Mine's Broken

The appointment came for 10th March to finally meet Mr Mullerat, my surgeon. Steve and I went together and mom stayed at our house. Now we knew that the cancer was in my Cecum and therefore had decided to name my cancer Harry. In the waiting room others joined us and we soon noticed who had a Harry as like me the pain was on their faces. We were on the conveyor belt of Harry’s, one of a long sad line of people who were waiting for surgery, tests, results, appointments and then dare like us to look to the future.

We went in and Mr Mullerat was joined by a cancer nurse. He explained about Harry, were he was and the operation to follow, that it would be done by keyhole as recovery was quicker. This Portuguese man who I had never met was going to take Harry away. He was also going to grant me the two biggest wishes which was no bag and I could have the surgery at Wycombe, thank you.

He could see the pain I was in and told me to start taking painkillers, two paracetamol and two ibuprofen together 3 times a day and that if I needed another dose I could have one more lot. I had done weeks of pain, holding on to it, feeling it everyday but suddenly the need to feel it seemed silly and even harder to explain to anyone other than myself so I started to take painkillers. I think I felt it was real that I was ill after all and Mr Mullerat and his team who I didn’t know were going to take the cancer away and I’d be okay, cancer free at last and then I could surely get back to my life, one without cancer in it daily.

We were then taken away into another room with the cancer nurse who apologised for not being in touch with us beforehand, that I had slipped through the cancer nurse support net and that although she was retiring the next day I would now receive support. She did call me the next day to see how I was but that was the last I heard from the cancer support nurses.

The operation date was scheduled for March 31st and Mr Mullerat said that if he could he would bring it forward and that the great news was that the CT scan had shown that my lungs were clear, good news at last.

 

So from 20th Feb to the 5th March I wait, wait for the coming CT scan booked for 5th and the pending operation. Not knowing the date of that means the waiting game continues of appointments, tests and results the fear being now that the cancer had maybe already had spread. We still have hope.

I’m so sorry, I’m sorry I brought cancer into our lives, I’m sorry I made everyone sad and worry, I am sorry that Steve and I had to cancel our holiday, I’m sorry for turning into a woman in constant pain who just sits and watches the clock tick by, I’m sorry for causing upset to my children and mom but I’m sorry for myself too, self pity holds me back everyday as I try to understand all of what’s happened and the fear of what’s to come.

I remember the first day I woke up and my first thought was I have cancer! a weird feeling. I didn’t want to take pain killers as this meant that I couldn’t feel the cancer eating away at me. This didn’t make any sense at all, why be in pain but I had to be. When you are pregnant it’s lovely to feel that little unknown person growing inside you and you cherish every kick and movement you experience. Cancer is the opposite, this thing growing, eating you from inside, destroying who you are, threatening your world, to not feel it would mean I could pretend it wasn’t there and I couldn’t do that, so I battled on in pain playing the waiting game and staring outside the window from the kitchen.

I missed my life, my team at work, the overwhelming guilt of not being at work was too much to handle some days. I can’t explain how much I love my job and the BHS Kingston team. We had gone through so much together and achieved some great memories. The team had become friends and valued ones at that. Emma, Alison and Linda who where strangers a few years ago were now like a second family, I missed them so much. I missed laughter, being part of their daily lives, chatting, debating and shouting at Troy. I’d come home from work most days and always had a story to tell Steve but now I just sat, in pain and apart from if I was up to it a daily walk with the dog, I had no stories apart from cancer and so I brought a bird table to give me something to look from the window whilst I watched the clock tick by and thought of my old life and the life I missed so much.

On 5th March mom and I set off for the CT scan appointment, we went to the wrong place and after panicking that we would miss it we arrived in time. I put on the gown of shame again, only to be told that the CT scan had broken and I couldn’t have it done! OMG FFS Mr Mullerat needs these test results so we know what we are facing. The nurse told us we could wait or come back tomorrow morning first thing, we opted for the latter and left.

6th March the CT scan machine was all repaired, scan done and then back to the waiting game. It was Steve’s birthday so I again felt so sad that I’d not only ruined Rebecca’s birthday, I had ruined Steve’s and this was the week we should have been on holiday having fun, eating and drinking to much and having lots of sex, isn’t that what holidays are for? Instead I wait for the postman, look out of the kitchen window and watch the birds feed from their new table.

Oh my poor children, what would any parent give to protect them from any hurt or pain. How often do we tell them to be happy in whatever they do and now I have to bring them sadness and sorrow, a very heavy burden to bear.

When my dad was dying of pancreatic cancer in 1997 I felt left out, I thought I was being lied to and so I was adamant that I wasn’t going to do this to my kids.

Richard was on Army exercise in North Yorkshire, I’d texted him to get in touch as soon as he could on the Friday I got my results but no reply from him that day.

Saturday morning Steve answers the house phone…. “It’s Richard” he said, my heart stopped, what do I say? I greeted him in my normal mommy way “Hi there darling, how are you?” He just replied “What’s wrong?” thinking it was his nan that maybe in trouble, sick or worse. I asked him where he was, he said he was up a mountain, I then asked if he was on his own and he replied yes as he had to walk up to the top of a hill to get a signal. Now Richard had no clue that I was even ill, we texted everyday as normal since he had been away but I hadn’t told him any of what was going on, he had no clue what was coming. I told him the best I could, the conversation was short. I told him to find Dan who I knew was with him on exercise and not to be on his own.

Now it’s coming up to the General Election and Ian (campaign manager) wants some photo’s for the campaign so showered and dressed with the dog we set off to a local beauty spot which is under threat from the local Tories for housing development. I can hardly walk, in pain and I have agreed to this!! I must be mad.

I’m in the car when Richard calls my mobile, he is in tears, he has to hand the phone to Dan who is in tears, I’m in tears and the dog who thinks that she is going for a walk is in the back of the car crying to get out. Steve, Ian and Paula are talking about the photo shoot outside of my misery. Finally some tears, finally someone cares, my boy miles away and alone with Dan in their tough Army uniforms are somewhere up a hill crying for me and allowing me to cry too. So instead of being a comfort I told them to “Man Up” and stop being stupid, it’s only cancer!

The photo shoot went ahead but the photos were never used and the hill was climbed in pain for the greater good of the forthcoming Election and my hubby.

Richard spoke to his Sergent and was released the next day on the first transport home to be with us for two days before having to return to exercise. I was glad to see him and have a hug from my boy.

Rebecca I think was struggling to understand what was going on, she didn’t ask questions really and everything we told her she just said “okay”and handled it her way, alone in her bedroom.

My poor children, my driving force for being a hard working woman, to provide for these little people who depended on me and Steve for everything and I’d hurt them, I’m so sorry cancer did this to you both, now we were all on the journey together apart from I hadn’t told my step kids yet and left that to Steve.

So it’s Wednesday 18th Feb and a week since the colonoscopy. Nicky my best mate since the age of 17 is coming to visit overnight tomorrow as she lives in Peterborough and I had to call her and tell her what we maybe facing, not an easy conversation to have over a phone.

I wait until 4.30 and steal a quite moment in the house to pick up the phone, I’m bounced from colonoscopy department to Mr Mullerat (my soon to be surgeon)  but was told to call back tomorrow, more waiting but I can cope cos I didn’t tell anyone I’d phoned so it was my secret.

Thursday 19th Feb arrives (the anniversary of my sister’s death and the day my mom loses a close friend to bladder cancer) and so does my best friend 🙂 In the morning at 10.30 I’d phoned my Doctors and they said the results weren’t in, that they would speak to a Doctor after midday surgery and someone would call me, they didn’t – more waiting!

At 4.30 I called them again to be told that my results were in and that Mr Mullerat was going to call me, time was ticking away so I called the surgical ward. Whilst I’m on hold Mr Mullerat calls me on my mobile and what followed was the oddest conversation I have ever had, good job my best mate Nicky could hear every word as it was unbelievable and went something like this…

Your results are in but it’s not as straight forward as giving you an answer, I need to see you in clinic but before that we need to do more tests and you will be sent for a CT scan as we need more information, oh and do you have a relative? Yes of course I replied, Oh good he said as you will need to have someone with you when I see you in clinic in about 10 days time!

Well what the hell did that mean hey? I told Steve straightaway and he was outraged, within minutes he phoned the ward back to ask what was going on but Mr Mullerat had gone home for the day, or so they said!

That night we bounced the problem backwards and forwards together, what was going on? Was it good news that he didn’t want to see me for 10 days? Why did he need to see me with a relative? After hours of debate and beer we decided that we would phone my Doctors in the morning as they had got the results.

Friday 20th Feb I’m on the phone at 8.30 am and got an appointment for 10.40. Steve and I set off determined to get the truth, we were against the establishment and their closed doors and secrets, we were not going to be fobbed off this time.

Mr Williams saw us, a young Doctor who I now feel sorry for. I sat whilst he read my notes on the screen of my recent tests whilst I talked him through it (I doubt he was even listening) Then the moment came, was he nervous? So instead of telling me he said “What do you think it is?” stalling for time I think or did he think we were stupid or was he weighing up in his mind if we could handle the truth?, not sure which one it was but I saw red and replied “It doesn’t matter what I think it is or not, what matters is what the results say it is” he looked at me and said “it’s cancer” I cried and Steve didn’t.

In the car park the option was to go home to Nicky and Rebecca or go for a drive, OMG my mom, what the hell do I say to my mom! We went home, I went straight for the coffee machine, Nicky was there with Rebecca in the kitchen, Nicky caught my eye and I just shook my head, she got the message. I think Rebecca saw us and after a minute she went upstairs. Know to tackle my mom who was 100 miles away. So I called Elsie a great family friend who without thought for what she was doing that day drops everything to be at my moms side, angels come in many disguises.

The text comes in from my mom “Is someone going to tell me what’s going on?” Now modern technology is amazing but it’s at times like these that the Find my Friends app is not helpful as she can see we are all at home. I pick up the phone and tell her not to panic, Elsie is on her way to be with her and I have malignant cancer! I can’t remember much else from that day sadly apart from my mom went for a meal with Elsie, Mel and their grandson and they provided the friendship and love that they had always done through the years.

 

This post is hard to write as it criticises the people who love me the most but warts and all the story needs to be told.

On returning home with my report I handed it to hubby, who studied it, looked up at me and said “well that’s all good then” I couldn’t believe my ears! “I’m sorry Steve are we on different fucking planets” I snapped back. Steve had seen the list of normals and I think he hung onto every normal word in the list, maybe he was scared too, maybe he hadn’t read it properly or maybe he was just in denial and wanting to protect me.

I phoned the doctor and managed to get an appointment that evening. The Doctor explained  to me that yes we were looking at it being cancerous, that it’s whether the biopsies turn out to be benign or malignant. She said that the results should be one to two weeks and that to start chasing the results in one week if I haven’t heard anything. She signed me off for another two weeks from work, told us to cancel our booked and paid for holiday as we couldn’t risk being away if this thing inside me burst.

This was still Wednesday. There then followed the most lonely time of this journey, I’m still in pain and have been for weeks, I’m stuck at home awaiting results and no one will talk to me. We talk about the weather and what’s for tea, we talk about anything but what was going on. Mom and Steve just play endless games of scrabble and every few minutes I just wanted to cry. Did no one care about me, am I just alone stuck in this nightmare? Why is no one sad? Why is everyone ignoring me?

I remember talking to mommy Alison from work about how I felt, that helped as she was kind and not dismissive but once the phone went down I was back again stuck in my lonely world of worry.

By Friday night I’d had all I could take so I grabbed a bottle of wine from the rack after mom had gone to bed and it was just the two of us, I opened it and poured myself a glass. I announced to Steve that I was going to drink that bottle and then maybe open another bottle and I didn’t care! After about 1/2 hour Steve finally said “is there anything you wanted to talk about?” That was it for me, we stayed up drinking wine for about 4 hours, I cried and cried but he didn’t. That didn’t matter as I just wanted to let off steam, my fears, my concerns for fucks sake in less than a week someone would say either the words benign or malignant and our world may change forever. Life can turn on a sixpence, we all take health, love, family and happiness for granted it’s natural but when your life, the one you have devoted time and love into is threatened it can suddenly leave you feeling very cold, empty and worst of all alone.

Little did I know but Steve had been researching bowel cancer online and I believe he was just trying to be positive and by believing in this the love of his life (that’s me LOL) was going to be okay, he just had to keep on believing.

Okay so I’m discharged from the surgical ward with Movie Prep and instructions.

What can I tell you about the misery of Movie Prep apart from it’s title sound glamorous but the reality is 24 hours of the runs, which pre surgery days was a bit of a shock, but not post surgery……more on that later.

The phone call came at 10.50 from the hospital, mom was straight to the mixing bowl bless her. You have to drink half the solution in two hours, rest and then drink the over half. The first session took me 4 hours even with my mom encouraging me. The solution is warm, salty and lemon flavoured, every mouth full was awful and I wanted to gag.

The evening came and I’m on nil by mouth so the family decide to have sausage and mash, Steve decides it’s a great idea to keep me company by eating his with me as I was hiding out in the kitchen away from the sight of them eating.

The following day in the hospital with mom for support I met my fellow camera up the bum crew for that day, all old veterans who wanted to tell me how many times they had been through it, that the worst was over and everything was going to be okay, they will tell you if you had cancer today. So dressed in the gown of shame I sat, listened to their stories of bowel horror and just wondered what my life had turned into.

I was called through to the room where a Doctor busy at his computer eventually turned to look at me. He was rude and insensitive “have you lost any weight recently he asked” I replied no “are you anaemic”  no I again replied “well it won’t be cancer then, get on the bed” There was about 5 nurses in the room, they sedate you and push the camera up your bum and around your bowel using air to inflate the intestine. I was aware of the procedure  and remember opening my eyes and looking at the TV screen. Now I’m no expert but I was shocked at what I saw. A pink healthy circular outer wall and within it a black mass of cells. That image haunts me still.

The worst part of it  all was that no one spoke to me, no words of encouragement, no don’t worry your doing well or nearly over. I thought about my son’s teddy bear and how holding something soft and comforting would help, I felt childlike again, venerable and alone, I longed for anything kind and gentle in this sterile lonely room.

In recovery one of the ladies I’d met in the waiting room was happy to announce to me that she had been told it wasn’t cancer, but no one had spoken to me 🙁

After recovery mom and I were called into a side room to speak to a nurse. She gave us their report, one for me and a sealed one for me to take to my doctor. Reading through the report with her the first 8 things listed were all normal, excellent but then came the Caecum part of the bowel where they had taken 15 biopsies from a mitotic lesion, there was scarring and it was grossly inflamed, that image of a black mass came into mind.

Leaving the hospital en route back home, reports in hand and black images in my head at least I’m off nil by mouth 🙂

 

 

 

It’s 7th Feb 2015, Rebecca’s birthday, I’m ready for an operation sitting in the surgical ward waiting room with hubby who still thinks it’s my appendix. The waiting room consists of hard chairs only. Opposite is a woman with one of those cardboard hat things for being sick into, various family group here to support their loved ones and me and Steve on two very hard chairs, me on nil by mouth and him going for coffee every hour so he can have a fag outside (jealous).

We arrived as promised at 7.30 following the night befores instructions on pending appendix removal. After a few hours they told us that I wasn’t going to have the operation but I was going for a CT scan at midday first. I’d already told everyone it was my appendix and my boss replied “okay see you in two weeks then” my first thoughts were that I may have to tell everyone it’s not my appendix and I’d already had to go from it’s my ovaries to it’s my appendix. The medical profession were trying to make me look a fool I was convinced but hey it’s not all bad, no operation and Steve has another excuse for a coffee and a fag, jealous!

At 12 as promised I went down for a CT scan. They put a cannula line in and lie you on the machine, then tell you they will speak to you via a side room as they are injecting radioactive dye into you and that the CT scan is dangerous and cancer causing! The machine starts up making it’s odd whirling noises. The ladies voice tells you to breath in and hold it, breath out – I can do this, easy! then the dye comes, first there is a metal taste in your mouth as you feel it flowing through your body and then the most oddest of sensations as you really do feel like you have wet yourself and it’s running down the insides of your thighs. The machine starts to shut off it’s whirling noise and the lady reappears as it’s now safe. She informs me that the images are available to view instantly and her report would be ready in about an hour. So back off to the ward I go, to the woman with the cardboard sick hat, the families who are now all having a picnic with Costa coffees, hubby who has managed to have another few fags whilst I’ve been pumped with radioactive stuff and me still on nil by mouth and no fags since 7 am, you can imagine my mood was sinking. So back to the hard chairs I go.

Time can be endless, sitting on the hard chair just waiting, still in pain and Steve, bless him asking me if I’m okay every half an hour. My poor hubby, with my mood getting ever more miserable I would reply “no I’m fucking not alright” to which he would ask if he could get me anything and I would just snap “yes get me fucking out of here” so he would make another excuse to get away from me and have another fag. I don’t blame him as if I could have got away from me I would. I’m so sorry Steve.

At around 4.30 that was it, I’d had enough, I was up on my feet and with a face like thunder. I went round the corner to the desk area, where they were all talking the Doctors and nurses. I gave them my special pissed off face and said “what’s going on?” The Doctor replied “oh we were just talking about you, I will see you and your husband now” There were no rooms available so he took us to an area and pulled a curtain round us. He talked about Crohn’s disease and diverticulitis  and the possibility of it being cancer, that he was giving me some stuff called movie prep which I had to take 24 hours prior to my colonoscopy, that he had requested an urgent appointment and to go home, someone would call me with a time and place. Great I said get this thing out of me (the cannula) now! I was too pissed off at the wasted day, the 8 hours in the hard chairs, regretful of my mood and snapping at my devoted hubby and also going all that time without a fag!

Back home I was able to spend the evening with Rebecca on her birthday and at least I still had my appendix……for now!

On 26/01/15 a Monday night, to celebrate with my management team for getting through another Christmas trading period we went out for bar snacks and beers, I was driving so diet coke for me. Ate too much and whilst walking back to my car I felt pain in my tummy, left hand side and thought I’d eaten to much (the first pain of cancer) I thought it was wind.

The next day at work busy busy busy so I didn’t notice the pain until the evening relaxing with hubby and a beer “oh I’ve got that pain again darling” I reported and then that was it, from Wednesday 28th Jan the pain never left me.

On the following Monday, 2nd Feb I went to the Doctors who examined me vaginally and anally, don’t they have a pleasant job hey! She said that there was blood in my bum but it was old blood and not to worry about it, she thought there was something wrong with my ovaries, I was referred for an ultrasound scan, appointment to follow in the post and so off to work for me.

The pain wouldn’t go away and I tried to cope at work with a hot water bottle, a present from the lovely Linda. My team knew I wasn’t right as I wasn’t going outside for my usual fag breaks (very unusual for me) I just couldn’t walk very well due to the pain. The photo below was taken at work, trying to cope with the pain witha hot water bottle.

Wednesday 4th Feb I was sent home during a regional meeting as I was in so much pain, I could have cried with relief walking out of the meeting as I just wanted to be at home. A rest on the sofa would sort me out I thought, wishful thinking.  Hubby came home from work and knowing me not to be a wimp with pain said “you’re going to A&E” after two hours of me trying to tell him it was okay, I didn’t want to go and that I’d be fine, I agreed to go.

En route to A&E I said to Steve “you haven’t told my mom we are going to A&E have you?” and sure enough he had as she had been texting him to tell him to take me as she was so worried about me, mom’s hey! Do we ever stop worrying about our kids? I think not.

After lots of tests at A&E they said they could find nothing wrong with me and sent me home with painkillers which made me throw up on the drive at 5 am, which to our neighbours must have looked like we had been out on the piss all night, if only LOL. Mom had driven down from the Midlands throughout the night bless her, she is a real worrier, sadly she was right to be worried.

I was day off work on the Thursday, had a phone call to say my ultrasound scan due to a cancellation was on Friday, happy days. At the ultrasound the man said that he could see a mass on my bowel and that his report would go to my Doctors and to go and see him today. 5.30 back to the doctors where after examining me, reading the report and seeing the pain I was in he said I needed to go to the surgical ward that night.

So from possible ovarian problems we had now moved to the bowel, my hubby Steve is no beating man but his money was that it was going to be my appendix, if only.

Upon reaching the surgical ward I told them that whatever they wanted to do to me would have to wait until the next day as it was Rebecca’s birthday the next day, I wanted to go home that night, give her her present and then they could do there stuff.

All agreed and back to the surgical ward for 7.30 the next morning (7/02/15), Steve happy with his diagnosis of appendix removal, mom and Rebecca had cake and tickets for the Lion King in London and I’m on nil by mouth!

 

 

That’s simple to answer. Whatever won’t work for me I just hand it to Steve and say “Mine’s Broken” in a stupid sulky childlike voice and he calmly fixes whatever it is. He works the problem, googles the answers, sorts everything out and then hands whatever it is back to me repaired and ready for me. I’m so needy sometimes It’s embarrassing. I won’t read an instruction manual and if given anything with buttons I just press them all until it works or normally doesn’t and I have to tell Steve “mine’s broken” again and he fixes it.
It also reminds me of being a little girl and when anything went wrong or I was upset I would turn to my Dad and ask him to wave his magic wand for me to make everything okay again. I blame Walt Disney! Where would our childhoods have been without the magic of Disney, the prince and princesses, the love, the passion and the only one ending which was happily ever after….. but that’s just in fairy tales and sadly life isn’t like that.

So mine was broken and Steve can’t fix it, my Dad died in 1997 along with his magic wand and therefore whilst mine is broken we are working hard to get it repaired again. I hope that if yours is broken and you are reading this that you have a Steve or a Dad with a magic wand to help you work the problem and you come out the other side cancer FREE 🙂