Regular user
Female 58 y.o.

I am a 57 year old Paediatric Nurse, currently working in in the University of the Highlands and Islands.
I have 2 grown up daughters and a Grandson who is 5. He started school on the day I had my colonoscopy.
I had a colonoscopy on 17/8/21 which clearly showed a tumour. I had follow up MRI and CT scans which have shown that I have T3N2M0 with vascular invasion.
I will have a stoma sited on 14/9/21. Then once healed 8 weeks of chemo/radio before I can have removal of the tumour some time early in 2022.

30/9/21. I now have my stoma. Radiotherapy starts on 4/10/21 followed by chemo on 3/11/21.

Radiotherapy for 5 days completed at ARI. I stayed in CLAN Haven for the week rather than driving 2.5 hours every day. All went well.

20/10/21. Had a good first week post radiotherapy. Passing blood PR. This week, my 2nd week post radio is more uncomfortable. Still passing fresh blood PR.
Perineum has split and is very painful. Not sure if this is normal. Have arranged a GP appointment to ask. I’ve been more exhausted this week, too.

27/10/21. I was given intrasite gel for my skin issues. It has helped, although still sore. I’m keeping my steps up walking 5 miles most days. 3rd week post radio, a bit more comfortable. Still sore though.

3.11.21. First Oxy infusion. Nurse got vein access. Amazing for me. Arm was ok until about an hour and a half in to the infusion. Heat pad applied, which helped for a while. My arm was excruciating. And continued to be all night. I had dreadful cold symptoms in my hands. And all over my body while outside. slept well until 3am. Felt nauseous. Ate ginger biscuits. This helped. 4.11.21. Took first Cape tablets with anti sickness and steroid tablets. Tired. But an ok day. Bit emotional. Eyes hurt when I cry. Ache under chin.

8/11/21. 5th day of Cape tablets. Only had steroids for the first 2 days.
Hand and arm still sore from the IV. Constant feeling of needing to be sick is wearing. Managing a short walk each day. What to eat is a nightmare. Don’t really fancy anything. Trying to eat little and often.
Stoma bag is taking care of the nasty side effects from that end. I am really grateful for my stoma.
Not enjoying warm fluids. And it’s a struggle to drink 2l per day. But I’m trying.

2nd week of round one was plagued with gastritis and loose stools caused by the tablets.
I completely lost my appetite and had to force myself to eat before the tablets so they didn’t hurt my tummy so much. I wish I had started using Imodium sooner. I left it too late stools became worse and I ended up in hospital with a very low potassium and magnesium. I was completely drained and weak. I could hardly wash and dress myself. Never felt so ill.

24/11/21 2nd round supposed to start today. But postponed as potassium and magnesium levels still low.
1/12/21 postponed again as neutrophils are low. I’m feeling well and enjoying food.

8/12/21. 2nd round started with Oxy infusion. Used an electric heat pad from the start today. Arm still very sore but more bearable. Issue with cannula. Infusion took longer than it was supposed to. Cape dose reduced by 300mg.
9/12/21. Very sick first thing. Which frightened me.
This time I asked for omeprazole to try to prevent the gastritis. 🤞
I feel I have to ask for everything. Very little support or guidance from professionals.
10/12/21. Managed a short walk. Cold really affected my nose. Really sore.
Feeling queasy all day.
14/12/21. So far I’m better than round one. The 300mg reduction in the Cape dose seems to be helping. I’m eating well. Feeling ok. I just feel slow and fragile. Loose stools started last night. Started taking Imodium right away.

22/12/21. Finished round 2. It was so much better than round 1. I think with the reduction of Cape and keeping on top of the lose stools was the answer. Oncologist phoned to say MRI on 5th Dec shows a reduction in the bulk. Less lymph involvement so a good improvement. This gave me a boost, right before xmas.

24/12/21. Tingling in hands when cold remains. This has lasted longer than round 1. Arm still sore from IV.

29/12/21. 3rd Oxy today. Worst yet. Hands and feet tingling even when not cold. Struggling to talk. Sound like I have a lump on my throat when I'm talking very strange. And a struggle to get voice out. Tongue not always working. So I sound drunk! I wish!! BP was sky high at end of the infusion and I was shaking. Strange reaction.
Magnesium in blood was low. So I have an oral supplement to take for duration of Cape.
IV site was an issue as always because of my poor veins. Cannula had to be re-sited part way through. Only one more to go after this. 🤞

18/1/22. Round 3 was difficult to say the least. I competed the round on 29/12/21 and still have the side effects of the Oxy infusion. It’s been horrendous. The Cape caused the usual loose stools and my stoma has become swollen and sore. I’m struggling to keep my bags on. I’ve had 3 changes of clothes today, and that’s a week after finishing the tablets.
But good news yesterday. Due to the increased toxicity they are not going to put me through round 4 which should start tomorrow. They feel the tumour has shrunk enough to go in and operate without round 4. So I will get my op late Feb early March. Not sure if they will reverse stoma, but they will know more when I’m in surgery. I’m not worried either way.
Can’t tell you how delighted I am that chemo is over - for now. I’m aware there is a possibility I may need more at some stage. But for now I can concentrate on getting fit for surgery. 😀🎈

29/1/22. MRI today. I see surgeon face to face on 14th Feb. Booked in for surgery on 23rd Feb. Bit scared I must admit. Fear of unknown.

1/3/22. I saw the surgeon 14th Feb as planned. She’s examined me. She feels the tumour is too low in my bowel for her to re-plumb me. So I’m keeping my stoma and she will remove my lower bowel. She gave me lots of scary statistics. She also said there was a possibility my surgery may be postponed. It was. And my new date is 4th March.

12/3/22. My abdominal perianal resection went ahead on 4th March and I got home in 10th. Everything seems to have gone well. I wasn’t expecting such a big scar on my bottom. I am stitched from back to the perineum. It is sore to sit. My stoma started to work as soon as I started back on proper food. The staff were all amazing I was lucky to have a single room.
I’m tired but feel well.
It is now a long wait for histology report to know if I will need further chemo.
Then I can start to live again.

24/3/22. Still no histology report. I’m really desperate to know my results. I’m now 3 weeks post op. I’m walking 2.6 miles as often as I can.
I feel really detached from everything and a bit isolated. It’s hard to believe what I have been through and what my body has coped with.
Thoughts are now turning to return to work. It is a huge thought! I won’t know what I’m capable of until I’m back, though. I can’t sit for long periods and my concentration is shot to bits. I’ll go back as slowly as I can. I’m not going to be brave.
It feels like my world has become smaller. Friends have disappeared. Some couldn’t cope with the thought of cancer.

25/3/22. Today I got the news that there was no cancer in the 37 nodes removed or the vessels. They are confident with the amount of tissue they removed that there is no cancer left. 🤞

27/4/22. Life is starting to return. I no longer require analgesia 7 weeks post op. I am so emotional, though. I have been referred to an oncology psychologist. But there is a waiting list.

19/07/22 I had developed a parastomal hernia and prolapse so had surgery to repair this. One night stay in hospital. I’ve still not seen the psychologist.
I’ve found so much help since my APR that I wish I had known about during chemo. Maggie’s have a whole programme of events and support. Our local day hospice has complementary therapies and in entitled to 6 of these. I didn’t realise I could use palliative care. I had a session with a counsellor at the hospice but I knew her. So didn’t go back. Still struggling emotionally.
2/8/22. Returned to work on phased return. It feels like my heart isn’t in it anymore.