"My eyes were half open, But we didn't see him there, Put the car back in my pocket, And I'm still here in my chair." - Francis Rossi
Yet another two weeks of habitual cabozantinib abuse have passed without incident and once again it’s time for my fortnightly oncology clinic with Dr. Wheater. Other than the fact that my voice is a little hoarse, I’ve got no other new ailments to show for my six weeks on the maximum dosage of my highly potent new chemotherapy drug. No sweats, no major tumour pain, no sore or dry skin and no sore mouth. I don’t even have the shits at the moment. “Are you sure you’re taking the chemotherapy?” quips Dr. Wheater clearly surprised at how well I am faring on this treatment. “Quite sure.”, I assure him. Dr. Wheater does however, spot that my blood pressure is slightly elevated and suggests getting a blood pressure machine at home to recheck it when I’m perhaps a little more relaxed. He also takes some bloods to check there is nothing awry internally that has not yet manifest itself physically. Nonetheless things are clearly going well and it isn’t too surprising to hear his decision to simply carry on with my current treatment at the existing dosage. He also prescribes me a month’s worth of the good gear and sends me on my way with no need to come back again for another four weeks rather than the usual fortnight. Result.
I awake a few days later with a tingling feeling in my hands and feet and a very dry mouth and throat. The day after that and the tingling in my feet is turning into a chafing that makes it uncomfortable to put any pressure on my feet. The inside of my mouth is also becoming quite sore and somewhat difficult to open wide, should I wish to do so. The much anticipated chemotherapy side effects, it would appear, have finally kicked in but despite being frustrating and uncomfortable they are not however especially dampening my energy levels and I still feel well in myself. There’s therefore no need to cancel any of my forthcoming trips to Cornwall and Durham. Indeed, I have a rather relaxing weekend visiting my friend John in Cornwall, even if I am hobbling about a bit on my blistered feet in a rather haphazard fashion. I also ensure that the ever increasing pain in my mouth caused by the chemotherapy stripping away the outer levels of skin does not unduly prevent me from stuffing copious amounts of fish and chips into it.
I get back home from my weekend in Cornwall to a message from Gus, my specialist oncological nurse. Apparently my latest blood tests show that although I’m happily grinning and bearing the chemotherapy side effects, my liver seems rather less tolerant of being routinely poisoned. The bloods show that the Alanine Aminotransferase (ALT) levels are about ten times the normal level, and I’m instructed to take a break from the chemotherapy to see if they settle down. I’m rather frustrated at having to stop with the chemotherapy, my feet may well be quite severely blistered and rather painful, but in a perverse way I was quite happy imagining my tumours undergoing a similar brutal attack and was therefore keen to keep up the full assault as long as possible. Dr. Wheater’s first priority is to get me a quick ultrasound scan test to ensure there are no serious plumbing issues with my liver. I’m booked into the radiology department at Southampton Hospital two days later where I bump into Gus in the reception area and am immediately ushered into a treatment room for my ultrasound scan. The hand scanner is trawled across my steroid engorged belly and flabby flanks but it's hard to make much out from the blurry monochrome images it produces on the screen annoyingly angled to the side of my head. I was hoping for a bit of Alan Partridge styled running commentary during the scan but the doctor is not especially forthcoming with his findings. I badger him for a bit more information and he concedes that he can see no obvious problems such as kinks or perforations in my private pink pipework, but his view is apparently somewhat obscured by my large measures of tummy gas that I am clenching onto in a desperate act of politeness. He takes a large number of static images from the scan to forward on to Dr. Wheater to see what he thinks, but no other information seems forthcoming today.
I get a phone call from Gus the following day who confirms that Dr. Wheater has taken a peek at the images from my ultrasound scan and couldn’t see any obvious physical problems. He therefore wants to simply monitor my liver function closely via regular blood tests over the next few weeks with the hope that it will improve with a short break from the chemotherapy treatment. If so, I should then be able to simply resume the treatment once it has settled down a bit, possibly with a lower dose if there is still a concern that my liver is likely to be besieged by the full dosage. I guess the chemotherapy break will also give my feet a chance to recover too. We have another trip this weekend to Durham to check out the Lumiere festival and to visit the girl, so it will be nice if the side effects have subsided somewhat for the trip.
In the meantime, the blisters on my feet have now burst and have started to wear away leaving large flaccid flaps of thick dead skin dangling off the soles of my feet. I can’t help but peel the dead skin off and reveal the tender new membrane underneath. I realise my error immediately as I touch the virgin fresh skin and try to make amends by gently rubbing some Epaderm cream that I got from my last hospital stay into the red-raw soles of my stinging feet, but to no avail, the pain is excruciating. I post some photos of my offensive ruby trotters on Facebook and apparently put several people off their dinner. Alas my feet are still pretty painful when we visit Durham a few days later but with a good squelching of cream and some thick socks I’m able to cocoon them enough to slowly shuffle my around and admire the ingeniously illuminated city.
Thankfully subsequent blood tests when we get back home show that my liver function is gradually improving whilst on my chemotherapy break and although it’s not quite back to normal, after a fifteen-day break Dr. Wheater is finally happy for me to resume my treatment, albeit on a reduced daily dose of 40mg/day, down 20mg from my previous 60mg/day. My liver function may well be settling down but I think my feet still don’t seem to have quite got the message yet, the raw skin on my feet is still making it very painful to walk and its getting close now to our Disneyland Paris trip, which I imagine will require a fair amount walking about. As our trip approaches I awake each morning and test my feet by standing up, only to discover I either need to sit back down on the edge of the bed again or slowly totter to the nearest chair on my tippy toes making “ooh” and “aah” noises in time with each doddering step. On the day of our trip to Disneyland my feet have infuriatingly still not improved, but never mind, we’ve got a wily new travel plan in place. Firstly, we have now booked seats on the Eurostar so I only have to stagger as far as the station rather than drive all the way to Paris as I had originally planned. Secondly, I have discovered that once I get to Disneyland I can hire a wheelchair in which to be pushed around, and even better still, apparently if I present them with a letter explaining my medical condition, I should even be able to get a special pass to enable me to jump the queues on some of the rides. My daughter drives us to the station and by the time we board the train to London my feet are already pounding and rather inconveniently still continue to hurt even when I stop standing and sit down on the train. We have at least bagged ourselves four seats together around a table and much to Tori’s annoyance I discover that the pain eases a little if I raise my legs horizontally and place them across Tori’s lap on the seat opposite. Once in London the next obstacle is getting from Waterloo station across London to St Pancras station to catch the Eurostar. I slowly stumble my way across the station concourse to the underground using my family as shields around me to protect me from the bustling commuters pushing and shoving their way in all directions. Once our tube train arrives my daughter gets in the carriage first and swiftly bags the remaining seat so she can offer it to me when I’ve eventually successfully manoeuvred myself into position. There’s a few waits at St Pancras as we collect our tickets and go through passport control but I manage to find suitable seats or perches to take the weight off my feet while we wait and we soon make it on to train without making too much fuss.
By the time we get to Disneyland Paris my feet have rested enough for me to take on the final stage. The station is fittingly right next to the entrance to the park but we need to collect our park tickets from our hotel before we can go in, in order to get to the hotel, I really need my wheelchair, but the wheelchair hire shop is inside the park. We explain this conundrum to one of the staff at the park gate and I’m clearly not the first person to pose him this particular dilemma. Without any further explanation required Tori and I are let into the park and closely escorted to the wheelchair hire shop where my chariot awaits. As soon as we’ve hired the wheelchair we are then immediately escorted back out again before we can sneakily enjoy any of the rides. Once triumphantly installed in my fetching new wheelchair the Jago family are able to pick up the pace and I’m whisked along through the Disney village and on to our hotel, The Newport Bay Club, to check-in.
I could become quite accustomed to my new wheelchair. When I’m out and about no one normally realises that I have terminal grade 4 cancer and that I’m in a lot of discomfort from the chemotherapy treatment and am often restricted in what I can physically do, but as soon as I’m sat in my wheelchair I’m instantly granted an accommodating dispensation for my condition from everyone around me. I bypass the security scanner on the entrance to the Disney Village as my wheelchair is rapidly waved through the side gate, as a disabled person I clearly wouldn’t have any concealed weapons hidden about my person. I decide however not to make this sarcastic but rather obvious point to the security staff and simply make the most of my new found quick entry mechanism. Keen to milk my new privileges even further we head to the “Town Hall”, where I cash in a letter from the hospital detailing my diagnosis, for a little green card that grants me disabled access to the rides. We test it out my new green card on the Haunted Mansion first, instead of joining the forty-minute queue at the front we head past the disabled sign at the exit gate and are ushered onto the ride after a short wait of only a few minutes. I feel a little guilty for playing the system but in reality my feet really wouldn’t have been up to standing around for forty minutes so having suitably quelled my conscience we decide to go for it and I spend the next two days being blissfully pushed around the parks in my concession chariot jumping the queues for the best rides and attractions. I liked Thunder Mountain best – we did that four times without queuing. We also got to meet and greet a fair few Disney characters too including this tight-arsed duck who unsuccessfully tried to persuade me to give him some money.
