Radiotherapy, flu, attacks and a rant

Last Wednesday, I had my appointment at the Royal Marsden. I thought it was going to be a treatment planning appointment, so in spite of having a horrid flu, I took myself into the office in the morning. I was in no state to work, but thought that once I got there I’d be ok. I wasn’t but managed to get some things done.

My appointment was at 3:15pm, and coincidentally found myself traveling under Westminster right about the time the attack was happening overhead. I was oblivious at that point of course and instead consumed by attack on my body in the form of joint pain, muscle ache, nausea and sweats.

When I arrived at the hospital, there was a lot of confusion. When they telephoned me in advance with the appointment, they told me I didn’t need to arrive early because I was already registered. When I eventually received the letter confirming the appointment, it told me I needed to arrive early. I decided I should arrive early and I had tried to, but because I walked so unwell and walked so much more slowly than usual, I arrived only 15 minutes early rather than the recommended 30 minutes. Upon arriving at reception, they told me I didn’t need to register and then sent me downstairs to radiology. When I got to radiology, they told me I had to go back upstairs and register. So I went upstairs and registered and then had a little cry, but not about having cancer. I burst into tears because I felt so sick, exhausted, nauseous and I was in pain (joints).

Well, no one else knew that, so a man started to try and console me and told me everyone there has been in my situation and asked what I was there for. I told him I had breast cancer, but I was upset about feeling unwell. He wanted to know about my cancer anyway, so I told him. His situation was properly bad, but he at least seemed quite resolved, although I think he had wanted to talk about his which was fine and I was glad to do so. I was surprised he travelled there all the way from Cheam, when there is a hospital in Sutton, but who knows what they can do where and I didn’t ask about it. He was surprised I knew Cheam and we had a conversation about the history of Nonsuch Park.

All of this took place after I had filled out and returned a form and waited for the lady to come back out again.

I went downstairs and a doctor called me and took me to a consulting room. It turned out that the point of my being there was to have a BLOODY CONVERSATION AND SIGN A CONSENT FORM. Oh man!! Can’t they do the conversation bit over the phone and let you sign when you turn up? Surely someone at Kingston Hospital would have been qualified to do that? Even without being sick, it is something of a pain to get there. It would have been less irritating if they hadn’t repeated everything they already told me at Kingston Hospital and told me something new. Well, at least I learned how to find the hospital and the radiology department.

In the meantime, my friend had got in touch to see how I was doing. I told him I couldn’t cope with the idea of public transport and planned to take an Uber home. He deemed that would cost too much and started heading to South Ken. WHAT A HERO!

I was given an appointment to go back to the hospital the next day around midday for the treatment planning. As I dragged my feet back into the waiting room, the BBC was on the TV delivering unbelievable scenes of chaos. I had hard time taking it in as the volume was so low and I thought I was misunderstanding what had happened. As I reached for my phone to look at the news, it rang. It was Mark, the Director of our Study Abroad Programme, who was in Iowa trying to find out what was happening and if our students were safe. I told him it all happened while I was in the hospital and I had to sit and figure it out.

I had enough time to send out a text to all our students and then my phone rang again and it was my friend (thank God) telling me he was parked out on the street.  The traffic going out of town was pretty bad (as per usual), and before we could get to Putney Bridge I had located all our students. I think I might have been more alarmed and absorbed in the gravity of the day’s events were it not for my intense joint pain. We listened to the news and found about the murdered policeman and other victims as we edged away from London.

The next day I found myself back at the hospital for the treatment planning. They basically take images and mark you up. Literally. With a Sharpie. Well, maybe it wasn’t precisely a Sharpie, but it was some kind of blue marker that then assisted them to put a series of invisible tattoos on me. Yup. Invisible tattoos only visible under a UV torch. Pretty cool.

They did all that fast and then handed me my appointment times. I’ll go and have it around midday 20 times. So it’s Monday – Friday, so that will be a whole month. The whole breast gets treated for 3 weeks – so 15 hits – and then I get a boost to the tumour site for 5 additional days.

Zap, zap.

By the by, they told me that I would get scar tissue on my lung but not to worry as I would have never noticed unless they had told me, but they also said I could experience some shortness of breath.

Take bigger breaths?

Danm.

I know the rest of the world wants me to embrace the new religion of constant positive thinking and be an inspiration to others in my time of adversity, but I basically think all this sucks and I have never looked forward to anything less.

Actually, when I thought I would end up needing chemo, I looked forward to that less. (I definitely feel for people who suffer from all this in ways I don’t have to. I am not trying to compete with anyone.) I do feel like I have the right to say, “this sucks,” instead constantly marvelling at medical advancements. Of course I’m grateful we are where we’re at and breast cancer treatment is so successful these days, but I am also not going to burst out into song. What can I say? I’d rather be rowing.

Jump forward a week, and I have continued to struggle with the flu. Since last Wednesday I’ve had the worst case of fatigue I have ever felt, not to mention other unpleasantries. This has been on top of an ongoing gut problem since last October for which I went to see the GP yesterday, which wasn’t a particularly pleasant experience. Why do so many GPs hate the patients? I’ve understood their plight – it’s in the news a lot – but I feel I have a genuine complaint and I would rather not be treated like a nuisance.

What frustrated me was that she is running blood tests (helpful thing), but it seemed to be impossible to take the blood there and then, so I walked out with an appointment to go see a nurse right there at 11:50 the next day. There seems to be an assumption that no one works.

As it’s a struggle to see the same GP when you visit, I’m inclined to go to someone else for the results and see if they like me better. It’s hard to feel so lousy and then be treated so off-handed by the person who is supposed to help you.

I still haven’t had a decent explanation of why I should take Tamoxifen when the margin of benefit seems so low. On the basis of the NHS Predict Tool, the small margin meant chemo wasn’t worthwhile. However, the same small margin makes Tamoxifen worthwhile. It’s not like I want to go against medical advice, but I would like to understand it better. Whenever I question it, I get the same clipped response: “It’s your choice. You don’t have to take it.” Duh. My problem is that I feel like I am given the responsibility of the decision without adequate information. The information I have been given is frankly poor for making such a decision and when you ask questions you get treated like you’re stupid rather than as someone who would like to make an informed decision about their health. I find it insulting.

Rant over.

 

 

 

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