Having been to the GP with hip ache for years and been given no explanation or offer of treatment other than an immediate pain injection (which I refused as I wasn't happy to have that if they couldn't tell me what it was or how it could be remedied), I asked my him for a referral to a private consultant.
Following 2 private CT scans, a tumour was discovered. It was in my spinal canal and spinal cord (sacral tumour). When this news was delivered I was, understandably in shock and had to wait for the op to remove what turned out to be a cancerous tumour. The possibility that it would be a cancerous tumour had been present from the outset, although the surgeons had believed (appearance on MRI) that it would be benign.
I am eternally grateful and ever so aware for having had private insurance and the confidence to ask the private consultant for am MRI when even he told me nothing would show up to explain my 'hip ache'.
Here's the thing...
I'm not cross about the GP not having found it. I'm aware that it was a typically asymptomatic tumour and that the hip ache was nerve damage as a result of something that would've been hard for them to find. It's thankfully been removed (5 weeks ago) and while I'm physically recovering well, the gravity of it all has suddenly hit home and it's been quite an emotional time.
My problem is this:
I gave the result of the MRI and the consultants's letter to my GP when the tumour had been found. I was in a state maaaaaaajor understatement. GP receptionist asked whether I wanted an appointment or a call. I asked for a call. To his credit (and with respect to the seriousness of the 'situation', ,y GP did call me the next morning, before surgery. But he didn't ask to see me. I was left alone, waiting, in bits emotionally, crying sporadically when my son asked me to fun to the car park with him (wondering whether I'd be able to walk again after the op., etc.). It was such a hard time. That 6 week wait for emergency surgery was worse than the op and recovery time which ain't been a walk in the park, let me tell you I'd do it all again rather than go through The Wait-- .
I'm still not getting to the point, am I...
I didn't want to make am appointment with the GP before or after the op about my emotions because I didn't have any medical need to. But I did need hand-holding. By my GP. By the person in the community responsible for my medical care. I thought.
I was discharged and given a letter which had also been sent to my GO stating that a Duty Nurse was supposed to home visit daily to inspect and dress my wound although it had only just been undressed, it was shockingly raw. I can't drive for at leeeeeeast 6 weeks.
No Duty Nurse has ever been to visit me.
The on,y GP visits have been to check I have exactly the right number of the high security type drugs I'm now on. No pain management discussions. Appointments two weeks apart.
Left.
I'm resourceful. I'm assertive. I'm also not stupid. I called the hospital that discharged me and begged to speak to the Pain Team that were caring for me in hospital. 2 minute chats on a weekly basis (they're not supposed to do this but have been so kind) have given me guidance of how to reduce my meds ALONE.
If not for them, I'd have stayed on all the drugs I was on 5 weeks ago: oxycodine, oxynirm, gabapentin, ... the list is (almost) endless.
I'm grateful to them and am grateful to a cancer charity who I called in tears on Monday. I was having am emotional break down but like a post traumatic shock / survivor's guilt thing. Not logical, guilt-ridden (as know I should be so grateful and was only grateful and positive for the first 4 weeks post op.). Friends and family didn't understand this huge emotional shift and nor did I.
And finally, here's my point... my GP has been an invisible bystander to what has and is still (early days and yet mire dodgy/ questionable CTs) the most awful and real health scare /threat and upset in my life (not the first but the most intense in terms of time). Until I find out that it was cancer, I had nowhere to turn. I called Macmillan twice before (biopsy inconclusive pre op) but felt fraudulent and like I was taking their time and money just as was worried in bits but prob not cancerous a/c to consultants I needed my doctor then, I need him now. Not to go on a waiting list for counselling when I can't drive. But to see him for 10 mins a week to talk. To know he cared. To know that he was behind me medically when the black hole opened and I'd fallen in.
I feel for those who are in that situation now or who may be at some point. I have friends and family and they we're great. But I do feel that the silence of my own GP failed me.