Profile

kathyS

Regular user
Female 50 y.o.
ABOUT ME

48 years old on diagnosis in July 2019.
Lovely husband two brilliant children 9 and 16 rescue whippet Daisy. Welsh - living in Scotland Christian ✝️ 💓
Treated for piles for a year or so. Finally symptoms of bleeding and flatulence / some itching- extreme fatigue Dr sent me for colonoscopy. Have suffered with low-mood depression in the past so put the fatigue down to perhaps -peri-menopausal. Identified the tumour onscreen easily. Was told immediately it was a malignant tumour. (My DR did not think it was likely to be cancer).
Diagnosed Stage 4 following further PET, CT, MRI’s with 4cm malignant rectal tumour in July 2019, with solitary met on liver. Chemoradiotherapy for five weeks in September 2019 followed by more chemotherapy (FOLFOX-PICC line) finished Boxing Day (Merry Christmas!). Lower anterior resection & Liver resection cancelled March 2020 due to CV19.
- Microwave ablation (MWA) on liver April 1st 2020 was unsuccessful lungs collapsed - on oxygen- lesion resting on diaphragm so very painful - three weeks later a lot better / though persistent shoulder pain in both shoulders
-May 2020 flexible sig. Node still present / no tumour/ complete response
- Pet Scan results - show complete response on colon - node enlarged / liver met still present June 9th 2020 - was really adamant I still wanted surgery on colon though had been put on watch and wait due to CV19 and felt very coerced. Dr agreed to proceed with surgery - my oncologist was lobbying for me to have the surgery due to an enlarged node that had still been present in all scans. “complete response” means different things there are no NICE guidelines regarding what this means, it is disputed. In the end - Histology showed that 11 out of 12 nodes were non cancerous but one node was positive. Oncologist very happy I had the op on June 16th 2020 as was I
- temp ileostomy
- bad bleeding from rectum after lower anterior resection for seven days - felt rough, went home then unwell at home for two weeks- large rectal bleed all black blood - hospitalised - drained fluid from pelvis also have collection in stomach - IV antibiotics- very unwell in hospital six days
- blood transfusion- felt better immediately
-home - wound had huge heomatoma and wound split - still open wound and getting dressed by nurse once a week - while I dress in between. This felt like it took ages to heal!
MRI CT scans 3rd August - await results but booked for
- Liver MWA on 11th August 2020
- hospital again with high inflammatory levels - 140 and going up - there for three days IV antibiotics they don’t know if it’s the pelvic collection or what - discharged with oral antibiotics / oncologist decided not to give 3xXELOX mop-up as doesn’t want to make me more ill! Happy about this as more than 12 weeks after surgery now so unsure whether it is worth it - bloods at GP inflammatory markers down to 20
Getting followed up in Feb 2021 for bowel continued monitoring on liver : MRI/CT scans Oct 2020- clear - thankful 🙏🙏🙏
- still v bad shoulder pain / arm pain / seeing physio for this
- Awaiting ileostomy reversal
Pet scan on 11th Jan 2021 await results CT and MRI 20/21st Jan 2021
25th Jan NED- all scans all clear. Very pleased. I still have ileostomy to get reversed and a pelvic collection but thankful for how far I’ve come and hope to continue to stay well.
April MRI - in hospital having ileostomy reversal latest scans show lung 5mm metastasis which has grown from 2mm from previous scan it’s in middle of lung so unsuitable for resection.
Ablation is best option. This treatment is currently unavailable in Scotland. The MDT team did not offer ablation treatment for lung reoccurrence as a first line treatment (even though this is the optimal treatment for me) the MDT offered a watch and wait approach which would require the cancer in my lungs to grow a further 5mm before I would be eligible for SABR radiotherapy in Scotland. Thus, I had to first refuse this watch and wait treatment (as I understood I was on a curative pathway this delay did not make sense to me) and I requested to be considered for ablation treatment which can be performed now on the lung nodule (at 5mm in my Left lung) but not in Scotland in England. This permission to get funding from Scottish Government to access treatment is not streamlined or transparent to patients and are cancer patients also being discriminated against unfairly by not being offered the best treatment in the first instance? I have now been referred to Royal Brompton for ablation treatment but await date for this as of June 2021.
July 24th went to Harefield Hospital for ablation treatment on lung. Was successful in ablation of met but needle debris is now in my lung. Will be monitored moving forward for this.
Sept 2021 starting mop-up chemo following lung met - bad reaction to oxi infusion and hospitalised. Didn’t recommence treatment. On to three monthly scans and await advice regarding the lung needle debris as I can no longer have MRI’s currently due time this factor.