She's gone

[InfoForMum]

Hello lovely folk,

In true style I'm probably not going to be brief here and I'm unlikely to pull punches about what happened, so if feeling fragile, perhaps leave for another day.

This is the very last chapter of our story. The story I've written with no respect for brevity elsewhere here. You can find the second chapter of our story via the link below and that links to the early days when Mum was first diagnosed.

http://forum.pancreaticcancer.org.uk/viewtopic.php?f=28&t=1168

Those who've been kind enough to follow my Mum's journey have probably noted my long absence and guessed what's been going on. After a 2 week hospital stay to put right a bout of sepsis caused by a bile duct stent blockage & infection, Mum came home with Becky and I. Her mobility had improved to walking short distances with a stick (against a backdrop of walking a mile with the dog every morning pre-admission). Sadly, due to spending a week only semi-conscious just on IV fluids, she had lost another 5 kilos (10 kilos since January).

We got occupational therapy kit sorted, district nurses coming in occasionally and intermediate care organised morning and midday visits. Her appetite came back to the point where she was hungry and enjoying 3 very small meals and snacks.

On the 6th morning home she got out of bed and felt dizzy (she was sleeping upstairs in her bedroom and managing the stairs well with the new rail). She hadn't told us that, but when her carer came in to help her shower, she had a significant stumble (she was leaning down to try and clean the toilet of all flipping things). She then complained of a headache.

It became obvious over the next few hours that she had had some kind of bleed as she had significant left side weakness and balance issues, although the doctor (called at 8.30 am who eventually turned up at 2pm) didn't think stroke as she was missing other classic symptoms e.g. facial lopsidedness, wonky tongue, mental confusion, mixing things up.

To anyone thinking we should have raced her to hospital, we agonised over that. The effect was cumulative, the doc said "not a stroke" and Mum had come home less than a week before with an even greater horror of being re-admitted. Finally and most importantly, nothing could have been done (possibly in the first 1-2 hours, but not later).

She actually came downstairs that day and was about the lounge and kitchen with some wobbling, but after Becky managed by the skin of her teeth to get her upstairs that night she stayed upstairs and got progressively weaker.

The next 11 days were the hardest I've ever been through for her and everyone else. We got a commode as neither Becky nor I were going to let anyone force Mum into sanitary ware after she said an emphatic no to it (remember where she'd been just 24 hours before). At this stage I don't want to go into too much detail, yet to work it through in my head.

By the Thursday she had breakthrough pain, was struggling to eat and the two person job to get her onto the commode was getting tougher and had effectively imprisoned my sister and I in the house in case mum needed a wee (all but one sweetheart carer wanted her catheterized as helping her was WAY outside their manual handling guidelines).

On Thursday night Becky broke down and crystalised what I was already feeling - the situation was unmanageable. Mum didn't want to have and would probably not have survived another trip to hospital, NHS, Marie Curie and MacMillan combined could only offer periodic night cover and 4 visits a day (a huge help, but still not enough). When we asked all concerned, including mum's newly allocated social worker, no-one knew of any private care or nursing firms that could help. We were trapped, isolated and scared.

Thank god for Google. After one false start I got in touch with Consultus Care. I fully expected, at 5.15pm,to get an "our offices are closed until" message, but no. Lovely lovely person picked up the phone, listened and said "yes we can help", transferred me to the nursing co-ordinator who listened and said "yes we can help and I'll start phoning possible nurses straight away and I'm on call tonight so I'll take your number home and make a few more calls. If I can't sort something tonight I'll hand over to my colleague and she WILL ring you tomorrow morning".

For clarity this is a private live-in nursing & live in carer agency. They help people with post op recuperation at home, at home care for chronic conditions and palliative care. A week of 10 hour shifts with 2 hour breaks and 12 hours off costs approx £1500 allowing for night calls and other extra hours. I don't know the cost for live-in care as opposed to nursing. Continuing NHS care will contribute to it, but it's so hard and slow to qualify for that. Any PIP or attendance payment can also be put towards it, but in our case it was credit card time.

There are other agencies out there, but I can't talk about them because I didn't call them and I wanted to share all this as I had no idea this was available and thought others should know about it. These guys can't advertise via doctors and hospitals and the NHS are understandably wary about being seen to recommend any private outfits.

I followed up my initial call at about 8pm saying the need was not just urgent it was super urgent as Mum threw a temperature and started having acute breakthrough pain that oramorph on top of Fentanyl patches couldn't deal with. Doctor was called, but Becky and I could not be at home alone with mum begging for more pain relief, waiting hours for on-call docs/nurses to arrive, not knowing what was best to do.

At 10pm we got a call back. Carol Anne, had agreed to come to us and was going to set off from Brighton first thing in the morning and be with us about tea time. Suddenly we were not going to be facing a weekend of little or no district nursing and GP cover alone.

Mum deteriorated fast from this point. Mum was negative for a UTI, but still had the new pain and temperature. The out of hours doctor didn't come until midnight and although a lovely Marie Curie night nurse tried to help Mum and us cope, it was horrific until he arrived. We had the anticipatory meds in the house (stuff commonly needed at end of life that I'd hidden not expecting to need). He gave her stat diamorph and midazolam which let her sleep and prescribed antibiotics that I picked up at 8am the next day.

Over the next 24 hours she had more breakthrough pain, her core strength deteriorated to the point where she couldn't be put on the commode and she stopped eating. That night was like living hell. Doctor called again, more breakthrough pain relief. A catheter offered and refused by Mum. A syringe driver discussed as Carol Anne wasn't allowed by our PCT to give the stat injections (only 40 years nursing experience gone to waste) and there were only 3 on-call nursing staff covering a large rural county meaning possible 2+ hours wait with Mum in uncontrolled pain.

Nights were horrid, days were better. Horrible decisions. Why didn't we take her to hospital? Because she didn't want to go. What was helpful, right and kind was changing hourly.

With no food and little to drink she weakened fast. On Sunday, we got her dog Barny upstairs (he'd never been an upstairs dog). She got a lick and a wet nose under her hand and told him to sit and got obeyed, then me, my sister and my husband took 90 minutes getting him downstairs. We were being kind, but soft begger got so scared at one point he actually sat on my lap and put his head under my arm for a cuddle, all 47 long haired kilos of him! Finally put his bed on the stairs, gave him a hefty friendly shove and "sledged" him down.

Relatives came to see mum the next day. On Monday afternoon she had a long chat to a hypnotist friend of mine about past present and future and seemed to get some real peace. My friend then stayed another 2 hours longer than planned and spoke to everyone else. A desperately needed injection of calm.

Tuesday morning after a horrible night mum agreed to the syringe driver and catheter. It was a very low controlled dose and Mum was able to communicate for a few hours, Carol Ann told us she thought we were in the last 72 hours later that day. Mum didn't agree. She held on, reacting to us chatting and camping 24/7 in her room until her body finally let her go at 4.20am Saturday 17th May with Becky and I holding her hand and listening to the dawn chorus.

For the last 24 hours I imagined her standing at the end of the bed, looking down at the scene saying "I'm so sorry girls, there's bugger all I can do about having such a strong heart, but I'm stuck tethered here until that winds down". True enough, after being unresponsive for that last day, at the very last moment she opened her eyes slowly and fully and turned her head to look over Becky's shoulder. She saw where she needed to go and went.

It was intense, incredibly, incredibly hard, but also peaceful, awe inspiring, love-filled and liberating. We were not shocked by her breathing changes and other reactions as Carol Anne had counselled us both.

She also made us tea, made us food, gently and respectfully took care of Mum's nursing care, acted as a gatekeeper for kind, but overwhelming callers and protected the bubble of calm my sister and I had created to live in during that time.

We, quite simply, could not have helped mum, ourselves or each other to get through this without her.

And now the life before has stopped and for Becky, me, our men, our young kids, her sister and her friends, the life without her hasn't gained any shape yet.

That's why I called this tribute to Mum that Becky and I put together "Pausing":

http://infospectives.me/2014/05/18/pausing/

With 20:20 hindsight either her GP, her oncologist, Mum or I could (should?) have pushed for a proactive stent replacement as hers was 8 months old(shelf life is only around 4-5 months without significant increased risk of blockage). Mum had had lightening stools and darkening wee and had a doctors appointment where bloods were taken. In the end either those results weren't checked, or somewhat iffy liver results weren't treated with urgency because focus shifted to an oncology appointment to discuss her new terminal diagnosis and what, if any, on-going interventions she still wanted. Within a week she was admitted as an emergency with previously undetected jaundice and the infection.

Others should note the need to keep a careful eye on stents, but I'm not torturing myself about that. I hadn't taken my foot off the gas looking out for Mum and keeping overall oversight of her treatment, results and plans for the whole preceding 8 months. I was exhausted and while this was brewing, things were more stable and I, with mum's agreement handed the reigns back to her for a while. Coulda, shoulda, woulda - not helpful and would not have changed the fact I was going to lose her.

We will beat this bastard disease. Things will get better and Mum wouldn't like me to forget that. I also won't forget the forum family and nurses here who gave both Mum and I the strength to take this trip without ever losing faith the fight was worth it.

Love to all

Sarah

Edited May 27, 2014 by InfoForMum

[Slewis7313]

Dearest Sarah, I am so sorry to hear your Mum has lost the battle with this damned illness. The girls and I had become concerned with the lack of updates and assumed you had more pressing and important things to focus on. Your Mum, like yourself was obviously a real fighter, but with Pancreatic Cancer the odds are always stacked against you/us. We will all be thinking about you over the next days and admire the determination to carry out your Mum's wishes to the end of her journey.

Take care

Steve

X

[Bowie]

Dear Sarah, I'm so sorry to hear the sad news of your mum losing her battle against this dreadfully cruel and evil disease. I'm sitting here crying, your words are so beautiful and helpful, the stuff about a private nurse; I haven't even dared think about James not making it and still can't, I couldn't go on without him. My thoughts are with you and your beautiful children. Fiona X

[Dfarmer]

Sarah

I know how hard you and your mum fought and I'm sending you lots of love during this time. Never have regrets you did what was right for your mum. It's now 9 months since I lost my mum to this vile disease and I can't tell you it gets any easier but the fun times that you shared start to be the ones you remember rather than the final days although there are times when I relive it all.

Thinking of you and your family

Dawn

X

[Didge]

Sarah, sorry to hear the news but I actually found your post quite beautiful even with the grim times before your mum finally left. When you have that protracted 'leaving' it can be quite epic. I will be thinking of you.

Didge x

[EmmaR]

Oh Sarah just no words to make it easier just know i'am truly sorry and thanks for your past help to all of us your forum family ..please know you did you very very best for your mum .

Take care much love to you and all your family .

EmmaR xx

[LMD]

Dear Sarah

So very sorry to read your sad news...

You did everything you could to help your mum (and by posting on here have helped so many others affected by this cruel disease). Please take care, sincere condolences to you and your family

With love

X

[PCUK Nurse Jeni]

Dear Sarah,

Echoing everyone's sentiments.

We are so sorry for your loss, after such a brave "battle" with Pc. You kept many going yourself.

Please accept our condolences, and we are thinking of you at this sad time.

Jeni and Dianne, Support Team.

[jay]

so sorry Sarah, thinking of you,

love Jayne x

[Cathy]

HI Sarah

I am so very sorry to hear of your Mum finally succumbing to this disease and to hear that, even in this day and age, it was such a nightmare for you to get the treatment she needed. Well done you on managing to get the care and support you all needed.

I completely empathised with the hospital dilemma. Jonathan said after he was last discharged from hospital that he would die if he had to go back in and, as things transpired, he would have. His wish was not to and he didn't but it is a TOUGH decision to make yourself. But I believe the right one for our loved ones.

And, yes, hindsight is a wonderful thing but remember this, that 100% of the time you did everything you possibly could, considered and informed and aimed at doing the right thing for your Mum. I hope you can take comfort from that.

Thinking of you in the days and weeks ahead

Cathy xxx

[nikkis]

Lovely Sarah,

I am so very sorry to hear your Mum has lost her battle. The two of you have clearly been a force to be reckoned with, but this disease is relentless, and seems intent on taking the bravest, most beloved people from us. So glad to hear you got the support you needed in the end, but it is sad that this was another battle you had to wage. I couldn't agree more with Cathy, that 100% of the time you did everything you could, so please try not to beat yourself up, thinking you could have ever done more.

Please get in contact if you need to let of some steam at anytime. Thinking of you, your sister and your families,

Love,

Nikki

[Charney22]

So sorry to read about your mum my thoughts are with you

And your family . You have been amazing in your fight for your mum

Such an inspiration to everyone on this site.

Big hugs. Cheryl x

[belgrade]

Dear Sarah,

I am so sorry to hear about your Mum, another victim of this awful disease. Small comfort I know, but I don't think anyone could have battled more than you have, to try to get the best care possible. This will inevitably have taken it's toll on you and your family so be kind to yourself. My thoughts will be with you.

Take care,

Hilary

[Janiebobs]

Thinking of you, your sister and your family's at this sad time. You have been an amazing example to us to all, in respect to how you supported and helped your Mum and also in the fight to improve the outcome for others with the diagnosis of PC. Thank you

Jane

[RLF]

Ah Sarah, I knew I shouldn't have read this till I got home from work, I'm so sorry and feel horrible, tearful, devastated. Though I never knew your mother (or you for that matter) I know we shared the same drive to do whatever we can to help our respective PC sufferers. Reading that was almost too much to take and I can't bear the thought of it being something we might have to face. My thoughts and love go out to you across the internet and hope you feel some...relief maybe? That at least she isn't suffering any more.

I want to say so much, but I don't really have the words so I'll be very British and just say chin up and hold your head high as you should be so proud of both of you for everything you have done over this journey of yours. You didn't fail her at any point, your mum was very lucky to have you fighting her corner, I hope I have someone like you if/when I need it!

With much love

Rob

x

[Guest]

So sorry for your loss Sarah. You were a true warrior when it came to fighting your mums corner, and everyone else's corner, come to think of it. You went the extra mile. I bet your mum was so proud of you, just like we all are.

I imagine nothing makes you feel better right now. But I hope that in whatever time down the line, you can take comfort, from knowing how much you did for her, gave up for her, and stood by her. She'll be looking down on you with so much pride.

Please stay in touch here.

Leila xxx

[InfoForMum]

Thank you so much for all the kind words folk. It really does help. Rob, I'm sorry I made you emotionally messy at work, it touched me how much you care for us, a bunch of strangers, but I shouldn't be surprised, because I feel so invested in your story and many others. At some point it would be good to get together and see for myself how well your man is doing and to offer some in-person hugs to some others living with and living without loved ones who also battle so hard.

The funeral was on Thursday. It was a lovely service. We, as a family, have faith, but not religion, but her sister and brother-in-law are very involved in the church. The minister trod that tightrope with great consideration and kindness, making everyone feel they could absorb and start to deal with Mum's loss in their own way.

We had "All things bright and beautiful" and "Morning has broken" as hymns and insisted they were played at the right tempo and not as a dirge. It took the congregation somewhat by surprise, but most caught up after a few lines. As always the key was iffy for Becky and I as we have pretty low voices so we flipped up and down an octave to suit ourselves and had fun doing it.

Both of us stood up and said our words. I had a gulp and pause at one point and Becky managed to get through hers tearfully, but clearly. I have copied hers below. Mine was a 10 minute run through of an amazing life with my deepest feelings at the end. Becky's, as you can see was a beautiful, brief and incredibly powerful window into how Mum stays in her heart:

.......................................................

How to describe my Mum? What a painfully impossible task, to sum up the woman who was there forever and now is gone.

I will try.

She was roller-skating in the car port, splashing in the paddling pool, dancing through garden sprinklers and hunts for frosted spider webs.

She was snowball fights and bike rides, tips to the beach and walks in the wood.

She was fabulous Birthday cakes, late night homemade Halloween costumes and lazy Saturday mornings.

She was arguments and cuddles, shouting matches and belly laughs. She was security and freedom, she was worry and trust.

She was red wine and cigarettes and putting the world to rights long into the night. She was family, she was solitude.

She was supportive yet realistic, she was silly and clever. She was business like and childlike.

She was fearful and brave, she was a true fighter yet so graceful in defeat.

She was my Mum…she was not perfect and for that reason she was also my friend.

I know each of you will have you own mental scrap book of Mum, some long, and some short; that was mine.

Over the last few days, each of these moments and many more have come to my mind, bringing with them equal measures of happiness and pain. In time I hope the pain will fade, but whilst it remains I will strive to accept it, as I hope each of you will as to ease the pain is to wish away the happy memories and those memories are a precious gift from my Mum, my friend.

Night Night God Bless

...................................................

My sis never ceases to amaze me and has made life livable through this. She is also leaving to go back home to Teesside this afternoon. We will see how I fare then.

Only a couple of days before the funeral we worked out the music Mum should exit to. "Let it be" by the Beatles. Mum was a great fan. Neither of us realised how utterly perfect that was until the opening bars chimed in, then we were lost. Just enough tissues to see us out of the church plus a grin at each other when she finally went through the door to the guitar solo.

Then everything turned a bit "Clarke-farce". Our family have always seemed to manage to get into unusual scrapes and today was no exception. We arrived at the small graveyard round the corner from the church. Other mourners queued to get through small gate behind us and the coffin, but as soon as we made it inside we realised something was wrong. Wordlessly Becky and I pointed to the green baize covering the dug grave, then pointed to the plot where my father WAS buried....

It only took a couple of seconds for Becky and I to work out nothing could reasonably be done so I turned to everyone and said "It appears they've dug the wrong hole, shall we all go back to the house and get a drink".

At this point the crowd was split. Becky and I, the younger crowd and Mum's closest friends were all trying to stifle a smile. Some of the older contingent, including her sister and brother-in-law were slack jawed and appalled.

The main and most important fact is that my father would have found it utterly hilarious and my Mum, after trying for an appropriate reaction, would have also laughed her socks off.

I had to put the awful fact they'd dug someone else's grave up to one side. It was in no way shape or form due to anything that was within our control.

It certainly made conversation at the house easier. Pretty much everyone except her sister thawed and had a chuckle and I did my best to comfort her.

At 5pm, 2 hours after the first attempt, we went back and the burial was no less meaningful because of the wait.

We were met afterwards by an exhausted and totally mortified grave digger, who we ended up hugging as you can bet it wasn't his fault either.

And so it's done. We have some lovely things written in memory books we put in the house. Everyone took and wore a purple ribbon and we gave all the right people a chance to say a proper goodbye. Not to mention the creation of a family legend, which I still can't quite believe really happened.

Take care all and no doubt I'll be back around soon.

Sarah

Edited May 31, 2014 by InfoForMum

[Guest]

Just wanted to say, Beckys poem was beautiful. Made me cry. Lovely. x

[MSH]

Sarah,

I'm just catching up with the forum after a few days away.

Just to say I'm very sorry for your loss, my condolences.

Mark

[J_T]

Just caught up with this thread and must say, lots of your OP resonate so much with me.

I am so, so sorry for your loss Sarah. Look after yourself.

Julia x

[Dollysdaughter]

Hi Sarah, I haven't been on here for a while as going through a bit of a denial phase I think, but saw that you had lost your mum and just wanted to say how very sad I am for you. I hope some small shreds of normality are starting to form again for you and send you lots of love,

Sara xx

[Amanda J]

Sarah,

I am so sorry to hear about your mom. You fought every step of the way to help with your mom beat this thing you were amazing and should be very proud. Your sister's reading was just lovely. I am absolutely sure yours was equally as fantstic.

I wish you all the very best and hope as each day passes by with all the lovely memories you have it gets easier for you.

Love

Amanda

[sandraW]

Sarah, sorry I have not replied before, we have been away, so so sorry to hear of the sad loss of your beloved Mum. You did everything possible to help your Mum in her brave fight against this terrible disease, you were absolutely amazing and you helped so many of us carry on believing.

It is not easy being there when a loved Mum dies, mine was 96 years and 1 day when she finally left us after a short 6 week illness, she too had a strong heart but left us peacefully, with my sister and I holding her hand.

I had to smile when I read about your hiccups at the funeral, you coped in your usual way,with a smile and more worried about the poor man who had dug the grave than yourselves.

Be kind to yourself, and take good care love to you and all your family, and when. and if. you are ready please pop back and give us your slant on our posts sandrax

[InfoForMum]

Thank you everyone for being so kind and thoughtful. I'm back a little more often now and it's helping. The numbness has started to wear off a bit, which is making me notice stuff more, but making it harder to sort the stuff I notice out...if that makes sense.

Untangled some of my messy head into a poem (cringe! I know, but it's a habit I can't break

The post blast pause, before the screaming starts

Not silence. Grief’s cacophony. It numbs then breaks your heart

Anguish fades to whimpers, hours stretch into days

Still the loss is shapeless, just in pain a million ways

A day becomes a week, then a week becomes yet more

Churning out the niceties, others’ grief a sapping chore

A different kind of quiet comes, dark and full of fear

Them-less house, map-less next, drowned in floods of tears

The month becomes another month and still it’s out of reach

Ambushed when you least expect. A stealthy vicious beast

Still crushing, but less often, a small unnoticed change

Inside your head their space is being gently rearranged

Then it happens, spotted later, as you're lying there in bed

Twenty four whole hours without them passing through your head

First arrives the awful guilt, the fight to not forget

While knowing deep inside that it’s a process to accept

At some point comes a future and it's mostly about you

Their memory informs each choice, but this is really new

Reclaiming things your love had made you compromise away

Using all they gifted you to build some better days

Edited June 24, 2014 by InfoForMum

[Slewis7313]

What an amazing poem Sarah. It must be difficult to come to terms with your loss, but the manner in which you are still able to describe and continue to share the journey will no doubt reflect of other's experiences and be of support to those heading down that road. I particularly like the fact that your Mum will continue to influence your future life and decisions.... A sign of your love and respect for her.

Take care and thanks

Steve

X