Hello, welcome back to my blog this week and I hope you have had a good week. My week hasn’t been that fun with a week full of appointments revealing many shocks. So, let me talk you through my week and I hope I can help many understand and inspire others.
Starting with Monday, I didn’t have an appointment luckily. So what did I do? I met up with someone that I love and care about. Obviously outside and abiding by our local lock down restrictions. It was a lovely time, from 2 until 5 we just chatted, I loved it.
Right. So the good stuff now. Tuesday was my first appointment in the week. An MRI scan lasting for over an hour. I don’t usually find these uncomfortable but this week I did, the top of the head hole was pushing into my head. Having this gor over an hour was not very pleasant and I did try and move but you need to stay still so unfortunately, I just layed in pain for over an hour.
Wednesday, or as I like to call it, one of the worst days of my life. So, what happened? I went out for breakfast in the morning with my family, I really enjoyed it, that isn’t bad, that’s probably the best day of my life if it stayed like that but it didn’t. So after breakfast I had an appointment at the hospital, a very long appointment. I got my radiotherapy mask fitted; it actually felt quite soothing, I’ve heard it is like what a facial feels like. And then after it’s set after 10 minutes I had a CT scan, planning where the radiation will go. These went pretty fast. But then the wait happened, the wait for the doctor. I was panicking and worrying, I hate the wait for doctors and then we finally went in. We spoke to the radiotherapy specialist nurse and then waited for the consultant. It felt like forever. She came in after around 15 minutes after a long phone call with my other consultant. It was the first time I’ve seen her. So why was this one of the worst days of my life? She explained that many of the top specialists still don’t know what the tumour is and why my scan had taken so long. They did 3 scans in one: radiotherapy planning, a normal MRI and a Spectroscopy scan. So now it comes, I remember it clearly. Her next words after explaining that their had been a haze on my brainstem. I wake up most days now thinking of the words. She said “And… Unfortunately, the cancer has spread into the brainstem”. As she explained the treatment: radiotherapy and chemotherapy. I couldn’t really concentrate. They can’t get rid of it, just attempt to manage and control it. I signed the radiotherapy papers and now know my life is limited.
Right, Thursday. I awoke remembering those words from the day before. I wallowed for a while and then got out of bed. I thought I had a physio appointment. I didn’t but I did get to talk to the physio on the phone. I explained that my muscles were tight and she explained its natural after a big operation and just continue with my stretches. So that was that appointment, the rest of the day, I went on a few walks and my twin baked a lovely afternoon tea.
Next, Friday. Yes, I had an appointment. The Occupational Therapist (OT) visited. It was just like a counselling session and I did feel better after it. I just tell myself I need to accept what’s happening because there’s nothing else I can do.
So moving onto the weekend, on Saturday I went for a walk around a reservoir. My fitness is totally shot, needing to take 2 breaks in 3km just walking. I’m not happy with that at all. And then we got an ice cream and at home got pizzas, what a day! Finally, today I’m meeting with a friend, abiding by lock down rules, and hopefully I enjoy myself like last week.
So next week I have things planned, meeting up with the person I did on Monday again. Seriously, she must be sick of me by now and Friday I have an appointment. This appointment does not sound good being told it is “the bigger picture”. All I don’t want is a time period, no numbers. Also we will discuss tablet chemotherapy and how to live with cancer.
One last thing before I go, the hardest thing about all of this is the constant reminders that you’ve got cancer. Waking up and feeling normal and then remembering you have cancer is awful. Hopefully it may help when the tinnitus in my left ear from the surgery gets sorted out.
Thank you so much for reading this week’s blog post. I’m very sorry if I have upset or brought back memories to anyone. I wish this blog post was more positive. I am trying to remain that way but I keep getting bad news now. Anyway, I hope you all have a good week and keep remembering to live life to the fullest.