Our short journey

[norty14]

I've been reading these posts since my mum was diagnosed and I guess nows the time to share our journey

 

My mum has been receiving tests for diabetes since the start of the year. At the start of June this turned to sever abdominal pain and lack of appetite and so she was sent from the doctors to the hospital for further tests, just 24 hrs later she was told there was a shadow on her pancreas. The following days seem like a blur but further tests were done over the next 7 days and it was confirmed that there was a tumor on her pancreas that had also spread to her stomach. At this point we were told it was inoperable. This was around the 16th June this year. 

 

She had a meeting at the end of June that she was told that If she can keep herself strong, there was a very small chance they could shrink the stomach tumors to then allow the pancreas to be operated on. This gave my family hope but as the days went on mum was losing weight fast, she had no appetite, she was vomiting and was in constant pain so her GP prescribed her cocodamol! 

 

Roll on 4 weeks later (approx 8 weeks after the 1st hospital appointment) and we still haven't had an oncology appointment! It was scheduled for this week (10 weeks after diagnosis!) And that was set up as a meeting to discuss the options, not to start treatment. With something so aggressive as PanCan, the timeline is unforgivable!

 

Last week mum deteriorated so much, my sister rang around and managed to get her a palletive care nurse to visit the house who told us we should prepare for around a month due to how mum was feeling etc. Because we still haven't had the oncology appointment, it was hard work trying to get help as we weren't "on the system"! Our GP will be reported, when contacted he simply said, what do you want me to do?!?

 

So after mum saw the nurse last Monday, and we were told a month, mum took ill on Thursday last week and was taken into our local Hospice. She is still fighting day by day but ticks all of the boxes for end of life care. From June 6th to now, it's been 11 weeks. The level of care towards my mum until she went to the Hospice has been shocking! We kept getting told, there's just not enough oncologists to go around!! My mums sister was diagnosed with lung cancer at the same time, she has already recieved chemo and has all the support she needs, my mum however, has been left to simply work this out herself. She was scared of calling for help as she thought it might impact on the decision to offer chemo!! So she put her head down and tried to beat this herself without help.

 

I'm sorry this has jumped around on the timeliness, our heads are all over the place, but all we can do at present, is keep making memories with mum whilst she's still with us

[norty14]

Good morning all

Just an update on mum, after a short battle she is now no longer in pain as she slipped away on Tuesday evening just before midnight.

The care we recieved from the Hospice was unbelievable and the attention and dignity they gave her in her last few hours made it so much better for our family.

We now have a massive mum shaped hole in our lives that we will never be able to fill and the pain our family are feeling right now is already so hard but we are all helping each other along this journey.

From start to finish was approx 12 weeks. this is a brutal disease and for anyone just starting on their own battles, don't waste time, make memories and don't put off plans as this won't allow you to wait. 

This forum really helped educate me for what we were going through and I thank each and every one of you for sharing your own stories to help prepare families like mine.

 

 

 

 

[Support Team]

Hi there norty14

 

On behalf of Pancreatic Cancer UK and myself, I am so sorry to hear the news. I hope you and your family are doing ok, as much as you can be.

 

Thank you for taking the time to post on the forum too, your words and your Mum's story will help others. It is very much appreciated. 

If you need anything please remember we are still here for you and your family, both on the forum and on the support line 0808 801 0707.

 

Best wishes

Nadia

xx

 

[katew]

I am so sorry for your loss. This story is a mirror image of my mum. She is still battling. She wasn’t believed , has been ignored, left in A&E for 8 hours then told there was nothing wrong when in fact her tummy was blocked, abused in hospital and tomorrow she is going home from the hospice to see this out. In 3 months she has had one oncology appointment and now she is too ill for chemo. I feel devastated and angry!!

[norty14]

Well its been almost 6 months since Mum lost her battle. there are bad days and there are days that don't hurt as much. its kind of weird how i'm not one for writing things down, yet here it feels right? Christmas was tough as it was Mums best time of the year. we all pulled together to carry on her traditions and i made sure she had a solar christmas tree on her grave as she wasn't happy without the lights not being on at Christmas. although i know she would have been laughing at the way it was decorated! as a family we have taken to fundraising in her memory. i stepped in a boxing ring in november for the first time ever with only 8 weeks training and one of mums last days out was to visit the air museum at Coninsby so it was only right that my boxing name was 'the Lancaster bomber' as it was her dream to see it which she did. i also recieved a phone call this week offering me a place in the London Marathon representing the Pancreatic Cancer charity!! i  applied in July last year when mum was poorly, recieved the email in August to say i was unsuccessful whilst mum was in the hospice and so had given up on this year and so had signed up to run the manchester marathon instead.... now, i'm doing 2 in 7 days and with the colours of the Pancreatic charity on my chest! the fundraising is going to be tough but my family and friends have said they will help and i know my Mum would have been first in line had she been here.

it still doesn't feel real. i can be driving along singing and all of a sudden a memory will come into my head and it'll all come rushing back. But i know, she'll be with me all the way come April to get me over not one but 2 finish lines in her memory! #teampancan 

[norty14]

not sure if this is even allowed, so apologies if its not, but as i'm against the clock for the fundrasing target due to only just getting the spot, if anyone would like to show support to the Pancreatic Charity here is my link

Mum always said if you don't ask, you won't get

https://2024tcslondonmarathon.enthuse.com/pf/jon-norwell