As QANTAS tell me to head to gate 5 to catch my flight from Sydney to Brisbane for the first Ashes test, I lie in bed next to the moors north of Halifax pondering why I’m not getting that plane.
Eighteen months ago I was walking those moors daily. Three times a day to be honest. A three mile route each time taking in country roads, a lake and some fresh air. I was a fit as I’ve ever been as an adult. And proud of it.
Now I lie in bed frustrated by the effects of lung cancer. At the end of March I can recall walking around another body of water in Slovenia, Lake Bled. It took a couple of hours at a modest pace, but I managed it with relative ease. June saw me fail to complete a forest trail in New England. Early August and something happened in Chile that slowed me down considerably in Santiago. September saw me struggle around South West America. The big issue is non-small cell lung cancer. The non-smoker variety. It’s an interesting name because the tumours in the lung have remained just 2cm in size since they were first spotted. It’s the blood stream taking the disease to my bones that has done the real damage. And will kill me.
In June I realised that I’d exhausted the benefits of the afatinib wonder drug that had given me a new lease of life. I could feel a tumour returning on my pelvis. Come October and the oncologist eventually agreed with me, with the help of a scan, and I changed to a new wonder drug, osimertinib.
I got a quarter of the way to “average survival” with afatinib before it failed me. I’m already close to a quarter of the way to that with the new drug. There’s an instinctive fear that I won’t get to average again.
Last night at the football, a rare goalless draw, I parked up on yellow lines outside the ground and reluctantly took my walking stick in hand. It’s likely that I don’t need it. But as I crossed to road it’s obvious that I’m not going to jog quickly to the other side. Chris protectively adjusts his route to position himself between me and any oncoming traffic. I safely reach the pavement on the other side of the road.
Exiting the stadium is close to terrifying. There are no handrails, just steps and crowds. While my stick advertises frailty, Chris helpfully moves in behind me as I head up the stairs out of the ground, holding off the risk of somebody inadvertently knocking me over. The whole area at the top of the right leg feels like it’s been plugged back into my body at some point and nerves, muscles and bones aren’t confortable.
It is one of the many reasons my oncologist has given to stop me fulfilling the trip of a lifetime to Australia. Although she hasn’t shown me the CT scan that identified the return of my pelvic tumour, she has been consistent in warning me of the risk of falling over and breaking bones. I definitely feel vulnerable and although I can’t see inside my right hip / buttock / leg area I can feel a mishmash of stuff going on in there making the leg weak. Minor pains, pins and needles and general instability. My plan to walk a mile from hotel to cricket ground tomorrow and on subsequent days was patently flawed.
That weak leg creates other issues. Standing up can be hard work. Granted, the osimertinib pills appear to have shrunk the nasty tumour that the afatinib eventually succumbed to. But when I move from lying, to sitting, to standing I have to think about how to go about it. Adjusting for that weakness.
Those adjustments often give me shoulder strains. Those shoulder strains often make me think my cancer has spread again. In reality the pain goes away within days. But the simple act of standing up becomes even harder. Combined with man-flu and a throaty cough and the simple act of sneezing or coughing causes quite severe pain, albeit for an instance, in the shoulder area. Fortunately, at the time of writing, those shoulder pains have gone and so has the man flu!
Then there are the other ailments. I feel like I can cope with cancer and its death sentence. Other minor stuff is driving me nuts though.
Two big toes with ingrowing toenails. I’m paying out £70 a month to get these managed by a podiatrist. They are uncomfortable. And risk an infection. And with the cancer drug risking a low white blood cell count Oncobabe fears the open wounds on my toes will give rise to an infection that could easily beat the cancer to killing me. Yesterday Mr Podiatrist gave me the good news that both toes are improving. But I still need to bathe my feat daily in warm salted water and get somebody to bandage said toes when dry. My landlord and girlfriend have generously saved me from the need to do this myself. Putting my socks on strains my damaged back daily. The dexterity needed to manage toe bandages feels beyond me.
I’ve been 90% deaf in my right ear since May. An eye doctor linked this to my Bell’s palsy. For over a year I’ve “enjoyed” having a lopsided face, a diagonal smile and a right eye that won’t blink. A year on and I’m more comfortable with the condition itself. My eye doesn’t get as sore as it once did. A bit of lubricant at night and taping the eyelid down while I sleep seems to have things under control. While most recover from this in weeks, I now accept it won’t ever go away.
The eye doctor arranged for a scan, said something about facial nerves causing the palsy and also the deafness and that was that. He never uttered the words “get yourself seen by an ENT specialist “. So I went on holiday to New England, Chile and South West USA and forgot about things. Accepting the partial deafness and waiting for the Bell’s palsy to go away.
Then a couple of weeks ago I became about 70% deaf in my left ear (my estimate). I couldn’t hear the TV and required headphones to get any noise out of my iPad. Suddenly I’m in a silent world. A same day visit to my GP is organised and I get some interesting news. Wax. Take olive oil drops for a couple of weeks and return for syringing.
Now this raises another interesting question. Granted, the left ear isn’t linked to the Bell’s palsy. I’m confident that my syrunging session this lunch time will clear that. But efforts on the right ear could potentially, unmask a misdiagnosis. And I hope they do.
Is my near totally deaf right ear problem really caused by Bell’s palsy? The eye doctor seemed convinced. But he’s not an ENT specialist. Is it possible that a mere practice nurse at my GP surgery can cure my right ear deafness today with a syringe?
I really hope it’s a yes. But that will open up the question as to why I wasn’t referred back to my GP or onto ENT in the first place. Six months of near total deafness in one ear that could have been avoided.
My oncologist hopes to be able to say I can fly again towards the end of January. I think I’m ruling out long trips for now. The spread of the cancer could restart at any time. While I’m hoping for several years more, the statistics I’m reading continue to tell me to enjoy what time I’ve got left. Which I intend to do. But toes, ears and Halloween mask palsy face along with the occasional cold are really quite annoying!