Our Honeymoon July/August 2024 – My husband struggled to sit at a low table which required crossed legs. When we got back home he was struggling to put his socks on. His hip was causing him pain. I encouraged him to go to the doctors.
He was referred to the Musculoskeletal clinic at the hospital. They ordered x-rays and CT scans and referred him a hernia clinic. The hernia clinic doctor said it wasn’t a hernia, and he was referred back to the MSK clinic.
In January 2025 he was offered either a ultrasound guided cortisone injection into his hip, or a deeper tissue CT scan with a specialist. Through discussions with them, he chose the injection. He had this and then in June 2025, he unexpectedly received a telephone call inviting him into hospital for the deep CT Scan.
On Tuesday 24th June 2025 he went in for the Deep Tissue CT scan.
On Thursday 26th June 2025 he received a telephone call from our GP surgery asking him to come in for an appointment as soon as possible. We went in at 6pm. At that appointment we were told the CT scan had shown some thickening of his bowel, and that this could be cancer. At this point he had no real symptoms. He was excessively tired but we’re both teachers at the end of the year, we’re usually tired! He did say he had some red colouring of stools but had put this down to happening when he ate tomato based sauces. At this point other than his hip pain there was no real concern. Nothing to make him go to the doctors anyway.
Friday 27th June 2025 he had some bloods taken.
Tuesday 1st July 2025 he had a telephone call with the colorectal specialist nurse who booked him in for various things:
Sunday 6th July 2025 – CT Scan of everything apart from his limbs and head. (They also wanted to do a MRI but with his claustrophobia this wasn’t feasible).
Sunday 13th July 2025 – Endoscopy – this wasn’t successful. Despite having some sedation, he couldn’t cope with the procedure and it was terminated. The sedation did not touch him.
Tuesday 5th August 2025 – Colonoscopy – they took 6 biopsies. The consultant said there and then that it was cancer. He reassured us that it was treatable.
Wednesday 13th August 2025 – We had our first proper appointment with his consultant and the colorectal specialist nurse was present. The cancer was very low to the end of his rectum, but he was hopeful that with surgery he could have it removed and the two ends tied back together. The options were: 1) straight to surgery, probably an ileostomy bag, hopefully temporarily, and possibly chemotherapy afterwards or 2) a round of radiotherapy and chemotherapy first, probably still result in surgery, but the radiotherapy could damage the bowel and result in a slightly higher chance of a permanent stoma bag. My husband chose option 1. We were told the CT scans suggested that it hadn’t spread anywhere and that it had been caught early.
Friday 15th August – blood tests.
Tuesday 19th August – met the Stoma nurse and discussed bags. Given some to take home and wear around the house to begin to accept the future. Followed by a meeting with his consultant and the specialist nurse, where we just went through the surgery route decision again.
Wednesday 27th August – went in for preassessment.
Tuesday 16th September – blood tests
Wednesday 17th September – My husband was admitted into hospital at 4pm. Due to his diabetes, they needed to keep an eye on his blood-glucose levels while carrying out the bowel prep. By this point my husband was frequently going to empty his bowels, very liquidy gassy stools and blood was definitely present. He was also sleeping all the time during the day, even during the school summer holiday.
Thursday 18th September – day 0 – Day of surgery. He left the cubicle at 10:30am. We later found out he was bumped down the list as someone else needed to go into theatre ahead of him. He went in around 12, and his surgery lasted 6 hours. It was all done laparoscopically. The cancer was lower than expected, and there was no rectum left to reattach his large intestine to, so he had a permanent colostomy stoma created and had his anus sewn up. The tumour had passed through 3 out of 4 layers of the bowel. They removed 19 lymph nodes and only the three closest were cancerous. He came back to the ward at 7:45pm.
Friday 19th September- Sunday 21st September – there was no real progress. He wasn’t eating much – only managing a couple of half spoonful of vegan yoghurt or soup. He wasn’t really moving around. He was in a lot of pain and was just sleeping throughout the day. With his diabetes, coming out of major surgery and being a high observation patient, they were monitoring him every hour which meant he wasn’t getting much quality sleep over night. He found sitting up very painful. They were concerned about him developing a chest infection which could lead to pneumonia. His stomach was very bloated, he was throwing up frequently. They ended up putting a tube up his nose (under a sedation that he actually responded to), to try to relieve some of the gas and pressure of his stomach. At this point on Sunday, because he’d been throwing up and not really sitting up much, he was put back to nil by mouth. On top of all this his cannulas were really hurting him. He was being pumped with glucose, IV drip, and insulin, plus antibiotics and pain relief, all through the same cannula. His skin on his arms was hard and tight. On Sunday night he was given a new cannula guided via ultrasound (this was fascinating to watch!), but that came out over night so they put a new one into the back of his other hand. On Sunday night before I left – his stoma trumped and there was liquid in his coloscopy bag.
Monday 22nd September – am – when I got there in the morning it looked like there was still no real progress. He was still in a lot of pain. Before I got there, his consultant visited, and had the nose tube removed. He was happy with how my husband was doing (just reiterating the importance of moving), and authorised his bottom wound drain to be removed. In the morning he also walked with assistance to the cubicle door and back. While I was there, the pain specialist nurse came and reminded him to take any pain relief he needed. The diabetes specialist nurse came in and said he could be taken off the drips so he could self-manage his diabetes. This made a huge difference to his mental wellbeing. After he’d had some paracetamol (the only pain relief he was on) he really perked up. He had 2 visitors and he stayed awake and chatted away to them all about football. In the afternoon he had a little walk to the shower and had a flannel wash. Before I left for the day, he had chosen his meals for the next day.
Tuesday 23rd September – Catheter was removed. He went for a walk with the physiotherapist and managed to walk up and down the stairs. He ate a normal hospital portion for his evening meal, only leaving the part that wasn't soft. He was able to sit in his chair while eating, and was able to sit on the edge of his bed to play cards with his mum for short periods. He was able to chat for much longer, and didn't sleep while we were there.
Wednesday 24th September - By today he was not on any pain relief at all. He was moved to a shared bay on the ward, and he was eating a bit more. He was very much ready to come home. He was tired from lack of proper sleep.
Thursday 25th September – he came home! I had a text at work to say the Stoma nurse team wanted to meet me so he could explain how to change his coloscopy bag. I left work as quick as I could, we went to the hospital restaurant for lunch. At 2pm we met with the Stoma nurse and my husband talked through his bag changes. At 3:45pm he was released. The Stoma nurse reassured us that he was doing really well. (His cataracts makes it hard for him so place them on his own) and warned us that his first stoma output could be an explosion and to not worry.
Friday 26th September - he had his first real stoma output. It wasn't the explosion that we were expecting, the consistency was like type 4 of the Bristol Stool Consistency scale.
Sunday 28th September – had a little walk to the post box (about 5 minutes max)
Wednesday 1st October – he had a follow up appointment with the Stoma nurses and then his colorectal specialist nurse (LS). They removed his staples from the key hole surgery, and the stiches in his bottom.
And now we wait to hear about the Chemo-chapter of this journey.
