Dad had Parkinson's for 11 years, he died of advanced Colon Cancer 5 days after diagnosis


#1

Hello,

This is my first post and a very long one apologies!

My father very sadly passed away last Monday 2nd July after being diagnosed with advanced colon cancer 5 days before, at the age of 72. He was diagnosed with Parkinson’s in 2007 and was relatively slow progressing. My brother was 15 and I was 19 years old when we found out. We didn’t know anything about this horrible illness, in fact we hadn’t even heard of it. My Dad reassured us that things would be okay as Dad’s do. I remember immediately researching when I got home and from then started to make sure I knew what was going on.

Everything seemed under control for the first few years, we started noticing that he looked a bit different facial wise and would have some bad days but nothing too awful, he was still driving up until end of 2014. Things were obviously more tough for him but he was walking with a stick, living life as normally as he could. Him and I went on holiday in March 2015 and I noticed that he was struggling more than I thought, wouldn’t sleep the night through, always tired, mobility more of a struggle, always constipated and in general he didn’t look well at all some days, others were better. This was all to be expected we were told.

Jan 2016 was when things got really bad, we were on holiday again and my dad really struggled with mobility, was very low, very tired, constipation, he cried one day and told me how terrible he felt in general. His medication had been tweaked slightly by a new neurologist and we thought it may be to do with this. When he got home he had a bad turn and was taken into hospital. He was in hospital for about 2 weeks with terrible confusion, terrible mobility, he was treated for a minor urine infection and was then sent to ‘rehabilitation’ for about 6 weeks where he was given 20 minute’s Physio a day and was bedridden the rest of the time. We were tearing our hair out as they wouldn’t listen to us that they were damaging him further by not allowing him to walk more but we also couldn’t send him home either as it wasn’t safe! He was then sent to a care home while we tried to sort out a care plan as we needed very specific medication times as my dad was now unable to do his own medication due to confusion plus he could hardly walk. The Parkinson’s nurse was telling me that dad was ‘stage 5 Parkinson’s’ and all this was to be expected but I would not listen. He has been driving a month before he was hospitalised, I know Parkinson’s progresses but not this fast. You trust doctors to test and look for problems when you are in their care, dad was 70 years old with an unusual dramatic turn in health and yet they put it down to a minor urine infection and natural Parkinson’s progression. They gave him a CT scan of his brain and said there was only ‘minor age related’ deterioration which you would think would justify more tests.

Between then and when he passed, my dad had multiple hospital visits with neurologists, GP’s and two-three more long stints in hospital due to falls and confusion. He was extremely constipated, tired, lost his appetite completely, lost about 2 stone in weight between September 2017 and May 2018- he spent 3 weeks in hospital March this year and on discharge were told told he was anaemic and this had been on record since his hospital visit two years before which we hadn’t been told so prescribed him iron tablets. Again we were told all this was because he was in his final stages of Parkinson’s. My dad lost a lot more weight, swallowing became very difficult, he’d gone from around 13.5 stone to 9.5 stone in a year. He moved into a Care Home as we had no choice but to believe everyone and that this was Parkinson’s. The Dr there requested that my dad have a CT scan of the abdomen/chest when he looked over my dad’s medical notes- this was then denied by the hospital. He made us an appointment with the gastroenterologist who also asked for him to have a CT scan of chest, abdomen and pelvis due to raised CRP and ESR level (seen months maybe years before, my dad was always put on antibiotics for an ‘unknown infection’), constipation, weight loss and anaemia. My dad had the CT scan on Friday 22nd June, on Wednesday 27th June we found out he had advanced colon caner that had spread to liver, most of his lymph nodes and pancreas and that palliative care was our only option. He died in mine and my brother’s arms Monday 2nd July, 2 weeks before his 73rd birthday.

I feel extremely upset and let down, colon cancer is a very slow growing cancer in nearly all cases and people usually have it for many many years before it’s at advanced stages. Symptoms are usually minor but my dad had all the signs, his age, his problems with constipation, tiredness, weight and appetite loss, all these things were fobbed off as Parkinson’s. Why did he not see a gastroenterologist sooner whether this was PD related or to investigate further? I understand that his illness stood in the way of his cancer diagnosis but that’s a huge concern. I’d spent the last 3 years of my life trying to save him from Parkinson’s, thinking that his decline was due to medication changes and trying to find help to manage and improve these things, to have got him back on track. I have no doubt that his symptoms were combined, and that a big part of his struggle was Parkinson’s but it also clouded everyone’s view that there could have been something else wrong. I know he would still be here had he been tested earlier by professionals who didn’t think investigate further. Even being denied a CT scan as they ‘didn’t think it was necessary’ a few weeks before he died.

I also can’t help by think that there could be a small correlation between colon cancer and Parkinson’s due to constipation/ change in bowel habits which would leave toxins in the body longer than usual, especially in this area and causing damage over time. I think this could have been what caused my Dad’s. I’m not a medical professional but it seems to make sense. I just wanted to post my story to make people aware and for you to push to have symptoms investigated further in case there is something more serious causing for your health decline. I wish we got second and third opinions, I truly think he would be here managing his Parkinson’s for a few more years at least and it makes me extremely sad.

Jodie


#2

Hi @Jodie_fordad,

A warm welcome to the forum.

First of all, I just want to start off by saying I am truly sorry for your loss. It’s absolutely awful what you and your family has been through so credit to you for sharing your story on the forum. I have no doubt that our members will soon offer you their support.

The issues surrounding death and dying are not easy to think about. You may find it difficult to talk to family members or friends, or prefer to discuss matters with a trained counsellor. Talking to someone other than your family and friends can give you the opportunity to have frank and confidential conversations, and this may help you cope better with your bereavement. We have a lot of helpful information on this via the Parkinson’s UK website here - https://www.parkinsons.org.uk/information-and-support/emotional-support-and-counselling

We also have a free and confidential helpline which provides help and support to anyone affected by Parkinson’s, including those going through a bereavement. If you’d like to speak with a specialist about your worries at the moment, you can call them on 0808 800 0303 from Monday-Friday: 9am-7pm, Saturday: 10am-2pm, or you can email hello@parkinsons.org.uk.

Our thoughts are with you and your family.

Best wishes,
Reah - Forum Community Manager