I was very wrong in thinking that I'd be "right as rain" in a couple of weeks following the operation. While not in any pain as such, there seems to be no escape from a tiredness that never seems to let up. It has stopped me in my tracks for weeks now, where the simplest things can take hours to achieve. I've only felt like this once before and that was when I was going through Chemotherapy. It's not just a bone-tired feeling in your body, but a fatigue that grips your mind, making thinking and memorising things scatty to say the least. It was getting so bad that I booked an appointment with the GP to talk about it as well as few post-op issues that had come about. I went along with my list of symptoms looking for answers. The numbness across my face, the weird "wet cardboard/burning rubber" smell coming from inside my sinuses and the strange piece of clear fishing line that seems to be holding the inside corner of my eye together which is now protruding internally from my left nostril, which when I gently pull the bit hanging out of my nose, it moves the corner of my eye!
I go through the list of issues with the doc and she is understandably reluctant to address any of the surgical stuff and asks that I see my surgical team about these things... fair enough. She went on to say the tiredness is a combination of the regular effects of having had major surgery and trauma of dealing with what's been happening over the last few months. I think she was right on point in saying that no "magic pills" are going to change the way you feel about what you are dealing with and suggested some kind of counselling. I had some counselling following treatment last time, it helped to be able to "spill ya guts' to a complete stranger and pass all that emotional baggage to someone qualified to deal with it and not just burden friends or family members with the constant "cancer, cancer, cancer" conversations. I can see how that would wear someone down, especially family members dealing with their own version of what's going on. The issue here is that they have admitted that there is a "gap in services" when it comes to dealing directly with the psychological issues brought about by cancer survivorship. Anyway more on this later...
We have a set of appointments to attend in the early part of the week, so we head up on the train to London with the kids on the Saturday and stay over a few extra nights with a view to making the most of some time as a family. I would have loved this to be the case, but I spent virtually the whole two days sleeping or struggling not to fall asleep in public. This often ended up with me having to go back to the hotel and crash out while B and kids went off and visited places and did fun stuff together. I found this really gutting I have to say... I tried my best to be part of it, but the weight of the fatigue just wouldn't let up.
It came time to get to these multiple appointments, first up was the speech therapist. She went though a few measurements of mouth opening and ability to eat and swallow so as to record changes that will occur through the Radiotherapy. We also got to speak about what the GP had said about the role of depression and anxiety in all this and she mentioned that The Marsden has its own systems in place to deal with the patients specific needs and that she would set up meeting for as soon as my treatment began after Christmas. This sounded more like it...! We then went on to see Prof Nutting. All the tests and biopsies were in and he confirmed that I have the exact same cancer as before and echoed how delighted he was that the results of the neck node were a false alarm and how this adds to the chances of getting the cancer gone. He checked out the area where the surgery had been done using a flexible endoscope and confirmed that it is 50% healed and looking good. He then went on to tell us that radiotherapy treatment will begin daily from January 4th for six weeks. There will not be Chemotherapy and he will only be using radiation on a very small/select area where the remaining cancer cells are laying in the lining of my upper throat behind my nose. He then drew a diagram showing how the beam of radiation will pass through both sides of my head just in front of each ear and meet in the center where the remaining tumor cells are located.
This means a few really good things regarding the impact of this treatment. I know first hand how brutal radiotherapy can be to the head and neck. The last time I had it my mouth, tongue and throat completely shut down and had to take liquid food, fluids and medication trough a tube in my stomach for well over three months. I lost about four stone in this time and for a time thought a might not make it... it was very rough indeed. Re-irradiating this area is not with out a whole new set of risks and issues, but fingers crossed this time should be know where near as severe.
Prof Nutting rounded off our meeting by saying how this is still a very complex issue, but he was very happy with how things are going. " We have done the kind of salvage procedure before with great success, touch wood this is the same..." and having dropped that little nugget of positivity we all shook hands and left for the next appointment feeling a little bit happier about things.
The next appointment was to have my mask made. This is a Kevlar mould that holds the patient's head still whilst having the Radiotherapy. It’s a pretty relaxing process, the composite sheet is heated using hot water and then placed over your face and shoulders as you lie on a metal bed. "They call this The Chelsea Facial" said the assistant..."Better than The Chelsea Smile!" I mumble through wet layers of plastic. It takes an few minuets to cure and I'm released back into the world...
I return the following day for a CT scan wearing the now fully hardened mask and that's that, no more hospital's till January all being well.
We get home late on Tuesday night, it’s been a loooong weekend peppered with good bits and very tired bits. The kids have loved spending time with family and seeing a little bit of London, but it's very nice to be home and looking forward to a few weeks of down time before Christmas and New Year.
