September 27th - October 3rd

On the 27th we had our first visit to Christies at Salford Royal - a place I was to get to know very well. This was for my CT scan with contrast dye and my mask making. When you have radiotherapy on your head they want you to stay really still so that you don’t end up with areas of the brain that don’t need the radiotherapy getting got. I had been warned that this was one of the more unpleasant parts of the treatment and they again, asked me if I was claustrophobic. I have worked out that if I don’t like small spaces then there is another reason behind this i.e. tunnels - they might collapse, lifts - they might tumble to the bottom of the lift shaft if the cable snaps and so couldn’t think that I would be overly bothered by the mask. Before we went through to them, the staff at the front desk gave me a questionnaire to complete. I asked her if I could have my start date moved forwards a week as it had been mentioned that I might start the week of either the 10th or the 17th of October. I was hoping for the 10th as I knew I was having 6 1/2 weeks of treatment and wanted to be finished by my birthday.  She told me that this had been okayed by the radiotherapy planning team and that I had been put in with a start date of the 10th for 33 sessions. After completing the questionnaire, a member of the radiotherapy team came to get us both and took me through to have a canular put in for the dye prior to the CT scan as well as asking me a heap more questions. That done, we were taken through to the CT room where they were also making my mask. The mask is initially a large sheet of slightly perforated plastic with a small hole that is located over the tip of your nose. It is placed in a warm water bath to soften it before being put, whilst still damp over your face. I had been advised to hum as if I was doing this then I knew I was still breathing - until they expanded the hole over my nose and mouth. I had asked if Lel could hold my hand as I was a little nervous even though they were so nice. They were fine with this but said that the plastic cooled fast so they would be moving around my head area to get it stretched and clipped onto the bed to hold me in place for them to work with. I continued to tell ridiculous jokes as I had throughout the whole process with both technicians joining in and jokes being bandied back and forth.

I lay on the bed, they raised this to a height they wanted and Lel sat on the chair in the room, then they were bringing the mask over, warning me that it was  wet still and warm. I hummed as advised, I was glad of that as the small hole was only around 1cm circular and it did feel as though I couldn’t breath. They very quickly expanded the hole over my nose and a small area of my mouth to allow me to breath then smoothed it off with bits of tissue to get it into all of the areas of my face. They then spent a good 30 minutes making dots on the mask and marks where they wanted to align the machine when I went for treatment. They then left the room and started the CT scan. This was the first time that I had had my mask on and it was snug but not uncomfortable. There was music playing and I just relaxed where I was, listening to the machine move around me. They came back in about 5 minutes later and put the dye through my canular then continued with the scan. After another 10 minutes or so, they came and released the mask, directing Lel and I back to the waiting room for 20 minutes before they would take the canular out. When it had been removed, I was allowed to go. On the way out I collected my schedule for the treatment with it beginning 10 days from then on the 10th. On the way in I had requested early treatments thinking that this would allow Lel to get to work easier afterwards so that I didn’t have to rely on lifts constantly - either from mum and dad or friends.  The receptionist booked me in for 9:20 daily although the schedule did state that this may change on a daily basis so to confirm the next day’s time at time of check in.    

On the 29th we went to the main Christies for an MRI scan with contrast dye. We waited for a while before a nurse came through to get us. Again, she asked me a load of questions before sticking a needle in my wrist and attaching a canular.  A long lead was put on it this time so they could insert they dye whilst leaving me in the machine. Having got so used to the MRI machine at Salford Royal it didn’t phase me at all. I was told by a girl in the waiting room that it had fancy lights and mood lighting in the room and was ‘a bit bigger’ so was nice. I asked for the usual mask and earphones. I addition to this they gave me a pair of ear defenders with music through which was an added bonus. I could cope with this! I had my eyes shut, the room was dark and I had no idea where the machine was above my head. Lel was holding my hand, it was fine! The operators told me that I would be looking at a couple of short but loud scans to start with followed by the dye being injected and a longer scan (approx 20 minutes) she said, ‘in worse case scenario’. (I’m still confused by what she meant - worse case scenario of a huge tumour or of the person moving around?) This passed really quickly with Lel holding my hand and we were soon released back to the waiting room to wait a further 20 minutes for my canular removing. Once back in there, we saw a family who we had seen at Christies at Salford earlier in the week. The older lady requiring treatment had also had a brain tumour removed however hers was much more aggressive and appeared to have been missed by the doctors, unlike mine that had been dealt with and removed as soon as it had been located rather than ‘watch and wait’ which seemed to have been her initial treatment plan. They both commented how young, fit and healthy I looked - always nice to hear!  I waited for around half an hour before asking a nurse if they could remove my canular as it had waited over my 20 minutes as requested. We left the area and went back to find mum and dad who were in the cafe waiting for us. As we drove back home, I told Lel that I found Salford Royal much easier - it had become a kind of home from home and safe place to me, where as main Christies seemed a much scarier place - everyone was there for the one reason - they all had cancer, where as Salford Royal, people were there for many reasons. 

On the Sunday we went over to Coniston Hotel and Spa for the stay that I had booked whilst waiting for surgery. On arrival we saw Louise and Rachel who we have known for years, mum and dad had paid for a room upgrade for us which was lovely and there was the horse trials on so after a bite of lunch, Lel and I went to our room and watched the riding from the balcony. We headed over to the spa where I had a marvellous relax and felt ‘normal’ for the first time in ages, 3.5hrs chilling in the sauna and pool did wonders for me, although I did keep a headscarf on throughout so no-one could see my scar. We watched the end of the horse trials from the infinity whirlpool which was amazing. Lovely and warm from the shoulders down and fresh chilly air on our heads, we then sat on the outside loungers wrapped in towels to stay warm before going back inside and back to our room where we had a shower. The showers in the hotel are immense and the biggest showers I have ever known in hotels. You could comfortably shower 3 people at a time! Dinner was great, there was a vegan menu with 3 choices of starter, main and dessert and we sat near the fire and relaxed. We had an early-ish night and slept in until around 8.30 on the Monday morning (I never sleep past 7 so this was amazing!) before heading down to breakfast. We knew we had to be away relatively early as we had an appointment at 2.15 at Christies with Dr T therefore after breakfast we packed, had a short walk to the lake then met mum and dad who had had the dogs overnight before setting off back to Manchester. Just prior to setting off, we booked another stay on the night of the 25th of November when my radiotherapy would be over as a treat for this, and for my birthday. Rachel, bless her, booked us into on a special offer meaning that we were in one of the suites for the cost of the discounted room that we had paid for on the offer when we had booked for this trip - a saving of £60 off the full price of it.

We dropped the dogs at home on the way past and headed over to hospital in plenty of time, arriving at the clinic by 2. Dr T arrived at 2.20 and called us through around 2.45 to discuss the radiotherapy and get me to sign a consent form for it. The usual side effects - possibility of epilepsy, death, missing body parts etc!  Before we left, a macmillan nurse came to speak with us, I guess she thought that we would be having treatment at Christies and asked me to complete a questionnaire which would giver her an indication as to my state of mind. Sadly after this chat with Dr T, even after the amazing night away that we had just had we were both feeling pretty low. Lel was upset as the nurse led us round to a quiet area where we could have a chat. From feeling on top of the world whilst sat in a sauna looking over the Yorkshire dales, it is amazing how easy it is to plummet when talking to ones oncologist!! Well I had been pretty happy before this session but this had got to both of us, especially when Dr T told me again that the tumour can never go away, all they are trying to do is to stop it growing for a while and the radiotherapy and chemotherapy would hopefully do this…  The nurse told me that by the end of the treatment I would struggle to get out of bed to shower, that I would be having headaches and would need to be on steroids, would have swelling in my brain as well as having issues with my skin on my scalp. She knew just how to make me feel positive however, when she realised that Alison was going to be my key worker she just left me with the questionnaire. This was all about what was making me feel stressed or upset and to rate how often I had felt worried since diagnosis regarding various things - one of which being death! They really knew how to make you feel better. I finished it and said to Lel ‘if I had been feeling good, doing that would have dropped my mood in any case’. No where in it was anything asking what had made you feel good recently or how positive you were feeling about different things. It really annoyed me and reminded me of a recent TV programme where a perfectly healthy Dr completed the ‘am I depressed?’ questionnaire on the NHS website and was told that he had depression and needed to see his Dr! It really was not NHS / Macmillan at their finest moment..

We finally left and came back home with the knowledge that I was starting radiotherapy the following Monday and as Alison had said when we last saw her, we had to make this our new normal.