My beautiful mum - a timeline

[Dfarmer]

If, like me, you want to know what’s going to happen to someone with pancreatic cancer, then read on. I will try to be as honest as possible and give dates as accurately as I can. Of course all pancreatic cancer patients are different and as some background my mum’s symptoms were probably affected by the location of the tumour – in the tail. So here goes…

July 2012

Mum referred for endoscopy and colonoscopy due to unexplained anaemia. All clear 9how I wish we’d pushed for furthertests).

September - October 2012

Mum visited GP a few times with back pain. Put down to muscle pain and general wear and tear.

November 2012

Mum visited GP due to lack of appetite and losing 1 and a half stones in weight. GP referred her to hospital.

2nd December 2012

Mum visited hospital consultant. Sent for CT scan.

13th December 2012

CT scan.

21st December

Consultant secretary phoned mum to say could she come and see Dr on 27th December. We knew then something was wrong.

Christmas Day

Worst Christmas ever. Appointment hung over the family. We all knew something was wrong – probably cancer, but where?

27th December

Appointment with consultant. Pancreatic cancer on tail 4.5 x 2.6cm. Multiple metastases on liver, spleen, some nodules on right lung. We were all devastated. Consultant then went on to tell us that there was no surgery available and that the only chemo would be palliative. He told us it was the worst cancer and that it was in the worst place as it was producing no symptoms.

31st December

Liver biopsy to confirm.

4th January 2013

Meeting with specialist nurse. Biopsy confirmed pancreatic adenocarcinoma.

11th January

Meeting with oncologist. Offered mum gemcitabine chemotherapy. Asked about any others in combination. He didn’t think mum would be strong enough. Said the gemcitabine could give an extra 2 months. Did mum want to go ahead? Mum said ‘i.ve got to do something’.

23rd January

Chemo started

Mum did really well on the chemo. She didn’t lose her hair, was not sick, didn’t have diarrhoea. However, she was more tired and by Day 15 of each cycle it was always borderline whether she would have the treatment due to her blood count. Some weeks she would be ok, others she couldn’t have it. She had cellulitis 3 times, but this was cleared with antibiotics. Mum had 2 blood transfusions over the course of her chemo. Tumour marker started at 90000 and by the end of chemo was 2500. Mum ate really well throughout chemo and by the end of her chemo had put on 4 stone, weighing 14 stone 6!

April 2012

Second CT scan. Scan showed that tumour had grown slightly. Some of the tumours on the liver had disappeared, some had shrunk and some had grown. Oncologist wanted to continue as tumour markers were greatly reduced and mum was putting on weight.

Mum diagnosed with lympheodema.

19th June 2013

Mum had last chemo. 6 months of gemcitabine. Oncologist said review in 6 weeks.

3rd July

Suspected blood clot on the lungs due to difficulty breathing. Scan done and no clot.

28th May

Mum started on morphine for knee pain (she has always suffered from arthritis)

20th July

Mum feeling more poorly. Not sleeping and pain in her back – the same as the pain she had before diagnosis

22nd July

Saw GP. Increased morphine for back pain.

30th July

Mentioned stomach swelling to Macmillan nurse. She would monitor. Spoke to her about going on holiday. She said mum wanted me to go and that she would call and see her more often.

31st July

Mum well enough for me to go on holiday.

4th August

Facetimed mum. She looked well and was happy to see us.

6th August

Macmillan nurse saw mum again. Stomach had swollen more. Arranged for Macmillan Dr to see mum.

7th August

Macmillan Dr came to see mum. Diagnosed fluid in tummy. Mum agreed to go to hospice to have fluid drained.

8th August

Mum went into hospice. Started to drain fluid.

9th August

Facetimed mum. She looked well. Drained 8 litres of fluid. Pain seemed to increase. Wanted to keep mum in overnight to try and get the pain managed better.

11th August

Facetimed mum. She looked poorly. Spoke to my sister and asked whether I should get a flight home. She said that mum was just tired and the nurses were hoping she would be home tomorrow, still trying to get on top of the pain.

14th August

Got back from holiday. Spoke to dad. Mum not home and dad says she’s very poorly. Syringe driver had been inserted. Still in a lot of pain. Mum still eating 3 meals.

15th August

Went to hospice to see mum. She was very tired but was able to listen and smiled about things. My little boy and girl came to see her. They told her all about their holiday. She did lots of smiling. She was able to give them both a kiss when they left and blew them both a kiss as they went through the door. After they’d gone she said, ‘I’ve been waiting for them’.

Social worker and senior staff nurse came to talk to me, dad and mum about her coming home. Mum was listening but had her eyes closed. She didn’t say anything else about coming home after pleading all week about coming home.

Spoke to the senior staff nurse in a separate room. She thought mum had deteriorated very quickly and they didn’t know how quickly she would continue to deteriorate. When I asked her how long she thought mum had left she said weeks. I thought this was a bit ambitious after experiencing my mother-in-law dying from cancer.

At 1:30pm mum slept. She had had 2 sips of soup at lunchtime. Nurses had topped up her pain medication (Oxycontin) as she seemed to be in a lot of pain. Mum hated making a fuss and hated having tablets or medicine so when she nodded that she had pain I knew it was bad.

Mum slept the whole of the afternoon. I took dad home and then went back to the hospice. Mum opened her eyes and said to me ‘What are you doing here?’ All through her cancer journey she had worried about me being away from my family so this was the exact thing I was expecting her to say.

Mum woke once more that night to say she needed her shoes to go to the toilet. She had been unable to walk to the toilet since yesterday. Obviously she was starting to get confused.

Later that evening, her priest came to give her the Sacrament of the Sick. She was able to open her eyes at certain points and even managed a smile when he talked about her beloved Stoke City (she’d been a season ticket holder for over 50 years and only stopped going when she started to feel poorly in October 2012).

Mum was moved into her own room that evening, as me and dad had decided she should stay where she could get the 24 hour nursing care she needed, unless mum said otherwise.

I stayed with mum all night and she was not very comfortable overnight, so she was given 3 hourly top-ups of her pain medication. They also gave her something to calm her down and stop her being so agitated. I was able to tell mum all the things I wanted to and told her it was ok to go and be with my auntie, I’d look after dad and I loved her very much.

16th August

Mum didn’t wake up all day, when she did stir it was to show that her mouth was dry. We tried to moisten it with the ‘cotton buds’ but she didn’t like it. She kept reaching for her throat and touching her head; it was painful to watch and I felt so helpless.

The nurses had adjusted her syringe driver so she didn’t need any extra top-up during the day. However, when they tried to move her when administering care she was in obvious pain. She was also agitated and was frowning a lot and was teary. She was making awful groaning noises, which the nurses said was her agitation and so gave her a sedative.

I stayed with mum all night and she did not stir at all. I again told mum all the things I wanted to and told her it was ok to leave us.

17th August

My niece’s birthday. Mum’s breathing changed slightly at 8am and changed significantly at 11am – the dreaded ‘death rattle’. The nurses kept giving her injections to dry up the secretions, but these were not working. The saliva was pooling and every time she was breathing we could see it foaming up into her mouth. The nurses kept trying to get on top of it and cleaned out her mouth, used suction and continued with the injections.

The ‘death rattle’ went on all day. I just couldn’t see how she was still breathing.

Me and my dad stayed the night.

18th August

At about 1am mum’s breathing changing again. The rattle was still there but as she was breathing out she was making the most awful groaning noise. I read somewhere that this was because she was hanging on and was finding it hard to leave us

Dad had told me to try and have an hour on the campbed so I dozed off. At about 2:37am I woke up and noticed that the moaning had gone. I jumped up to see mum take her final 2 breaths. Dad had fallen asleep holding her hand and so I had to wake him up and tell him she’d gone. He just sobbed.

We stayed with mum for another 2 and a half hours. The frown that she’d had for the last 3 days had gone.

I have no regrets about mum. I’m so glad I stayed with her and was able to tell her how much I loved her and how sorry I was for the times I’d been a right pain when I was growing up.

I suppose I was expecting things to be different. I thought she’d lose her appetite and stop eating. I thought she’d steadily decline. I thought I’d know when it was going to happen. But in the end I believe mum did things her way. She wanted me to go on holiday, she wanted to see my children one more time and she didn’t want to die on my niece’s birthday.

Mum was a very different pancreatic cancer patient. She had no jaundice, continued eating and put on 4 stones in weight, so I suppose she was one of the lucky ones.

My mum was the bravest person I have ever known and I’m so proud I was able to call her mum.

My thoughts will forever be with everyone fighting this vile disease and their families.

Dawn

[J_T]

Oh Dawn, your mum was lucky to have you, beautiful girl xxx

[karen17]

Dawn you certainly did your mum proud..... the love you felt for her is so obvious in your post and she must have appreciated and loved you very much.

Take care of your dad and remember to also look after yourself.

Karen xx

[Cathy]

Hi Dawn

Thank you for having the strength to tell us your story. You did a wonderful job for your Mum and I'm sure she must have felt very proud of you.

I found your journey especially poignant as my partner also has the tumour in the tail of the pancreas and, like your Mum has (so far) not experienced jaundice or problems eating as others seem to have.

Thinking of you and your family.

Cathy xx

[pol61]

Dawn,

I cannot thank you enough for your honesty and bravery. It sounds like you were an absolutely wonderful Daughter to your mum, I am sure she was so proud of you, and I'm sure she still is - wherever she may be.

I face a similar challenge to you, my mum was diagnosed with T4 pancreatic cancer in June, she has bravely chosen not to have any treatment because she was told it might only extend her life by 3 months, and only a 20% chance of it working in the first place.

At the moment she is well, no pain, but gets very tired. We sit and wait for her to deteriorate, whilst being so so thankful for every day that she doesn't!

To have such an honest account of your mum's battle is just so important for us. Often we ask 'What's likely to happen?' and we're told by the Doctors, Nurses etc 'Well, everyone is different' - which of course is so true, but not massively helpful. It takes a kind and brave soul like you to help the rest of us.

Thank you, thank you. I wish you all the very best and I am so dreadfully sorry for your loss.

Polly xx

[laura]

hello dawn, i dont think we have ever "talked"? i havent been on here, posting, for some time, popped in tonight and your lovely tribute to your mum, really touched me, i am also so very sorry for your loss xxx

i first joined here in july 2010 [ i think], my hubby bri diagnosed feb 2010, wont run thru our story, though you or anyon4e else can access it clicking on my name.

suffice to say, bri is still here and reaqlly well, still has shrunken tumour had 19 months of gemcap. tolerated well

still gets very tired, but am so thankful that we have a good life together, we were given 6 months in may 2010!!!

we are looking forward to our 2nd cruise on 30th sept. i know how very lucky he/we are, but hope this gives some hope to others.

to anyone still posting that knows/ remembers me, i say hi and hope life is ok, debs u still around:? love and good wishes to you all laura xxxx

[marie souter]

Oh Dawn your story touched me so much I'm sitting here in tears, am so sad for your loss, I am caring for my mum on my own 24/7 and everytime she goes downhill and picks herself up again I am so grateful to have a bit longer with her, she was diagnosed easter monday with stage4 spread to the lungs, inoperable and didn't want chemo .. I assumed the same as yourself that the end would represent itself with loss of appetite, shes on her 3rd chest infection in 2 mths ... am very worried that this time she might not shake the infection ... but reading your story it gives me a better idea of what 'may' come... I am so pleased your mom passed away peacefully she sounded like a lovely brave lady and I am sure she was happy that you and your dad were there for her at the end .. I was there when my dad took his last breath and I am hoping to hold my mom as she takes her last breath too .. going through this as a sole carer I know how hard this whole rollercoaster is and my heart truly goes out to you .. god bless your mom and your family at this sad time xxx