Joc

 The big C

"Oh, you'd know if you had bowel cancer!"

These were the words of the GP when Joc said she was a bit worried about the various symptoms she was having - vague incessant tummy pain, change in bowel movements. Previously bowel motions had been very regular, clockwork-like every morning straight after breakfast (sorry for the detail).

Joc's mum had died of bowel cancer and Joc (in the back of her mind) was a bit worried that her symptoms might be the same. So she booked up an appointment at the local surgery.

I think it's fair to say that the GP scoffed at the notion and said it was all perfectly normal. Just things that happen as you get older. There were no tests/investigations.

Previous to this the only visit Joc ever made to the GP was for a regular smear test. Joc was super fit - rock climbing , mountain biking, mountaineering, running, building etc. Probably 50-60 hours of exercise a month. She was super slim. She had a very healthy diet - lots of fibre, cereals, low fat, complex carbs, little meat and no red meat. She never smoked. Joc never got ill - colds were shrugged off.

After the visit to the GP, several months went by (getting on for a year). Joc was finding that bowel movements would catch her unaware and be at different times of the day. In May we competed in the Icelandic OMM and Joc started to feel slightly under the weather.

Then early in June, there was a period when Joc had not passed any solids for 2 days. She had a tight tummy and was feeling bloated. This was very unusual for her. She went to the GP and was given a laxative.  Another day went by. No change. Back to the GP. More laxative. No change, another day goes by. Now Joc was very unwell and found walking painful. Back to GP. Take more laxative. In the night Joc was in lots of pain and clearly very unwell. She had gone 6 days without passing solids.
I took her to A&E at 2am.  

Blockage in bowel. Bowel tumour.

The worst news was that the cancer had been growing for several months and had metastasized to the lungs. Joc had two tumours on one lung.

Joc underwent major bowel surgery and because the blockage was not diagnosed soon enough part of the bowel had ruptured meaning that is was not possibly to remove the tumour and repair the two ends with a joining stent. She had to have a stoma (colostomy) in her lower colon so that solids had to passed into a bag outside her body.

Chemo 1
Oncology dept. Cheltenham Hospital

After Joc recovered a little from the surgery she was soon put onto chemotherapy: Oxaliplatin with Fluorouracil. 

6 infusions. 2 weeks apart. 3 months.

This was administered through a PICC line - a tube that inserts in the upper arm and passes through the veins into a large blood vessel in the chest. It stayed in for 4 months.

All drugs have side affects - for this type of chemo they were nerve damage to extremities. No going into the fridge/freezer. Wear gloves while shopping. The chemo also causes constipation which is no fun with colostomy. 

They infuse the chemo during a 3-4 hour session whist sat in hospital. During this time the oncology department was a little disorganization and busy and Joc often had to wait 1-2 hours before getting the infusion, meaning a 5-6 hour visit to the hospital plus an hour each way for the journey. A long day!
Joc then came home with a small pump attached that administered more chemo for the next 2 days. There are several pills to take during this time to combat sickness and constipation. The treatment made her feel unwell generally, weak, sleepy and breathless. Then the district nurse would visit - take off the pump driver and clean (flush) the PICC line. In the next 3-4 days Joc would gradually start to feel better. 

Joc recovered from the operation. The wound healed nicely leaving a pretty impressive 10 inch scar. A scan showed that the chemo had reduced the secondary tumours somewhat.

Then came a 3 month 'rest' from the chemo. The PIC line came out. Time for the body to recuperate. One side-effect of the Oxaliplatin was nerve damage in fingers and toes - characterized by numbness and tingling. Once Joc got used to her colostomy she started running again and a little rock climbing and mountain biking.

The next scan showed the tumours had increased in size and that the cancer had spread to her liver.
So another 3 month chemotherapy phase was organized.
This time the main drug was Irinotecan. The regime was exactly the same as the previous chemo. 6 infusions every two weeks.

Reversal
In Oct 2013 Joc was back in hospital having her colostomy revered - meaning that her bowel was re-connected using a stent so that solids could be passed in the usual way.

Normality?

Over the next couple of years the cycle continued of: 3 months chemo, 3 months off. Each time the tumours reduced after chemo and then grew during the 3 months rest. Stage 4 cancer: it ain't going away. The chemo is just to increase life span and manage as best you can the growth of the cancer.

Life returned to some kind of normality. Mountaineering trips to the Alps, lots of visits to the hills: Lakes, Brecon Beacons, Snowdonia. We bought another house in Lydney and took on a big renovation project. Joc continued playing in her band and as well as clog dancing got into 'Border Morris'. Jioc's running never returned to what it was before but she was happy competing in races as best she could - she really enjoyed her fell racing.

I received training for removing the mobile chemo syringe and PICC line flushing, meaning the 2 week visit to hospital or by the district was no longer necessary, so we could extend our trips away.

Life still revolved around treatment though and there were times when Joc was unwell but on the whole she was happy enough. In the end I think she went through 7 rounds of 6 weeks of chemotherapy. It was just the way it was. It was the new norm.

It gets a lot worse very quickly

In 2017 it became evident that the Irinotecan was no longer keeping the tumours under control. They were growing quite large - particularly in her liver, so the oncologist put Joc on an oral chemo  treatment.
In December 2017 Joc got a very bad cold/flu and became quite poorly. During the recovery she then developed a very bad cough. On our Lakes trip over xmas and new year it worsened and kept her and everyone else awake in worry.
As the cough abated somewhat in early January 2018 Joc realised her chest area was now very uncomfortable. Then she started to feel a lot of pain in her upper legs.
Everyday life was now becoming difficult - movement was hard and so I took on all cleaning/cooking/shopping duties.
Getting bone scans and xrays took ages to come through and the pain worsened. She had a couple of 3 day stays in hospital and was given morphine for the pain.
It wasn't long before Joc found walking very difficult and was confined to a wheelchair.
Then came the morphine driver to keep the pain under control. Two more hospital visits came and went when she was very unwell. She was now finding communicating difficult due to increased morphine levels. The stairs were impossible so we slept downstairs and I built ramps everywhere in the house for steps up and down between rooms and outside so I could wheel her about. Luckily we have a downstairs bathroom so I could help her shower/wash.
One more hospital trip came where I was told she wouldn't make it through the day. She did and we came home with much support and specialist equipment provided: special bed, daily nurse visits for the morphine driver, special wash stands, commode etc etc. This was 24hr total care. Joc couldn't do anything for herself anymore. Great Oaks hospice visited most days to help with washing and general advice/support.
Dil (Joc's twin sister) gave me respite care so I could get out for an hour every day for shopping or exercise. Joc was comfortable mostly but the morphine meant she was very spaced out. She slept a lot and found thinking straight very difficult and was often confused about what was going on.

Towards the end moving was very difficult for Joc and she was confined to the bed. Muscle atrophy by now made any self-movement impossible. I had been sleeping downstairs with Joc for a couple of months as she needed help in the night. She liked to have her legs moved often and massaged too. The frequency of this increased and became every 30mins, so sleep was very much cat-napping.

We tried a night visit from a hospice nurse, so I could have a full night's sleep but it didn't work. The nurse wasn't able to help in the right way during the night so we abandoned the idea and went back to me sleeping downstairs. Lip and mouth care became important to her and so did washing/cleaning because of the edema.  
In the last few days Joc was mostly unconscious. Breathing became very 1aboured.
Joc died on May21st Midnight.

Being housebound and immobile then later bedridden was a distressing end for an active person who loved to be out and about always doing things. Those last few months and the experiences we went through will live with me for ever. I feel in no way sorry for myself but eternally sorry and sad that Joc had to go through it. If I get the choice, I'm off for a quick death. I haven't got the courage to face what she did. But I am pleased and feel fortunate at being able to care for her during that time. With Dil's help I feel she had the very best care and support possible. The NHS were superb with their support and guidance in helping us achieve this.