everything you can.

I am all confused now... is it tomorrow again already or do we wait until 12. I have to deal with today so whatever it is there stay strong. We will be here to help today and tomorrow - whatever day it is. x

[Quickasyoucan]

Just FaceTimed dad we love technology. He is shaved, washed and up. Nil by mouth waiting for an ultrasound and ECRP if it turns out stent is blocking.

I should add sometimes you come across gems in hospital. There is one guy in dad's who is omnipresent taking bloods wheeling people around and going the extra mile. They should clone him as people like him make all the difference. Best wishes to all fellow pc travellers.

[Dandygal76]

Yes... they can make a huge difference. I am glad your dad seems on the up and good luck with the scanning. He is in the best place... they do things so much quicker once they are admitted. x

[Quickasyoucan]

A quick update on dad. He is still in hospital but they have done a ct stent is not blocked but detailed results re tumour pending. He is ok being given Iv antibiotics to try and knock off any underlying infection. When we get results whatever they are we can move forward tho I wouldn't be surprised if tumour has grown given delays in diagnosis and starting treatment the usual story plu only one broken cycle of chemo. That said he really has no pain except the darned swollen legs. Oh and they keep locking his creon up with meds. Can't they issue a nationwide memo about the need for creon every time you eat! George is with my sister and vocally making him presence known! Animals are there to keep us on our toes. I have my own 14 year old canine patient here with inflammatory bowel disease and chronic pancreatitis. He and dad are currently alternating between medical crises!

[LanasMum]

I have an 11 year old feline patient with chronic pancreatitis too xx No pain is good

[Justamo]

Hi, Quickly.

Get somebody to smuggle a supply of Creons into Dad and tell him to keep them a secret. The last time Peter was in hospital the staff handed out Creons with the bedtime tablets so I took a supply of meds in for Peter and they acted as though it was phials of Ebola virus and almost called security to take me away.

I believe that only 1% of cancer research fund raising money goes to PC. And I should think I that only 1% of student nurse training time goes on PC judging by the number of in-patient Creon stories you read on this forum. So subterfuge is the answer.

Our lovely Marmalade is a very efficient drug-smuggler, I'm sure she'll give you some tips !

Take care,

Love Mo

[Elaine123]

Hi Quickly cannot believe I read your Dads Creon was locked up also I have just wrote a post about it happening to Pete today.It just astounds me that this takes place every time Pete goes into hospital. I hope you get your Dads results soon the waiting is horrendous eh and I don't think they realise just how fraught patients and family get when the waiting seems to go on and on. Thinking of your Dad and all the family....take care

Elaine

X

[Quickasyoucan]

Just a quick update dad is still in being given periodic Iv of antibiotics. Nursing care great tho hes self sufficient in personal care but doctors conspicuous by their absence over the weekend so no detailed scan results or talk of discharge. He was much brighter last night but had a bad night with wind discomfort probably the antibiotics which always did that to him even pre of. It are a necessary evil. Hopefully Monday will bring some progress to discharge. He is in a single room with ensuite as hospital fairly new and my sister is sleeping better knowing he is not home alone tho that is his choice. Best wishes to other hospital inpatients eg Elaine's Peter and Dandygals own "grumpy".

[Quickasyoucan]

Ps that was meant to read pre pc autocorrect strikes again

[Quickasyoucan]

Wrote a long post on dad pressed submit and it vanished!

Briefly Dad is home cellulitis is gone and he has been pretty good since he's been out. Went up a stepladder swollen legs and all to change a lightbulb v naughty!

Bad news is ct shows cancer is now compressing portal vein and he has a second liver met.

Oncologist believes that after one cycle the fact tumour still growing means it's likely resistant and he no longer feels dad is a candidate for chemo. He is obviously concerned dad has had hospitalisations and looking at risk reward. Dad still wants treatment so we are waiting for appointment to have a frank discussion.

I will be traveling to uk in 3 weeks can't wait to see dad but dreading 24. Hrs on a plane!!!

[Guest]

I don't envy you the flight, I've done it many times and its gruelling.

It sounds like a frank discussion is called for, for everyone… Is your Dad fully aware of the prognosis in his case and all his options, including that of no treatment? If he knows and wants to place himself in what my sister-in-law calls "the bubble" then that is fine and his choice but its hard to deal with people's fears, or ensure that their end of live care is what they want if it is not discussed at some point. We agreed to speak about it for one day and then not again. That one day gave us the chance to hear that Louis wanted to be at home, did not want to be going back and forth to the hospital for checks which would not change the outcome, wanted to be kept mobile and alert for as long as possible and comfortable at the end. He chose quality over quantity.

This allowed us all to plan in the background, get the GP and community nurses organised and to do coping and caring courses so that neither he nor we were scared witless every time there was a change in his condition. This system kept my husband mobile, alert and content until almost the end when he took the decision to increase his medication so that he could sleep peacefully.

I hope the hospital can offer him some palliative treatment if chemo is not going to help.

Best wishes to all and try not to think about that flight….

M xx

[Quickasyoucan]

Thank you for your response Marmalade. I read your story and Louis a while back and it actually gave me a lot of comfort.

Dad I believe is acutely aware of his prognosis but prefers to be in a bubble. Occasionally he pops his head out but if you speak about it for too long he shuts it down.

We are now on the books of our local hospice and the coordinator is coming tomorrow. My sister will be there as well and has a list of questions. Unfortunately the oncologist's team are not v proactive so Dad is still pushing for an appointment. Dad still likes to do the bulk of chasing up himself believe me he has a file on his illness!

What we do know Dad wants to stay at home and my sister and I are convincing him that plans need to be put in place now not when the need arises as, as you know, disease progression of any type can be unpredictable.

Thanks again for responding it means a lot, you write so well I almost felt I knew Louis. You have certainly preserved his memory and helped others with your thread.

[Guest]

I completely understand that Dad does not want to keep talking about it. I don't think I would either.

I don't think you have to plan too much really. There are some practical things that I think help. I did ask Louis to move rooms to a larger one where we could have a comfy chair, aTV, a sofa (actually a fold up bed would have been better) and a table over the bed. We were able to do this and have an ensuite bathroom almost next to the bed. Louis understood that this arrangement would allow him to get to the bathroom easily and give us space to nurse him when the time came. We kept all medical equipment in another room until needed. E.g. Walking frame, shower seat, commode. Etc. We also got in av supply of pads to protect the bed ( buy them as they are better size and quality than the ones the Nhs provide) plenty of sheets, plastic gloves, antiseptic wipes, and small bin bags with tie handles to dispose of waste. All of this can be kept out of Dads space until needed. We also found the baby monitor a god send, it means you can rest or potter in the kitchen and know you will hear if he needs help. The best ones filter out background noise like the TV. Find the phone number of a laundry who will collect and return and fill the freezer with simple meals. Trips to and fro hospitals or disturbed nights are exhausting for both patients and carers so the last thing you want to do is be washing and ironing or shopping and cooking.

Changing the room round was a big thing but Louis loved the space and the fact that it was light and airy and nothing like a sick room. Should it be needed a hospital bed (they don't look to much like hospital beds) can be delivered by the Nhs in less than 24 hours so no need to plan that. Many patients are much more comfortable in a bed that they can adjust and it's much easier for carers. Stair lifts are not too expensive to hire by the week or month are neat, don't damage the stairs or walls and can be installed and removed in less than a day. I found local firms on line.

I hope all this helps you understand what is available and how quickly it can be accessed. The community nurses or the GP can action requests for equipment.

Much love xx

[Quickasyoucan]

Hi marmalade all great tips. Luckily dad bought an adjustable bed for mum so he has that. District nurses just supplied an air mattress which he is using for first time tonight.

He actually moved downstairs after mum died so he has his single adjustable bed and ensuite all to hand. I think he must be a domesday prepper at heart as he closed down what is already a small house a few years ago and lives out of kitchen living room and his bedroom on the ground floor.

He is fiercely independent with self care though.

My main concern is he lives alone and my sister can't be there all the time and his other two daughters are in oz so I'm not sure how that works with people with no live in relatives. All questions for the hospice and district nurse.

[Proud Wife]

Just to say I'm thinking of you quickly and your dad . Marmalade has given you such brilliant advice there's nothing more for me to add. Xx

[Justamo]

Hope your journey goes smoothly Quickly, you will be so glad to spend time with your dad.

Bet he'll be happy to see you.

Love, Mo

[Quickasyoucan]

Thank you Mo I can't wait to see him. Dad was admitted to hospital with a temp and vomiting on Sunday night but will likely be discharged tomorrow after more antibiotics. Consultant has now suggested that he be given an emergency pack of antibiotics to take if temp goes up to avoid constant readmissions which could expose him to hospital acquired infection. So that is a good plan. He is ok apart from that and has been up and walking around the ward to assist with the lymphedema.

[Elaine123]

The hospital admissions are distressing eh and a huge relief once they are back up and about again. That is a brilliant idea giving your Dad the antibiotics home just in case that means you can start to fight the infection an hour or two before he would receive them in hospital by the time you would get there and he is admitted. You must be so desperate to get here and see him again. Take care

Elaine

X

[Quickasyoucan]

I am sitting here in our local hospital as dad has had another bad infection. We thought it was the end but he has rallied enough to be discharged tomorrow. We have just had a long conversation with a lovely doctor about dnr and fast track care at home so although I will be with dad at home we will begin to have a daily carer and ramp up as required. Dad is still self toileting etc but his infection onset was v dramatic and I feel Doctor is gently telling us he may suddenly tip over the edge.

I have had a rough last week as my beloved jake my canine companion of 14 who had chronic pancreatitis and inflammatory bowel disease became ill with vomiting and tarry stools and the vet on ultrasound firstly told me he had lymphoma which pathology then said was infection but also a mass around his aorta. I had to push my flight back as this was day before departure. In the end I couldn't risk his stress and possible deterioration whilst I was away so had to euthanise him. I am devastated as I suffer from anxiety and he has looked after me for 13 years but I had to go and see dad. Then dad fell ill the night jake died so I had to move flight forward again. Life is not good at the moment but I hope that no one minds if I dedicate my post to Jake the best dog in the world 2003 -2017.

[Guest]

No one minds at all Quickly, any comfort in these times is a rare thing and we become very attached to the pets that are with us through thick and thin. No one thinks you are being any less caring for your Dad because you care so much for your canine friend, you must feel terribly upset and I sympathise. I hope you can think about the fun you had together, the good times.

We have remarked many times on here that tragedy seems to be relentless at times, as if life is storing it all up for us. I don't know why that happens, or what one can do about it other than share and shed a few tears.

For sorry to hear about Dad but glad he is well enough to come home and that you have arranged some additional help. I'm sure its the right thing to do. This is an important visit so try and get the very best from it, lots of cuddles and as much enjoyment as you can muster.

Much love Quickly

M xxx

[Proud Wife]

I think that's a lovely tribute to your faithful and loyal Jake. I am sure the stress of your separation would only have added to his suffering so you've done the right thing. I am just so sorry everything is happening at once.

Pleased that your dad can come home. Again, this is all part of the rollercoaster that is PC.

Take care Quickly (I do love that abbreviation!) xx