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My Battle with Bowel Cancer

Support: Emotional, Financial and Mental

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I wanted to start this blog with a shout out to the person who has been with me through this whole journey, accompanying me on every appointment, taking on the household chores without complaining, cooking meals, giving me a hug and words of encouragement when I’m feeling down and that’s Phil, my husband. I know when we exchanged wedding vows we said, “In sickness and in health,” but when you’re young, you don’t think that will apply until much later in your married life. I know it’s hard for him to take in what’s going on but he’s dealt with it so wonderfully and I don’t think I could ever repay him.

My best friend

Support comes in many different ways, emotional, physical, mental and financial and I have been overwhelmed by the level of support I have received from family, friends, healthcare professionals, neighbours and work colleagues.

Family is an important support system and my family haven’t failed in this respect with lots of messages of support, flower deliveries, visits and even a handwritten letter through the post! It’s lovely to know that they are all thinking of me and sending me get well vibes.

Friends are another important part of this journey, whether it’s having a cup of coffee in their house, going out for a drink, going for a walk with them or just messaging words of support and checking in to make sure that I’m okay. I have one particular friend who battled breast cancer and won, she is an inspiration to me and she kept a blog about her journey…

Click picture for link to Me, You, Us and Breast Cancer blog

Apart from friends and family, there’s also the professional support from the Macmillan nurses, district nurses, consultants and organisations.

At each consultancy appointment there has been a Macmillan nurse in attendance, always there to provide information when we’re not too sure what is being said, nothing is too much trouble for them. When I was in hospital Phil went down to the shops and Hannah, a Macmillan nurse saw that he was looking distressed and immediately went over to him and had a chat with him, even though it was her lunch break.

Phil is a keen runner and has ran numerous 10K races, so he has entered himself for the Bristol 10K on 14th May, 2023 and is running to raise money for Macmillan.

Click to donate to Phil’s 10K run

There is a place called Maggie’s at Southampton General Hospital which provides free cancer support and provides all sorts of information, workshops, therapy and even financial information. We visited there before a consultant appointment and were very impressed by the work they do there. We sat down and had a chat with one of the staff, it was a very relaxed atmosphere and you could have a free cup of tea or coffee.

Whilst at Maggie’s we wanted to speak with the financial person. I am self employed and so as such am not receiving any money whilst I am having treatment, so we wanted to know what we could apply for and how we go about doing it. Unfortunately she was busy with another couple so we left our contact details being assured that she would contact us in a couple of days.

Meanwhile I set about seeing what I could claim myself and after perusing the Bowel Cancer Support Group UK, which is a great group to find help and advice, I discovered I could apply for ESA (Employment and Support Allowance) and PIP (Personal Independence Payment). I am now receiving the ESA payment, but am waiting on the decision regarding the PIP payment.

True to their word, the financial lady from Maggie’s phoned me and she asked what I had applied for, when I told her I had done the ESA and PIP she said that that was the main ones, but had I applied for the Macmillan grant? I replied that I hadn’t known about that and after asking me for my bank details she then informed me that £350 would be in my account next week! She also said that if I get refused the PIP payment then make an appointment to see her and she’ll fill out the appeal form. So I would definitely recommend a visit to Maggie’s.

Mental wellbeing is a tough one. I know that positive thinking goes a long way to help with the process, but sometimes I’m not in that headspace and the slightest thing can turn me into a blubbering wreck. But I have learned that on the good days, you need to take advantage and as I love all things creative I try to do a bit of art work, whether it’s with polymer clay, watercolour paints or just drawing. I watch YouTube videos of people creating art work and that inspires me to try myself, so the other day I made some polymer flowers, which I was quite pleased with. It made me forget about the word, Cancer, and get lost in an artistic bubble.

Polymer flowers

Of course, writing these blog posts does a lot of good for my mental health as it is quite cathartic and it reminds me that I have a lot of love and support and that I’m not alone in this battle with bowel cancer!

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Coming Home for Christmas

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My bed in hospital was next to the nurse’s station and one morning I heard those magical words… 

"Bed Grey 6, Karen Williams, she is due for discharge today."

Of course I was excited and when the doctor’s did their rounds they confirmed the news, on the proviso that I have a CT scan and that my blood markers came back today all okay.

My porter arrived with the wheelchair to take me to the CT scan, she was a very slight woman but I think she must have been in a rush because we zoomed down the corridors, leaving doctors, nurses and patients in our wake. I clung hold of the arm rests of the wheelchair fearing for my safety and was very relieved when we made it to the scanning room intact. “Some one else will pick you up afterwards,” she informed which, which I was very relieved to hear!

I returned to my ward much more sedately and even had time to talk about the weather to my new porter.

I had my bloods done, after a lot of sighing and tapping of my arm to find a vein by the phlebotomist and the waiting game began and eventually in the afternoon they came back as fine. The nurse on the ward came with my prescriptions from the pharmacy, antibiotics in tablet form, steroids and an injection to thin my blood.

Wait, what? I was going to have to inject myself every night? I had the injection on the ward but the nurse did it for me. She showed me how to do it on a tester pad and I was okay at it, but that wasn’t going in my stomach, I was feeling very panicked about doing that every night for another two weeks.

The discharge procedure was fairly quick and soon Phil was driving me home the Thursday before Christmas. I rested when I got home, warily watching the clock as it speeded towards 8 o’clock, the time of the first injection. I disappeared in the bathroom and got the injection out, the needle wasn’t very long, so I pinched my stomach as I had been shown and injected into it, pushed the liquid inside and held it there for four seconds. It wasn’t as bad as I thought it was going to be and soon got into a routine of going upstairs and doing it.

MRI Scanner

Two days after being discharged I had to go for a MRI scan. As I was prepped to go into the tunnel, they asked if I wanted to listen to music as the machine was very loud, I chose what they were already listening to which was 70s soul. It seemed to take forever and it felt like being inside a washing machine. The last rumblings sounded like the final spin on a washing machine and I hoped it was the last round of x-rays, which thank goodness it was. It wasn’t until I got out of the scanner that I thought to myself, “Why didn’t I ask to listen to Abba? My favourite group of all time?” Note to self: next scan ask for Abba!

Christmas was a lovely family affair, we had two Christmases, one with Phil’s parents, our daughter, Amy and son-in-law Dave and the two grandchildren, Olivia and Harry and then another one on the 27th December with my son, Jack and his fiancée, Zoe, together with Amy and Dave and the grandchildren.

Our Two Christmases

After Christmas and New Year it was a bump back to reality with two meetings with the oncologist consultant, Professor Iveson and the surgeon, Dr. West.

Professor Iveson explained the chemotherapy treatment to me which was six treatments every two weeks, which would take three months. The chemotherapy used is called FOLOX and he told me the side affects which to expect to experience: throat spasms if I drank anything too cold, neurology affecting my fingers and feet if they got too cold, feeling hot or flushed, feeling dizzy. Luckily with this treatment I wouldn’t be losing my hair, just a general thinning of it. I would need to have a PICC line inserted which is a long thing tube which is inserted into a vein in your arm and passed through to the larger veins near your heart. I didn’t really like the sound of that, but it will negate my having to have cannulas all the time, so that was a big plus for me.

The meeting with Dr. West, the surgeon, was a bit of a shocker if I’m honest. He was very forthright and informed us that according to the CT scan it looked like the cancer had attached itself to my bladder, but on the MRI scan it showed that it might just be pushed up against it, but he wouldn’t find out until he operated what was actually going on. He told us that I would be having a new treatment called HIPEC (Hyperthermic Intraperitoneal Chemotherapy). From what we understood, it is a procedure that floods the area of the tumour with a chemotherapy solution over a 90 minute period. I have linked a video which explains it a lot better than I can!

Dr. West did tell us that we had a choice of whether to go ahead with the treatment or not, but warned us that if I opted for no chemotherapy or the operation then I would have about a year to live. So of course, we opted to have all the treatment! He did say that if the bladder was infected I may lose it and end up with two bags, one for poo and one for wee, but that’s just something I would have to live with, it’s better than the other alternative!

Both consultants stressed the need for exercise for both the chemotherapy and the operation, so I have been going out for walks with a friend, Lisa, about 3.5k twice a week and I walked the local Park Run, 5K, with another friend called Lisa and in between days I have been going out for walks by myself around our village.

As we were leaving the Dr. West appointment, he said to us, “Don’t forget you’re not alone, you’ve got a big team supporting you.” I knew what he meant, at every consultancy meeting there has been a Macmillan nurse there, in the background, but giving reassuring words when needed. Whilst in hospital I was visited by the stoma nurse, a physiotherapist, Macmillan nurses, doctors and nurses, all of which were so understanding and helpful, nothing was too much trouble. As well as the professional teams, I have had wonderful support from family, friends, Facebook groups and work colleagues, old and new. I will do a separate blog about support, as it is such an important part of this journey.

I have to admit that after the meeting with Dr. West, Phil and I went to the M&S cafe in the Southampton General Hospital and I was fighting to hold back the tears and Phil was visibly upset, it felt like we had just been told that I had cancer again. But at least now we are more readily prepared for what is going to happen in the future.

We spent the next couple of weeks visiting family: Amy and Dave and the grandkids, my brother, Frank and sister-in-law, Krys in Buckingham, visiting friends and having friends round, we even hosted a Burn’s Night, just to keep our minds off what was looming in the future.

So the next challenge was having the PICC line inserted and then the day after starting chemotherapy…. wish me luck!

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Two Weeks and One Day in Hospital

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(Not that I was counting!)

Waking up the next morning after my eventful night with the leaking stoma bag, I felt like I had been punched in the stomach. I wasn’t keen on looking at my stomach and so kept the blanket firmly over my tummy.

A visit from Dr West, the surgeon, during the morning rounds confirmed that the operation had gone well was welcome news and I laid back in bed contemplating what had happened in the last 24 hours.

It was a female ward and the lady opposite quickly made herself known to me and introduced herself as Christine and I thanked her for her help during the night in getting the nurse’s attention.

My course of treatment was basically antibiotics to heal the tumour which were administered through a cannula. Well, so began my love/hate relationship with cannulas, so much so that I ended up with bruises all over my hands and arms in the many attempts to get a needle in.

I was allowed a beef broth and ice cream for lunch and tea, which the beef froth I became a little addicted to, which was just as well as that was all I was allowed to drink for another few days.

There were still Covid regulations being followed so I was only allowed one visitor for an hour a day, which was obviously Phil on most days, but during my stay I did have a couple of visits from my daughter, Amy, and two friends came for a visit which definitely broke up the monotony.

A stay in hospital if you’re not in particular pain can be very boring, but you do get used to the routine of hospital life. You learn what time they wake you up to take your blood pressure: 6:00 AM, breakfast is served at 7:00 AM and the doctors do their rounds at 8:00 AM. Drug run is after that and then not too much goes on unless you have a particular professional coming to speak to you. Lunch is at 12:00 AM and then visitors can come after 2:00 PM. Dinner at 5:00 PM and then the night drug run starts at around 8:00 PM.

I had to have antibiotics three times a day and it was a time I became to dread because it wasn’t given by a drip but by a pump and because the cannula I had used a small valve it blew it out and I would then be in unbelievable pain. I must have had a new cannula every day with the same result until I begged that they give me the antibiotics orally, which I was told was not feasible.

I got myself into a state, crying and saying that I couldn’t do it any longer, when the matron turned up. She gave me a hug and asked if she could try, I shrugged and said, “You can have a go if you want to.” Well, she found a vein straight away and this cannula stayed in until I left hospital, I was a very happy patient!

Halfway through my hospital stay I moved to a lower dependency ward, although at first I wasn’t happy as I liked where I was, it ended up being much nicer.

There is a standing joke between our friends that Phil knows somebody wherever we are. It even happened a year ago, we were walking along a dock in Barbados to board a cruise ship when we hear someone call out his name – it was an ex-police officer who was now working on security on board!

Well, you can guess where this is going – there was a new lady who joined our ward and as soon as Phil walked into the ward, he said hello to her. She works in one of the units which Phil is in charge of! It was nice to have somebody to talk to, we shared our stories and gave words of encouragement when feeling a bit down. It was quite sad for me when she was discharged, but I was very pleased for her!

There were also some characters on the ward, one who decided to discharge herself the day after she had had her operation, got dressed and simply left the ward. Another one who had nightmares and hallucinations during the night and every morning asked me if I had heard the ghosts in the corridor… I didn’t.

Ghostly picture…

All the time I was painfully aware that Christmas was approaching and I definitely didn’t want to be in hospital during that time. So it was a huge relief when I was eventually discharged on 22nd December, 2022, I was going to see my family at Christmas!!

My Battle with Bowel Cancer

Adjusting to life with a stoma bag

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I could faintly hear a voice saying, “Wake up Karen, wake up,” and as I opened my eyes I could see I was in the recovery room. “Everything went well,” I was reassured, “and now we’re taking you back to the ward.” I nodded, feeling my eyes close once again.

Once we were back on the ward I could tell that I was hooked up to all kinds of machines and I felt like I had been punched in the stomach. It was around nine o’clock and so I fell back into a sleep.

I woke up in the middle of the night, something wasn’t right, I felt down my right side, it was sodden, well everything was, my gown and my sheets were drenched. I thought the worst, “I’m bleeding out,” and I looked for the alarm button but couldn’t find it. Luckily, the lady opposite me was up out of her bed and so I asked her to fetch somebody for me, which she duly did.

Two nurses came, one was a huge man, they took one look at me and gasped. On closer inspection they discovered that my stoma bag hadn’t been closed at the bottom and so all the waste was going straight through. So the male nurse gathered me up in his arms, (yes, he was that strong!) and sat me down next to the bed while the other nurse stripped the bed.

I was past caring as the male nurse wiped me down, carefully avoiding all the tubes and changed my gown, I just stood obediently half asleep, waiting to be lifted back in bed.

The next morning the stoma nurse visited me. I hadn’t really looked at the bag and to be honest, I wasn’t sure that I wanted to and when I told her about the leaking stoma bag she said, “Well, that’s a great introduction to having one!” She showed me how to empty it into a bowl while I was laying in bed and said she’d be back in a couple of days to show me how to change the bag. I wasn’t really looking forward to that, but I knew it was something I would have to get used to.

As the days went on I became more confident in handling the stoma bag, I still had to empty it in a bowl, so that the nurses could record the flow and sometimes it made me feel a bit queasy but overall it was okay.

The stoma nurse showed me how to change the bag, which entailed measuring the stoma and cutting a hole to fit it, cleaning it, cleaning the skin around it and putting it on so that it sat nicely on your stomach. It does feel good when you have a new bag on. (I never thought I’d say that!)

I spent the next two weeks in hospital (which I will go into more detail in a separate blog) and during that time me and my stoma got to know each other a little better each day. I was on a low fibre diet and things like sweeetcorn, peas, skins on potatoes, skins on fruits, nuts, seeds, spicy food, are all a total no no. The menu at the hospital was:

Hospital Menu
Sandwiches and Desserts

I was discharged by the stoma nurses after seeing them three times and showing I could change a bag by myself and it became routine emptying it, day and night.

I was given a bag of supplies provided by a company called Fittleworth, which are of no cost, so you just telephone them when you need some more supplies. There are lots of different stoma bags available, so if you can’t get on with one, there’s always another to try. I was having trouble with red skin around the stoma, so they changed the bag to a more raised one and that is much better.

So, when I was discharged from the hospital, me and my stoma went home, did it go well? You’ll find out in my next blog about Life At Home With A Stoma Bag…

My Battle with Bowel Cancer

An Unplanned Operation

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In the days following the colonoscopy, I began to feel unwell, having trouble going to the toilet, feeling very tired and having to drink all the time.

We went to a Carol Service in Winchester Cathedral but I missed most of it as I was sat on the toilet in the deep bowels (!) of the cathedral. I let Phil run wild with the Christmas decorations, putting up decorations that I normally left in the boxes, but I was too tired to argue and just laid on the settee watching him, biting my tongue.

I missed Christmas events because I simply felt too poorly to go and would lay in bed after I’d finished my work (I work from home) and take an hours nap, but still feel tired when I woke up.

I went for a CT scan, where they had the usual problem of inserting a cannula in my arm, my veins don’t like it and magically disappear at the sight of a needle! That went okay, the feeling of having wet yourself at one point during the scan sure felt weird!

Then the symptoms stepped up a notch, I felt extraordinary tired, I felt hot, I felt cold, I uncontrollably shivered, even though I was under the duvet fully clothed with a jumper on. Once I was tempted to phone for an ambulance, but I had an appointment with the consultant the next day so I decided that I would tell him instead.

We arrived for the consultation and everything seemed to be going well until I mentioned the pain in my stomach and the feverish symptoms and the consultant decided that I needed an emergency CT scan to see what was going on.

I was admitted to a hospital bed to wait for my CT scan, it was about 7 PM at this time. We decided it was best for Phil to go home because who knew what time I would be taken down, so he left waiting for the call to come and collect me.

I went down for my second CT scan and then had to wait for the result.

I was told that the tumour had perforated and that was why I was in a lot of pain, I was to be transferred to the Surgical Unit and prepared for an operation. I was moved to the new ward at 2 AM, dozing on and off until the morning.

I was visited by the consultant, who I know now was Mr West and he explained to me what he was going to do. He was going to give me a stoma bag so that the poo will bypass the tumour and not infect it more, then they were going to pump me full of antibiotics.

I had a visit from a stoma nurse who marked on my stomach where the stoma was going to be placed, she explained what it did, but I didn’t really take it all in. Hannah, the Macmillan nurse came and spoke with me, but again, I can’t remember much about what was said.

Unbeknown to me, the consultant had phoned Phil and told him to come over to the hospital to see me before I went down for the operation as it was pretty serious, they didn’t know what they were going to find whilst operating.

After seeing Phil and putting those delightful stockings on, I was taken down to the theatre, I was shaking, not from a fever this time, but from nerves. The operating staff were lovely, making me relax before I drifted off…

My Battle with Bowel Cancer

The Colonoscopy

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The day before the colonoscopy I had to take some laxatives to clear my bowels, not that there was much in them as I hadn’t had much to eat in the previous few days. The Screening Programme sent me a package containing sachets of Klean prep to be taken at 9 AM, midday, 3 PM and 6PM with one litre of water.

I managed to force down the first lot, but at midday the thought of drinking another litre was frankly vomit inducing. But, I tried and every mouthful came back up much quicker than it went down. This wasn’t gonna happen, so I phoned the Screening Programme to explain what was going on. The lady informed me that there was another product I could try which was called MoviPrep and that it was more palatable than Klean, not a lot, but a bit. I was willing to try anything at this point and so she said she would bring it round to my house, which was unbelievably kind of her.

So, after some advice to dilute it with a juice (not blackcurrant) and drink it through a straw, I powered through and managed to complete the course of treatment.

The next day I arrived at Southampton General Hospital, said goodbye to Phil and ventured up to the Endoscopy Department. After filling in a questionnaire about my health (I had already gone through this via a telephone call a couple of days before), I was led into a room.

After signing a waiver in case anything went wrong, a cannula was inserted and I was taken to the treatment room.

I think it struck me there and then when I was laying on the treatment table that this could be serious. They asked if I would like to watch what was happening and I said that I would, so they moved the screen closer to me.

I watched and all seemed to be going well until I noticed a change in the atmosphere, things got a little serious and they moved the screen further from me, I guessed things weren’t as straightforward as I’d hoped.

After the colonoscopy I was taken to a recovery ward where one of nurses said to me that the doctor would like to speak with me and my husband about his findings. I knew then why this was and I laid in the bed staring blankly in front of me, dreading the moment when I saw the doctor.

We were led into a small room where the doctor, the lady from the screening programme and a Macmillan nurse were waiting for us. My heart sank as I saw the Macmillan nurse, confirming what my suspicions were. The doctor pulled no punches, he told us they had found a tumour and he had done this job long enough to know that it was cancer. They were sending off a biopsy but he was going to go ahead and get things in motion as there was no point in waiting for the result of the biopsy.

The doctor and the lady from the screening programme left and we were sat with the Macmillan nurse, I looked at Phil who was in tears and I started to cry as well, we couldn’t believe it was happening.

The Macmillan nurse was super supportive, explaining next steps and handing us some brochures, reassuring us and answering any questions we had.

We left the hospital in a bit of a daze, knowing that the hardest part was still to come – telling our children and family and friends what we had just found out.

My Battle with Bowel Cancer

The very beginning…

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I have thought long and hard about writing this blog about what has happened to me in the last six weeks, to be honest it seems like I’m talking about somebody else, it’s all still a bit surreal.

I spoke to friends and family who all encouraged me to share my experiences in the hope that it might help somebody else who is going through the same tough time as I am.

I can remember the very first time I was in terrible pain, my stomach felt like there were knives inside carving me up. It was the afternoon of the Queen’s Platinum Jubilee Bank Holiday, I was in tears with the pain and so we went to a walk-in clinic, but typically as I waited to see the doctor the pain subsided. When the doctor examined me he couldn’t find anything wrong, put it down to a virus and prescribed me some diarrhoea sachets.

A few days later my doctor phoned me up, he did sound concerned and told me that if I had the pain again to go and see him straight away, this did worry me a little but as I wasn’t in pain anymore I forgot all about it.

Skip forward three months and we are going on a cruise in America. I wasn’t feeling that great, I had a stomach ache and found myself sitting on the toilet far more frequently that I ever did before. My poo varied from healthy to slimy to containing some blood, but I put it down to stress: preparing for the holiday, getting work done before we went, etc.

I can remember that whilst we were on the plane the stomach pain got worse, I couldn’t face any food and couldn’t concentrate on watching a film or reading a book. For the first three days of the holiday I wasn’t feeling good, sticking to bland food (such a waste with the wonderful food that was on offer), but I felt it would be better for me.

Then the pain stopped and I started to eat the lovely food and I put it down to being able to relax on the ship and taking it easy.

Once home, there was a bowel cancer screening kit waiting for me, I wondered if this was a sign, of course I had Googled my symptoms and also the symptoms of bowel cancer, but I never for one moment thought that was what I had, thinking it would be IBS or maybe even piles.

So I duly did my sample, noting that there was blood in the poo and thinking to myself, “That’s a good one to send them, hopefully they’ll tell me what’s wrong.”

About a week later I got a letter from the Bowel Cancer Screening Programme to say that my kit result showed that further tests were needed. I had to have a colonoscopy to detect if it was bowel cancer or not, or whether it was polyps which would be removed during the colonoscopy.

I had the date of my colonoscopy: 22nd November, 2022, to say I was nervous is an understatement.