Month: March 2015

So it’s my first evening back at home and we decide it would be a great idea to watch an episode of Faulty Towers. Richard is home with his new girlfriend and she has never seen Faulty Towers (oh the youth of today they haven’t lived) so as a family we sit around the TV my Mom, Steve, Richard, Rebecca Louise and I. We are watching the German episode and I can’t laugh, the more I can’t laugh cos it hurts the more Steve laughs at me which makes me laugh and around we go. I never did watch the end of the episode as I couldn’t cope, tears of laughter albeit at my expense were heard again in the house.

Richard was home for the weekend to look after his mom, bless him. So what did he do? yes he stayed away from me in his bedroom with Louise. Now I don’t blame him at all wanting to be with his new love but oh how it hurt.
They stayed upstairs for hours only coming down for meals, they said they were watching films but never asked if I wanted to watch them with me downstairs.
We are all used to Richard coming and going in and out of our lives with his job in the Army. He is larger than life itself, he comes and goes bringing laughter, joy and trauma and then goes away again and we just play the waiting game until he returns.
My boy, my boy and I need him to sit with me, talk to me, just to be with me but no I’m a sleeping thing on the sofa with no interest to a young man full of energy, oh how that weekend hurt. Why can your kids hurt you the most when they don’t really see you or was that the problem that no one wanted to see what was left of me and what was to come.

The weekend past with my mom cooking, Rebecca in her bedroom and Steve turning into my showering partner where I had to sit on a stool to wash, I can’t lift or squeeze bottles and just getting in and out of the shower took effort. Walking up the stairs I was out of breath and drying my hair could only be achieved by sitting down. A cripple, relying on my loved ones for everything. I was the strong one, I was the worker, I was the cook, I was the cleaner, I was the domestic organiser and the words I was echo and echo and echo. When would I be strong again, when would my life resume, when would I be myself again?

Steve seemed to want me to face everything full on and didn’t seem to like anything that reminded him of the operation. I was given a cough pillow to use to support my stomach but he said I didn’t need it, he wanted me to take off my plasters and face the scars but I didn’t want to face them. He was doing this out of love and was focused on getting me strong again physically and mentally but I just wasn’t ready.
I had to inject myself everyday after my evening meal and Rebecca took on the job of making sure I was stabbing myself on time, bless her as she must have felt all of the roles in the house were taken.
As Richard left that weekend he said that he didn’t know how we would cope without him, we have laughed about that many a time since and of course we did cope, we had to, no choice as normal.

My 4 days on ward 12 was an odd experience. I had become the watch woman of Karen’s pain and sick bag. I was administered the wrong drugs, discovered the power of water, understood the word hero and wet myself, so I’ll explain each one in turn.

One night the drugs trolley appeared but unusually there was only one nurse on the trolley. Karen was always first for drugs and as trolley went round I was quiet looking forward to my turn as I needed my strong painkillers that had been prescribed for me. The nurse looked at my name and gave me two lots of drugs, an antibiotic and laxatives, I told her I wasn’t on either of those drugs but she assured me that I was and should have been taking them already from earlier that day. We kept having the same conversation like Groundhog Day but she assured me I should take them, so I took the antibiotic first, she then decided to check my NHS number and was horrified that she had given me the wrong drugs, she asked me not to tell anyone and she was sorry but there was another Wendy in another ward. Thank god I hadn’t taken the laxatives. My face started to go numb and the nurse monitored me throughout the night, I texted Steve so there was evidence if I died of what had happened to me. I never got my strong painkillers.

The power of water – Not sure what day it was but I was told I was having a shower. Wash bag collected I sat naked in a hospital chair whilst this wonderful nurse showered me. Water, just simple water, I can still remember how beautiful it felt to feel clean to smell girly again and wash away the stains on my skin of the operation and to finally see my plasters. Two thirds of the worlds population don’t have access to running water and oh how we take this for granted.

Hero’s – One night the old lady next to me had obviously shit herself or broken her bag, the smell was awful, it filled the room and wouldn’t leave. I tried to cover my mouth to block out the stench but I couldn’t, no one could have. Behind the curtain a nurse was sorting the poor old lady out, she was comforting, kind and compassionate. We talk about our serviceman and woman as being hero’s and they are but I tell you what to clean up smelly shit from someone else in the wee hours in the morning and still be kind whilst your just on above the minimum wage is someone who is a true hero to me.

Wetting myself – There was a young male nurse on ward 12 who was our bit of eye candy, he was Italian, bless him. He was sent round to remove the catheters from us, now a nurse is a nurse but there was a limit! This young man was fiddling around in my fanny and the towel (still unused) was still wedged between my legs, oh the shame. He removed the catheter and left, probably traumatised by my aging bits. I sat on my bed and after sometime I was aware that I was wetting myself. I didn’t move or try to stop it I just announced to Karen that I was wetting myself and laughed.

Sick bag monitor – Karen still wasn’t well and every night I sat keeping an eye on her, watching episodes of Silent Witness on Steve’s Ipad and puffing on my E cigarette under the covers hoping not to get caught. Anything but sleep for me. One night Karen was very ill and I’m shouting at her to call for help but she can’t find her buzzer thing so I get mine and ask the lady next to Karen to also press for help. The nurses came quickly thankfully and the curtain was pulled around Karen again.

On Friday Mr Mullerat told me that I needed to go home, he knew I wasn’t sleeping and I had to get out but I didn’t want to go home, how could I cope? I was scared and who would look out for Karen? I agreed to go home on the Saturday morning to start my recovery at home and hope that Karen would be okay.

I don’t remember being in a recovery room at all, still don’t. My first memory was of being in a bed in a ward and at some point I saw my mom and Steve briefly but that’s it, it’s all a bit of a blur. I have pumping things on my two feet which keep my legs moving at all times, I have cannulars, drips, wires and oxygen bet I looked lovely. I remember having a piece of toast and a drink of coffee and that unbelievably I was not in any pain.
The next day the nurses of ward 12 were looking after us straight away, testing and monitoring us and attending to our needs. I was in a ward of 5 other women all with bowel cancer, three of them were older than me and opposite there was Karen. She was around my age and we exchanged a brief smile but both having been through a big operation none of us were up to chatting at this point.
I remember the anesthetist at the foot of my bed asking the nurses if there was any paralysis! what sort of a question was that! I was then told I had been given an epidural and she was just checking that I wasn’t paralysised. So that was why there was no pain hey and more tubes and wires in me that any woman ever needed, fabulous I thought.
The nurses come round with the drug trolley every few hours and they ask us all the same question “how is your pain on a scale of one to ten” you rate the pain and the magic pills come out of the trolley. Now having an epidural I had no pain I couldn’t feel anything from my tits to my knees but I thought I should have painkillers away as I should be in pain shouldn’t I?
Karen was one day ahead of me in the operation game and was opposite so we could talk before visiting started at 3 pm. She had suffered for about 10 months with her Harry, it was higher up in the bowel and therefore she couldn’t have key hole surgery. She had a 4 year old little boy who she had tried for for 8 years with her husband. Without thinking (I blame the drugs) I said “so you try for years to get a child and you finally get your wish and then god gives you cancer” Her face crumbled and the tears rolled, oh shit I shouldn’t have said that. I regretted it watching her sit and cry I didn’t want to hurt her but ain’t life just shit sometimes hey!
Karen’s pain started to get worse and she was struggling big time. They had removed her epidural and pain had kicked in, so did the sickness and the torment of what her body had gone through. I was next!
They moved me into a chair next to my bed to remove the epidural as it had to be done whilst the pain team were on duty. I sat for a while after it was removed and then it started to build, the pain of what my body had endured. Firstly they gave me a morphine tablet, then an injection of morphine into my mouth. They asked me to rate my pain between one and ten but I just couldn’t answer, it took 3 nurses to get me off the chair and into the bed. I was then hooked up to a self administering morphine drip that they give dying people so you can injected yourself every 5 minutes and no more. No words can express the pain and I just kept on pressing that button hoping the pain would ease.
Mr Mullerat came and saw me daily. He said that I didn’t want to know what they had done to me but that the cancer had gone through the bowel wall and had started to eat away at my tummy so he had to scrape away the muscles. it’s okay I thought, no bag at least, you’ve got to take the positives hey.
Steve bless him decided to post on facebook that I was doing really well, eating toast and drinking coffee. Oh my poor hubby how he paid for that comment! The texts and messages flow into my phone of how pleased everyone is of how well I was doing. I just stopped looking at my phone in the end, did no one have any clue about the pain and suffering I was going through. I remember getting one from my lovely Emma who didn’t mean any harm but I could have thrown my phone at the wall, I was trapped still in this world of pain and everyone thought I was doing really well.
The following nights Karen got worse, she was given a hot water bottle style thing to drain away the washing up liquid coloured sick and was just so ill. We would just look at each other and pass either a thumbs up or thumbs down as to how we were feeling. Two strangers on the same path with no words but a comfort to each other that no one else could understand. I knew she was suffering and I couldn’t help her, I wanted to help but she just kept on suffering everyday not getting any better and I just wanted to cry for her, my new friend that I didn’t know but I knew her pain.

The 24th March came round, Harry’s last day inside me, eating away at me. The operation is booked for 3 hours in the afternoon so I’m back on nil by mouth. To pass an hour away Steve and I take Molly for a short walk in a local park. Walking was still a struggle but hey just a few hours and it would all be gone.
When will I be able to walk the dog again? Will I survive the operation? Will I wake up with a bag? So many unknowns but one thing was for sure my body will never be the same again after today. How big will the scars be? Will Steve always look at that part of me and think cancer? I just had to go through whatever was coming and deal with scars, bags and whatever else was coming my way as it unfolded, no choice.
Steve took me to the admittance ward, they were ready for me, my gown of shame and tag of terror. Changed and ready Steve was itching to go for a fag, bless him as we were early. It’s like going to an airport on holiday when you know you can’t smoke for hours and panic sets in, just one last fag and then I’ll cope until I get to the other side but sadly for us there was no beach and beer waiting.
Around 1 o’clock Mr Mullerat arrived and had to go through a long list of possible side effects of the operation, including death – lovely.
I was taken down around 2 o’clock saying the briefest of goodbyes to my man as we don’t like to make a fuss about stuff, I think it was just a small kiss an a “see you later” moment.
Then he was gone, fear set in. I’m on my own in the gown of shame with complete strangers who don’t know me and I’m due on! Why would it have to be due today of all days, what if I come on during the surgery, oh the shame. So I’m armed with a sanitary towel which is alien to me now since the age of 13 years old when my dear friend Linda Watson introduced me to tampax on a school holiday in Spain, bless her. I have a plan to pass it to a nurse before surgery and hope for the best.
I walk down corridors following a nurse until I reach the waiting area, alone and wondering what everyone else is up to. How often do we forget people suffering, dying, or being born all around us as life goes on but we are too busy to see it.
I’m put onto a trolley bed and taken into a small room with about 4 nurses in it and all ready to stick cannulars and stuff into me. The anesthetist is a lovely lady and tells me that she is going to make sure I enjoy the trip, I tell another nurse about my period problem and she smiles and just says “I’ll look after your dignity, don’t worry”. In front of me was the two double push through doors where I knew Mr Mullerat would be and his team and then that was it, lights out, gone into a sleep of not sleep, pushed through the double doors to get rid of Harry.

Mr Mullerat decided to bring the date of the operation forward by one week to 24th March. So the planning began. I needed a long list of stuff to include nighties which was odd as I don’t wear anything in bed apart from the monthly pants of disappointment as Steve calls them.

Toiletries, bags, nighties, face wipes etc my mom loves doing a list bless her. All were collected and ready to go.

Now when you face any major surgery it’s an odd time as you have no choice, you are scared about what’s to come but also what will live be like post surgery. You pass everyday just counting down the hours and minutes until the date arrives.

It had been two months of pain and medical tests which had sucked the life out of Steve and I. Our once relationship of contentment, love, passion and friendship had turned into a constant discussion of cancer, it takes over your whole world and becomes it’s own disability. Even the nights that we said we were bored of talking about cancer and decided not to talk about it within minutes we were back on the subject and going over the same old ground again.

If the kids were about to gross them out I would say stuff like “no anal sex for you Steve” just to embarrass them and make fun of the situation but the truth was that for two months cancer and pain had destroyed the sexual side of us too. Being in love and married to a wonderful, supportive, caring man is hard. He tells me he loves me everyday, how beautiful I am even though I’ve only worn Superdry joggers for two months and hardly done my hair. He always sees through the external stuff and only sees me. I on the other hand find emotion harder to express (I get this from my mom) I don’t tell him enough or show it enough, he deserves better than that.

I decided that we have to make love before the operation whatever pain I was in. We eventually have an evening to ourselves and armed with painkillers and beer we go to bed. Now if you have been married for a while and your sex life is good then you like me are truly blessed but sex is sex and love is love, very different things. The physical act is just two people coming together but holding the person you love next to you naked and just being together and loving is so special that nothing beats it. The overwhelming urge for Steve not to hurt me and the tenderness of him and of us after so long was all too much for me and whilst we made love I cried for us and afterwards I cried for us and Steve didn’t cry.

So flying home from my crying at the park with Emma I hit the painkillers as soon as I got through the door. The pain just wouldn’t go away and over the course of the evening I watched the clock for when I could take my next dose of painkillers. Steve and Rebecca had gone to bed and I’m left alone again in pain, Steve knew I was in pain and It’s not that he didn’t care but as usual when asked I said I was fine, but I knew I wasn’t.
It got to about 2 am and I decided that I had to try to sleep off the pain so I got into bed, sleep was never going to come to me that night and I suddenly realised that the drugs I had taken at midnight were going to wear off soon and I couldn’t cope without painkillers so I got up again trying not to wake anyone.
Downstairs on the sofa in the kitchen I sit with Molly, I couldn’t put my back on to the sofa as the pain was so intense, Molly was whimpering next to me like she knew I was hurting and was crying for me.
At 2.50 I know that I need help but I can’t wake anyone up that’s just not the done thing, they need there sleep, they have to be okay and I don’t want them to worry so I call 111.
I cry down the phone to this poor receptionist that I have cancer, I’m due to have an operation on Tuesday and I have taken all the painkillers I can but I have stronger ones, “Which ones can I now take” I need help, please help me. She says someone will call me back. A nurse phones back within 10 minutes and I repeat my plight through tears again, please help me but she just said that she is a nurse and that someone else will call me back. So I try to sit with Molly all alone and cope cos I can’t wake anyone up.
The pain just won’t go Harry is really angry and so at 3.45 I decide I’ve had enough of waiting for 111 and I call them back. I have decided that I will be brave, take more painkillers and try to sleep it off and tell them not to phone me back as I would be asleep, what was I thinking of!
I put the phone down and continued to sit with Molly. Then the first wave of sickness hit me, running to the sink I threw up, great I thought I’ll be okay now and washed my face. The pain and retching just continued until there was nothing left inside but bile. Then the overwhelming need to go to the loo started, OMG I was exploding at both ends and trying to cope with pain and not trying to wake anyone up.
After my body explosions had stopped which took a while I then decided that I could take more painkillers as I had thrown them all up. Took another set of 4 and went onto the settee in the front room, Molly followed for support. Within minutes the sickness started again and sweating, retching and crying I hung onto the sink, the fear of what was going on in my body was scary and I choose to face it alone but I wouldn’t want anyone to see me in this state.
I managed to sleep for 3 hours. Later that day I phoned my best mate Nicky for help, as she had a friend who knows about dealing with cancer (Mandy) but Nicky after hearing my story said that I had overdosed on tablets as I had taken 6 lots not the 3 that Mr Mullerat had advised. I probably had overdosed or my bowel was blocked I’m not sure but all I did know was that I had to make it to Tuesday as Mr Mullerat was going to take my cancer (Harry) away and all this would be over.
When I told my story of calling 111 to the medical staff in the hospital they said that I should have complained but I never did as again it’s not the British way is it! We like a queue, we like to moan about the weather, we say we are fine when asked and we definitely don’t make a fuss.

The Friday before my due operation date I was on my daily dog walking around the park, by this time I’m so slow at walking with the pain it takes ages to walk anywhere but I choose to sit and throw the ball by the stream in the vain hope that the dog, Molly dog is at least enjoying herself.

I receive a text from Emma at work and decide that a phone call would be easier than texting. The guilt of not being at work to help her just kills me and I mourn for my past world. After discussing whatever pressing work issues that poor Emma had only called for I was overcome with the sense of loss again “I’ve lost you I cried, I’ve lost you all regardless of whatever I do” I tried to hold the tears back but couldn’t, I was crying and so is Emma and the dog continued to chase the ball. She tries to comfort me and be positive but she knows it’s true. The operation will be hard to get over and I’d already been off for 2 months. Not being there everyday, not being up to date with the business was a slow loss which I couldn’t stop.

I had started watching ‘Breaking Bad’ at night when Steve and Rebecca had gone to bed and learnt that everything around us comes from carbon, including us. If you look at yourself and see who you truly are a mother, a wife, a daughter, a sister, a friend but whatever you have in your life it’s yours and you define who you are. I came from great parents who were proud, trusted, loving and solid and you always had to do your best, never complain and get on with it regardless and now cancer was defining me and I had no choice. If I couldn’t offer me to anyone anymore then who was I apart from useless to everyone, a disabled, needy in pain mess who couldn’t perform any function that resembled the long list of titles I’ve mentioned that we all hold.

One of my favourite hymns has these lines: ‘Oh what can I give him poor as I am, if i were a shepherd I would bring a Lamb, if I were a wise man I would do my part but what can I give him, give my heart ‘ and sometimes that’s all you can give, your heart and pray that it’s enough.

Emma and I continue to cry, as I walked towards the car. Stopping again to ball throw for the dog I knew I was in trouble with the pain. Was it the endless sobbing or was Harry angry, did he know he was being removed in 4 days? either way I remember saying to Emma “I’ve got to go I’m in trouble” and fled for home. This was about 2pm and what followed was a night of fear.

As this is my first post I thought I’d just post up how I announced to my friends and family that I had Cancer – A facebook status change! Oh how the world changes with the internet, not all bad as think of the money I saved on phone calls LOL

During my journey with Cancer I had not read any Blogs but my husband Steve did to get real information from real peoples experiences. The day before I went in for my first Chemo appointment I did read a blog as I was unsure if I wanted to bare my all with the world. I was really finding it useful until I read that the lady had died at age 31.

Steve says that the most frustrating aspect of reading a blog is that people don’t update what happened to them, so whatever happens to me and if I am unable to blog, Steve will update this so there is an end. This reminds me of a quote I like “It will be alright in the end and if it’s not alright it’s not the end”

Anyway enough rambling and here is that post which I hope explains the first part of the journey:

Cancer – Coming Out

At the end of January 2015 after a night out with my BHS management team I just thought that I had eaten too much, wind can be very painful. Turns out that I have bowel cancer.

Some of you saw me struggling in the early days with the pain that I was in and therefore have been on this journey with me and for those of you who are reading this and I didn’t tell you I’m sorry that you are finding out this way.

I have been overwhelmed with the support and love shown by you all, cards, flowers, private messages, prayers, letters, personal visits, video messages, texts and phone calls have all made this difficult time easier so thank you all so much.

On 31^st March I am due to have an operation to remove the tumour and after that I may or may not need chemotherapy depending on if it has spread to the lymph nodes, I’m one of the lucky ones where it has been caught early.

Cancer is an awful disease because it takes over your life and of those closest to you. Depending on your life experiences with cancer or any other serious disease it becomes all consuming and forms a type of disability all of its own, your life goes on hold whilst you play the endless waiting game of results following tests.

Faith, hope and love is all you have left and I’m blessed that I have been surrounded by these and hence the reason for this Facebook post. I watched my father die of cancer and therefore I know sadly only to well the suffering cancer brings to the people supporting the person going through it.

This post is to thank you all for your love and support but to ask that if any of you know my mom, husband or children to support them more as they are the ones who are my world and have to live with me through this everyday.

Final thoughts for you are that you are never going to be as young or as beautiful as you are today so live life and don’t stress over rubbish that doesn’t matter. And to my BHS family I’ll be back to drive you all mad as soon as I can LOL

 

 

 

 

 

 

 

 

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.