Regional Meeting

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.

Statistics – Beware the internet!

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.

 

 

Harry has gone but he lives on

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.

Stuck in the middle

So Harry had been sent off for tests whilst I was recovering at home. We all knew that these results would be important in terms of the next steps. Mr Mullerat had told us that Harry had broken through the bowel wall and started to eat away at my tummy so we knew we were at least looking at stage 2 or stage 3 cancer and these results would shape the next steps of the treatment. Would I need chemo? would I loose my hair? how long would chemo last? The endless questions going around and round and round in my head. I was sleeping at least twice a day still getting over the operation, I could walk and stand a little easier but I wasn’t anywhere close to being normal. I was going to mention poo at this point but I think poo needs a whole blog just to itself later on so I’ll just say that trips to the loo was followed by discomfort and burning like I had never experienced, making you feel very childlike and very sore, oh my poor bum!
On Saturday 11th April a letter came through the door from Mr Mullerat to say that he wanted to see me in clinic on 10th May. My mom went into a complete outrage, it was disgusting she thought, just not good enough for her daughter, I shouldn’t have to wait that long for the results, I should be a priority. She said not for the first time that I should go private, that she would sell her house to fund it and it would all be okay if enough money was thrown at it, oh bless her for wanting this to be true. Steve on the other hand was elated that we were being kept waiting as that meant that it was all okay, nothing was wrong, no stress or panic cos if there was something serious going on they would have called me in sooner, denial again Steve I think.
The problem was that it was a Saturday and so for the weekend I was stuck in the middle of my furious mom and my happy hubby. We all decided that I would call on the Monday to find out what was going on and why I had to wait so long for my results, it was a long weekend.
Monday morning came round so at about 10.30 I dialed the secretaries number, straight to answer machine as she was on annual leave until tomorrow so there was nothing I could do until the next day, stuck in the middle of two opposing views and trying to stay calm.
On Tuesday I dialed the number again and got through :-) Mr Mullerat’s secretary was lovely and completely understood my call “let me just get your file” she said and after a pause of her reading she said that yes Mr Mullerat did want to see me sooner and was I available to come into clinic on Monday? Yes I replied, of course.
Now any woman loves the ‘I told you so moment’ and if you say you don’t you are lying but I couldn’t do that to Steve his face said it all, I knew as he did that what he had been saying about them seeing you earlier if it was urgent was true and him lying to himself for 3 days and trying to calm the whole thing down had just slapped him in the face like a big wet smelly fish and he had no words left. Mom went quite too, not that she wanted the ‘I told you so’ moment either but like Steve and I we had all been hit in the face with a big wet smelly fish and another waiting game unfolded of ‘what if’s’ until the appointment date came round of Monday 20th April when we would find out about Harry.

Oh no! Poor Karen

5th April, one week and 5 days post op. I hadn’t really been out of the house since the operation on 24th March. Steve needed some more local photo’s for leaflets to be used for the forthcoming election. We went to a local park with Molly of course. It was warm and partly sunny, perfect for picture taking. Molly was happy, well she is always happy when she has a ball to run after, I don’t think she cares about the surroundings, it’s all about the ball.

I can walk very slowly, if I don’t carry anything and I was enjoying the fresh air. My mobile rang, it was Pat, Karen’s mom. I could sense something was wrong.

I had briefly got to know Pat whilst we were in ward 12. She was a lovely lady who was in her 70’s (I think) she lives in Devon but had come up to be with her daughter, mom’s hey! Bless them all.

Even though I had gone home from hospital on Saturday 28th March, I had returned the next day with biscuits and thank you cards for everyone on the ward. Karen was still in hospital but told me that she was being let out soon. I was pleased, she had lost the hot water bottled shaped green sick bag and was up and about. Her family were all there, hubby, son and Pat. We chatted for a short while but I had to get home and rest as just going to M&S and to the hospital was a major thing. I said goodbye to the other ladies on ward 12 which I had spent the previous week with. I went to say goodbye to Karen, she stood up to hug me from her bed and that was it, I just cried in her arms and she in mine. Those few short days had been tough on both of us, we had shared the same pain and forged a bond through the experience that would never, for me be forgotten. Would we ever see each other again and would we survive whatever lay ahead? Those around us I think were a little shocked at us hugging and crying, I could see Pat was also upset and I saw her tears when I hugged her to say goodbye too. We had already exchanged numbers the day before and said we would keep in touch, I hoped that we would.

Pat told me that Karen had been very ill, they had to call 999 the previous night and she was back in hospital. The bowel had become infected and formed pockets of abcesses on her bowel. She was on drip form antibiotics and that whilst Karen was okay, Pat had been very scared by it all. I was horrified that Karen was ill again, that after all she had been through in hospital and she was still suffering. Poor Karen, and I just hoped that she would be okay.  Apparently it’s days 2-5 days that are the most critical after bowel surgery. Karen had got through the those critical days and almost two weeks later was back in hospital.

When Karen returned home she called me and we talked through what she had been through. They couldn’t even move her in the ambulance without giving her morphine first for the pain. At the hospital she had to cry and beg them not to operate on her again as they were considering giving her a bag. Thankfully they didn’t operate and she was going to now be okay surely! She had definitely suffered through this and maybe she had just been unlucky. That had to be it for her now in terms of pain, her body had been through so much, I worried how much more she could take.

Weeks later she found out at her post op appointment with her surgeon that they had removed 61 lymph nodes and 5 were cancerous. She was facing chemo over a 6 month period.