Basically this all started back in August when I started getting double vision. I attended the Royal Eye Infirmary at Plymouth’s Derriford Hospital. No one had much idea what was going on. Then I started to get all sorts of symptoms in the right side of my forehead. Pain in three forms – nerve pain, headaches and migraines. Then it started to tingle and go numb. I had various scans which didn’t show anything. In November my oncologist decided that it could be a metastasis in the bones of my neck compressing a nerve. My scans showed that the tumours in my lungs had gone, but my bone metastasis were getting worse so we stopped the chemotherapy in late November in preparation for treatment on 27th January with Samarium 153 which zaps bone metastasis with beta radiation.
However, as December started I got worse. My forehead became totally numb from eyelashes to halfway back on my RHS head, I had severe migraines and the double vision became uncorrectable. On top of this my breathing became very bad. I couldn’t do anything much without gasping for breath.
On 18/12 I saw my oncologist again but they had no more news because the MRI of my head had not yet been reported.
On 20/12 I had the worst migraine of my life. I was in bed for 3 days and we called an ambulance because the pain combined with breathlessness made me panic and I could barely respond. I was just recovering when we got to Christmas Day. I had the meal at 3pm and then started another bad migraine so off I went to bed again until 31/12 when we got a call from oncology to come in that day. We were pretty scared by that because we imagined they’d found some fatal tumour somewhere. However it was to tell me that I had this cerebral venous sinus thrombosis and I needed to see a neurologist urgently. I still couldn’t really breathe so this was all very hard.
Off we went to see a neurologist only for him to get an emergency so we couldn’t be seen for a while. I desperately needed to be in bed so they admitted me. I then stayed in hospital until 13/1.
During my stay they diagnosed pleural effusion or fluid in both lungs, which needed draining. That was done on 11/1 and my breathing immediately improved. They drained 1.5 litres out of my left lung.
I had eye tests and other tests to see if I needed a lumbar puncture to reduce the pressure in my head. At the moment that is not indicated. I was already on anti clotting injections called Clexane because I have blood clots in my lungs, so that was the only treatment I need at the moment. I have to wait for my body to dissolve the clot. This could be weeks or months. Residual effects could be few or lots, no knowing.
So in the meantime I’m left with constant head pain of various sorts, sciatica in my rhs leg from the nerve compression in my lower spine, and double vision and a sore right eye. Not a pretty picture. I’m maxing out on painkillers ranging from paracetamol up to oxycodone, and we’re keeping a careful log of what I’m taking so I don’t overdose.
The good news is that now I’m home and can control my environment I’m feeling better every day. So I’m sleeping a lot and watching tv but at least I’m not just lying in bed in pain.
I had a blood test on 11/1 which showed I was neutropenic which means I’d no immune system, so I now have to stay isolated until I have a good blood test.
We’ve had to postpone doing the kitchen until I’m better, so the house will have to wait. We’ve had a stair lift installed just before Christmas which was just as well, because without it I’d still be in hospital. We also had to cancel our trip to London to see every session of the masters snooker. Fortunately we got a full refund.
I know all this sounds pretty awful but I’m quite likely to recover from this and be back stable on chemo. Once the effects of the samarium have gone I’ll restart the chemo. It is possible that I’ll be in hospital immediately after the treatment if I go neutropenic again and my temperature goes above 38.
So that’s about it! Thanks for your concern and I’m sorry I didn’t let you all know until now.
If you want more (or less!) info then just ask. I have no problem talking about all this or my prognosis. Paul is looking after me brilliantly but he struggles seeing me in pain. But he’s doing a great job. I have community nurses visiting and occupational therapists so loads of support.
Love to you all,