Hi there

My mum passed away 2 months ago from Pancreatic cancer and your email reminded me of my own journey with mum. She was diagnosed in September 2020. Diagnosed as inoperable as the tumour was too close to the blood vessels to operate and given months to a year to live. The oncologist never mentioned the staging so I asked and looking back now, given the prognosis for Pancreatic cancer I think unfortunately the staging becomes irrelevant. It is sadly one of the most aggressive and unrelenting cancers. No doubt if you have read other stories of pancreatic cancer a lot of people seem to have lost love one within weeks from it being diagnosed. Mum made it 8 months.

she too started on chemo ) but ended up in hospital to be symptom managed and then chose to stop. It sounds like some of his symptoms could indeed be chemo related. Did the hospital offer to put you in touch with your local hospice whilst also going through chemo? I would ask if this is possible to get as much support as early as possible. I don't know what we would have done without the support of the hospice. Community care (GP and district nursing) has been sparse in COVID times. I cannot express enough from personal experience how having acces to community and inpatient support was so vital in a very isolating time and experience. They have the best knowledge of pain management and provide access for inpatient respite and counselling. It is a whole other world from hospital care and totally patient lead so I would whole heartedly think about bringing that support in to the family.

it has been the most painful and traumatic experience to go through and we had no idea what we were dealing with at the start of it all. Push for what you need as doctors are far from gods so don.t be afraid to question doctors and ask for what you need or to tell them that you feel unsupported. Getting the best care for your loved one and the best support for your family is paramount.

Hi [@zdbe]‍ 

Thank you so much for your detailed reply and sharing your story with me. I'm so sorry for your loss. It really is a horrible disease, especially how quickly it seems to take hold. I hope you're doing ok.

Our stories definitely do sound similar and have offered me some reasurrance for my worries. The hospital team haven't yet mentioned anything about the support hospices can provide but i'll definitely start looking into that. We've been put in touch with a Macmillan nurse who is doing a wonderful job but it does feel like we need extra support so thank you for the suggestion.

We're still waiting on the latest CT scan results. They should have been ready for today (scan taken last Saturday) so hopefully we'll have a better idea of how he's doing early next week.

Do you mind me asking how long your mum was on chemo for? Quality of life is a huge factor weighing on my mind currently based on how he's feeling.

Thank you again for taking the time to respond, it's much appreciated. 

Hello,

I have been through a difficult experience when my wife was diagnosed with pancreatic cancer that was inoperable due to the tumour wrapped around main blood vessels. We were told that is was stage 4 (which is not good) but hoped that Chemotherapy treatment would shrink the attachment to the blood vessels enough to enable to operate to remove the tumour.

The survival rates from pancreatic cancer are very slim and I agree with you that the family are in denial of the extreme seriousness of this cancer (as I was at the time).

Chemotherapy is definitely the cause of appetite loss, no energy, digestive problems, and sadly so many other side effects may occur that are common with Chemotherapy treatment  (the leaflets of what to expect are all available from the treatment centre along with great help contact phone numbers)

Suggest your partner and his sister/family need to take as much information as they can about pancreatic cancer and it’s effects as it may be a very difficult time ahead.

Well done you for posting your concerns.

Hope all goes well!.

Hi [@Macy2025]‍ ,

my mum only managed chemo for one week of her first cycle. She tried it so she'd have no regrets. As mentioned she ended up in hospital because her chemo symptoms were so bad. The chemo for pancreatic cancer is difficult and we were initially advised it could only give her a couple more months which I found hard to quantify what she.d have to endure. She chose to stop. Quality over quantity for her/ us was a better route.

we were offered palliative care alongside her starting chemo but we came under the care of the hospice as soon as chemo was not an option. As mentioned I don't know what we would have done without it as their community cancer nurses coming to the house was really our main support, given all other services were limited because of COVID. Mum was in hospital numerous times, both A&E and admissions and my only commfort was that she did not end up in hospital when she died. It's a whole other world away from palliative care. 
 

I would recommend looking at the pancreatic cancer.org.uk website and speaking to one of their specialist nurses. Be as informed as possible because I would agree with Colin. It has been one of the most difficult times of my life and sadly it it is an extremely difficult and unpredictable cancer.

best wishes