The Chemo waiting game

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 :-(

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Wend

Married to Steve, I have two children - Rebecca and Richard. Steve has two children, Lauren and Chris. Rebecca lives with us (nurse Rebecca) and my mom Judy also has become nurse and housekeeper but lives in the West Midlands. My son is in the Army and comes home when he can. I am 47, born in 1967 and I was told I had bowel cancer on 22nd Feb 2015 and this blog is my journey through it. I hope it helps you as you were the reason I started it.

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