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Cathy13

Regular user
Female
ABOUT ME

My Husband was diagnosed with Rectal cancer late in 2017. He only found out through the bowel screening programme, and he was eventually diagnosed after a colonoscopy and biopsy. The doctor actually told us, there and then, that what she had seen led her to believe that is was cancerous, but obviously until the biopsy had come back they couldn't be certain. She ordered scans and blood tests immediately and arranged for him to go from there straight to the imaging department where he had a CT scan. He had an MRI a few days later and then everything else moved just as quickly.
After we were told, I used to sit and look at him thinking how did I not know this was growing inside him? How did he not know? Which I know is ridiculous. But it just shows what secrets our bodies can hold, very scary.
He started neoadjuvant chemoradiotherapy last November and completed it just after New Year, due to bank holidays.
His first operation appointment was cancelled at the last minute, he had changed into a hospital gown, and seen the anaesthetist and various other people. Then the surgeon came with his team and said there were three people basically fighting for two places. In fairness the other two had already had their operations cancelled before, so home we came. It was rescheduled and he had a Lower Anterior resection at the beginning of April this year. The operation went well. Unfortunately after the operation was a little more tricky as the ileostomy wouldn't work and everything was just backing up and making him sick. His blood pressure was very high and he really was quite unwell, bless him. He was in for 10 days, and was then sent home before he had been discharged by the stoma nurse, so at least two days too early. We were sent home with no dressings, no instructions on how he should be looked after, nothing. The nurse on the ward quickly showed us how to change his bag as they were waiting to to get rid of us.
He had open surgery so the wound was massive. I had to change both the wound dressing and his bag every day because the two overlapped. I have since been told, but didn't know at the time, that it should have been a district nurse doing it, no one told us. I had to take him back to the stoma clinic two days later because the stoma had leaked into the wound. That was how we found out he was discharged too early. She was so angry about it all, she asked permission to take photos of it, and was going to contact the necessary people. She changed both the dressing and the bag, provided us with more dressings, as we had none and told us to see our GP practice nurse. After this the doctors surgery supplied us with dressings and the nurse helped with changing it when we saw her.

I kept phoning his specialist nurse and others saying he couldn't eat, he lost two stone in around six weeks. He couldn't walk because he was in too much pain and too weak. All they kept telling me was "tell him he has to eat", "he has to be more mobile".

Our GP ordered bloods on the Friday morning because he wasn't happy with his weight loss and how weak he was, he could barely stand on his own. We got a phone call at 11pm that evening to say he had to be taken to A&E immediately because his bloods were showing cause for concern. I took him to the hospital and he was taken into triage, and from there straight in to Resus. At one point his blood pressure dropped to 56/23. That was the last time I recorded it, as everything went a bit frantic at that point.

To cut an already long story short, he ended up back in there with an anastomotic leakage, sepsis and acute kidney injury. He was kept in for another 8 days. But nobody had listened to me for the weeks before this happened.

When we saw the Oncologist a few weeks later she told us he would have died if he hadn't gone to the hospital when he did.

His diagnosis now is moderately differentiated adenocarcinoma, TRG2 y pT3 ypN1c (0/14) M0, EMVI positive, PNI positive, R1 CRM positive with tumour deposit.

Unfortunately the start of his adjuvant chemo was delayed as he was so ill after the operation, so it was almost three months after the original surgery, before it began. He is currently taking Capecitabine. He should finish his 8th cycle at the beginning of December. He's coping really well with it, and the only side effect he's had is that he get's more tired. We'll take that!.

Anyway, he's doing great now thank goodness. I'm so proud of him, he's 67 so no spring chicken, but he's really coped well with it all and it certainly hasn't been easy .

Sorry for the long story, but wow, I actually feel better seeing it all written down.

Sept 2018 - CT scan showing NED
Dec 2018 - CT scan showing NED
Apr 2019 - CT scan showing NED
Sept 2019 - CT & PET scan showing mets in liver and lungs. We were told that is not curable and that he would be given chemo for control purposes. He now has Folfiri and Panitumumab every two weeks

Mar 2020 Had phone consultation, after getting bloods done prior to 13th chemo. Oncologist said bloods were ok but stated that maybe now was a good time for a break. This would avoid the need to keep going to the hospital at this uncertain time. The break would be for three months and he would probably lose funding for the Panitumumab, but as he was only on first line treatment there would be other options. She then went on to tell us that if he did become ill with lung or breathing problems, and needed hospital treatment during this time, he would not be given intensive care treatment, and would basically have to let nature take its course. This decision would be made due to the fact that there would probably be other people who would have a better chance of survival and quality of life. This was hard to hear.
September 2020
3 monthly scans have all shown growth but no spread. He has a pain nurse who has worked miracles and his nausea is now under control along with his pain.
December 2020
Christmas day after a very small, partially eaten dinner, he began to feel nauseous. Eventually he began being sick and had bad stomach pains which were getting worse. He was sick throughout the night and the next morning I saw that he was bringing up brown stuff.
111 arranged an ambulance for him, and he was taken away. I was so sad and scared, watching him go, but it must have been a million times worse for him. I've spoken to him every day and yesterday they let him come outside the door of the ward for a couple of minutes to see me. I was unable to hug him, but being that close, and actually being able to see him, was like they'd given me the world.
They believed he had a bowel blockage. He was nil by mouth from Saturday morning, with an NG tube to drain his stomach, until he had his operation earlier today. He's back on the ward, in quite a bit of pain, but hopefully painkillers will sort that out and I'll get my man home again. Tonight i'm hoping that all the bad bits are left in 2020 and that 2021 will be filled with happinesses and love 💙