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Timelines and uncertainty


Essem

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My 93 year old mum has been “unofficially” diagnosed with advanced metastatic pancreatic cancer. I came from Canada at the end of September to discover that she had been suffering from bowel issues since August, seen the GP and had a phone consult with a colorectal consultant who had offered a colonoscopy which she had refused. She felt very sick one evening and I got her in to see a gp in a few days (Oct 14) who fast tracked referral and put her on daily Cosmocol. We saw a colorectal consultant on Oct 26 who felt it could be a case of fecal impaction and arranged a ct scan within 3 days on a Saturday with no radiologist present to give us results. Two weeks later we received a call from the hospital to book an appointment with another consultant. At that point we had no follow up communication from the first consultant (still no word from first consultant ....) or the gp. I searched for the new consultants bio to discover that he was a liver/pancreas consultant who specializes in metastases! I quickly called and spoke to the duty gp and she was able to look at the ct scan online to discover a mass on the pancreas, something on the liver, bowel and left pelvis. The gp had heard nothing from the first consultant either. What a shocking way to learn about something this serious. I have been the one to tell my dear mum that what she has is not fecal impaction and looks like cancer😔She is a totally with it, fiercely independent woman, lives in her own home with minimal caregiving  and is very stoic. At present she has few symptoms: decreased appetite, bowel issues, occasional mild abdominal discomfort, fatigue.


Sorry long, rambling tale. This site is very helpful and I spoke to nurse (Jeni) yesterday who is amazing. My dilemma is this. I want to be with mum in her time of need. I doubt given her age etc they will offer any form of treatment (we see the liver/pancreas consultant tomorrow). I am an only child with some cousins around but they too have elderly parents to support. Timelines seem to vary so much (4 days to 1 year I’ve read so far....). Given that her current symptoms are not severe do I increase the caregiving and make a quick trip back to Canada to sort things there and return or do I stay....? I know you cannot decide for me but any input would be valued. Thanks for reading.

 

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Dear Essem 

I'm so sorry to hear of your dear mother and her recent diagnosis. I hope the Consultant's appointment was able to provide you with a clearer prognosis and/or at least a plan of care for your Mother in the weeks ahead. Time is often not valued at an ' early diagnosis ( I feel anyway) as no one wants to even consider it is necessary to think of ' time'. There is never enough time during any illness of our loved one's condition. I recall I thought Id always have a ' lot of time' ahead with my brother after his early diagnosis, as to think of him leaving me not being an option at all. 

But of course our time did run out. I was privileged to have spent all of his early symptoms and length of treatments with him. We sure filled in a lot of precious time, chats and sibling memories. Drives out to our familiar old haunts where we grew up. I hope you get your time with your mother. I'll be thinking of you. A lot of people on this site will read your messages. They understand what you are experiencing. 

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Thank you. The consultant was very gentle in explaining the dire situation (advanced pancreatic cancer with metastasis throughout abdomen). Chemo was offered but with warning that quality of life would be severely impacted with no guarantee and only minimal life extension. Mum has rejected it. Because the current situation is so unpredictable I have decided to stay put. At this time mum is surprisingly experiencing only mild symptoms. My focus has been keeping her as comfortable as possible, spending time together and chasing down referral to palliative care. 

Edited by Essem
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My brothers Drs surgery gave him a home 'care team' Few lovely exp nurses, with 24/7 telephone contact numbers. He had few symptoms,just  odd back pain and Creon tablets assisted in his digestive daily trapped wind. The Nurse came weekly to the house to 'gauge' his health and talked over with us all our concerns. The team set us up with bath aids and offered all kinds of mobility furniture step by step. He had pain sleeping flat which he was able to self medicate and take over counter pareceptomol tablets to get him off to sleep. More Symptoms arrived with a fluid build up on his tummy and in both legs which exhausted him, but he still remained okay and comfortable but walking was difficult. The drs supplied (on our req on advice of his consultant) bottles of protein shakes). Creon was a great help and assisted him with retaining a small appetite. He was offered all times food in every variety we could think of. whatever he fancied. He was offered palliative chemo but he refused that offer as he felt 'fine' at that time and needed to be as well as he could, knowing that the progress (by a scan) had spread to his abdomen and lungs. He often became breathless at night so required high pillows. Each person is very different in stages on reading of other poor sufferers. I'd say that build up of fluid became overwhelming. 

I'd try and get your Mam out into a car on her well days and give her the much needed change of scenery rather be confined to the four walls. it brought great respite to my bro and even in his PJs and a blanket he loved getting out and into the car. 

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Thank you Skippy. We are now involved with Palliative care which is reassuring. Pain seems manageable with paracetamol/ibuprofen right now. One of my daughters is arriving today for a few days so mum is looking forward to that. We are hoping to take mum to a local garden centre to see all the Xmas stuff tomorrow. Trying to take it day by day.

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  • 3 weeks later...

An update to my previous post. We managed a church service and also a drive in the countryside to a lovely garden centre. Mum was able to control pain with paracetamol until Dec 7 at which time she progressed to Oramorph (liquid morphine). On Dec 9 she no longer felt like eating and that was her last day getting dressed and coming downstairs. She slept for most of this last week. I called the nurses on Saturday since the Oramorph was no longer enough at which point she was given an injection of morphine and something for agitation. From then on she slept peacefully until yesterday morning at which point her breathing stopped. I am so glad that I decided to stay. The short time we had was precious. Thank you for the support of this site and community.

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Nadia - Support Team

Dear Essem,

 

So sorry to hear of Mum's passing, especially at this time of year when we are so often with family.  It sounds that you had some lovely moments with Mum even recently with the trip to the garden centre, even countryside drives are special and not to be underestimated.

 

It sounds that Mum was peaceful in her last days, I am sure she felt your presence and love during these last days and hours. A precious time for you to be with Her too.  Hoping Mum is at peace Essem.

 

Take care of yourself over the days and weeks ahead.  I hope you will be with Family or Friends over this Festive Season and be able to reflect on precious moments spent with your Mother. 

 

Heartfelt thoughts to you and yours Essem.

 

Administrator

Pancreatic Cancer UK. 

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