At this point my throat was starting to recover from the tonsillectomy, I was dropping back down to paracetamol for analgesia and taking liquid ibuprofen to reduce the oedema in my hands. The latter of these was in part a revelation following on from the tonsillectomy, the slow-release ibuprofen I was given for the operation had reduced my joint swelling. Although there was a risk it could make reflux worse, so long as I continued with my Omeparazol then this was manageable. I really appreciated the relief this gave, making it easier to face the cancer. Let’s be honest, trying to diagnose and live with two life-affecting illnesses seems more than unfair to me, so managing one to fight the other seemed a little more reasonable.
I was back working again, albeit from home, which provided structure and much needed distraction to my days. Being 2021, the Government had announced that grades would be determined by teachers this year. Knowing I was unlikely to be able to support that I wanted to make sure all other paperwork for the rest of t he year was in order before finishing. Now that I knew my diagnosis I wanted to be open with everyone. I wanted to tell my classes, particularly my tutor group as some had lost relatives, and I didn’t want them finding out on the rumour mill. I was advised against this. I told my team to be honest if anyone asked. I regret not having fought my corner as little more on this. Students did find out in dribs and drabs, and not from me. I had a couple of upsetting phone calls with parents who told me they already knew. I have known some of them for ten years and was left angry, frustrated and upset that colleagues had told my students without letting me know, so they were finding out piecemeal. Having been a child who had experienced trauma, I know the importance of managing this properly, so I did my best to reign things back in. Once my treatment date was confirmed I recorded a video message to be played to all my classes. I just remain hopeful that my colleagues actually did this.
In between the work I attended various appointments in preparation for my treatment. Some days it felt like a barrage of phone calls and letters were coming in with dates and things I needed to sort out.
One week after the big clinic meeting, I was back to Wolverhampton. This was my first visit to the cancer ward. Today I was getting fitted for my radiotherapy mask and having my planning CT Scan. I decided to drive myself to the hospital today, my husband couldn’t come in and it was just scans and planning. I was feeling pretty upbeat. To be perfectly honest the whole day felt a little surreal, I was there and going through this, but it didn’t have any sense of gravity given the seriousness of the illness I had.
First stop was the mask fitting room. I had been shown an example and looked at the Macmillan information on the masks. The two technicians were lovely, explaining the whole process to me, how the material would feel warm and then cool, how the bed was set up to simulate the one in radiotherapy and that we were moulding a head rest and my mask. We chatted away all the way through, mainly about family, the shit shows of cancer and Covid, how their daughter’s hated having to go into school so they could come to work when their friend’s mum’s didn’t, and how teachers weren’t lazy but doing our bit. I asked them to tell their children how grateful this lady was today for letting their mums come to work so that they could help her get better. I meant every single word. There are so many NHS staff who form your care team, every single one of them vital to your recovery. Throughout they have all been supportive, compassionate and wonderful. We really couldn’t face cancer without this support. The example mask I had seen were white, but this was green. Looking at the piece before it was put in the warm water bath I couldn’t visualize how it was big enough and how it was going to mould to me. I changed into a gown, I was starting to get to grips with how all those ties work now I hopped on the bed and the mask fitted started. About 10-15 minutes later, lots of pushing down and cold sponges to speed the setting and the job was done. We have the habit of anthropomorphizing at home, it started with cars and has gone on to include the range cooker and fridge. Don’t ask me why, it just happens. So, in this moment Ronnie my radiotherapy mask was born. This is where my Macmillan forum name came from – the mask, which in itself was an adaptation of my mum’s middle name – Veronica. She isn’t here but I needed to have her with me through this fight and one way was to adopt part of her name. Thanks to the oedema and constant hand washing to avoid Covid I had to stop wearing her engagement ring, so Ronnie was born.
Once Ronnie had set I was dispatched to the CT Scan suite, another change into a gown and into a very cold room. This scanner was a simulator of the Linac machines that would be used for radiotherapy. The purpose of this scan was to identify location of my tumours and would be used to plan my radiotherapy treatment. To do this accurately I had to wear my mask for the first time. The team also needed to give me two tattoo markers that would be used to make sure the Linac was lined up correctly for each treatment. Accuracy is essential in delivering this treatment, and given the location on your body you want to make sure the right areas are hit to kill it off, and importantly the wrong areas aren’t so that side effects are limited only to those that cannot be avoided. I now have two miniscule dots tattooed as permanent reminders of this, the one on my check is like a blue/black freckle, the one on my stomach is barely visible. About 20 minutes later the scan was completed and I was getting changed ready to come home. I would need to wait 2-3 weeks now whilst the planning was completed before my treatment could start.
Calculating from this date I had been hopeful to have my first chemo session on 15 February, however the week before I got a call to say the planning hadn’t been completed, could I therefore come for my Covid and blood tests the following week. This turned out to be beneficial. 5 Feb I had to go back to the hospital for a Covid test ahead of my PEG operation.
On the morning on 10 February it had snowed. We needed to leave early to get to New Cross for my day surgery to have my PEG fitted. I decided as this was possibly the last day I would be able to do this I would go and clear the snow from the drive and car. The dog came out with me and was merrily jumping about, we don’t have a gate but it was silent all around and she wasn’t straying. Next thing, she had run off out of the drive. I ran after her to find her jumping all over Bailey, an old golden retriever she had met on walks with my husband, she must have picked up his scent as he walked along the path by our house. I dragged her back with my husband questioning the sense behind my actions. I feel awful that we haven’t seen Bailey since and I hope beyond hope Pip pouncing all over the old boy in the snow didn’t bring about his demise.
We got to the hospital and the procedure was explained to me. I was told I would feel some tightness / discomfort in my throat but that the whole procedure wouldn’t take long. I had expected to wear a gown, but literally lifted my shirt up on the bed and laid there. Thankfully the anaesthetic kicked in not long after the endoscopy began, so I remember nothing beyond the feeling of trying to swallow something big. I came round after it all. When the doctor came to check on me and talk me through how to look after the site and longer term flushing, advancing and rotating. Someone would be coming out to take me through some of this again in two weeks. They then asked me to sit up, I couldn’t. It took me a couple of minutes to explain that I literally couldn’t pull myself up. They came and checked everything was fitted properly and that it wasn’t too tight, then had to help me sit up in the end. I was allowed to go home.
Upon returning home I realized I could no longer get up and down from our sofa, we wheeled the office chair into the longer for me so I had something comfortable to sit on. Still struggling by the weekend my husband took to Facebook Marketplace on Saturday and found a high backed armchair. He went across town and collected it. I now looked like a proper grandma with my side table of tissues, drinks and medicines and high backed chair – only 47 at the time mind!! On the Sunday morning I was in agony, I was scared I was developing peritonitis, I looked grey and it was a struggle to move. I slipped on a lounging outfit and cardigan and we went off to A&E after a frustrating call to 111. My husband said he has never seen me look so ill as I did that day. They sampled some of my stomach juices from the tube and gave me some codeine. In a short while panic was over, the pain was subsiding and we set off back home. I hated my PEG at this point, it hurt, looked unnatural and I didn’t want my husband to see it. I was grateful I had another week to get myself ready to start chemo-radiation.
Friday 19 Feb I headed back to Wolverhampton. This time we went to the Deansley ward. I had blood, Covid and MRSA tests to check I was safe to start my chemo on the Monday. We also had a clinic meeting with one of the senior radiotherapists. She took us in detail through the likely side effects of treatment week by week and the medication routine that had to be followed, why and when each aspect had to be taken. This was beneficial as there had been so much to take in the first time we had gone through this with the specialist nurse a timely reminder was great. One of the best bits of advice she gave that day followed an explanation of how the different options for pain relief escalate, not to be put off by the idea of taking morphine and to stick to taking medication like clockwork – manage the pain, it makes the experience so much more manageable. I would remember back to this at various stages when I felt I needed to take the next step up. She showed us the scan of my head and talked through where the radiotherapy would be targeting. Again, this was so useful, it helped to explain some of the coughing as the tops of my lungs were being hit and much of the sinus problems I was going to endure. The only thing that we stop my treatment on Monday would be the results of my earlier tests. We set of home and I enjoyed take-away pizza for tea, not knowing when I would next be able to eat it.
