When I was first diagnosed with bowel cancer in 2016, I started writing a diary. I decided to include some extracts here to try and give an inside perspective of what was going on.
Monday 1st August 2016
I called in sick to work today and felt really guilty. I have never had a day off sick since starting in February this year and felt like a bit of a “sick note” since I didn’t really feel that unwell. But I had been up all night feeling sick and feverish and had spent the weekend suffering with digestive pains and really felt like I needed a day to recover in bed. Last night I cooked chilli for dinner, one of my favourite meals but couldn’t bring myself to eat it as I felt so ill, and when I’m off my food that’s my body telling me something isn’t quite right.
After speaking to a colleague on the phone, I got back in bed, flopped down and relaxed. My insides started to cramp horribly again, I put my hand on my stomach to try and rub my tummy better. As I did, I suddenly felt a lump underneath my skin! I was quite shocked as it felt quite large and I quickly moved my hand to my right side to see if I also had a lump there – maybe I was imagining things and it felt the same the other side, but no, another prod and poke revealed there was definitely something there. It was about as long as my palm and as wide as two fingers.
My first thought was that it must be a hernia, maybe caused my lifting a heavy box at work or doing weights at the gym. I rang my doctors and by this time I was in tears, so upset at the thought of having a possible hernia. I booked an appointment with the Nurse Practitioner as the GP was unavailable.
I then read up on hernias: associated symptoms included stomach pain, fever, loss of appetite. I thought to myself: “yep that’s definitely what it is!” I began to get upset because I knew I was likely going to need surgery and that would mean having to take time off work. If I’d known then what I know now I’d have been happy to have had a “mere hernia” (in fact I now have three following all my surgeries!). This was the last day of my “normal” life before cancer came into it.
Later that day at my GPs, the Nurse Practitioner examined me, asked me questions about my bowel movements and took my temperature. He seemed a bit unsure what to say to me so called in a GP for a “second opinion”. My GP repeated the same questions:
“have you noticed any change in your bowel movements?” (yes – I had gone from having one poo a day to several smaller ones)
“have you had any blood in your stool?” (No I hadn’t)
“have you lost weight recently?” (No, if anything I was feeling heavier and more bloated)
These questions, I now know, can shed light on the possibility of a patient having bowel cancer. All I can remember at the time was being very confused and thinking: “Are you sure it’s not a hernia?”
The doctor told me he thought my colon could be blocked with faeces. (“That would explain my stomach pains!” I thought) He decided to send me for CT scan at the hospital just to be sure. I’d never heard of a CT scan before and was blissfully unaware that (among other things) they are used to diagnose cancer.
Looking back now, I can see how quickly my GP and the hospital acted in getting me scanned. But having no previous experience with these things I was unaware that many signs were pointing to cancer and that’s why I was hastily sent to the hospital. The doctor advised that someone should take me there – perhaps aware that I might be in for a couple of days – so I rang my mother-in-law, Sheila, (who proceeded to go into panic mode. I remember telling her to calm down and that everything was fine, this was just a precaution, we’d all be back home that evening having dinner and laughing about Heidi and her silly blocked bowels!
So off we trundled to the hospital. I went to the Surgical Assessment Unit at Colchester General hospital to await my scan. At one point I sat on the bed next to Sheila and the nurses wheeled a trolley over to me. One of them said to me, “we need to take some blood”. I started to sweat and panic and Sheila explained I’m not very good with needles (understatement: I am extremely needlephobic!). The nurses were very nice and said it would all be fine and just to relax. Unfortunately for me they let the student nurse loose on me and as she put the needle it was so painful! I started crying as the pain got worse but eventually they got all they needed and wheeled the trolley away, leaving me sobbing on the bed. They also took urine samples and kept monitoring my temperature.
I genuinely expected them to come back and say that nothing had shown up from the blood results but they told me my blood count was really quite low. “Do you feel tired?” they said, I replied, “yes but everyone’s tired aren’t they, when you work full time and have a busy life.” And they said, “yes but Heidi you are severely anaemic and it’s not normal to feel this tired.” So I thought, “oh this is NOT normal” and began to feel a bit better about the fact that I’d lately been too tired to cook dinners at home and failed to run a 5K race that I had taken part in for Cancer Research UK only three weeks previously.
The scan didn’t happen that day so I had to stay in the hospital overnight. I’d never had to do this before and that night, after spending a day being stuck with needles, asked the same questions again and again, not able to eat, I lay in bed and cried quietly to myself.
The ward was full of patients snoring or crying out in pain while the very loud Scottish nurse on night shift did little more than throw paracetamol at anyone complaining of being in pain. My husband had brought me some overnight things in, including my noise-cancelling headphones (which eventually helped me get some sleep), but all I wanted was to be cuddled up with him in our cosy bed, not laying on a plastic mattress surrounded by strangers.
I felt very scared but was also convinced that nothing was majorly wrong with me. The doctors and nurses also seemed to behave in a very relaxed way that made me think there was nothing serious about my condition, the fact that my scan hadn’t been done that day only further confirmed my thoughts that everything was going to be fine.
Tuesday 2nd August 2016
I woke up early in hospital having hardly slept. How anyone can get rest on a ward I don’t know. Laying there all night listening to the woman next to me snoring and others crying out in pain throughout the night was horrendous.
I felt lucky I was able to get up and take myself to the loo; the poor lady opposite me had two dislocated hips and a dislocated shoulder meaning she had to get the nurse to bring a bed pan every couple of hours. She was in so much pain, I felt like going over to comfort her but you never know if people want that. This was the first night I’d spent in hospital since being born 36 years ago and I was unsure if that was the done thing. Luckily she was sent down for her op that day after waiting three days for a theatre slot to become available.
Early that morning I rushed to type an email to my boss explaining I was in hospital still, having tests, likely to be back at work tomorrow or Thursday. Then, all of a sudden, a nurse arrived with a wheelchair, “Heidi?” he said. It was time for my CT scan.
As I climbed aboard the wheelchair, finding it weird that I had to be wheeled down there despite being able to walk, the nurse said, “now, it will be very quick, we’ll pop a cannula in your arm, and then…” at which point I burst into tears. I didn’t know that the scan also involved needles so I instantly panicked.
My arm had come up in a big black bruise after yesterday’s episode and the thought of more needles was too much to bare! Sobbing, I was wheeled through the corridors of Colchester General explaining my needle phobia. Anyone who saw me must have thought I was being wheeled to my death!
The CT scan was quick but not pleasant. The cannula hurt my arm, and when the liquid was released into my veins it felt like it went straight to my bladder (this is totally normal apparently!), making me feel like I was going to wet myself – again normal. They laid me on a thin metal bed that whizzed me forwards and backwards telling me when to breathe in and out. It sounds so straightforward to say it now but to me it was unknown and scary and I continued to cry.
Back in my bed on the ward, I lay there feeling very sorry for myself and wondering what on earth was going on when suddenly my curtains were whipped aside and there stood a consultant with six or seven junior doctors.
The wall of faces, some with clipboards and notepads looked at me and I felt like some kind of exhibit with the way they were staring down at me. Some of them asked if they could examine my stomach, “oh yes, no problem” I said pulling up my hospital gown in an overly cheerful manner, as if offering a plate of biscuits. They prodded and poked my abdomen, asking me about my pain and murmured to each other about what they could feel, taking notes at the same time.
In an emergency admission to hospital weeks later, I happened upon one of these junior doctors when he was working on another ward. He told me that this had been their first day as junior doctors and that he remembered me. This makes sense as they all seemed quite on edge and were so frantic in their note-taking while the consultant explained my symptoms and what the lump felt like. I remember thinking it was nice that this doctor remembered me, it must have been my polite offering to feel my stomach that stuck in his mind! Or maybe it was the bad news I received that day.
After the prodding had finished, the consultant turned to me and explained the CT scan showed a mass in my small bowel and it was pretty clear that it was a tumour. “Okay…” I thought as he explained that it was likely a lymphoma (something I had never heard of!) and was very treatable. He said he would come and explain further when my husband arrived at the hospital and they all awkwardly shuffled out of my cubicle leaving me on my own. I lay there feeling confused.
The faces of the junior doctors showed pity and a couple of them smiled at me weakly while their superior spoke and his words seem to mesh into a confused bundle in my mind. After they’d left, I phoned my husband, Pete and told him the results showed a tumour but they wanted to explain it further with him here, “it doesn’t sound good, I think it might be something really bad” I said to him, feeling scared. “I’m coming now” he replied.
A matron entered my cubicle and sat on my bed. The consultant had asked her to come in and comfort me, “you’ve just been given some very bad news,” she said, patting my hand. “Oh. Have I?” I thought “well yes a tumour is not good, but the doc said it’s treatable…isn’t it?” So far, no one had mentioned the dreaded C word and I was totally confused about what was wrong. She asked me if I had children, “no” I replied, thinking, “why the hell is that relevant?” (By the way, without doubt, this is THE MOST common question you’re asked when you’re a 30-something woman in hospital!) I decided not to mention that we had just decided to start trying for a baby as it would only seem to add to the bad news.
The matron then said to me in her soft Welsh accent, “now, I know this might sound a funny thing to say, but would you like a nice cup of tea?” My eyes lit up, “that would be lovely, thank you!” I hadn’t been allowed to eat or drink for a day so I was very excited by her offer. Tea makes everything better, even when you do have a massive tumour in your tum!
At that point my bed was quickly moved into a private room, it was lovely to be off the ward but made me anxious as clearly the “powers that be” deemed it necessary that I should have some privacy. I sat on my own, sipping my tea and feeling so confused, I really didn’t understand what was going on and wondered when someone was going to give me some straight answers.
I suddenly realised none of my family knew I was in hospital. I rang my mum, gave her a summary of what I knew (very little at this stage) and she immediately started the hour or so drive to Colchester. I rang my dad, confusedly explaining I had a tumour but I’m not sure what it means and I should find out more soon, he said he’d ring my brother and sister and tell them. Shortly after, Pete arrived and the consultant came back to see us. After a lot of very skilful skipping around the diagnosis and treatment, he finally uttered that dreaded word: Cancer.
The doctor told us that the mass in my abdomen was likely a lymphoma. He said of all the cancers to have that this was “one of the best” (yes, really! And as it turned out, I didn’t have lymphoma at all!) because it’s so treatable and a course of chemotherapy just melts it away. I sat on the bed and his words just turned into a blur as the word “cancer” reverberated around my brain.
As he left the room I burst into tears and hugged Pete. I’ve got cancer. I can’t believe it, fucking cancer! All I could think is that I didn’t feel that unwell, how can I have cancer? I did a twenty mile bikeride last weekend! They must have made a mistake! My mind was spinning, the doctor had also asked if we had children, “no” we’d replied and saw the concerned look in his eyes, our chance of having a family may have just gone out the window.
My mum arrived soon after and we explained what the doctors had told us, as Pete went off to get some drinks my mum sat on the bed and hugged me. At that time I suddenly felt so upset about the possibility of not being able to have children rather than having cancer and told my mum I was worried that Pete might not want to be with me if I couldn’t give him kids. She told me to stop being silly and that Pete loved me no matter what. My mind felt like a spinning whirlwind and all of a sudden my future seemed so unclear.
That day I was moved to another ward in a side room again and had various visits from different doctors. They said they needed to confirm the diagnosis with a biopsy. In my mind, I interpreted this lack of instant diagnosis as: “you may not definitely have cancer”.
What I didn’t realise is that scans and blood tests don’t tell you anything other than something abnormal is going on in your body. To get a confirmed diagnosis, they need an actual piece of the tissue to be sent off and analysed by clever people with microscopes. Prior to my first operation my surgeon later explained that when they operate, they have to “feel” for the bits of cancer, so they poke around and anything that’s hard or looks abnormal is removed (if safe to do so) and anything that looks normal is left – it sounds quite simple really doesn’t it!?
Looking back, I was ignoring all the signs that this was almost certainly cancer and clinging to the very small chance that it was some other mass – maybe just a large piece of undigested cake?
That evening my sister and six year old nephew came to visit. I remember his scared little face looking at the cannulas in my bruised arms and all the hospital equipment in bewilderment. I think my sister looked equally perturbed by it all. As he walked towards my bed he looked uncomfortable and was probably wondering what on earth was going on! I said to him, “have you got any toys with you?” His eyes lit up and he grabbed his bag and pulled out several Lego men and some trains and I said he could play with them on the bed. This little slice of normality seemed to work for him and to be honest it had the same effect on me! It felt like bliss to lay in bed and play Lego with a six year old after the dramas of the last couple of days.
Our best friends Amanda and Simon then paid a visit. We chatted about normal stuff and Amanda joked about me being a drama queen. After two days in hospital it was wonderful to have a chat and a laugh with friends who I consider to be family and I felt genuinely happy for the first time in a couple of days. I don’t know what we talked about, but I remember laughing so much that I was worried patients on the ward would complain! People say laughter is the best medicine and I totally agree, it lifts the spirits and makes you feel relaxed and determined. Laughing with friends and family really has been key throughout my cancer battle.
My dad and stepmum came to visit too and so began that guilt you feel as a cancer patient that you’re causing so much worry for everyone. My dad gave me a hug and squeezed my hand so tight; these actions saying everything that I knew he would never be able to put in words – I love you, I’m worried, let’s hope everything will be okay.
It was lovely to have family and friends visiting but while we chatted and laughed there was also clearly an elephant in the room. I’m sure in the back of all of our minds we all wondered what the outcome of all this would be. Except for my nephew who was blissfully unaware and playing with his Lego, ah the joys of being six years old!
That night I lay in bed and cried again. I felt so alone and scared and was finding it impossible to sleep. I kept telling myself that this could all come to nothing. I thought about my husband Pete, at home in our bed without me and I felt upset. I missed our cats and hoped they were snuggled up with him, keeping him company. I laid awake most of the night and messaged him to say could he call me when he was awake, I wanted to see him as soon as possible the next day.
Wednesday 3rd August 2016
I mainly spent this afternoon lying on a bed in a corridor. After several delays, I was still waiting to go into theatre for the biopsy. I hadn’t eaten for three days and was well and truly fed up with being in hospital. I was paranoid that the tumour was getting bigger, but the haematologist said the bowel is constantly expanding and contracting, so it was unlikely it was growing by the day.
The biopsy, as expected, was horrid. The sharp needle delved so far into my abdomen I thought it would come out of my back! They can limit the pain only so much with local anaesthetic but ultimately they just have to go for it and I laid on the operating table and cried.
Afterwards the surgeon said to me, “the best you can hope for is that it’s a fatty build up or an abnormal growth in your bowel”. Well I hoped for the best, but a few days later, I was told the absolute worst.
There’s more to come, watch this space…