For anyone who's seen my posts on other forums apologies for any repetition. This is our story so far/a rant from me because I'm feeling so many emotions I might burst... so here they are on paper (I've tried to cut out any swearing). It's long. I don't expect anyone to read it all but I need to let it out somewhere.
I went with my mum just before Christmas and we were told by the specialist she had lung cancer. Only, he never actually said that! He said 'there's something there that shouldn't be there' in her lungs, and when showing us the biopsy he called the affected 'gubbins', as though we were children. He then went on to phone the Macmillan nurse in front of us where he advised the nurse that mum had a tumour, and also called it an 'adenocarcinoma'.
When he hung up I followed up on this and said that he'd mentioned that it was a 'tumour', and he dismissed this, telling me 'it's a cancer' and acting like I was making the word 'tumour' up. I asked him to repeat the 'long word beginning with A' for me (I had never heard it before, not being a doctor and all), and he asked me if he'd said 'adenocarcinoma', acting like he couldn't remember! On a phone call he'd made seconds ago. Weird.
It frustrated me A LOT that we'd learned more about mum's situation by a phonecall made in front of us, and also by him dictating a letter in front of us, than we did by him actually speaking to us like human beings. It's like he thought we couldn't take the truth.
He really did give us far too much false hope at this appointment. He mentioned the word 'cure' multiple times and led us to believe that they'd be able to surgically remove the affected areas of the lung and she'd be cured! He did mention the possibility of 'mop-up' chemo and/or radio therapy which we were more than fine with since the prospects sounded so promising. He did make it clear that other tests needed to be carried out before a surgery date was discussed, which we totally understood. Things need double and triple checking before something so major happens - we aren't stupid, we get that.
Anyway, those further tests and subsequent MDTs led us to an entirely different outcome - the cancer has spread to the centre of mum's chest so they can't operate as they feel it's too risky as it's too close to her heart. Again, totally understand that but it was a huge side swipe to both mum and myself as we had fully been led to believe that this outcome was very unlikely. But, we dusted ourselves back off and spoke to lovely Macmillan who explained that we now needed to wait for another of the tests to come back as it may be that mum's got a specific type of cancer which may have a more targeted, specific treatment option. Fine, no problem. We wait for the results...
We hear from lovely Macmillan again last Wednesday to let us know that mum's biopsy has come back with an inconclusive result - would she be willing to carry out another? Yes, of course she will. We just want whatever is going to happen next, to happen!! We're waiting here in limbo for a treatment plan, a date for yet another biopsy (her third), then it'll be another 2-3 weeks before we get results from that. Meanwhile, mum's getting absolutely no closer to a treatment plan or an appointment with an ACTUAL oncologist (the specialist mentioned above is nothing to do with oncology), and I'm tearing my hair out because I want to know WHY this is taking so long, are they even going to bother with a treatment plan? No one seems to want to tell us anything!!! We just want straight answers.
On top of all of the above, mum's had countless letters that all completely contradict one another. We were told multiple times that her last check showed no abnormalities in the lymph nodes, only to be told, several phone calls later and after me pushing for an answer, that that spread to the middle of her chest that I mentioned earlier? Well bugger me, it's her lymph nodes!!! Why is no one telling us this pretty crucial information outright? Why are we having to ask for it?
Mum is chasing tomorrow (Monday) to push for a biopsy date and get some kind of answer regarding oncology because as I say, she's not even been touched by them yet which I find ridiculous.
With everyone being so evasive about everything, it makes me wonder if they've already made up their minds and decided she's a lost cause so chemo etc. is pointless. I'm terrified at this prospect but it's hard to think otherwise when no one will tell us anything unprompted!!!!!!!!!!! Chase, chase, chase is all we've done and I hate feeling like a nuisance because we are under no illusion of the extra strain the wonderful NHS are under... but as I'm sure anyone on here knows/feels, the person you love is your number 1 priority, and if it feels like time is slipping by with no one apparently doing anything for them, it's frustrating, heartbreaking, scary, anger-inducing, and all the things.
I think I speak for both mum and myself when I say, just want answers and to be treated like adults.
Hi Rebeccallx
My wife's route to a diagnose was also very long and when she finally got a diagnosis we were told "Leiomyosarcoma" - and ended up looking that up on line to discover it was cancer. Still when she see's a GP about almost anything else and says she has LMS they end up looking it up on wikipedia.
I know doctors are under a lot of pressure and they are used to dealing with cases like this on a regular basis but sometimes they forget it is our first time. I got a lot of help from our local Maggies and of course from Macmillan and our friends on here.
It might help you to look at Looking after someone with cancer, especially the bits about coping with being a carer; many of us have come to realise we need some help some times and at the minimum sharing on here can he helpful.
<<hugs>>
Steve
