Bowel cancer patient

Diagnosed with stage 3 bowel cancer of caecum in August 2015 following emergency surgery for what was thought to be an appendix abscess. (Right hemi-colectomy) Present in 16 out of 18 lymph nodes which were removed. Poorly differentiated cells with EMVI. Not a great overall prognosis.

Three CT scans in July and August 2015 had shown no sign of spread. Commenced on 6 months of Capox in October as 'mop up" chemo and experienced constant nausea, weight loss, abdominal pain necessitating hefty opioids and steadily rising CEA.

Scanned after cycle 5 early January 2016. Informed that cancer had spread to liver and peritoneum and I was now to start "palliative chemo" as "mop up" chemo and cure were no longer possible. To say my hopes and dreams were completely shattered is an understatement. My spirit was completely crushed. It was a very stern talking to from a close and very special friend that gave me the boot up the backside that I needed to seek a second opinion and not accept my Oncologists opinion. I will forever be indebted to her. Without my wonderful husband and 3 boys I'm not sure I would have managed to climb out of that dark place but I did as I knew I wanted to live at absolutely any cost.

I was commenced on Folfiri (modified de Gramont) and Cetuximab Feb 2016 when my CEA had risen to 25. Following loads of research on my part (and I mean LOADS!) I continued to pursue a referral to a specific liver surgeon in Basingstoke with a view to looking into the possibility of liver resection and Cytoreductive surgery and HIPEC. My Oncologist continued to inform me that surgery was not appropriate in my case and that I should make the most of every day instead. She didn't miss any opportunities to tell me that my cancer was going to kill me and that I had the potential to live for many more months (not years) of life. After 2 or 3 cycles, I became neutropenic so she stopped my 5fu bolus and would not allow me to start it again. No mention was made of an injection to boost my neutrophils and at the time, I was unaware of this option. She also offered to remove my Hickman line and stop my 5fu pump part of chemo a few cycles later. Obviously, I declined her offer as I was keen to continue chemo and live. Despite the fact that I had developed problems with right kidney, she did not want to stent it so eventually, all right kidney function was lost. It became very apparent that she had simply written me off. The negativity and constant reference to me dying soon, had such a detrimental effect on my emotional and mental health and well-being.

I accessed 1:1 counselling at our local Maggies centre around March 2016 which was enormously helpful and also started antidepressants for the first time in my life. I noticed a good improvement in my mood and ability to carry on positively despite repeatedly being told by my oncologist that there was no hope and that I was not expected to live beyond the year.

My oncologist referred me to a clinical psychologist to help me accept things. I agreed to go but politely added that I had no intention of "accepting things" at the current time preferring to have a realistic optimism. I also had to politely ask the Palliative care nurse who pitched up at home to stop visiting and calling me. She kept trying to discuss dying with me but I wasn't game for that! We agreed on a β€œdon't call me, I'll call you" plan.

My Oncologist eventually very reluctantly agreed to refer me to my liver surgeon around May 2016 adding that "I doubt he'll want to see you but at least he may give you some advice". My husband had to be quite firm with her as she continually refused. I continued to have an amazing response to my treatment and CEA remained stable around 2. The pain and other symptoms I had disappeared. The liver surgeon did take on my case and wanted me to continue on my chemo as it was having good effect and he was also in close discussion with the peritoneal team. In the meantime, we sought a second opinion with an oncologist in London and from this point in September, we changed over from NHS care to use our private health insurance. I do regret not using this from the beginning but we were assured by a consultant that the only difference with private is that you are provided with free coffee and posh biscuits in the waiting area! Being completely naive and like rabbits in headlights at the time, we believed it.

I eventually had a successful liver resection On 25th of January 2017 down in Basingstoke and then returned for Complete Cytoreductive surgery and HIPEC on 20th March.
This involved:

* Large bowel resection and rejoined (at site of original surgery around caecum area)

* Removal of right kidney, ureter and small piece of bladder, (as the ureter was compressed by bowel tumour, all right kidney function was lost)

* Full hysterectomy - uterus, Fallopian tubes and ovaries (as ureter was stuck to cervix so concern it was involved too therefore decision made in theatre to whip it all out) It was later confirmed not to be involved in tumour and neither was kidney.

* Resection of part of duedenum and rejoined (this was only discovered in theatre and not pre-planned)

* Stripping of peritoneum

* Removal of Omentum

* And finally, HIPEC!

I did take a while to recover as part of my wound opened and therefore took a while to heal and I also had some urinary issues. I was in Hospital for just over a month. I think this was partly because going home involved a flight up to Edinburgh.

I was ready to restart chemo in June 2017 after a six month break for surgery, Unfortunately, a baseline scan showed 2 small new liver mets. We were both absolutely devastated. Especially so soon after liver resection. My liver surgeon assessed and ordered a liver mri which revealed 4 small mets. Possible surgery and ablation were discussed and plans for ongoing review were made. I Started back on Folfiri (modified de gramont) and Cetuximab and also changed oncologist from a London based one to Glasgow for ease of travelling. I was also diagnosed with bile salt malabsorption and prescribed daily Questran powders to control this. It was also discovered that following having a lot removed from my abdomen, my bile duct and stomach became 'twisted' and this caused extreme nausea and inability to eat for a good many weeks afterwards. However, one day in very early August, it suddenly resolved and my appetite (and weight gain!😱) recovered instantly! I'd been living on cornflakes and complan meal replacements. I headed out for a bar lunch that day and scoffed fajitas no less! From early August onwards I came on leaps and bounds and felt 'normal' again! (ok, a new normal!) but it did take a good 5 months of slow but steady recovery to get there!

Follow-up CT scan and liver MRI late August 2017 showed that 3 out of the 4 liver mets were almost invisible and the fourth was much smaller. It was decided that rather than liver surgery, ablation could be done if needed. Unfortunately, the CT scan also showed I had 2 pulmonary emboli and an inferior vena cava embolism. I was commenced on daily injections of Fragmin for 6 months initially and now continue on these Indefinitely. PET scan planned for first week of November. I was upset and disappointed as we were planning a sunny break but I was not allowed to fly anywhere because of the clots. Me being me, came up with a cunning plan on the way home in the car.........a cruise from our local port and that's just what we did. We loved our first holiday since this whole drama began and spent 16 nights cruising in Europe in October from Rosyth. We visited France, Spain, Portugal. Madeira and three Canary Islands and all the way back to Scotland again. I joined a choir on the ship and we sang for all the passengers. I loved every minute especially the swims in the ships pool.

I then had a PET scan after our cruise and it seemed to highlight further potential issues. There were three areas of interest namely, a rib, a groin node and a query with the small bowel. I then had a CT scan of chest, abdomen and pelvis which did not highlight these areas at all! It did highlight that 3 of the 4 liver mets were no longer visible and the 4th was much smaller. My lung clots were smaller and the one going into my heart had disappeared (whew!) Following discussions with my oncologist and Peritoneal surgeon in Basingstoke, they are not convinced that there are any mets within peritoneum or small bowel. The only way to tell of course is by opening up again, an option which was not ruled out for the future if indicated and in my best interests. They both said it would be very odd to have such a good response to the liver mets and not elsewhere. I’ll go with that! I continue having 3 monthly CT scans and fortnightly CEA with my pre-chemo bloods. I still appear to only have one tiny liver met of less than 4mm which has reduced. I'm finding I need my GCSF injections for 7 days each fortnight as my neutrophils are pretty much always on the low side so for 7 days I inject Fragmin and the next 7 I inject Fragmin AND my neutrophil boosting injection. What fun!

My fortnightly chemo continues and I’ve now had around 110 cycles of Folfiri and Cetuximab to date (May l2021) Fortunately, apart from some relatively minor and annoying side effects, I tolerate it very well. My oncologist wants me to continue on daily Fragmin as long as I’m on chemo (for life!) I can hardly believe I’ve had all that surgery as I feel I’ve completely recovered. I honestly do believe I live a great life surrounded by the love and support of my friends and extended family and in particular, my husband Ross, 3 grown up sons, Michael, Fraser & Euan, two daughter in laws, Lyndsey and Holly and three little grandsons Harry aged, 4 years, Cameron aged 2 years (the baby I had the absolute joy of delivering myself in an emergency in the bath at his home after mummy's apparent 50 minute labour! ) and little Marty aged 2 years.

On the 6th Dec 2018 I had the very best CT scan I've ever had in that the only sign of cancer was the 'barely visible' liver met and no other evidence of disease elsewhere. This was the most amazing news right before Christmas! I'm realistic I think but much more hopeful. We decided to get another puppy as we lost our little cocker in Sept 2017 and our little Westie Aug 2018. We now have a little girl of a more unusual breed called Coton de Tulear called Poppy. She is such a little sweetheart and now 2 years old.

My CT scan at beginning of March 2019 was almost identical to Decembers one in that there's a 'barely visible' liver lesion and no other evidence of disease seen. Woohoo! So that scan prompted me to book a weeks all inclusive holiday to Corfu to take all the gang away together! It was a gorgeous hotel and right on the beach. There was 8 adults and 3 little ones! The holiday was absolutely perfect and all I dreamed for. They are my whole world!

On 6/6/19 I had my first ever CLEAR SCAN!!!! I was on a real high with this news as I never thought I'd see the day, followed by another clear scan at the end of August 2019. On 5/12/19 I had my third clear scan! Clear scans continued until March 2021. (More on that later in story!)

Ive now taken up 'wild swimming' and have been doing this for almost two years. I aim to get in the sea most weeks with local wild swimming groups. I did start in swimming costume only but now have a wetsuit, gloves and shoes for winter swimming. It's the most wonderful experience and each invigorating swim is such a boost to my mental health and well-being. I also joined a choir again....we all know singing is good for the soul right? Pity covid stopped that though as we were meant to be performing at the Edinburgh. festival! So, well as caring for my three little grandsons some days, taking Poppy round the park every day, seeing friends and family, and other activities, I manage to fit in some fortnightly chemo!! I have a busy fun packed week! Had a fab Segway experience trail with my friend some time ago! Brilliant fun and it is these things that make me feel so alive and well! In fact, over the last year or so, I've felt the best I have throughout this 'journey'. My latest 'thing' is adult painting 'masterpiece by numbers' ! I'm absolutely loving it and have now completed two. One of Poppy and one of my son, wife and two little grandsons. I'm so proud of them and would highly recommend for anyone thinking about it! Another new activity I've become involved in is as one of two patient volunteer facilitators for the charity's 'Chat Togethers' project which I very much enjoy. W

Unfortunately, I was hospitalised from 1-13th March 2020 with sepsis and had to have my port removed. (It's since been replaced) I was pretty unwell for the most part but massively appreciated the love and support of my husband, family, friends and the wonderful people on the forum! I was however very upset when the day before discharge an unknown doctor came into my room, stood between the door and the bed, didn't introduce himself and asked me if I would sign a DNR CPR form! I was so taken aback initially, however, I told him all about me, my cancer journey and how I life a very fulfilling near normal life albeit on continuous chemotherapy. I ensured he knew to mark my records with 'please DO attempt CPR!!! How rude!

Following this episode, I had another three clear CT scans until March 2021 as mentioned earlier. My CT showed a possible lesion on my liver so I had an ultrasound followed by a liver MRI to try to determine if the lesion was a recurrence or not. The MRI was done on 28th and the report shared with us by oncologist on 29th. It seemed to lean more towards it being recurrence but the radiologist was still unsure so a PET scan was next. My Oncologist wrote to my liver surgeon, Mr. Rees in Basingstoke, who had already looked at my scans and requested his radiologist review them prior to my case being discussed at the liver MDT on Tuesday 11th May. I have to admit I was feeling really happy about this speedy approach but very, very anxious too. I got the amazing news that Mr. Rees and the MDT felt that the lesion was BENIGN!! My CEA is stable and within normal limits and it's thought that the lesion is part of the collection of fluid, clips and scar tissue from the complicated liver resection I had back in Jan 2017! We were all over the moon!! This feeling was short lived as although my PET scan showed no activity in the liver πŸ˜€πŸ‘ it showed a possible concern and small uptake in the transverse colon! Off my case went to the colorectal and peritoneal MDT who recommended a colonoscopy. I opted to have this done in Basingstoke so off we went on a road trip with out little Poppy 700 odd miles to Basingstoke! The stay in the first hotel wasn't ideal as I was on low residue diet and had to do the lovely old moviprep fun prior to the scope. Delighted to report that Mr Mohammed did my scope and confirmed all was looking normal. This was just THE very best news after what was a very anxious 4 months. We then drove further down south to Bournemouth for another 4 nights and spent every day at the beach! We even met up with some of my English relatives and spent the day at the beach with them all. The sea was wonderful and it was such a joy to be able to swim multiple times every day without a wetsuit! The sea is way warmer than the Firth of Forth!!

I'm really pleased to report that my last routine CT scan at the end of Sept was clear and this was so reassuring after the many months of worry we've had this year. Now, like a child, I am ridiculously excited about Christmas and itching to get the tree up and the deccies done! πŸŽ„Life is for living! Must I really wait until December??

Finally, I will always be eternally grateful to the skilled surgeons who operated on me Mr Faheez Mohamed, Mr Brendon Moran (CRS and HIPEC) and my liver surgeon, Mr. Merv Rees. I'm also so grateful to my wonderful Oncologist, Nick MacLeod who I've developed a great relationship with since Aug 2017. He's always easily contactable if I need him for anything which is invaluable.

Advice to anyone? Be your own advocate and leave no stone unturned. Don't believe everything you are told!

Congratulations if you managed to read until the end without falling asleep! I do tend to ramble on sometimes! πŸ˜‰ :x::x:

All my love and very best and warmest wishes to each and every one of you!

Karen πŸ’›πŸ’šπŸ’™β€οΈπŸ’œ

(updated profile 19/11/21)