I posted this, apparently, initially in the wrong place, so copy/pasting it here:
Hi. I've had a bit of an achy neck for a while but thought nothing of it, as I've had something like that off and on for years - I normally spend a lot of time in front of the computer as part of my job, and as a general hobby/passtime. I'm perimenopausal and over the last couple of months have had increasing aches and pains so eventually bit the bullet and went to the docs to ask for HRT. I got patches just under 2 months ago. Around a month ago I was getting increasing pain in my upper left leg, went to the docs, got an x-ray, they concluded that it was probably a groin strain. In the meantime, I'd also developed an increasing ache in my right arm and around my neck, and tweaked my back on the right hand side. Mentioned this to the doc at the time who referred me to a back clinic.
Last weekend (12th September), I just couldn't cope with the pain any more and rang 111 who initially arranged for an ambulance (I think because they heard neck and arm pain, with tingling fingers). Not long after I got a call back from what I assume was a paramedic, who cancelled the ambulance but said she'd got me booked in for an appointment at Same Day Emergency Care at my local hospital for 5pm.
Went along - they had no record of the appointment, but did see me. Over the course of several hours they took lots of bloods and an x-ray of my neck. They said they were a little concerned about the results of the x-ray but needed to get blood tests back - sent me home at just after 8pm with a prescription for orimorph (having given me a dose to get me through to when we could pick up the prescription) and an appointment to go back on the Tuesday.
Tuesday resulted in a lot of waiting around and what I think was a CT scan.
We were then told that they had found a tumour in my breast - 1.5 mm in size, and that they believed that was primary, which had spread to C5 and C6 of my spine (she mentioned "lytic lesion"). We were told that we would be getting an appointment to be seen by a specialist within 2 weeks.
I now have an appointment for the 6th October (3 weeks after initial diagnosis).
I have gone from taking paracetamol for pain to it ramping up to the point where I'm on gapapentin three times a day, 10mg slow release morphine capsules twice a day and 2.5ml oramorph (initially they said 4 times a day but when they put my on the slow release ones, they said for breakthrough pain, so I'm not sure how often I can take that).
Usually by around midday I'm feeling okay - a bit spaced out but in a lot less pain, but by the evening it seems to start wearing off. Last night (or rather, this morning around 2.30am) it felt like everything had worn off, I'd taken all the medication to the limits of what I'd been told, and the only thing left was paracetamol, so I took some of that. Eventually I got back to sleep and actually woke feeling not too bad this morning, so I'm hoping it's starting to build up a bit now.
But everything seems to be feeling worse. The pain is worse, the numbness, weakness in my arm and tingling is getting noticeably worse and my back - although the sharp pain has gone, I'm getting random aches in new locations.
I've done some research and seen both the doom and gloom and the more optimistic info, but am just really looking for any advice. For example the morphine seems to have gotten me very much bunged up. I'm normally very regular. I don't feel bunged up, but there has been nothing for a week (doc gave me some laxatives and I've taken the last three nights with no movement).
I have a friend in the NHS who advised me to ask for a prescription costs exemption form and, whilst waiting for that, special forms in order to claim the costs back - which no-one else during this process and since my diagnosis has told me about - in fact everyone I asked (hospital, doctors, pharmacy) all seemed very confused initially about it. And I'm wondering what else I should know?
I'm also rather confused how breast cancer is classed as the primary, when the tumour is so small, yet the damage to my spine (which is apparently then compressing the nerve to my arm) seems so much more.
