Bowel Cancer - My Story
Written three weeks after surgery July 2021
Following my instagram post here I just wanted to share my cancer story in more detail in the hope of raising awareness and helping anyone else in a similar situation.
We are all totally different with different bodies, experiences, treatments etc. This is just what happened to me.
This is a good cancer story with a happy ending. I am unbelievably lucky to live in the UK with access to the incredible NHS. My story is why early detection is so important and cancer can be beaten.
!WARNING! THERE ARE SOME UNPLEASENT PHOTOS COMING UP OF WOUNDS AND POO.
If you don't have time to read everything below please just read this ...
Bowel Cancer Symptoms
- change in bowel habits - constipation, diarrhoea, get to know YOUR normal bowel habits
- blood / mucus in your poo or when you wipe
- uncomfortable bloating / pain in your lower abdomen (mine was like period pain)
- feeling more tired than usual
- unexpected weight loss
YOU ARE NEVER TOO YOUNG
If you have one or any of these symptoms persistently, go to the doctor and get it checked. If there's blood take a photo to show your doctor.
If it looks like piles and IBS, which it probably is, go back to the doctor if they haven't gone away in 3 months.
Get a blood test and stool test.
If in doubt get a colonoscopy.
Cancer is sneaky, you don't have to have continuous symptoms. I felt 100% healthy except for the blood.
Keep a diary of your symptoms, I wish I had gone back to the doctors after the third time I had bleeding.
For the best info on bowel cancer and stomas.
How it started -
I wish I knew what caused my cancer. My consultant thought it started around a year to 18 months ago and back then I was healthy but crazy busy with work, stressed out about all sorts of nonsense like the election and Brexit and definitely not drinking enough water or eating sensibly. I would often get home from work realising I hadn't eaten or drank all day and then stuffed myself in the evenings. This may or may not have been the trigger.
I was however a healthy weight, I didn't smoke (I had as a teenager and then socially) and drank no more than 3 units a week. I was mostly vegetarian and exercised at the gym or ran regularly. I had never had food poisoning or diarrhoea or any family history of bowel cancer.
I've gone round in circles asking could it be the fabrics, could it be the dehydration, could it be Dominic Cummings? Who knows!
What I have learned about cancer from my nurses, is that unless you are continuously doing something awful to your body like smoking, simmering on sunbeds, getting wasted everyday or eating 8 sausages in lard each breakfast its really just down to your cells renewing as they do and sometimes going wrong.
Unless your aim is to get cancer, its not your fault. Fit vegan nuns get cancer too.
Blood in Poo -
My only symptoms were blood in my poo and some bloating. In January 2020 I had a tiny bit of blood in my poo and then again the following week with some bad bloating after a stodgy meal out. It was easy to dismiss as it was gone the next day.
In February 2020 there was blood in my poo again after a meal out. The meals out may have just been when I ate more and put a little more stress on my colon causing a bleed. In hindsight I am really lucky there was an obvious symptom like blood.
I went to the doctors, (I have the best doctors ever that I totally trust) and the lady doctor examined my bum with a finger for any lumps and said it was probably a bit of IBS and piles. This made perfect sense and I went on my way with no reason to think otherwise.
I had a blood test just to check for anaemia and it all came back fine. I just needed to take care of my body by eating more fibre, drink more water and chill out.
Fingers in Bums -
Having a finger up your bum in a clinical setting is really no big deal. The Doctors don't care about your bum and even if they did, you need them to check. It lasts all of 30 seconds, doesn't hurt and its a weird situation you can laugh about later. It would be a whole lot more embarrassing to make a fuss about it or not have it done and die.
More Blood -
The blood didn't come back for a couple of months and then would come back once every 6 - 8 weeks. It would always be around birthdays and Christmas where I probably ate more. It was easy to forget about it at this rate as it would just happen once and be gone, it was never explosive just a normal poo with a little blood on top. This continued until February 2021 when my poo suddenly looked just like a blood clot.
Yes I took photos!
This is the best way for a doctor to understand the type of blood you are talking about and what is causing it. A picture really does speak a thousand words and if I hadn't taken this picture I wouldn't have had my colonoscopy.
The black splodges are deep red blood clots. The colour version was too gross to share.
What the blood looked like -
The blood was usually a deep red and was streaked over my poo a bit like strawberry sauce on an ice cream. It wasn't bright red it was deep red wine colour and only a little of it. Bright red blood is fresh and nearby, darker is older. Think pillar box red vs red wine red. The poo that got the colonoscopy was a thick blood clot on top of a tiny poo (pictured above left).
The bloating -
I love food and would often eat little in the day and lots in the evening. If we had a takeaway or pizza or pasta I would be bloated, all quite normal I thought. But maybe a bit more uncomfortable than most with some sharp lower abdomen pains and a swollen tummy.
Tests and Colonoscopy Referral -
I went straight back to the doctors in February 2021 who saw me within half an hour during lockdown. He examined my bum with a finger (there was a female chaperone), no piles, he thought I should have a Colonoscopy but it was probably nothing to worry about considering my age. The blood came back the following week and my doctor got me an urgent cancer referral and blood and stool samples taken. The samples still came back clear despite blood being in the stool.
The phone consultation NEVER TOO YOUNG -
I had a telephone consultation within 2 weeks. It was sadly with a locum who started by saying 'you're a healthy 37 yr old woman, why do you think you have bowel cancer?' 'I don't!' I replied. This was the first real mention of cancer.
I then proceeded to argue that it wasn't piles, the blood was dark and I needed to get it checked out. Thankfully he gave in when I told him I had smoked as a teenager but still insisted it was piles. 2 weeks later I had my colonoscopy.
The Prep -
Before you have a colonoscopy you need to do the prep. Its tough!
Your bowels need to be squeaky clean for the camera so 3 days before you eat white processed food no dairy, fruit, veg, etc. fibre - I was veggie at the time so I had cream crackers, rich tea biscuits, white rice and boiled carrots and chips.
1 day before I was to have only clear liquids and drink a laxative (Picolax) with Senna tablets at 12pm and 4pm. I drank lots of water and Lucozade and sat on the bed running to the toilet every 10 mins. It kicked in about an hour after taking the picolax and calmed down a few hours afterwards.
The Senna has a longer effect so at 3am thinking I was all done, I rushed to the toilet. I had terrible cramps, some faint bleeding and then proceeded to collapse on the floor with my pants round my ankles. I was so scared my husband would come to find me like this in a pool of blood! After sweating buckets, a lot of deep breathing and willing myself to stay awake, I came round and realised I was ok. I hadn't made a mess as there was nothing left in my body.
My advice, keep drinking water and Lucozade throughout the night as the cramp is bad.
The Colonosopy -
My colonoscopy was at 8am the following morning, I could have a small glass of water in the morning and that was it. I was pretty exhausted. The nurses at the hospital were amazing and once in, they showed me to a little private room to wait whilst they get ready. I put on a gown and modesty pants (they have a slit up the back for your bum!)
The nurses go out of their way to be cheery and make you feel comfortable. They went though all the safety questions and explained the process. I am VERY needle and vein phobic so I always tell the nurses that its best for me to lie down for any vein action or I will pass out and cause a delay.
They were totally understanding and got me on the bed before putting the canula in.
Then they popped in a sedative (which was amazing, I still want to feel that dreamy and positive again) and I went to the operating room where the doctors and my consultant greeted me. I really didn't feel much, the camera is so tiny and they kept me chatting about dresses whilst I watched the screen above of my colon.
Going round the corners of your colon is painful but they have gas and air and hold your hand. Its a wince and lasts a few seconds.
I looked at the screen as the consultant pulled the camera back to see a messy white lump that resembled chewed up white bread just inside my colon. I remembered just going 'Whoah, that looks gross!!!' He said its about an inch long and looks like its been here a while.
I was so chilled with the sedative that I wasn't worried at all as little pincers came out to take biopsies of the mess. I was just wide eyed and fascinated!
Then it was over, they said they'd call and gave me a cup of tea and biscuits. I ate them so fast all the blood rushed to my stomach and I passed out! They took their time and checked I was ok before I got dressed and went home. Still very chilled.
Side note: I would recommend reading David Sedaris's story about his colonoscopy. We should all have a one!
The Waiting -
Doctors like to say 'I'll call you'. Me thinking the next day, them thinking the next week. They can be a bit like bad dates and don't call, so I had to do some chasing. Its worth chasing. My consultants had big MDT (multi disciplinary team) meetings to discuss patients treatments on Fridays and would call you in the afternoon if you push or the Monday after. Its best to keep super busy and remind them you are quite anxious to know. But please also consider that there may be many people far sicker than you who need their attention a little sooner.
The Scans -
My consultant, the wonderful Mr Chandratreya, was very positive and wasn't too worried but said it needed to be removed quickly. There were a few cancer cells on the biopsies - called high grade dysplasia. Mine was called a Multilobed Polypoid Lesion.
I needed to have an MRI scan to check if the cancer had spread, a CT scan so they could see a 3D view of my pelvis and an Internal Ultrasound to see how deep in the bowel wall the tumour was.
The MRI and CT scan -
this was all quite fun if you're into tech. Other than the canula. You lie on a bed and the CT scanner is a big loop you pass through like in a sci-fi film. The MRI is a snug tunnel you lie in whilst listening to music. I chose Prince's Purple Rain and got the live long version which was how long the scan lasted for. I could have stayed there a little longer as it felt quite cosy!
I did try and treat everything as if it was an adventure or a spa and in all honesty people do far worse things to themselves out of cosmetic choice.
Veins and Cannulas -
I hate this part more than anything and always used to faint. But have learnt if I stay calm and don't let myself get anxious my blood pressure stays more even. Before the anxiety would bring my blood pressure up, then once it was over the relief made it plummet and I'd faint.
I always let the nurse know that I need to lie down and ask them not tell me what they are doing. They have all been very understanding and thankful I have told them. It saves them a lot of time.
One nurse did decide to give me a running commentary of stabbing my veins and I passed flat out in bed as I was signing consent forms for my ultrasound.
My best trick is chatting away asking the nurses to tell me about themselves which distracts me and people working in the NHS are really interesting and lovely.
So no food for about 12 hours, you pop to hospital to a little room with a toilet and the nurse squeezes a bottle of liquid in your bum. They then leave alone, you hold on for 5mins and then poo until you're ready to come out. I had cramps and this was the first time I felt embarrassed about the whole thing as there was no air freshener. I think I preferred the prep at home in private.
Ultrasound Scan -
my ultrasound scan was at another larger hospital with a different consultant. Similar to the colonoscopy the camera is at the end of a very narrow pipe and you don't feel anything except for when they go round a corner in your colon. This gives them a 3D view of your tumour and how deep it is growing.
This is where I passed out with the canula. I already had cramp from the enema and the canula was put in by a young guy who gave me a running commentary of my veins.
The consultant came to see me, this man was very serious, and I just passed out! When I came round they decided I could go without sedation or gas and air! Thankfully it wasn't painful and I just wanted to get out of there as soon as possible.
This consultant told me there and then that it was very serious, asked me questions like would I like children and said it would be life changing but treatable and that he'd call. He didn't. That week of waiting was awful and showed me how all consultants are different in their approach. His sadly didn't work for me and I asked to have the surgery with my local hospital and by Mr Chandratreya who was more positive.
The Time Scale -
I went to the doctors on the 11th February, I spoke to a consultant 3 weeks later, had a colonoscopy 2 weeks later, scans 2 weeks after that, ultrasound a month later, and a month later my surgery. In all 4 months. If it had been more serious it would have moved faster.
The whole time I had to remind myself that my cancer was caught early, other people had stage 3 and 4 cancer and children, they needed rushing ahead of me.
My cancer was Stage 2.
My pre colonoscopy diagnosis was haemorrhoids. After the scans it was a T2N0M0 multi lobed polypoid lesion. This was really good, the cancer was contained and slowish growing.
Above images of my prep for surgery. Me on top of a hill feeling super fit, the white food, the breathing machine, the protein drinks, the trying the stoma and my excessive packing! And all the information booklets which really helped.
The Surgery -
I am really grateful my consultant in Weston was very relaxed and played down the seriousness of the surgery allowing me a few very blissfully unaware months beforehand. The conversation was very much 'there's just a little bit of cancer, we're going to chop it out, stick your colon back together and maybe do a little trick on the left whilst it heals, OK?' (the trick is the stoma)
I had a pre-op appointment to ask all the questions I needed of the anaesthetists and surgeon and stoma nurse etc. My viewpoint was very much you guys know what you're doing so just tell me what I can do to make it all go as well as possible.
I was given a breathing machine to exercise my lungs and protein and carbohydrate shakes to make sure my body had enough nutrients to get through surgery and start repairing quickly. I had do the bowel prep before too, this time I had lots of chicken and fish.
Of course I was scared but once I was at the hospital on the morning the nurses were so reassuring. All your surgery team come to see you and say hi and what they are doing. I was a bit chilly and they warmed my up with a big inflatable warming blanket which was really quite lovely. I wish I could have taken a picture, it was like I was a princess in a spa. Then they wheeled me into the anaesthetists room.
This room was amazing with a wall of tiny boxes with all the components needed for surgery. The war on plastic doesn't really work in hospitals with disposable plastics essential to hygiene. There was one point when they were rearranging my bed that I was just stood there in my backless gown, pigtails, all these nurses fussing around me and the surgeon came swinging through the door to say what is going on? It would have made an amazing photo or scene in a musical.
I got on the bed, they put the canula in and the oxygen mask over my face and I passed out thinking of the roses in my garden, just in case I would dream. I didn't.
I thought I was being really smart plaiting my hair and pinning it up so it stayed neat and untangled for my hospital stay. As soon as I arrived they took the pins out so there I was, with pigtails and a curly top for a week looking like a very sad poodle. Next time I will use a hair bobble as no metal is allowed in surgery.
I had to stop taking my pill 4 weeks before surgery. I was on Desogestrel which had stopped my periods since 2018. Typically the day of surgery I got my period. This did not help the healing situation at all and again thank you so much to the doctors and nurses who just take this all in their stride and have a solution for everything.
What to Take
You do not need much in hospital. I took a big holdall of pyjamas, a laptop, sketchbook, snacks, all the things the Macmillan booklet said to bring and me thinking I would be able to do some work!
The most important things to me were
EAR PLUGS!!! check they fit and work first - silicone earplugs work
cooling face spray (I was so hot at night)
face wipes with moisturiser
hair band no metal
maybe a packet or sweets or something you like when you're ready to eat.
your phone and charger
toothbrush and paste
clothes to come home in (leave looking good)
Everything else the hospital has, the gowns are perfectly designed for your wounds, net knickers again are far more comfortable than pants and I only washed in the sink as I was far too scared to have a shower and slip over.
Your allocated visitor can drop off anything else you might need too.
Above my 7 days in hospital, my ICU selfie, getting better each day and my views from my bed which were so important to me. I would often cry about that window and the beautiful hill in the distance which had horses on it. Oh and the TOAST!
I came round in ICU to a complete blur. It was dark and I had a stoma and somehow I managed to get my phone and take selfies?!!!
I was hooked up to lots of machines and was told when the light is green on my morphine button I can press it.
What did I keep doing? Pressing the button until I was so out of it I started to panic. My husband came, he was wonderful but I couldn't understand anything he was saying except the surgery lasted 6 hours. At which point I went into anxiety over-drive making up that my surgery had gone wrong.
The consultants and Drs and nurses all came to see me, it was like in a horror film as it was all a blur and I couldn't communicate. I had no idea what they were saying.
I wasn't in any pain but my teeth were chattering, I had, had far too much morphine for my anxious brain and was now stuck on a bad trip. I was so sensitive to noise and so tired but couldn't sleep as I felt like I'd drunk a million coffees.
The Ward -
This went on for 4 days as I was moved to a ward and the morphine left my system. This was a ward with 4 other people. At one point the unbearable noise of a snoring boar in the corner of the room led me to message my husband to get some help for me. 'I'm going to die if I don't get a private room I demanded!' I was so desperate for sleep, couldn't understand why I wasn't in ICU and was instead on a ward with people who were well enough to talk and sleep. How dare they! And my ear plugs didn't fit! The poor nurses were so patient with me as I properly freaked out.
I have learnt from this experience that you may think you are dying and in hell but the nurses have seen it ALL before and know that in a few days you'll be smiling and laughing as you skip happily out the door.
And you don't always need the private room, you are far safer where the nurses can see you.
Then one night an angel (nurse) came and rolled me on my side and let me sleep, that 1 hour of sleep made the world of difference. It was heaven. When I woke up I cried and thanked her so much, she said I looked so uncomfortable in the bed all wonky as I couldn't move myself, she had to do something.
I was nil by mouth, hooked up to drips with lots of cannulas dangling from my arms like jewellery. I had a catheter to wee in a bag, oxygen, my operating wound with attached wire pump and my stoma. I had a small 1" keyhole cut on my pubic line, then a 7" cut up into my belly button and a 3" cut under my stoma. My Lungs were weak and my stomach muscles totally unusable so the basics of coughing, sitting up, lying on your side and any movement was all of a sudden really hard work.
I was in real shock that my body wasn't the same, I didn't know what I expected but I thought I'd just feel fine with pain killers. I was angry at the loss of my healthy, free moving body. I felt fine before, why did I have the surgery?!
Gradually I was able to sit up with the help of the electronic bed and have a cup of sweet tea through a straw. Then an ice lolly and oh my god that ice lolly good! Then an ice cream.
My sign read 'yoghurt, jelly, ice cream and soup' I left the soup and enjoyed a 4 year olds dream diet.
I cried most mornings and the nurses and health care assistants were so calm and reassuring throughout. I was so scared and overwhelmed at what had happened and how I felt. At the time I really wished that I hadn't had the surgery and would have been happy with just a year or two of life left instead. I even looked up Dignitas as I couldn't believe this was how you might die, slowly in a bed with drips attached instead of quickly going to sleep Disney style like my dog.
That was the toughest few days of my life. On the Monday morning as I sat crying about everything, my hand and how grateful I was for it, the view and how beautiful it was, everything .... The most brilliant nurse came over a wiped away my tears and so gently told me that with these downs there can only be ups and for me to please try and walk today so I can go home and get better. I promised I would.
As the day progressed the consultants and doctors do their rounds, Weston is a training hospital too so you also get lots of very gorgeous young doctors coming to see you which certainly perked me up a bit and made me realise my weird pigtail situation!
And then there was my consultant, smiling under his mask and telling me everything had gone really well! The stoma was just in case so I could heal better and he was really happy! I was absolutely fine and must get up, get the catheter out before I got an infection and start eating and being normal. It was like a god had spoken, mentally this was what I needed to hear. I literally got myself out of bed there and then and started to get better.
And had a piece of toast with butter, it was the best toast in the world!
Steepholm Ward - The Stars
The nurses, student nurses, health care assistants and housekeeping staff were all incredible and such a humbling inspiration on how to be great humans. Amazing people from all over the world come to work for our NHS which I have to say is the best health care system in the world. Excellent, unbiased healthcare, free at the point of use to us all equally. Most importantly its the care you need that is scientifically proven to work. Not what is sold to you, not just because you want it.
Here's the stars who stood out and why. THANK YOU!
The angel with braids who helped me sleep. I wish I knew her name!
Blessin the nurse who so elegantly took care of me throughout.
Neethu who wiped away my tears, asked me to walk, gave me a break from my drip and got a smaller canula put in.
The ice lolly lady!
The blood takers who kept up the chatting about disney films, dogs, being a general in the Brazilian army, their children .... all whilst swiftly and painlessly taking my blood.
Chelsea the student nurse with the natural gift to care despite being in pain herself, she will become a great compassionate nurse and was made of the right stuff.
Hayley who found me ear plugs and was so thoughtful towards patients sharing her own experiences to help them.
Jerzy the physio who was lovely and tried so hard to help patients walk. Someone please give him more time!
Zoe who lit up the room with what must have been the biggest smile under her mask and made you feel so cared for. She will be an asset to any team in any hospital in the world, I just wish she could be cloned.
And Michelle the most incredible stoma nurse ever, ever, ever.
There were so many more, 99% of the staff on Steepholm ward were genuinely incredible.
The Stoma (or the Trick) -
I was really grateful to be given a stoma practice kit before so I could try it at home just in case. I practiced trying it on, showed my husband so he wouldn't have a shock and designed some new underwear to wear with it. I really needed to prepare for the worst and hope for the best the whole way through this.
It was going to be 50/50 on the stoma. My consultant called it a 'little trick' he would do to let my bowel heal.
The stoma really was the least of my worries. I'd been given a practice pack, I was prepared and thankfully for instagram I had seen lots of gorgeous girls with stomas which made me get into the mindset that its just a neat purse you poo in. No big deal.
I also had another amazing stoma nurse Louise who answered all my weird questions before surgery like, can I take it off to have sex? (seriously sex was the last of my concerns after surgery) the answer is no.
You want to keep the bag on at all times unless you're in the shower.
Can I have a black stoma bag? the answer is yes. I thought of it as a new accessory I might get.
Can I eat what I like? no You can eat all the unhealthy things to start with like white bread, marshmallows, jelly babies etc. Then you can gradually introduce healthier food.
I had a loop ileostomy where a loop of my intestines was pulled out through a hole in my stomach, snipped in half and stitched in place to stick out. Its freaky and like a little red sausage that pukes, all the time!
My stoma nurse fitted a black bag in ICU and I'm so glad she knew that was what I wanted and would accept. The nurses changed it for me whilst I couldn't move and once I was up and using the toilet by myself, Michelle my stoma nurse came to show me how to change the bag.
I'm was given a Salts bag, in black The Confidence BE. You cut the hole to fit your stoma so its a tight fit and the stretchy waxy material of the base sticker is so good a creating a tight fit. Its very, very well designed.
I then practiced on my own, going through a few bags and before I came home, I was given an assessment to prove I could cope on my own. Michelle was incredible, making me laugh instead of cry when it leaked on my foot, making sure I got the fit right and literally squeezing in a tiny toilet on her knees to show me what to do. I would never have got through this without her positivity and putting things into perspective by sharing her own experiences. I was a really lucky person.
The stoma nurses are all amazing. I was given support nurses from diagnosis, in hospital and post surgery to help me every step of the way. A nurse will see you a week after you get home to check how you're coping and measure the stoma again. It changes shape as it heals and gets a little smaller.
She will also go though your mental health and how you are and how you are eating.
They really are there for you every step of the way.
Coming Home -
I came home 7 days after my op. it was really important to me that I left hospital in a dress and looking as normal as possible. I was physically and mentally broken but I wanted to leave on a positive for me and the staff. I was up and ready to leave by 9am with makeup and a blue floral dress I'd designed specially for the occasion. I felt good and strong all day, I was ready to leave.
I said goodbye, smiling and waving and looking so much better than the previous Friday. The second I got in the car I sobbed. I felt so broken.
Being at home has its ups and downs. after a week in hospital I was getting used to the routine and having someone there if I had any questions. It was overwhelming to be home and I was scared of everything at first. I hated putting so much pressure on my husband and Mum and Dad to take care of me. But they wanted to and have done an amazing job letting me do small tasks every day.
Tip: set little goals for every day. Like doing the washing up, watching a film, taking short walks etc. The consultant told me to go home and be normal. Be careful with your body but try to do normalish things and REST.
My Husband -
what an incredible person! He came into hospital to check on me every day, and has been so calm throughout even though he was terrified inside. This has equally been a mental strain in him, trying to be positive as our world started to fall apart.
He even broke in when I thought I was dying to reassure me that I was ok. For him one of the most frustrating things was the waiting and not knowing what was going to happen to me and the lack of aftercare support on the weekends. Don't get sick on the weekend!
Being on alert all the time that he may need to take me back to hospital or there may be a drama took its toll and I would recommend giving your loved ones some breathing space and reassuring them you are ok when you are ok. It is far worse worrying about someone else than going through it yourself.
I have since seen partners sitting nervously in waiting rooms, cancer hurts them too. Our partners are amazing.
My Wounds -
I had a small 1" keyhole cut on my pubic line, then a 7" cut up into my belly button and a 3" cut under my stoma. I had the pump from my main wound removed in hospital and redressed. Wearing loose clothes and airing it as much as possible really helped.
The wounds soon start to heal. I took my dressing off the day after I got home and had it checked at the doctors. I was advised to just let the shower go over it but don't wash it. I then air dry it and very gently stick a little kitchen roll in my belly button to make sure that is dry too. It was sunny outside so I gave it an air every day and three weeks later the bruising has gone and the scabs were coming off with healed skin underneath.
I sleep in loose clothes wrapped in a clean white sheet so it stays cool and clean.
The pain is there every day, lots of aches and pings my body has tried to adapt and is healing whilst holding itself in a new way. I try to do my pelvic floor exercises as the physio showed me and walk every day not letting the wound set in place. And relax as I'm quite tense.
The pictures below are week 1, week 2, week 3
The Injections -
I was not prepared to inject myself every night for 22 nights. The first 9 nights I cried and panicked and couldn't get the needle in without a whole load of fuss. My poor husband offered to do it for me at which I would squeal and flap until after a few minutes of sitting on my own I got on with it. I really should have been shown how to do it on myself not a pillow before I left hospital and this was my fault for rushing to go home.
Now I sit up in bed, clean my hands and tummy with hand sanitiser, flip open the syringe, grab some belly fat, breath out slowly whilst firmly pushing in the needle. Voila! All done. The breathing out helps as does the pushing hard.
The Rash -
2 days after I got home I went for my first short walk down the road and got back with a itchy rash all over my body. My immune system had literally gone wtf has happened and it was probably triggered by my wound or dressings and heating up on my walk. The doctor saw me on Friday night, gave me anti histamines and my amazing husband covered my already sad looking body in calamine lotion.
By the Monday the rash was still there and I called my doctors who gave me a phone consultation whilst I emailed photos over. He prescribed an ointment and doubled the antihistamine. The rash then started to fade and had gone the following week. Not ideal but I got through it.
The blood and Phantom Rectum -
3 days home and my body could still remember how it used to work and I felt the need to have a poo. Out popped a blood clot. Yes I freaked out! My logical mind was saying of course there would be some blood from surgery in your colon that will pass through. My panicky head was saying no the join in my colon has broken and I'm bleeding!
I felt fine otherwise, other than the rash and was still eating. My stoma was working fine. I called 111 and they called back the following morning and reassured me this was all normal. In the meantime the bowel cancer forum was really helpful too.
for someone who was pretty hyperactive working all the time, its been hard to sit down and take naps. My brain is fried creatively and the first few weeks I felt like a ghost, floating around the house not knowing what to do with myself. There are ups and downs, I feel great when I see people as I can kind of put it on that I'm 100% fine and then the fatigue and aches hit you after.
Resting, sleeping, gentle walking and eating lots of protein seem to getting me back to normalish. Gradually doing some gentle work.
the hospital gown is the most brilliantly designed garment for recovery. Its loose and open at the back, what more could you want!
I tried all my new pyjamas but for three weeks I couldn't bare to have anything touch my wound or stoma so I wore smock dresses and no underwear.
Gradually I will wear something around my waist again but thank god for cottage core smocks right now!
Everything I thought I knew about food has all gone out the window. The dieticians in the hospital were so helpful and made me realise how much nonsense there is about food from nutritionists.
It was really, really, really important to get enough protein to heal my body. Previously I was vegetarian, not anymore.
I needed to get good, lean, low fibre protein into my body. Fish and Chicken are the best source for me. Eggs, milk and yoghurt came next and things like beans and pulses are a no no to begin with as they blow up your bag or cause a high output.
Then some carbs in the form of bread or cakes (too much cake!) and the only vegetables I could have to start with were potatoes without skins, well cooked carrots and cooked apple.
Basically a McDonalds Big Mac, Fries and Milkshake would have been ideal in the first week or so!
Gradually I've picked salad leaves, with apple, cucumber, yoghurt, ginger etc and whizzed them up in a nutribullet and that seems to have been ok. All I wanted was tomatoes, cheese and bread so worked out I could whizz the tomatoes into a salsa. The aim to is keep your output slow and steady like porridge (but I can't eat wholegrain porridge) and not get anything stuck in the stoma like fibres, sweetcorn, beans, nuts or seeds.
This changed so much after a few weeks and I was happily eating everything. But its the chewing that's really, really important.
Mental Health -
its been an emotional rollercoaster for me, pardon the cliche. Cancer is shit and scary and horrible in every way.
My approach the whole way through was to treat it like a new learning experience, be open, be trusting, be a good patient and be wide eyed in wonderment at how wonderful the NHS and medical science is. This worked well for me all the way up to surgery.
These first few weeks have been really hard dealing with the pain, the new feelings in my body and functions.
I was in denial that I was even ill and the hardest part has been the fact that I felt 100% fine before surgery and felt so terrible afterwards. My phobia of needles was even bigger and I really couldn't focus on the future or anything normal in life as every move my body made was difficult and painful. I felt pretty lost in myself, my identity and my creativity.
It really is life changing and life affirming. I know in a few weeks I will be asking myself what all the fuss was about and I'll be incredibly grateful for the experience. I am incredibly grateful that it has saved my life.
Part of writing this is to get all the crap out of my head and onto the page in the hope it might help someone else. And every day things do get better.
I can walk and eat and enjoy life.
Writing thank you cards really helped to put things into perspective. Its not every day you write 'thank you for saving my life'. I've been given a massive gift of life and I need to not waste it by moping around like some sad sack. It won't help.
I need to be positive. The things I was so thankful for in hospital were that I had my hands, one day I actually cried about my wonderful right hand!
I never appreciated my body before thinking it was too fat or not good enough. Now I realise my body was perfect, I could run and jump and climb hills and dress it up and be naked and do all the things you could want with it.
I will travel the world again and experience new things and see so much beauty and life to come with this body I still had that is being mended. I am so lucky to have this chance. Its the small things everyday that I love most, like hearing the birds sing and literally smelling the roses in my garden.
My biggest promise to myself is that I don't stress anymore or work myself to the bone damaging my health. I'm not going to waste any more of my life being pointlessly anxious about anything either. And make time for those I love rather than telling myself work comes first.
What Happens Next
I had my follow up yesterday 3 weeks post surgery.
I had VERY GOOD NEWS! The cancer was gone!
My consultant told me that of the 16 lymph nodes taken all were clear. The margins were clear and the cancer wasn't genetic.
Wahooooo! I AM SO SO BLOODY LUCKY! Thank You NHS!
As it is still unusual to have bowel cancer at 37 I will be monitored for the rest of my life with scans, tests and colonoscopies.
In a few weeks I will have an enema and tests to check how my bowel has healed and in a few months my stoma will be reversed.
I will forever be indebted to the amazing NHS and the colorectal team at Weston Hospital in particular Mr Chandratreya for detecting and removing the cancer and my stoma nurses Louise and Michelle and the team for being there every step of the way. I think they were as happy as me when they told me!
Now to live Happily Ever After ......
If you have any questions regarding my experience or stomas please feel free to email firstname.lastname@example.org refer to the resources shared here.
My stoma Kit
Vanilla blush pants
little scissors to cut hole
adhesive remover to remove bag
Barrier spray to stick bag
plenty kitchen roll for drying your stoma when you get out the shower
All these things were so scary and unknown to me but thankfully pretty normal. The stoma nurses and Dr were really reassuring. I know my stressing out hurts my bowel and need once again to chill out.
Mentally receiving sexual pleasure was pretty tough to start with and giving can be a lot less pressure. I found starting with some solo self love really helped understand how my body felt again and built my confidence. That and having a wonderful partner.
A shapewear slip or suspender belt are great lingerie options like here from vanilla blush.
Social media can be very good for some things!
I ate ice cream and yoghurt and jelly and mashed potato and a baked potato and then was sick :( and then some dry white toast to get my appetite back and eventually at 11pm on a Thursday I had my first poo in 4 1/2 months.
Yes it was explosive, yes I pooed my pants but my body was working. This continued for 6 hours. I have never been so happy to poo.
Drinking plenty of liquids, eating little and often, a cup of coffee and a a little box to put my feet on when using the toilet. Eventually things happened again.
As Weston is a teaching hospital I had my wound dressing changed with an audience. My reaction when I saw it was shouting 'Holy F**k!' to the gorgeous medical students who all just looked at me blank. These guys are used to gore. Its a lot less terrifying once its explained. My wound then is dressed when I get home at my local surgery by the practice nurse until its healed enough for me to dress it myself.
Andrex flushable wipes
a little box to pop your feet on when you poo (makes it easier)
tena lady pants
tena lady pants
phone and phone charger
Vanilla blush pants
plenty kitchen roll for drying your stoma when you get out the shower