There are any number of places I could have picked up an infection that landed me in hosptal, but these are my top few theories, in order of likelihood:
- I had it already. I’ve spent the last 4ish months trying to get my surgeons to take me seriously when I said I had an infection in my face. There had been pus and blood sporadically jumping out through a hole that had appeared in my face. They gave me a short course of antibiotics which seemed to help while I was taking it, but as soon as I stopped it came back. Then I couldn’t get any more help from them. So I suspect my body has actually had an infection for months that was just there in the background that it was managing. Then of course when my body was no longer able to keep it in check itself post chemo, it took me over.
- I picked it up at my birthday celebration. We were careful, sure. But I knew there was a risk. If you’re neutropenic (no neutrophils to fight infection), you can pick an infection up from literally anything, anyone. But I knew that risk. I did not think I would be neutropenic that early in the first cycle, but I guess all that intense previous chemo took its toll on my poor little body. It usually takes a couple of cycles to start needing transfusions, supplements and ending up in hospital but it seems with everything my body has already endured, it’s happened a lot quicker for me.
There was never a question of whether I would have a little birthday celebration or not. It was my priority. If I was going to end up in hospital with an infection then I would.
- I picked it up being hauled down to my GP at my most at risk time of chemo effects.
So let me tell you about that. Basically, I’d worked out a medication regime with my people at UCLH, trialed it, found out what helped, tweaked it, then one of my nurses requested it all to be put on repeat at my local GP and for them to prescribe it. Perfect. I rely on this stuff for managing pain and I was swiftly running out and starting to worry a little that I still hadn’t heard anything.
While I was on my chemo week, I got a call from the receptionist of my GP saying that before I could be given any medication, the head of the practice is insisting I go in to the GP practice IN PERSON. Once we’ve met and discussed, then he will do the prescriptions. I tried to explain that I was on chemo and am high risk and shouldn’t come in. She said we could wait until I was feeling better and was comfortable about going. But I didn’t like that idea because it is scary to run out of pain meds. Especially when you’re facing being pretty ill after chemo. So I said fine, I’d just do it. Everyone would have masks, I would take sanitiser, whatever. I didn’t want to go, I didn’t feel up to it at all. But at least I would have my pain meds, and to be fair I was looking forward to getting outside for a little walk, so that was something.
So I walked to the GP. As soon as I went in the entrance, a woman walked past very close to me, talking on her phone and wearing no mask. I was sort of taken aback and panic-swerved to avoid her, trying to keep a bit further away. She immediately started shouting at me.
‘Why did you do that? Why did you move away from me?’ She bellowed.
‘You’ve got no mask on!’ I replied, exasperated.
‘I’m pregnant! I should be the one trying to get away from you!’ (please do)
‘I’m in chemotherapy!’
She wasn’t listening, I don’t think. She continued to walk in and out shouting at her phone and everyone. I felt a bit affronted. And fragile.
I sat in the waiting room for a while, another man came in without a mask. Thankfully everyone else was wearing them. Eventually I was called by the doctor.
I followed him in and sat down.
‘So tell me about your whole diagnosis from start to finish including timelines and any symptoms you have. I like to learn about cancer.’
‘Off you go… Tell me everything.’
Just like that. Just on the day when you’re feeling super ill, recovering from a week of chemo, just go through and recount your full medical history and trauma from start to finish for this guy’s enjoyment.
You all know I am happy to talk about it, I spend half my time doing it here. But it’s on my terms in my own way, and when I’m ready and prepared for it. Rehashing all my trauma for the entertainment of the local GP feels like a huge thing to ask for. I’m also feeling really unwell… This is the last thing I want to be doing right now.
But I started recounting it all. He asked me what the symptoms I have – do I have nausea? Pain? Tiredness? Etc. Because he likes to learn, you see (surely Google could do this). I said well yes, `i’ve all of them, I’ve just had chemo. But they’re not all symptoms of cancer…
I went through trying to explain all the surgeries I’d had (which he could have read on my file). Then I got up to the part about it coming back, and I started crying. Because I just really didn’t want to spend the day talking about how it’s probably going to kill me and that it might be soon. He pushed me to tell him how it’s likely inoperable (he literally has access to all of this in his notes) and I just don’t want to spend my time thinking about that, I don’t want to dwell on it more than I need to, and it’s a door I will open when I’m in the right headspace and can do it safely.
‘Sorry, why am I having to do this? You should have all this on your notes, it’s all on my file. Do I really have to rehash it all today?’
‘I like to hear it from you. I’m sorry you’re getting too upset, we can stop. It’s just interesting to learn about cancer.’
‘I’m not upset,’ I said quickly. Because women are always blamed for being upset, too emotional, and I can’t switch off the need to rail against being dismissed as incompetent because of emotions. So I push through when really what I should say is ‘this is actually really inappropriate, I can’t see the relevance and I am really so unwell right now.’
He then says ‘so you’ve been signposted to Macmillan?’
Signposted? I look at him blankly and ask what that means.
He went on to tell me that there is a charity called Macmillan Cancer and I can google them online to read about cancer and treatment. They might be able to help me to understand my diagnosis.
I was baffled. 4 years on in cancer land, I’m not sure ‘googling my cancer’ is really the route that appeals to me. I told him of course I know Macmillan, as my notes will say, I get treated at the Macmillan Cancer Centre. But I mainly get information about my cancer from the Oncologists and Surgeons who have been treating me. For over 4 years.
Then he printed me out a few sheets of paper that were like ‘so you’ve been diagnosed with cancer’. Just some random rubbish about ‘you might have radiotherapy or chemotherapy’ etc. Like basic useless cancer 101.
I try to give it back to him because surely it’s some huge joke I just don’t understand yet. ‘I obviously don’t need a welcome package.’
He won’t take it back, instead, telling me that I’ll find it helpful when I start to get into treatment and feel overwhelmed.
What, 4 years ago?
Then he said OK, well that’s all, you can go now.
I just stared. I was in shock.
‘I… need my pain meds.’ I spluttered..
‘I was told I couldn’t get my pain meds until I see you and… I don’t even know what this was, but I need my meds.’
‘I don’t know of any meds.’
‘Hang on,’ I’m getting upset. ‘You can’t hold them over me to force me to come to this then not even give me my meds, I need them!’
‘Well I don’t know what they are, I don’t know what to prescribe.’
‘Look in your system! I know they’re in there! your receptionist told me I would only get them if I endure this.’
‘If you tell me what they are, I can prescribe them but we don’t have any request.’
I pulled up my UCLH app to see what had been requested. He was looking at letters back in April. I said no, this is recent. It’s the whole reason I’m here. But he seemed to have no idea. I guess he just had his own agenda; to ‘learn’ about cancer and build a profile and to feel like he’s helped by handing me over some factsheets. This was ridiculous.
I find the details of my meds and read it out to him.
Then he looks in the system and says ‘oh yeah they’re just here. Under medication. Ok, I’ll put them on repeat prescription for you’. And he did.
I left, so confused.
I went via the chemist and got them.
I thought it was fair that he wanted me to go in, maybe to assess the patient first (me) and make sure he’s prescribing the most helpful and useful meds. That I’m getting the best support tailored for me. But instead, he wanted me to teach him about osteosarcoma, and patronise me with a generic cancer booklet. The two seemed such extremes. Require me to be an expert, then tell me I don’t know anything.
I told him mate, I write the booklet. I’m an expert in writing about Osteosarcoma.
He even gave me a lecture on how the pandemic has taught us about uncertainty and we need to try and make the most of every day. Then, he went on to tell me that his father in law died of bowel cancer and that he cared for him, so he gets it. And I found myself saying I’m so sorry, bowel can be so harsh, blah blah.
Me, with everything I’m going through, in an appointment that’s meant to be about me, having to support the doctor because he thought it was appropriate to make it about him and his father in law’s experience of cancer. I’m sorry to hear it, but today is not for me to be thinking about your father in law. I need some pain meds.
In fact, friends I know who have/have had cancer and work as doctors always tell me that they set boundaries in that they’ll never tell a patient going through cancer that they had it. Because this is the patient’s story, their experience, and as soon you as say ‘I had it too’, or ‘my father in law died of bowel cancer so I get it’, it minimises their experience, quickly taking the focus away from the person who has just been diagnosed. And that is not the health care professional’s role. We know all about the power of connection but this is the moment of the patient, looking for direction, not wondering whether they should be comforting their doctor…
So I went home and cried. Then, as the story goes, I rushed off for a lovely 15 hours in A&E…
I actually quite like chatting with doctors about Osteosarcoma. A GP might only see it once in their life and if I can give them a bit of information about what they could look for, that’s great. I’ve done it before and it’s usually a delightful conversation ‘do you mind me asking how it first presented? Just so I can know what to look out for?’ I am always more than happy to oblige. It’s a quick, efficient conversation.
Actually, one of my doctors in A&E asked, and it was a delight. We were chatting, and he said ‘if you don’t mind me asking, what symptoms did you have before you were diagnosed?’ I want him to know, in case it helps anyone else. So I told him ‘hard lump, nothing else’. And he said ‘thanks, that’s really helpful. I’ve actually had some childhood cancer in my family and I know how hard it can be to get diagnosed, so I try to keep as across it as possible. He didn’t tell me more, didn’t tell me whether they were alive or dead, didn’t try to play on my emotion, explain what role he played in their cancer, none of that. There was interest, a question, a connection, no emotion, and we moved on. Job done.