Karen’s Story

“Back in May 2023 (aged 58) I presented with what could only be described as a dodgy tummy! We had an overseas trip planned most of which would be in a campervan so decided to get checked with my GP.

We both suspected I may have giardia so she sent samples off the lab.

Within days I received a call from Taranaki Base Hospital advising I needed an urgent colonoscopy. I pretty much suspected from that moment something was wrong.

I was conscious through the procedure and the tumour was very obvious which confirmed my fears. I was told that day they were 98% sure it was cancer.

From there the timeline is a bit of a blur but we met with the surgeon within weeks and was told what my treatment plan would be.

One week of radiation in Palmerston North, 6 rounds of chemo (IV Oxyplatin and oral Capecitabine) followed by surgery.

I didn’t experience the diarrhoea or fatigue associated with radiation but did experience severe nerve pain in my pelvis on Day 4. My experience at Palmerston North hospital was pretty mixed. Very disappointed in the oncologist who didn’t advise this was a possibility (and I had take an support person who was a nurse and had also experienced cancer treatment) and when she rang me for my 6 week follow up she had no recollection of my issues so obviously hadn’t put it in my notes. She left me in pain for 7 days until the chemo oncologist received my notes. When I told her she had a prescription at our local chemist within half an hour for Dexamethasone and the pain was gone within hours. Took them for 3 days and pain never returned!!

My chemo regime went pretty well when I hear stories that others have experienced. I hated the flush at the end of the IV chemo – it was like all the side effect hitting me at once! First time it happened was very frightening but with a lot of self talk and preparedness I coped better each time. This regime makes you very susceptible to the cold so having it over winter in Taranaki was not ideal! The fatigue was quite tough, especially the first week and I had terrible neuropathy in my hands but that usually passed by week 2 then Id have a ‘normal’ week and then start all over again! I did experience some nausea during the last few rounds but nothing that wasn’t manageable.

I finished my chemo on 29 November and then had my surgery on 12 December. The actual surgery was nowhere near as bad as I had anticipated – they tend to put the fear of god into you! I knew I was going to have an ileostomy bag and I had a wound from my belly button down to my groin. With the exception of one drain site (which I think was taken out too early) I healed really quickly and had no issues. Think I was in hospital for 5 nights? The fatigue was shocking and although I worked limited hours from home through January it was February before I was confident to return to work doing reduced hours.

Unfortunately about the same time I started experiencing terrible neuropathy in my feet (and some in my hands). I also had hair loss for about 4 months but I have plenty so it wasn’t a worry! This was almost 3 months after finishing chemo? My oncologist advises that symptoms can occur up to 12 months post chemo thanks to the Oxyplatin. The neuropathy may or may not be permanent.

My hands are quite manageable – my job involves a lot of keyboard work and I think this alleviates it? However, my feet are a nightmare and became very painful. Ive had to buy new/larger shoes because I just cant bear to wear most of the shoes I had. I tried acupuncture, warm soaking, tens machine, Nurofen gel on the soles and pressure socks but nothing has helped. By the end of the day/week Im pretty miserable so had to resort to going on to nerve blockers which Im not very happy about but they do seem to be helping. Ive tried to wean off them a couple of times but have paid the price.

I cannot speak highly enough of the Taranaki DHB who have been magnificent – the care and support I have received has been exceptional. I had a wonderful chemo nurse who I could email with any concerns or questions and she always answered promptly. I have an amazing stoma nurse who has also been incredibly supportive and helpful. My surgeon is very relatable and was wonderful with his follow up care post surgery.

As I healed so well I was put on the waiting list for a bag reversal after 2 months and I had a call last week to advise there was a spot on 30 July. In all honesty I am in very mixed minds about this and want to speak to my surgeon before I decide. Earliest I can get to see him is 31 July so Ive given that spot to someone else but have been told I’ll stay at the top of the list. I wasn’t expecting to be called to surgery so quickly and hadn’t really done a lot of research.

Im not worried about the actual surgery but have heard a myriad of recovery stories and am terrified of ending up with LARS. I just couldn’t live my life needing to know where the nearest toilet is or even worse become faecal incontinent. Apparently I have a very difficult stoma but not knowing anything else in the most part I manage with it fine. It can be uncomfortable at times and cause pain but if I had to live with it for the rest of my life Im sure I could?? I have been advised I could have a procedure to reshape my stoma. If I choose not to reverse I may consider this.

I am on the Facebook Bowel Cancer NZ Patient and Whanau Support Group which has been an excellent source of information and support. I had no contact with the Bowel Cancer Society but to be fair didn’t really need any support. However, Bowel Cancer NZ approached me out of the blue post surgery and they have been able to provide me with fantastic resources and in my opinion are a much better advocate and support network.

So now Im waiting to meet with my surgeon and will need to make a decision about my reversal. This is my story! I am happy to answer any questions or please ask if I can help you with your research in any way.

Anything to help others because I have relied so much on the support and real life stories of others.

Thank you for the work you do.”