So - I phone the hospital on Tuesday to a) ask why I no longer received copies of all letters that they send to my GP. The receptionist stated that they don't do that - you only receive a treatment plan in the post. This is clearly bollocks - I got a couple and then they inexplicably stopped. The folder they gave me when I was diagnosed this time round had something in it about being entitled to all such correspondence but unfortunately, because I launched the folder somewhere into the spare room which means it will, in all likelihood, never be seen again - my spare room connects directly to the Bermuda triangle - I can't double check. Given that that I am more concerned with the other reason for ringing, I decide to let this go for now and move on to b) Any chance of getting my CT results please?
She promises to ring me back that same day.
Come Friday and still no phone call, I ring again to ask if my CT has been reported on and if so, could they let me in on the results please. She states that they are back, and she will just ring Dr E to see if she can give me the results or if he wants to do it or what. Great! That's all I wanted!
Ten minutes later, my phone rings. It's Dr E. Now, as you may or may not remember, they originally told me that I had mets in my neck and arm lymph nodes, a couple of hot spots around my original scar and a couple of mets in my liver. Every result I have had since has referenced these mets and shown that they are shrinking.
So he begins by saying that he has reviewed my CT scan and it shows that my bone lesions are shrinking, which would indicate that the Tamoxifen is working on the bone metastases.
What I think: "Whoa. Back the fuck up, sunbeam. WHAT fucking bone mets?"
What I say: "Well, that's good news, I suppose, but I don't have bone lesions. All I have ever been told is lymph nodes and liver".
He tells me that I should have known this from the letters I received. I point out that I have received no letters other than a treatment plan and a copy of the letter to my GP confirming the diagnosis. He asks when this was, and I say "last March or so".
He can tell from my voice that I am close to tears so he says that to calm me down, he will check the last three scans. After a brief pause during which I light a fag and try not to let him hear the sounds of smoking, he tells me that he has looked at the last three scans and they have decreased every time.
I ask him which bones they are in. He replies "Multiple". I can tell he is reluctant to tell me what MY body is doing and I don't want to piss him off just yet - after all, I am depending on him to keep me going.
I ask if these would be causing the random bone pains that my GP put down to chemo/Tamoxifen. He thinks it quite likely.
I ask him if there's anything I can be doing in the meantime - meaning, "should I be taking calcium supplements? If so, can it be in the form of lots and lots of cheese?" He suggests a monthly injection but I need a dental examination first. As we all know, because of covid, getting a dentist appointment at this time is like getting hold of a bucket of rocking horse shit but I agree immediately and he says he will ring me again next Friday.
I put the phone down and let forth with every swear word I know and invent a few more for good measure. After I get all the "bollocky bollockit" out of my system, I begin to think over this. Why the hell have I not been told? How can three different oncologists, a handful of registrars and my GP all forget to tell me that I have multiple bone mets? How was I going to cope now? For 18 months, I have been telling myself "....only half a dozen bits. That's nowt. They're shrinking anyway." That helped my mind get some peace and quiet.
Now I have no idea how many I have or where the fuck they are!
What I I had decided to finally pluck up courage to go abseiling or ziplining? What on earth could have happened? How dare they not tell me this information?!
I am congenitally clumsy - people run screaming if I pick up a hammer or power tool. They don't want covering in the blood that will inevitably ensue. I've been clumsy all my life - it's something I am used to and I accept that I am going to cut myself or burn myself or fall over the dog or a lump of thin air. I try to be careful but cupboard doors just open themselves above my head as I'm squatting down so I've long since accepted that if I get through a day without blood or bruise, it's a win. Obviously, I need to know which bones are at risk. I think of that episode last winter when I walked down the snowy garden in flip flops - yes, with hindsight, it was a stupid idea but it's too late now - I say "walked". I probably got four steps before sliding the rest of the way on my arse. But what damage could I have done?
I have cut my use of antiinflammatory Naproxen in half, thinking to give my liver the best chance possible. As a result, I've had various aches and pains that I put down to getting older - I mean, the next birthday has a 5 and an 0 in it - but what if it isn't just general aches and pains?
Fuck it - I need to know where these mets are and come this Friday, he IS going to tell me or there is going to be trouble.
In good news - I managed to get the dental appointment the onc insisted on. It's next week. In bad news, I have a dentist appointment next week.
Tune in again on Friday for, no doubt, another rant!
Hi PicNik and thank you so much for your reply.. I emailed PALS last week and received a phone call and email from them this week with a link to the form needed to release my records. This seems to be the only way I can find out.
Thank you also for saying I am an excellent writer - that means so, so ,much. At the time of my first diagnosis, I read all the breast cancer books I could get my paws on. None of them gave me what I was looking for. I didn't want melodrama or woe is me. I didn't want windchimes and rainbow wishes. I wanted straight, honest experiences, preferably written by someone within a decade of my own age. I didn't find one.
So I wrote it myself. I never did anything with it but I found it extremely cathartic. I have had some minor successes with story/poetry competitions and have just been lacking the courage/shove needed to add these latest chapters to my original story, proofread it, change it, kick myself, change it back and send it off somewhere.... You just gave me the courage. Thank you.
Oh my gosh, I am so sorry that you are going through this dreadful lack of communication and stress (panic actually it would be for me). Can you try Pals at your hospital, they are usually very good and will get you the info you need and an appointment sorted ASAP with the onc and anyone else you need to see. I feel for you, BTW you are an excellent writer and good that you can vent on here. I hope you get honesty and help soon, sending you oodles of strength and a Medicine Buddha xx
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