Week 2: The marginalisation of the damned…

At the end of the 1st week’s treatment, my wife and I met with a support worker from the charity ‘Daisy’s Dream’ to get more advice on how to support our kids through this situation. Mrs T. came to see us at our house and she was great. Some of the people that I’ve met through this experience just command such respect for their tact, kindness and more importantly expertise and knowledge. Her perspective on how we should develop our support of the children was truly inspirational. In addition to talking about the kids, she also asked me if I wanted to get any counselling which she could arrange for free through McMillan. I had been thinking about the possibility of doing it. I’ve never taken any counselling before but do really believe in it as a concept. I realised this was a difficult period in my life and it could be of benefit. To be honest at that point, I wasn’t really sure exactly what I wanted to talk about. I didn’t feel that I had any major unresolved issues in my life that were ‘haunting’ me in relation to the concept of my death, but, decided to accept the offer anyway. She said she would make some arrangements and someone would be in contact. When I started the second week of the chemoradiotherapy, my blood tests were fine (so I could receive the 2nd weeks worth of Chemo) and I was still feeling pretty reasonable aside from the slight tiredness. I also noticed I was feeling a bit more sensitive about what was happening to me than previously. I think because the impression I got from Dr. D. was that this treatment was going to be very gruelling and unpleasant, I was expecting the symptoms to be unmistakably ‘radiation’ like. I thought that I’d be able to tell what was real and physical and coming from the treatment. However, at this point, I couldn’t tell if the feelings I had of tiredness and being a bit vulnerable (and paranoid actually) were coming from the treatment, or just part of the swirling undercurrent of emotions that were constantly within me, as I contemplated my predicament. Was the radiation making me think differently, or was I just thinking differently? It was very difficult to sort through. Whatever the reason though, I started to notice (whether paranoid or not!) subtle changes in some of the interactions I was having with people (particularly the medical staff that were looking after me but others also) that were starting to really bother me. Sometimes it was a slight air of indifference at the beginning of an interaction. Sometimes it was a (sometimes real, sometimes feigned) ‘look’ of curious pity. Sometimes it was a sort of ‘we’re just going through the motions’ undertone in an exchange with people (particularly the radiotherapy staff). Sometimes it was a subtle ‘distancing’ from people that were close which I started to read as a kind of unconscious preparation for a time when I might not be around any more. This slight, almost unnoticeable experience of a weird ‘change in status’ in the way that people were interacting with me really took me off guard. I hated it, I felt diminished. These changes initiated an internal magnifying glass on what was happening to me and I started to think about all the autonomy I had lost in the 2.5 short months since I’ve had my first seizure. After 25 years I had overnight lost the capability to drive. I couldn’t work and a career that I’d spent over 25 years nurturing had (at the very least) the pause button jarringly stabbed on. I couldn’t take my own kids out on my own - I couldn’t even read them a bed-time story without stumbling through the words with real difficulty. Suddenly I was reliant on family and friends for things that any healthy adult wouldn’t even notice as a given capability. It was like a death of a 1000 cuts and for the first time I started to resent that greatly. Even the loving help that family and friends were offering (often desperate to show me love and support) sometimes started to feel dis-empowering. I’m not a fucking child I thought! This is intolerable! On the 2nd day of the 2nd week, an incident happened that unfortunately (maybe fortunately though in hindsight!) bought all of this muddy bog of festering emotions to a sort of head. I was waiting for my session of radiotherapy and from where I was sitting in the waiting area, I could hear everything the radiographers were saying in their work area and they were chatting having just finished with the patient that immediately preceded me. One of the guys who often treated me had turned to him co-workers and said “who’s next? let’s have a look…”, he had then obviously looked at the list and then said in a sort of comic, mocking tone “ah - Mark Willing. When, I hope that he is willing to have this treatment!”, which was responded to with a couple of laughs by the other team members. Whilst it was all accounts, the very gentlest of ‘jibes’ and undoubtedly nothing more than a throw-away comment at the time, I was absolutely incensed. It took me back to being a school child where being mocked for the name ‘Willing’ was an every day occurrence. It crystallised and highlighted the building feeling within me that I had lost capacity, standing and autonomy. Here I was again as a child being mocked and powerless to control it. When I went in for the session, I didn’t immediately say anything - partly because I hadn’t had a chance to think through how to react and partly because I was thinking ‘never piss off a radiographer before they put radiation in your brain!’, but I was fuming through the 15 minutes that I was strapped to the metal bed and the treatment was performed. When they finished and they unclipped the mask, I didn’t get off the bed and instead said the following; “Do you mind if I share something with you?”, they earnestly gathered round and looked at me. “I’m 42 years old. I’m a father to two kids, one is 5 the other is 4. I’m a husband. I’m also terminally ill. As you can probably imagine, this is a difficult time for me and I think it’s fair to say that I’m feeling a bit more sensitive than I would be normally. Now, I don’t think you guys realise this, but I can hear anything you say in your little room from the waiting room out there and so, I heard you mocking my name just because I came in here. I’ll be honest, to hear that from the people about to treat me, it felt demeaning. I’m asking that you please don’t do that again.”. I looked at the guy who had said it and all he could do was splutter “erm, OK”. I got up and said “I’d appreciate that, see you tomorrow” and walked out. I was pleased with myself for saying something, and remaining calm; it would have bugged me all day if I hadn’t of. But it still bugged me all day and I knew I wouldn’t feel OK about it until the following days session was over. The good part of what had happened though was that the whole event allowed me to perfectly articulate to myself what I felt was happening, so when I was able to meet my counsellor on the Friday that week and she asked me “do you know what you want to talk about”, I said, “if you had asked me that a week ago, I wouldn’t have had a clear answer, but….”. I’m not going to regurgitate my counselling session and I talked through a lot of really personal shit, but my therapist was perceptive and razor sharp, she really helped me get things into context. Something she told me really had a big impact. She said that people in my situation often find themselves being marginalised, in lots of ways and for lots of different reasons. She said that the advice she wanted to give me was “don’t allow yourself to be marginalised. If you see it, then call it out. You have a right to exist. Accept the autonomy you’ve lost, but hold on to the autonomy you still have. Stand up for yourself and let others be counted to do so”. It felt fucking brilliant. Finally, it felt like someone in the ‘medical’ world was actually on my side. I walked out of that session standing taller than I did on the way in, and with another week under my belt I was still intact, still here and very ready for the next week of treatment to come. Go here to the start of the journey. Go here to view next blog entry. Go here to view previous blog entry.