Mine's Broken

It’s 21st May the night before the chemo appointment. I’m getting organised with my typed list of questions as I had previously done with Mr Mullerat. I think I’ve got everything and I’ve also looked on the cancer research uk website which gives you a guide of some of the questions you may have forgotten about.
I ask Steve to review my list and what did he want to add if anything. Now my hubby does lots of research privately and is always one step ahead of me, but he just doesn’t tell me. We talk through my list and soon get onto personal stuff, stuff that isn’t on the list of possible questions like can I have my hair dyed? Can I sunbathe? and of course can I have sex?
Steve logs onto one of his trusted sites and reads that sex is not allowed without a condom, great! Apparently the drugs can be transmitted in bodily liquid such as the vaginal secretion, “so what about oral sex and kissing” “I don’t know” replies Steve it doesn’t say but it does say that you can ask any questions at the appointment and dares me to ask them. “I’m not asking that!” We just both thought it funny that sex and normal life isn’t mentioned really, no one talks about it. If you have cancer do you stop being attractive? Does desire stop? The only thing we could find was a line that said ‘you may feel differently about your partner during this time’ what the hell does that mean? If you are a man and go off sex then will the woman be offended and vice versa? The evening ended with jokes about radioactive fannies which hid the truth that the next 6 months on chemo was going to be a different life.
At the appointment we were seen not by Dr Weaver (he was obviously seeing someone who was willing to pay £240 for 40 minutes of his time) but by his registrar and cancer nurse Kim. The appointment as it turns out was only to go through the side effects and sign a consent form as death is one of the side effects, what a waste of time as not only did you have the side effects discussion once but we were told you had to have it twice. No start dates given! I couldn’t believe it, what a waste of time I thought plus my mom was really going to be mad when she found out. I just couldn’t believe it and now I’m angry.
So with my best polite I’m pissed off voice I say the words ‘let me give you some feedback’ LOL and I did just that, they had it coming in terms of managing people’s expectations, waiting times and just for cancer nurse Kim the ‘not phoning people back when you say you will’ they sat there and took it then the registrar tried to justify the delay in chemo by saying that my operation needed to heal first and that it would be fine. Now you can lie to me but please don’t ever insult by basic intelligence!! So why did Mr Mullerat tell me 2-3 6 weeks ago then? and you still aren’t giving me a date so we are now looking at 8 weeks, that statement just justifies the delay and I’m not that stupid. Steve just sits there knowing that he had better just let me rant and he can give me his feedback later, no need for a total melt down hey.
The registrar in an attempt to revert to being the helping, calm professional and bring the meeting to an end said the worst thing “do you have any other questions?” Well by now I just really couldn’t resist (LOL indeed I thought, I’ll have you) “Yes” I replied “What about oral sex?” Steve froze, the register stumbled errrrr and cancer nurse Kim went bright red, reached for her chemo advice guide muttering “oh I’ve never been asked that before” she remained red and sweaty under the pressure of the question fumbling with her book, I however was enjoying myself. She eventually said that oral sex would be fine but condoms must be used for sex. Well by now I’d had my fun so I didn’t challenge the obvious question of how does that make sense, if you can’t kiss with tongues or have sex then how can oral sex be okay? if anyone does know I’d love it explained to me.

At the end of the appointment I did show the registrar my swollen lymph nodes in my neck, she examined me, neck groin and tummy and said that they needed to find out what was going on inside me and that she would order a CT scan. We left and Steve said I’d been a little harsh on them, tough I thought and we are back to the waiting game again 🙁

My meltdown is not easy think of or to write about. I need to set the scene for you as it’s never one thing that triggers a meltdown in anyone but a slow build up of emotion that just erupts without warning sometimes. I am not or I was never much of a person for crying not that I didn’t want to cry but because I was always fearful that if I started to cry and I mean really cry I would never stop. Losing my sister and dad had brought on such meltdowns before and they scared me. Maybe that’s why when asked how I am I always say ‘I’m fine’ because I don’t like to really feel how I am, I just try my best to cope, I’ve learned to build a wall. Anyway my meltdown was caused by two people, my son Richard and his first girlfriend, Brianna.

Richard was due to go to Canada on Friday 24th April for 6 weeks. The weekend prior to that he had arranged to spend it with his new girlfriend. That’s fine, no problem with that at all, in fact I’m happy that he is happy. I spoke to him on the Monday prior to him going, I wanted to see him before he went and asked that if we came down to him could we all go out for a meal on either the Wednesday or the Thursday? I had already asked Steve and he said he would drive us down there after he had finished work. Richard was based at Tidworth, just over 50 miles away. Richard’s reply to my suggestion was ‘I’m too busy’ I was both shocked and hurt that he didn’t want to see us before he left and surely he had to eat! I didn’t push it or make a fuss.
Brianna was Richards girlfriend from age 14 – 17. She had been part of our family for those years and gone through the early part of Richard being in the Army and stood by him. When they broke up I also lost a friend. As the years past by we still kept in touch, nothing regular but on birthdays and Christmas. We had met up twice in the 3 years since they had broken up, I always told Richard when I had been in touch with her but I knew that he didn’t like it. Brianna had suffered cancer in her own family in the past and she was now worried about her own mom who was undergoing tests and her Aunty, who was around my age had just gone into a hospice. Since I had posted about my cancer Brianna had of course been in touch and we had agreed that week that we would meet up on the Wednesday at 12.30 for a quick chat. We always contacted each other via messenger but hers wasn’t working and so she posted on my Facebook page about our coming meeting and if messenger had been working for her that week, no one would have ever known and I wouldn’t have had my meltdown.

I was 5 weeks post operation and it had been 12 long weeks since I had been at work. I had agreed with work that I would be able to work from home and out of my local store from week 6 post operation as part of my phased return to work, until chemo that was.
In some small way to support Emma we had started weekly conference calls with my management team on a Tuesday so I could still feel part of what was going on. We had set the call for that day at 11 am. At about 9.30 my phone rings, it’s Richard wow I thought, Richard was calling me in the daytime and as I answered the phone I was smiling, but that didn’t last long.
Richard asked me what was going on in that he had read on Facebook that Brianna and I were meeting up. I explained about the messenger problem, that he knew I saw her occasionally and about her worries with her family. Richard was just to angry with me and I could hear that anger in his voice when he said “that’s fine Mom but I don’t want to read about it on Facebook’ I thought hold on a minute was my son telling me off? I just saw red and had one of those moments where you don’t think at all before you speak, “how dare you, I’m 47 years old and I am not having you tell me who I can or cannot see and at least she can be bothered to come and see me cos she’s not too fucking busy!” I can’t remember if it was Richard or I that hung up first. I would have liked to have said I slammed the phone down as years ago on an old home phone if you were angry you could really slam the phone down and release some of that anger in doing so but it’s just not the same with an iPhone.
I was so angry, how dare he, he couldn’t call me to see how I was or to show that he cared and was maybe thinking of me in his busy day but he could phone me up and have a go at me. After a few minutes I had a text from him that just read “shall we try that one again hey” so for the next hour we argued and I think hung up on each other 3 – 4 times. I could hardly talk for crying and through the tears. I do remember screaming at him saying that we were arguing about stupid stuff that didn’t matter and that we should talk about stuff that really did matter. Eventually we gave up trying to sort the argument out as Richard can usually only see one point of view and that was his, he had to win the argument at any cost and the more he justified his pathetic excuses as to why he couldn’t even spare me 1/2 hour on any day that week to just see me due to working on a tank or whatever it was the more I sunk into despair. I wonder where he gets that stubborn streak from hey?
I was on my own at home sobbing my eyes up when when the house phone rang, it was Emma and the booked conference call, I apologised to Emma and said please just give me an hour and I’ll text when I’m ready. So I sat and sobbed, really sobbed for many reasons, all the hurt and anger came pouring out.
When mom and Steve found out about the argument they were both really disgusted with Richard. My mom is a real peace maker and normally can see the best in anyone and try to resolve all conflict but even she was angry with him and was going to call him to ‘have her say’ but she didn’t. Steve also wanted to discuss what had happened with Richard cos Steve was really pissed off with him too but thankfully I could stop him.
As a mom I don’t think there is another pain like the pain your kids can cause as we are just their parent, we can cope with anything, we are strong and don’t have feelings, we are their punch bags for whatever they want to hit us with and because they are our kids we all take the punches again and again, that’s the unconditional love that we have for them, it knows no limits. I have caused my mom some pain in my life through nasty things I’ve said to her and it’s one of the sad lessons in life that we learn in that you only realise how much you are loved when you become a parent yourself.

I did meet up with Brianna as planned but I never mentioned that she had caused a massive argument, we just sat in the sunshine and chatted about life. I did manage to do the conference call in the end and Richard went off to Canada without being able to spare a 1/2 hour to see his mom.

After posting this and discussing this entry with my mom, Steve and Rebecca, I have decided to add a footnote.
The last thing I want to do is cause any pain to my loved ones through writing this blog, which is designed to help others. If I died tomorrow would this post leave a legacy of hurt for my precious son? No mother wants that. I love both my kids with all of my heart and the argument with Richard was heated yes but because we have such a fantastic close relationship forgiveness on both sides was never going to be an issue. We have apologised to each other for what happened that day. I know Richard feels safe in the knowledge that I will always love him, I’m so proud of him and the man that he has become. (special code for Richard which only he will understand) ‘Love, Love the Loves’ my boy xxx 😉

What’s that great saying? ‘Home is where the heart is’ that’s the one. I am lucky to have two homes, my actual home and my BHS home in Kingston. 9 weeks post surgery and 15 weeks since I was first signed off sick with possible appendicitis I was finally going back into work, back to Kingston 🙂
Anyone who has had time off work e.g. maternity leave will understand when I say that whether you like it or not you lose your confidence. Your working world has to carry on without you as what’s that other saying? oh yes ‘we are all just a number’. Emma and the team had continued to run Kingston without me. I hadn’t had to make a decision in months apart from basic functions oh and my all time favourite now of ‘where’s the nearest loo’!
They didn’t need me anymore, I was just in name only, a person that once drove them to distraction with one mad project after another. We had achieved so much together, such precious memories and now I was returning still trying to just cope with walking and carrying a handbag at the same time.
No one knew how much going back there meant to me apart from Emma and of course Steve, they understood my need to be there.
Your job and what you do in your work life is important but I understand that I need people around me, I in fact need to be needed. I had done regional roles in previous jobs but it didn’t make me happy because I wasn’t needed, or part of a team and their everyday lives.
Since I’d been off sick I have of course been in regular contact with Emma and Alison. Linda doesn’t do modern technology and when I received texts from her it would always makes me smile as I know a few short words would have taken a lot of swearing and about an hour or if she sent a longer text I know that John (her hubby) would have had to of done it for her.
Whilst being off I was so touched by the messages from my team from people I had not expected to get messages from. Being a boss is a job I do take seriously, I’m there to earn my wage not to win a popularity contest and some people just don’t like me and that’s okay. Steve says that I’m like Marmite, you either love me or hate me. I actually don’t like Marmite but I hope you get the point. So if your not a team player, you don’t like to do a decent job or you think that ‘that will do’ is enough then your not going to like me.
I thought I would just break down and cry just walking through the doors that day but I held it together. Everyone made a fuss, I had lots of hugs, my office was decorated, I had flowers, banners, a balloon and my very own welcome home cake 🙂

It was just so lovely to be there, when anyone asked how I was I replied my normal “I’m fine” which was true in terms of recovery and some said one of my all time favourite statements which is ‘gosh you look well’ This one cracks me up, is anyone with cancer expected to look like shit or close to death and how on earth does the person with cancer respond? I just say “thanks” and leave it at that however I have been tempted to say occasionally “would you like me to look a little more gaunt, maybe thinner, or just a little more death like?
On my journey home I think I cried most of the way home, I’d loved being there with them all, normal again but I knew I couldn’t go everyday like I used to, I knew with chemo coming I had just a few short weeks of being part of their lives again and to help Emma and then months of chemo would prevent me being there and I wouldn’t be needed again.
I got home and Steve asked how it went and I told him all about my day, full of joy and laughter but I didn’t mention the tears or the lack of confidence cos to discuss it would make my fears real, so best to pretend that ‘I’m fine’.

We arrived at our hotel in the evening. The room was as Steve had shown me on the internet, it had a kitchen area, a lounge and a separate bedroom oh and the all important balcony where we could sit outside for a smoke.
Now normally when we go anywhere and arrive at our hotel room and the following things happen and it must be due to basic instincts between men and women. I get into the room and unpack first, all the items have to be put away in their relevant rooms, clothes hung up, toiletries ready for use and anything technical that we have brought with us in a man draw ready for when I’m asked by my hubby “where’s my ****” Then I can direct him as I know where all the stuff is.
Steve arrives in a hotel room, removes as many items of clothing he possibly can, gets a cup of tea and smokes until he feels he is ready for the next man task.
This time Steve took me by surprise and started unpacking, he was helping, now this bless him was a long list of changes for him in that week. He had obviously thought long and hard about how he was going to cope with his partially disabled wife as he was the only carer for me for one week.
That evening we went and found a restaurant to eat in and whilst studying the menu Steve ordered two large beers. The problem with large beers are that the glasses are man shaped and heavy, I couldn’t even lift the glass I had to steal a wine glass off another table and decant the beer into it, that’s how weak my stomach muscles were then.
We had a lovely meal and continued to drink beer throughout the evening. Just enjoying the warmth of the night air and each others company. We had popped into a local shop to buy some beers to take back to the room with us so that we could sit on our balcony as we were both so genuinely happy that we had made it on holiday. We were there in the moment, full of food and beer and the past 3 months whilst always with us, at least we could look forward to our week and whatever adventures it held for us.
That night after we had spent another hour or so on the balcony just talking together we went to bed. Now we had been told that post surgery that love making was forbidden for at least 6 weeks. It had been 6 weeks and 4 days since the operation and even a few weeks before that since we made love so it had been a while. I am not sure why you can’t have sex for 6 weeks, where did that figure come from and you are not actually using the same area of the body are you? unless you are into that sort of thing.
Just being with my hubby naked again, just being us, just feeling safe, just touching him was wonderful. It had been too long since we had experienced love making and so with enough beer in me to numb any pain we started to make love (yes there was foreplay, he didn’t just jump on the nest but in case my kids ever read this page I will leave out the details). As we made love the emotion of being together again was all too much for me, all that we had been through, all the fears we both had, all the love and devotion I’d seen in him and the sadness for all the heartache cancer had caused us just washed over me. Instead of being the explosion of passion you would have thought there would have been after so long, I cried. Steve held me and I cried, Steve comforted me and I cried, Steve told me how much he loved me and I cried. Steve didn’t cry.

The holiday was amazing, we both loved it in every way. I think I really do know the meaning of the phrase ‘savour every moment’ as we both did just that for one week, we made the most of everything everyday.
The only other funny story from the holiday was on one windy day on the beach where we decided to go into the sand dunes for shelter from the wind. After lying in the sun for a few hours and just reading together Steve stood up so that the wind would cool him down. He was soon back down onto the safety of his beach towel as when he had looked around the dunes there was a woman with 3 men and they weren’t asking her for directions! Well they could have been but the woman had her mouth full and the others were looking on playing with their sat navs if you get my drift LOL.
Thank you Steve for a wonderful week, for looking after me and for loving me.

It was agreed that we were going on holiday on 9th May. Steve had managed to claim back almost all of the money from the holiday we had to cancel and nothing was going to stop us now from taking one week, one precious week just the two of us alone together before chemo had to start.
Nothing but the best was organised by Steve for me, priority boarding, fast track check in, the top hotel in the resort and a luxury rental car. No cheap flights with stupid flying times either we were too old for that and no stress was the only thing on the menu for one week.
The only problem with all of that was that I still recovering from surgery still struggled with carrying, lifting, walking and coping with the toilet but like Steve just needed a break from it all, to be in the sunshine, to be us.
At the airport poor Steve had to drag the two suitcases and wait endlessly for me to catch up with him as he walks at a normal speed and I limped slowly behind him. Suitcases checked in we head for the lounge excited and free. Our gate was called and it had to be the last gate in the bloody airport, a 15 minute walk and that’s at normal speed so we head off. The walking and carrying a handbag soon began to pull on my side and the pain of movement was wearing me down. Steve continued to walk ahead and then stop, apologise, wait for me and then set off again. I started to feel like a cripple again, I couldn’t keep up with him and all the other passengers who rushed and pushed around me to get ahead me, ahead of this slow limping woman who was just in their way. I just wanted to sit and cry, I felt a burden and an embarrassment to Steve and jealous of all the able bodied people rushing to get to the gate as soon as they could just in case the plane was going to leave without them.
We were nearing the priority boarding line when I spotted the last toilet sign so I decided that just in case I should go before I got on the plane. I came out of the loo to find Steve shouting towards me to ‘come on’ cos the priority boarding was closing, he just wanted everything to be perfect for me and had planned everything so that it was easy but I hadn’t really walked anywhere for months and I couldn’t go any faster. What the hell was I doing I thought, I can’t go on holiday, I can’t walk for a start, I’m in pain and everyone makes me feel like I’m disabled. I walked as fast as I could for him and finally got onto the plane. The flight was only two hours so that wasn’t too bad, I could at least rest and just sit.
Upon landing we were another 15 minute walk away from the terminal so the same nightmare happened again however to add to the pleasure the moving walkways were not all working and it was a very long walk. The pain just got worse and out came the painkillers.
So this post is aimed at people who rush and push slow people out of their way, the ones that tut at people and the ones that don’t seem to have a moment to live, stop it! I have been one of those such people and I’m sorry for not seeing people in pain or disabled people, I’m sorry for tutting and being fed up with anyone who didn’t walk as fast as me or who couldn’t keep up. Sad but true that you never know when that slow person maybe you, so think on!

Mr Mullerat had said that I needed to start chemo withing 2-3 weeks on 20th April or as soon as possible. Kim the cancer nurse who had been in the appointment room with him had said that we would be contacted by Dr Weaver to start chemo and that she would call me, she didn’t call. One week later I called her and she said that she didn’t want to undermine Mr Mullerat but the waiting list was at least 2-3 weeks and to just be patient. The appointment finally came through for 22nd May, now that’s 4 weeks since seeing Mr Mullerat and that’s not the date that the chemo would start, we were told that it should start within 2-3 weeks of that appointment, so now that’s 6 – 7 weeks not the 2-3 that Mr Mullerat wanted.
I wasn’t happy! the fact that Harry was living on inside me in whatever form was a daily thought that I found so hard to cope with. Harry’s cells were in the lymph nodes which were attached to other vital organs, multiplying and looking for a new home in which to create new havoc! Steve as ever thought this was okay as we could go on our holiday which had been placed on hold until we knew when chemo was starting.
I remember the day Steve texted me to say he had great news that we could go on holiday because the chemo appointment was 22nd May. I was over the park walking Molly and he was really shocked at my response which was to him ‘off the scale’ but he didn’t get it, he didn’t have this thing growing inside him knowing that everyday without treatment was a risk and the words “25% chance of living 5 years” echoed. I was so angry and so was my mom, for once mom and I were together on this as we didn’t understand the wait and surely it was a risk. Mom did her usual “I’ll sell the house and pay for you to go private” now Steve had looked at the cost of chemo and one course of 6 months was a staggering £35,000 so that just wasn’t an option however I know my mom would have gladly paid it, bless her.
It wasn’t just the delay in the treatment for me but the not understanding of chemo, what drugs?, how long for? what were the side effects? and when would it start? I wanted to try and get my head around what was coming to mentally prepare myself but without the ‘meat on the bones’ as they say I only had guess work and info from the internet oh and of course other peoples experiences which ranged from “it was okay, just sickness and tired” to “awful”.
Steve tried to help by phoning Dr Weaver’s private secretary to see if we could see him privately to get some answers before we went on holiday. She did say that even if Dr Weaver could see us that it would make no difference in the start date of my treatment. I thought that between £50-£100 an hour would be an acceptable amount to pay for his time but was completely gobsmacked when I heard he wanted £240 for 40 minutes of his time, £240! I’m in the wrong job and so is everyone else. I couldn’t believe it. Steve and I debated whether we wanted to pay that amount and my conclusion was that on holiday I could buy a lot of ice cream for £240 and so we decided not to see Dr Weaver and line his pockets with gold.
I did phone Mr MUllerat’s secretary to tell her about my delay in treatment and did Mr Mullerat know? and was it okay for me to wait that long for treatment? She reported back that Mr Mullerat had no say in Dr Weaver’s schedule and that due to an Oncologist retiring in Wycombe there was unfortunately a waiting list longer than ideal (great) I could always write to the Head of the Department of Health and complain but what good would that do us hey!
So the waiting game continued for us and with the holiday finally booked we set off and then the pain started in my neck and then my lymph nodes started to swell 🙁

On 7th and 10th May, two weeks after the operation I had two days of visitors. On 7th Emma, Linda and Alison came to see me. Now this is massive for Linda as she never takes a day off so to come and visit me, to be out of the store for a few hours was a real show of affection from her. Anyone else and she would have said “put my name on the card or here’s some money towards a gift” and the words “I can’t go as I’ve got too much to do” would have definitely been included as it’s one of Linda’s phrases. Mom had been out before they arrived so that we could provide sandwiches and cakes 🙂 we all spent a few hours together at first in the garden, so Linda could have a fag (I was being good at the time and on a Ecig) but the weather wasn’t warm enough so inside we went.
It’s so funny having people in your home that you have worked with for years. Emma had helped me with my colour scheme in the front room. I had created a mood board thing and hours had been spent together trying to match the right shade of chocolate and creams in curtains.
I think they were impressed that I was doing so well. I was watching for their car to arrive for about 20 minutes before they actually did so I was in the street when they pulled up. It was just so lovely to see them, my BHS Kingston family, in my house, wow! After catching up with all the gossip they were gone too soon and I was soon asleep as everything tired me out but I was happier for seeing them and slept soundly.
On 10th I had a home visit from HR. Now to protect the innocent I have to give her a false name, so Ann came round and brought me a beautiful daisy plant for my garden. The weather was better that day and we sat outside. This meeting was important as I needed Ann to understand my need to be at Kingston. We agreed a return to work plan to involve my local store, High Wycombe and Kingston, but over an agreed time scale. Ann had her own troubles with health and I was honoured that she decided to share her story with me. She was to be my ‘point of contact’ at work from the senior management team and throughout my journey she has been amazing. I was dreading working out of my local store but again life surprised me as a met Mary, who is a lovely lady. She has had her own pain in life and at around 11 am when I’m in the store she makes me coffee and we have a chat about life and I wash up afterwards, thanks Mary for just being you.
Again I feel blessed to have so many wonderful people in my life to support me. I often think of the people going through cancer who maybe don’t have a garden to sit in, who don’t have a partner to look after them or the people who have financial worries to add to the shit that cancer brings. On that point a word of advice, if I had taken out critical life cover as part of my package at work, which would have cost me £100 a year, I would have received £90,000 upon diagnosis of cancer. Now money isn’t everything but £90,000 would have at least made me smile. I remember looking through the options on the form and thinking that I was too young for critical life cover, I’m healthy and maybe I’ll take it out next year, fool! So if you have such an option at work please take it out as cancer knows no colour, creed, gender, religion or the worst of all age. It strikes when it wants in whoever it wants. The word cancer scares the living day lights out of people, one in three of us will be effected by cancer and yet it’s a taboo word. If you don’t say the word then you won’t get it. The only thing we can all do is just hope that it doesn’t come knocking at our door or come calling for the people we love, cos if it does, trust me it’s a bitch!

On 14th April there was a regional store managers meeting which was being held in my local store which I wanted to go to as I just had to sit and even I could do that by now but HR said that they were worried about me getting up the stairs and that as I was still signed off sick by the hospital I couldn’t go, so I arranged to meet everyone who wanted to see me outside Nero’s for a coffee at 4.30.
Now my store is sadly 35 miles away from my house otherwise I would have been in to see what was going on everyday whilst off pre and post Harry coming out so I invited Emma to come and stay the night with us so that there was no rushing around the M25 for her in the morning. It was so lovely to see Emma and have her in our house, we have worked together for 4 years and at work they call us the Wemma effect LOL, we just make a great team. She has all the brains and I just bulldoze everyone into doing whatever mad plan we have come up with. Throughout life we all meet some wonderful people and we are blessed by them and they just stay with you, Emma and Nicky are two of those such people.
Emma left for the meeting and I was in the agreed meeting place at 4.30. Now I hadn’t seen my peer group for months and me being me and not wanting anyone to feel embarrassed decided to take the piss out of myself. My mate Steve prior to the meeting had advised that I should have my XFactor speech ready so when asked how I felt I had to reply “Scarred, sore and shitting through the eye of a needle” and so that was how it started. I made fun of myself and cancer and played the whole thing down. The managers must have thought I was mad and the usual shit that people come out with poured out of them not knowing the hurt they were causing, like “You are so positive” “If anyone can beat this you can” “Be properly selfish” “take care of yourself and forget about work” “Be strong” oh and the old classic “I’m sure you will be fine”
Now I don’t mean to be rude but I’ve got stage 3 cancer, a third of my bowel has been removed, I have cancerous lymph nodes left inside of me spreading all the time, I only have a 25% chance of living past 5 years, I have to endure months of chemo and you sit there with your life and your own little worries and I want to punch you! Why don’t they get it, why can’t they see that not living is worse, I don’t want to forget work, my life, my loved ones, I want to run naked in the sun and not have a care in the world, I want freedom from cancer I don’t want to be properly selfish and doss at home!!!!
I held my tongue and said nothing but listened to the well meaning phrases and we all then said our goodbyes. We return home for coffee before Emma has to go again from my world, back to a world I know and understand and the guilt of not being there to help her kills me.
I’m sat on the sofa in the kitchen and Emma gets it, she knows me, she can see the hurt their words have had on me, I can’t hold back the tears anymore and I cry, Emma cries and the sadness engulfs us.
Emma had to go home and when she left I had yet again not been strong enough, not strong enough for her, my kids, my mom, my hubby as I couldn’t control the emotion and that meant I had failed.
Why do we consider emotion such an embarrassment, I am not sure but I think for me if you let people see your true fears then they become real, you give them life and living in fear is not easy.
Steve returned home from work and asked how I was to which I replied “I’m fine” I’d been able to pull myself together for him anyway.

A word of warning!! well 3 words actually but it doesn’t matter as you will not listen to me, I wouldn’t listen and neither will you. My words of wisdom would be ‘beware the internet’!

Anyone who has been diagnosed with cancer in this ‘age of the internet’ will do what I did, which was search as much as you can for information. Another word of advice is only go onto trusted web sites (I use www.cancerresearchuk.com a lot) and don’t start looking for miracle cures as there are some wacky ideas out there. Steve Jobs (founder of Apple inc wasted years thinking that a macrobiotic diet would save him rather than drugs) he lost years of his life through this.

I remember when I was told it may be bowel cancer just before my colonoscopy. I waited until everyone was in bed and googled bowel cancer, I was horrified and quickly shut down the lid on my laptop. I couldn’t have bowel cancer, that shit was too scary to even think about. The next night I googled again and this went on most nights, alone and searching, firstly obsessed with signs and symptoms. These were quite reassuring as I didn’t have the classic symptoms, so there was still hope. As time went by I ventured onto the prognosis pages. Now these pages are dangerous.

Firstly at a high level, bowel cancer is a slow growing cancer and normally associated with more mature people, shall we say to be polite. There is a high of survival rate past 5 years if you are older, I think the age group given was 65+. However if you were younger, below 50 then the cancer is likely to be more aggressive and the survival rates drops to around 56%.

Now there were just 5 of us in ward 12 and 3 were more mature shall we say.  Karen and I were younger (I’m not giving Karen’s age away on here, that would be rude), So if you apply the statistics one of us won’t make it. Now that’s an awful thought. The other thing about statistics is that they don’t give you the whole picture. So of the 44% of the people diagnosed under 50 and died, how many died via other causes? The problem with numbers is that you can make them read how you want them too. With chemo, 40% of people don’t complete the full course of the treatment, I found that number shockingly high, but why do they not complete it? Is it too hard to go through? Is it that they are terminal and can’t see the point in spending whatever time they have left being ill and how many die through other causes whilst having treatment? See the numbers don’t tell the whole story.

You see statistics are not that simple as I am not just a number and neither is Karen who is on the same journey as me. If you apply the 56% rule, one of us might not make it and then who should that be? What if it’s neither of us and we both make it, happy days you think but that means that two other people under 50 that I don’t know won’t. That’s okay you say because we don’t know them but I can’t think like that. They would be no different to me or Karen in that they would probably have children, they would have friends and family that loved them and they would have suffered so much. It’s heartbreaking that anyone has to die through cancer or any other disease like cancer that completely takes over your life.

So the message is, do your research from trusted sites. You are not a statistic and you are better off waiting for actual concrete results from tests and then using the internet based on facts but you won’t listen as I didn’t. You will do it in private hiding your secret obsession from your loved ones. Pretending that you are oblivious to the statistics and the information you have read. The truth is that they have probably read what you have read but don’t want to scare you either. So you will all play the pretend game until you have formally been diagnosed. Then you cry, not at the words “you have cancer” but because you already know too much about what lies in store for you.

 

 

Monday 20th April Steve and I head for Mr Mullerat’s clinic. Under advice from my best mate Nicky I had not only listed the questions I wanted answering but it was also typed and even had spaces for me to write in the replies he gave us as we went through the results so that we didn’t forget anything.
We were back in the same waiting room as we had been a few months ago when Harry was still inside me, an odd feeling as Harry had gone and within the next hour we would know everything.
Mr Mullerat was surprisingly excited to tell me about the size of Harry, I think he liked that Harry had been a challenge for him. He said I was lucky that he could do the surgery via key hole, that there was a moment when they considered opening me up completely. He explained again about removing the stomach muscles and that seriously would hold back my recovery and cause me to be sore for longer, then we moved onto Harry.
We were told that Harry was an aggressive cancer, that I would have had him for no longer than 18 months, that I was at stage 3 cancer and that without chemo I would only have a 25% chance of living 5 years.
The chance of getting bowel cancer again was only 5%, but that he would be seeing me every six months for the next 5 years, that I would need chemo but I would have something called 5FU and you don’t loose your hair with that chemo. He wouldn’t answer what the chances were of me living past 5 years with chemo was as he said that the Oncologist would go through all that with me but he did say that I needed to start chemo as soon as possible, within 2/3 weeks.
The big bombshell for me was when he explained that 22 lymph nods were removed and half were cancerous and that he had to leave cancerous lymph nodes behind as they were supplying blood to vital organs. Harry was living in me still.

Steve wanted to take me on the previous cancelled holiday and Mr Mullerat gave his permission that this would be a fantastic idea prior to starting chemo, no stress holiday, no cruises but those were the only two rules and I was glad as I knew that Steve would throw himself into the mission of planning and organising it as soon as he could, it gives him a focus, a thing to do to make it all better and to bring some joy into our lives.

On the way home in the car I said to Steve that I couldn’t tell my poor mom the results but I knew I had to, no lies was the deal with everyone. We drove in silence, I looked out at the countryside and the green fields rolling by unable to say anything.
There is a local beauty spot on the way back from the hospital and Steve suddenly indicated left, I knew where we were going. Steve said that I wasn’t ready to go home yet and parked up. We got out and sat on the benches, Steve had his arms around me from behind, we were quiet not saying anything and the tears slowly rolled from my eyes. Not uncontrollable tears just tears gently falling, there was not a lot to say so we sat for a while, I cried and Steve didn’t cry.

I asked him why he didn’t cry as I didn’t understand and he said that it wouldn’t do if he broke down as well, that he had to be strong for me. This just made it worse for me as who was supporting my man?, who asked him if he was okay?, who sent him messages of love and support? who could he turn to? and the answer is that men have to endure the worse thing out of the sexes in that they have to be strong, they have to hold it together, they have to protect us but the loneliness of that burden haunted him and me as I couldn’t help him. I couldn’t make it go away for either of us.