Earlier today I was was thinking that I really need to update my blog, but I really didn't have that much to say - a lot of having cancer is sitting around waiting for someone in a hospital to tell you what some anonymous other people have decided is going to happen to you. And for someone like me, who had been pretty much in charge of every aspect of their life, that is an enormously difficult thing to handle. So instead of updating you with actual facts, you'll have to make do with a more cerebral outpouring.
This week I feel like I have been sat in the fetid juice at the bottom of a crusty wheelie bin.
Yep, that pretty much sums it up.
After the horrifically handled gynae appointment ten days ago, where my second cancer diagnosis was confirmed (see episode 20), I'm still no further forward in knowing anything more about my stage or grade of cancer, whether or not it has spread beyond my cervix, what that means if it has, what my treatment plan might look like or, frankly, whether I'll see next Christmas. I honestly don't know.
I went along for my CT scan as instructed, (it was fine, I didn't get stuck in the big donut machine, I managed to hold my breath and contain the combined drug side effects of flatulence & diarrhoea for the required period without sharting, big win) but the radiographers were tight lipped and unreadable.
Waiting and waiting
It's now been 7 days since then and no one from the gynae team has been in touch to let me know what's happening. Not even a phone call to see how I'm doing and give me a rough idea when I might hear. Unless you've been there you can't imagine the mental burden of not knowing a cancer diagnosis - of being left in limbo, week after week, waiting for the next test result, the next treatment plan, the next decision to be made about you, by people you have never met. It's the absolute worst mental burden to carry.
Once you are diagnosed and you have a treatment plan, your life starts again. It's a damned horrible life, but you can engage with it, understand it, plan for it and move forward with it. Before that, you're left in the most awful limbo. It's like being convicted of a murder and having to wait weeks to hear if you're been given the death penalty. Only you did nothing wrong.
Of course I know that the the medics aren't sitting there waiting for me to walk in, with empty diaries and time on their hands. I am a huge supporter of the NHS, but there is something not quite right about the way that cancer patients are treated. Throughout all of my cancer experience to date, there has been this feeling that my cancer is what is being treated, not me. My cancer is owned and managed by the medical teams, and I am just the poor unfortunate vessel who is carrying it. (I have asked if I can be present at any meetings which involve me, but apparently that's not possible. I'm very unhappy with that, but I don't have the means or the wherewithal to fight that right now). I have to bring my cancer to appointments, to treatments, so that they can see what it's doing and investigate it. I am instructed on how to lie, where to sit, when to breathe, so that my cancer can be investigated, measure, probed, treated.
Hello, I'm here!
And when those appointments are over, I am sent away, so a team of people around a table can have secret discussions about my cancer without me being there. The information is held back from me, diluted, spoon fed, restricted. I am only told what they decide to tell. Sometimes, too many times, I only find out information from being CC'ed into a letter from my consultant to my GP. CC'ed. I'm not even the person they're writing to. I have honestly never felt more marginalised, more excluded and more powerless.
I am left at home, on tenterhooks, terrified of every phone call and every letter, not knowing when, or if, more bad news will arrive. Or good news even. Any news in fact. And it is telling on me.
No News Is Not Good Enough
This week I have been waiting, desperate to hear the results of the CT scan, and the decision of the multi-disciplinary team meeting, who would have reviewed my results and decided on a treatment plan. I have been told they meet on Wednesdays. On Thursday afternoon I looked at my phone to see that, despite sitting glued to it, I had a missed call, and a voicemail message form a private number, which is always the hospital. This was it! At once my heart dropped to the pit of my stomach, I broke out in a cold sweat and had to run to the bathroom to non-metaphorically crap myself. It took a solid 5 minutes of long slow breathing techniques to be able to get to a point were I felt ready to listen to the answerphone message. In the end it was my daughter's diabetes team, making a routine call, but it gives you an idea of the constant state of high anxiety and distress that living with cancer puts you under.
Many cancer patients talk about how, once you are diagnosed, every little twinge and ache you experience sends you into a panic that your cancer has spread, or is back. In my case, the twinge did lead to another cancer diagnosis, so trying to stay positive and warrior-like is increasingly difficult. The whole cancer experience is extraordinarily tough. Darcey described it beautifully:
It's basically like we are on the world's most wanky episode of Krypton Factor, where each obstacle is a pile of horse shit you need to snorkel through.
Breast Is Best
Thankfully, Team Breast are extraordinary. In the purgatory of waiting for Team Gynae to get their act together, (or just maybe introduce themselves), Team Breast have cleared the set, re-written the script and rolled out a new edit. I had the most helpful and useful call from one of the Breast Oncos last week. They have decided that rather than waste the waiting time for Team Gynae's plan to appear, they are going to bring forward the radiotherapy that I was going to have once my breast chemo had finished. Finally, something is happening! I had a pre-radio scan this week to set things up, and then hopefully radiotherapy will start soon after.
We had a long chat about how I was doing and the side effects of the drugs I'm taking, and I was heartened and humbled to hear that the doctor herself had breast cancer 8 years ago and was still taking the drugs I'm on now. She talked about me, about how I'm doing, and not about the cancer (even typing those words is making my eyes fill with tears).
We talked about how I had asked for a counselling referral. She said she thought that was a great idea. Not because she didn't think I was coping; she thought I was doing amazingly well given the situation I'm in, but because counselling would give me the tools to use, should I need them. So much of the cancer struggle is a mental one, it seems odd to me that mental health support isn't an automatic given. But this is where the current system needs to improve. Right now, the absolute focus is on the cancer, but somehow, things need to change to make sure the focus is on the person, too. On the man or woman who is battling to cope with the rage, the pain, the sorrow, the guilt, the fear, the responsibility of having cancer, along with all the other stuff that life throws at us, every day.
Of course, that isn't a criticism of individual medical staff, I have already met some of the most astonishing nurses and medics already. And many of the cancer charities do amazing work to support cancer patients too. But everyone has told me, patients, professionals and others, that the waiting is the absolute worst thing. Because while you're waiting, you're googling.
Because there isn't a programme, a package, plan to work to, you're left, dangling between appointments. And because as humans we need to connect with others, to process and to research what is happening to us, we find our way to groups and places on the internet. Sometime those places offer excellent support and guidance, other times it's snake oil and fear mongering, and all we have is our instinct to steer us between the two. Many times I have seen questions on social media groups from anxious members, asking others for their advice an opinions on medical letters, on treatment options, diet, lifestyle changes and alternative therapies. But it is so easy to take the wrong advice, to believe what someone on the internet said because that's the answer we want to hear. And the reason we do this, is because there is no other choice. We usually have a dedicated cancer nurse to ask questions of, but they are busy people, and they don't have the capacity to answer the constant stream of questions that cancer throws up.
What is really needed, in all of this research and questioning and group chatting, is a sense of control. To feel that we, I, the patient has some control over what is happening to my body, my life and my future. What would have really helped me, is to have been given access to services such as dietary advice for hormone receptive cancer, to prevent recurrence, and to improve my general health. There are dozens of books on the subject, but do they work? Should I change my diet? What foods should I avoid or seek out? I've no idea.
Exercise advice to know what might be a realistic plan for me to get more active and to stay fitter throughout chemo. Liz O'Riordan talks about how exercise can reduce the recurrence of breast cancer by up to 50%, but no one has mentioned this to me. Why not?
Once you have cancer, you never, ever want to have it again (ha, look at me with my double portion), and I read somewhere recently, that each incidence of breast cancer costs the NHS somewhere in the region of £66,000. Of course that figure came off the internet, so it may be absolute bollocks, but I wouldn't be at all surprised. So would it not make total sense to use the time that cancer patients spend waiting for treatments plans to begin, to be spent arming and equipping them with all the tools they need to take control of their own bodies and start the fight back to lifelong wellness? I don't want to ever set foot in a hospital ever again after this is over (apart from the scans and the check ups and the mammograms, yeah yeah), and right now, filling my days with something useful and positive would be really helpful in so many ways.
But I don't know if I'm supposed to, if I can, if I should, because no one is talking to me about me.
I've had enough of waiting now, so I'm going to start banging on doors, because that's who I am. I really not a very good victim, and I'm really not very good at waiting to be told what to do. But what I am, is a human being who deserves to be treated with compassion and inclusive respect and not be made to feel like my disease is something to be kept apart from me. So don't write to my GP about me and copy me in. Write to me, talk to me, include me, I might just be able to offer something useful in return.