I started with Dabrafenib and Trametinib in the middle of September. Almost immediately I experienced aching joints and the soles of my feet felt hot and tender. Both of these were more a sensation and had no impact on my life.
A month later, on a Saturday we had a brilliant picnic with my cousin and his wife. Later that afternoon I started to feel very hot. I remembered that I had been given a thermometer with the tablets; 39.6°! A moment of panic before I phoned that the helpline. I was asked lots of questions, and as I answered I went from sweating to shivering with cold. I found it difficult to concentrate on what the nurse was saying and had ask her to repeat herself. Next thing she said was “an ambulance will be with you in 30 minutes, pack an overnight bag and remember your phone charger”.
The ambulance arrived. I went out where the one paramedic said I should have waited, and they would have carried me out!. Once inside they introduced themselves, Pete and Collin, and a trainee Maggie.
I was hooked up to a machine which seemed to check everything. It was slow going as everything had to be explained to Maggie, I was fascinated by this detail. In-between I chatted to Pete who was on driving duty; and what came out was how compassionate he was to all the different patients they encountered. I made a remark about drunks, etc and was gently admonished.
40 minutes later and we set off, with a long line of cars behind us (they use our little road as rat run). No lights or siren, to my disappointment! On the way we were told to go to the Ambulance Receiving Unit and not A&E, much to the crews’ delight, as that would save them time. Once there I had more tests before saying bye to the crew and I was taken to a different part of the hospital; past closed doors with big yellow signs “No Entry Without Ward Sister’s Approval” COVID suffers?
More machines, tests and X-rays. Eventually a doctor came and said that I had a urinary infection and gave me antibiotics to take, and I could go home. I asked about the tablets I was taking but they were dismissed.
Back home Sunday and Monday passed as a blur. Tuesday I woke up with my eyes seemingly covered in gunk as I couldn’t focus. Much rubbing and rinsing with water didn’t help, it dawned on me that I couldn’t see. Helpline again, and I was sent down the road to see the Ophthalmology doctors. A long wait for me to see anyone and I was told I had cataracts, definitely caused by the tablets! I was devastated, would I every see properly again? Two lots of drops and a return appointment in 2 weeks.
By now I was thinking dark thoughts and returned again and again to 2014 when I turned down a work move to the Netherland, they have euthanasia – crazy now but all consuming at the time as I battled the sudden loss of sight.
Worst followed, On Saturday I woke to no hearing, at all. I could just hear a dull roar. I lay in bed and started to hear other things – a helicopter taking off which went on and on. I tried to force my thoughts to something pleasant, only then to hear a bell ringing. Later in the day I heard a mother and children taking. All these voices in my head were indistinct. Sunday was as bad, and I couldn’t wait for Monday when the Cancer Nurse had promised to phone. She never did and I was in the depths of despair. I know now I should have tried to contact her, but my head was messed, little sight, less hearing.
Over the week, my sight improved slightly, if I concentrated I could bring something into focus, but it took a conscious effort. My hearing also improved in that the noises in my head faded but hearing was very bad.
Back at Ophthalmology and a different doctor who was less than forthcoming in answers to my questions. Is this permanent, what can you do about the cataracts, was met with one-word answers, that I battled to hear. As far as I could understand, it will get better. It hasn’t so far and no way can I drive or cycle. Walking in the dark was almost impossible. Plus the hearing problem affected my balance and I staggered around rather than walking normally, any change in levels was a major obstacle when walking.
I have seen the oncologist who confirmed I had to stay off the tablets until these very obscure side effects were sorted, and she arranged for CT and MRI scans as she told me she suspected nerve damage to sight and hearing – great.
I later saw an Audiologist who took me through hearing tests and then spent longer explaining the tests and then showing me the results. My level of hearing showed that I can’t hear some letters, TH, S, F, P and more. He then told me that mechanically my ears are fine but the Cochlear nerve was damaged. Not understanding, I asked how long before it recovered - short answer “Never”. I’m on the waiting list (6-9mths) for hearing aids.
I expect to get the same result for my eyes.
Now, working from home means that my hearing is tolerable but the Audiologist warned me that in any noisy environment, office, restaurants, pubs,etc, I will battle hear. The same applies to my sight, at home I’m coping. But driving and cycling are out.
That means giving up work 2 years earlier than planned.
Can I claim compensation from the NHS for loss of income, and loss of quality of life, serious question.
