CANCER! what do you think of when YOU see that word? For me, I see an evil, disgusting disease that doesn’t discriminate, no matter who you are, what age, race or gender.
Let me tell you my story, it is a little sad, however (plot twist) it is turning out to be a great one.
I have suffered with UTIs every since my Son was born, thats 24 years ago now.
I was young so tried to keep myself healthy, over the years I have drunk cranberry juice, lots of water, you name it I have done it! All to try and prevent those blasted UTIs.
I never really thought that they could lead to something worse, they were troublesome, annoying and disrupting at times. I dread to think how many antibiotics I have taken over those years. How much of my life has been taken up with infections,kidneys stones and antibiotics.
So lets go back to August 2015 when I first thought I was “pooping” blood.
It wasn’t happening everyday, just every other day I guess. I even took a photo of the loo to show my Husband as I was convinced that I was going slightly bonkers!
We went to the GP who arranged for me to have a colonoscopy, this is where they insert a camera into your bowel and have a look round, This came back clear and yet I was still “pooping” blood, I had also started to become very tired, not just tired but exhausted, which I put down to yet another infection. Antibiotics where given and that was that.
By January 2016, I felt absolutely terrible, it had begun to affect my job, so much so that I was cooking dinner for my client in the morning as by the afternoon I was useless. I could barely speak without slurring my words.
I then started to pee blood, deep red blood.
I wasn’t freaked out by it, as this had happened to me numerous times over the years. I dropped a sample into the GPs, and was told I had a UTI. More antibiotics were given to me, and after 5 lots, and me begging the Doctor to take me seriously as I had begun to feel that this was much more than a simple UTI. More antibiotics were given..
I then started to pee blood clots, now this totally freaked me out!
Never in all the years I had been suffering with UTIs had I ever peed clots. I guess this was the moment my subconscious began to really that things were not that good. We saw a Locum GP, who arranged for me to have an utlrasound.
As we left the room, the radiographer told me to make an appointment with my GP.
I said to my Hubby that normally they say that the GP will be in touch. Luckily for me, my GP called me for something unrelated when I arrived home, so I asked him if he could look up the scan on his computer.
It went quiet for a few seconds and then he asked if I was still seeing my Urologist? He said that he would send off a referral letter as he thought it would be a good idea to see him. We waited..
After a couple of weeks I received a letter asking me to go in for a cystoscopy, a camera in the bladder. I realise now that my mind was playing with me, as it plainly said on the letter that there was a “mass” in my bladder. To this day I do not remember reading that bit.
1st April, what a day, we arrived at the DTC centre (Diagnosis & Treatment Centre), its sort of like a conveyer belt of small procedures being carried out. I said goodbye to the Hubs and went and got into my gown then waited to be called.
As I walked into the Theatre, a Urology Nurse came over and put her hands on my shoulders and said “Oh you are so young for this to happen to you”. I was confused and didn’t understand what she meant, I smiled.
The camera was inserted, and you are awake through this procedure, and there it was! A big, fat, red, scaly, angry tumour. It looked bit like a door knob with bits coming off it, which I now know were cancer cells. I stared in disbelief, not really knowing what the hell it was, just knowing that it shouldn’t be there.
I went any got my dressing gown, a Consultant came over to me and said “You do realise it is most likely cancer don’t you?” I just looked at him and nodded, not really understanding what he was saying at all.
Now those words are burnt into my memory, I remember wanting the Hubs, Tim, wanting him to tell me that its all ok and there had been a mistake.
In shock, I went and sat in the recovery room.
I asked the Nurse if I could see my Hubs, she told me that I was being discharged in a minute and I could see him then. My mind was all over the place, had they really said its cancer? What was I going to tell Tim? my Son Ash, omg my Family, my friends… I wanted to scream, I didn’t want to overreact, I just didn’t know HOW to react!
The Nurse came over and told me they were getting Tim for me, she obviously had read my notes. We were ushered into a small room, where the Nurse sat telling me that actually I am very lucky as Bladder Cancer is the easiest of the cancers to treat. They scoop it out and keep scooping it out.
I felt silly for crying over something that seemed so easy to treat. Why should I be crying? The Nurse didn’t seem to be worried.
Fact: Bladder cancer is indeed the most expensive cancer to treat on the NHS (here in the UK) due to its high reoccurrence rate.
You have 50% survival rate and it is the 5th Highest Cancer within the Western World. Openers is diagnosed every 4 minutes and one person dies every 10 minutes.
We went to the car, I wanted to speak with Ashleigh (our Son), I asked him to pop round later, but Ash being Ash kept pushing and wanted to know what was going on. In the end I had no choice and told him over the phone, and quoted the Nurse too.
It didn’t seem like it was even a “real” cancer, thats how much it was down played. I told Tim, that we could cry in the car but that was it, I wasn’t going to waste time crying over something that could easily fixed.
April 1st was a Friday, we spent all weekend coming up with a plan of action, we decided to ask my Private urologist if he would perform a TURBT (where they resection the tumour). he said yes, thankfully and it was arranged for the Wednesday.
I couldn’t sleep that night, so many thoughts going round my head
At some ungodly time in the early hours, I decided to write down all my thoughts. I started up a Facebook page called “My Big Fat British Bladder Tumour”. I still remember what my first words were. Laid in bed and write everything down that was swirling around my mind, eventually I got to sleep.
On the Tuesday my Urologist asked if I would go for a CT scan, this wouldn’t of been done had I gone down the NHS route. They used contrast (a dye which they inject into you which helps to see your bladder and its contents)
Day of the TURBT, we arrived at the Hampshire Clinic in basingstoke full of trepidation. I keep telling Tim that hopefully this would be all over with this evening and we could get back to our normal life.
My Consultant came in, he sat on the bed. I had never seen him sit on the bed and then he started to speak…. “We wont be able to take the tumour out today as it has gone through the bladder wall into the muscle and the fat”. Tim and I sat there, speechless, he continued “We could take you down and do a biopsy? Its up to you, what would you like to do?”.
I remember thinking I didn’t care what he did, I just needed to be put to sleep for a little while, as this news was far too much for me to take in. I turned to Tim and said ‘call whoever you need to to support you whilst I’m having this done, cry if you need too but when I come round we wont be crying about this!
So off I went for my biopsy… upon returning to my room, Ash and his girlfriend had turned up, I knew that I had to tell him the new news, I just didn’t know how too. This was my 6Ft 4’ 22 year old, who despite being an adult, was and will always be my baby.
I had been a single parent for a long time until I met Tim, so it was always Ashleigh and I against the world. I protected him from the world and now here I was about to shatter his life with one sentence. I picked my moment and started to explain. On the outside, he took it well, I found out from his girlfriend that it was all a show, no sooner had they left, he broke down and sobbed his heart out.
Cancer affects EVERYONE in your life, not just you.
Your family, Your friends, it doesn’t care. I don’t think I have ever had to deal with something that really doesn’t care how much it tries to destroy you.
The Biopsy showed that is was a rare Cancer called called a “Neuroendocrine Small Cell Bladder Tumour”, with it being ‘small cell” It is deemed as being terminal. Out of all the People with Small Cell Bladder Cancer, only 19% will survive to 5 years!! so frightening.
The next step was to have a PET scan, this is where they inject you with a a radioactive substance, it turns to sugar and the cancer cells eat the sugar, this then make the cells show up as “light’ on the scan. It was a little claustrophobic to be honest, I kept my eyes shut so tightly, all in all it took about 20 minutes. You have to keep very still during the scan, sods law dictates that this will be the time you get an itchy foot, or a twitchy nose, or a pain in your arm
The Pet Scan showed that the cancer cells had already gone to my lymph nodes, liver, hip and arm bones! When my Oncologist said the word “Bones” I knew that my face was sealed, once its in your bones it will never go away.
With it being small cell, and there being no specific treatment for it in the bladder, I was told that I would be treated for small cell Lung Cancer.
This meant that I was to have chemotherapy, palliative chemo, so six sessions, with one season every 3 weeks. To be honest, I sailed through the first lot of chemo, just feeling little tired. And when the steroids kicked in, I was soooo hungry, it was like filing a black hole.
You get told to eat like you are pregnant, so little and often, saying away from pate, sushi, soft cheeses etc and around day 10 your bodies immunity is so low, you need to stay away from large crowds of people just incase they have a cold or an infection, which could potentially kill you.
At the end of the chemo, I had another PET scan, this showed that the chemo was working, it had shrunk the tumour in the bladder and the cancer cells that were in the liver and the bones. This was fabulous news, and had given me hope.
During all this time, we set about, as a family, making memories.
Everything was bitter sweet, we spent time at the beach, we had parties and arranged an 80’s christmas disco in June. This was because we really weren’t sure if I would make it to Christmas, and boy I LOVE christmas! (my birthday is on the 17th and our Sons is on the 27th December)
We had tea at the Ritz, held Macmillan coffee mornings, generally having an amazing time. In the back of my mind I wondered if this would be the last time we did things like this.
I went about making memory boxes for my family and friends, writing letters to them, finding things to go in the boxes that I know they would love, and would remind them of me and our time together.
It was/it is such an emotional “rollercoaster”
I know people use that word all the time to describe their cancer journey but thats exactly what it is like. One minute being happy and great, and the next, hitting the floor so hard that you just feel broken and distraught.
It was discussed that I would go through 2 weeks of radiotherapy, however once the ball began to roll, I became worried, as I had read that you can only play the radiotherapy card once and I really wasn’t sure about it so I asked my Oncologist to delay it.
In the December we had another appointment with him, at this appointment, I broke down.
Everyone has an opinion about what they would do if they were in your situation but trust me, it really is difficult when its your own life you are playing with. I told my Oncologist how I felt and that I was unsure of what to do, I was confused and muddled. I was making the biggest decision I had ever made and if I got it wrong, it could mean that I would die, No pressure then.
I asked him what he would do if he were in my shoes, he told me that he would have the radiotherapy, so I conceded and had 3 sessions over Christmas 2016.
I also began another lot of chemo in the January, and had a port put in, as finding my veins was hard enough without the chemo making it worse.
This chemo was evil
This chemo made me so ill, I really began to understand why people sometimes say that they don’t want anymore chemo. I kept telling myself that “this too will pass”. By the time of my 5th session, it was taking weeks for me to feel even remotely human. My oncologist decided that 5 sessions were as good as 6, and we stopped it.
A Pet Scan showed that there was NED (no evidence of disease) we were ecstatic, never in a million years did we ever think that this would happen. It meant that I could have a “normal’ life again.
I felt happy that soon, I would feel better, not so exhausted, not so ill.
This, unfortunately, didn’t happen, I had ulcerations within my bladder that weren’t healing, these were causing me a lot of pain and I was put on oramorph.
I hated having to take medication, I couldn’t drive, I couldn’t focus, in fact I could barely do anything for myself other than sit on the sofa. The oramorph took away a lot of the pain yet that still only made it bearable.
We had a decision to make, should I get my bladder removed or not? We spoke to a Consultant who deals with all things bladder cancer and also my oncologist, who both agreed that this would have to be done.
You see the focus of my life was/is “quality” of time not “quantity” and how it was at the moment wasn’t the best. I had no quality of life. I was in agony. My house felt like a prison!
So on the 19th August 2017, I underwent the operation to remove my bladder and give me a hysterectomy as well.
I tried not to think what a huge, life changing operation it was, right up until I went to the theatre, then the huge nerves set in.
My Lovely Urology Nurse, Anita, had come over to watch the operation and to support me. It was so nice seeing a friendly face and she was there when they gave me a spinal anaesthetic, holding my face and telling me to breathe. Then they placed the mask over my face and I said “goodnight’..
I woke up in ICU, feeling like I had been hit by a bus and stabbed in the stomach, I don’t know what being stabbed in the stomach feels like, I can only imagine it felt like I felt, having never had a major operation before I had no idea what to expect.
I stayed in the ICU for 2 days and then was transferred to a ward. at this point I still hadn’t seen my “stoma”, I felt freaked out by it all, and was worrying whether I could actually do this, and live with this? It was a little late to be wondering this.
The operation was a success, they had removed the bladder, given me a hysterectomy as well as removing a lymph nodes with active cancer cells in, AND had found scar tissue from endometriosis wrapped around a nerve in my groin, which they managed to separate, I was as good as new, well better than new.
I asked the Nurse to stand by me, whilst I removed the bag, I had it all planned out in my head what I was going to do, and had said to her that if I couldn’t do it, could she take over for me?
I looked down at the scars on my tummy, and removed the bag, there it was my stoma, Sally the Stoma. Looking like a little cherry with stalks coming out of it. (They were stents which were to be taken out within a few weeks). I cleaned the area, dried it and stuck another bag over Sally. I HAD DONE IT!! it wasn’t gross, it was freaky, it was amazing!!
I left the hospital on day 5 after the operation, it was so good to be home.
I had to sleep in an upright position as I couldn’t lay on my sides yet so we bought a “v” shaped pillow, I was still on pain killers and my mobility was getting better which each day.
I did hit a snag, I became ill after about 2 weeks and couldn’t keep anything down at all so had to go back to hospital whilst I had intravenous antibiotics. At this time I really had thought I had made a mistake, and wished I could go back to how it was.
A month to the date of the operation, I was at there 02 area in London, waiting to see the Foo Fighters.
I was so worried that I would have an accident and do you know what? I did! But we coped with it, it made me realise that this was the worst thing I thought would happen, it happened and we coped. I felt very proud.
It has nearly been 9 months since the operation, and the cancer is still at bay. I feel amazing, and it has made me see just how many issues I was having with my Bladder and how was totally the right thing to do. AND I can pee standing up, what more does a girl want?
Now, we wait, we wait for the disgusting disease to reappear, it’s not ‘if’ its “when”.
I feel incredibly lucky as, as I write this I have been free from disease, or NED, no evidence of disease for a year, if we don’t count the lymph node that was removed during the op.
How do we feel? Scared, anxious and I am now having to life a life I never thought I would have, I mean, seriously how lucky am I? I am grateful for every day, every breath I take, every laugh, every moment, how could I not be? When you are told that you are going to die, and sooner rather than later, it does mess with your head.
I am now having counselling to help to come to terms with this new life.
I also have decided to become promote Bladder Cancer Awareness as much as I can, as I never thought it would happen to me and yet women are more susceptible to UTI’s which means that every women should really know the signs for Bladder Cancer especially if you do tend to have lots of them.
Whatever happens in our future, we will deal with it, just as we have so far, with smiles, laughter and a good sense of humour!
Anita was diagnosed with small cell bladder cancer at 46. She lives with her husband Tim, son Ashleigh, and their animals – Sherlock the dog, Barney the bunny, cats Fuggers, Ollie and Moma Cat, and Bob the fish. They all live in Hampshire. After her diagnosis, Anita started the Facebook page My Big Fat British Bladder Tumour, detailing her journey with cancer. Anita is now committed to raising awareness of Bladder Cancer and helping to raise money for the Fight Bladder Cancer Charity.