What if we viewed lived experience as an asset? As an asset of professional, economic,…
Recently there was a programme on Channel 4 called My Last Summer, about five terminally ill strangers who get together to prepare for the best death possible. We laughed with them, cried with them, watched them deteriorate and watched as three of them died. In my eyes, it was a wonderful programme and showed you the realities of living with a terminal illness. It really makes you think. It was a bit close to home, knowing that it will be me one day, but hopefully not for many years to come. If you didn’t watch it, head over to 4OD to watch all four episodes.
|Picture from Channel 4|
At the first meeting, we saw them introduce themselves, their families and what their terminal illness is. We meet Junior, who has Prostate Cancer; Jane, who has Breast Cancer; Andy, who had Leukemia, now has terminal heart and lung damage and an incurable lung infection called Pseudomonas; Lou, who has Motor Neurone Disease; and Ben, who has Lung Cancer. They come together four times in total. Some of them discussed ending their lives rather than facing the end stages of their illnesses, others believed that they should wait for nature to take its course. Some of them refused treatment: Jane didn’t want to devote the rest of her life to chemo and Lou didn’t want a feeding tube or breathing machine, but both changed their minds in the end; Jane had radiotherapy, and Lou had CPAP/BiPAP to help her breathe when she needed it, such as at night.
Junior deteriorates the quickest, and passes away in the third programme. Next, Jane passes away, and then Ben. As far as we know, Andy and Lou are still alive. I admire each and every one of them, and would love to have met Jane while she was alive and I’d love to meet Lou if she is still with us. I just felt a connection with them, despite not having Cancer or MND.
One part that really struck a chord with me was when Jane revealed she had a daughter, Angharad, who is severely mentally disabled. Jane was saying how, for Angharad, there is no good time for her to die. Jane could live till she was eighty and that still would not be a good time for Angharad. She only has a mental age of a two year old and cannot talk. Jane was really sad, scared and worried that something would happen to Angharad, that she’d be beaten or abused and she won’t be able to tell anyone. Jane was saying how there is no love like that of a mother, and nobody will love and care for Angharad like she does. How will they look after Angharad like she did? That was so close to home. My mum is the only reason I am alive, if she hadn’t chased and phoned and found someone to help I’d have died 3 years ago. Now, she keeps me alive every day. She does my TPN and IV medication, she is the only person that can do it in the home so without her I’d be in hospital. She does all the chasing, organising, ordering and collecting medications and supplies, getting me the drugs and treatment that I need, taking me to the hospital a few times a month, driving up to the hospitals (most of which are in London) coming to see me and still doing my TPN despite me being inpatient as the less people that touch it the better, medications, preparing medications, central line care, injections, stoma bags, can catheterise, dress wounds…..the list goes on.
My biggest fear, and mum’s too, is that mum will die before I do. What would I do? Who would care for me like she does? Who would understand me like she does? Who would give up their life to care for me like my mum has? Who would get up at 3am and do my bags, and help me change my bag when it’s blown off? Who will do all my paperwork and phoning? Who will take me out? Who will do my TPN and IV medication? Who will do all that she does? And how will I cope without her? My mum is the reason I cope. I honestly don’t think I could do it without her. She gives me the strength, keeps me happy, supports me and keeps me going. Who would love me like she does? There is no good time for my mum to die either, as I will need her until the day I die. I don’t hope or wish I will die – I don’t want to die, I’m terrified of dying – but I want to die before mum does. I will always need my mum, I am dependent on her for everything.
It really makes you think about what you’d want and hopefully it will encourage people to get their wishes down and to make a will or plan. It certainly made me think and made mum and I talk. My wishes are known, I have a care plan with my wishes in it, and I have a document with things such as music for my funeral and who I’d like there in it. I wonder if, or when, I will know it’s the right time to stop treatment, or when to refuse things like being kept alive by machines and whether I want to be resuscitated. I am kept alive by machines now technically; without the pump giving me my TPN and medication I wouldn’t be here. Right now I’ll do everything I can to survive, but will I ever reach a point where I feel enough is enough? People don’t talk about death as nobody likes to face their own mortality, it’s usually not until you are hit with a terminal or life limiting diagnosis that you think about it.
I am classed as life limited due to the complications my conditions have caused. When I started TPN in 2011, aged seventeen, my TPN team said “we’ve got patients who have lived twenty-five years on TPN”. I thought, knowing I would die without it, that was a reasonable amount of time I could live for. But my mum was horrified; all she could think was that twenty-five years would only get me to age forty-two. My consultant won’t estimate an age; I could only have five to ten years, but equally as much I could make it much longer than that. However, my GP and district nurse have put me on the End of Life Care register, which is usually only for people with one or a few years left. I don’t believe I’m that sick yet; yes I am very poorly and a simple infection could kill me, but I honestly don’t believe I’m there yet. At least I hope I’m not. I just hope, however long I have left, we can get on top of things so that I can enjoy myself and fit a lot into the years I have left.
I have a lot going on in the next few months. I have several infections including two in my PEG site and two in my catheter site. I need six hourly IV antibiotics, but in order to run them I need a second point of access. So on the 7th July I’m going into The Royal London Hospital for a short stay. I will be having a second single lumen Hickman line put in on the other side of my chest on Tuesday 8th. Then I will start the six hourly antibiotics under observation as I am allergic to Penicillin and I will probably be put on a Penicillin-based antibiotic. Hopefully I won’t react severely, but if I do I’m in the right place. On Thursday the 10th I will be having my PEG removed as we cannot clear the site infections and they are making me very ill. I will be taught how to put in NG tubes (nose to tummy tubes) and I will have an NG in for drainage until, some months down the line, I get a new PEG. I am having the Urostomy operation on the 11th August, so I will have a stoma bag to collect urine (at least I’ll be balanced, with a bag each side of my tummy!) and they will remove my catheter as I won’t need it anymore. Once the catheter site infection has cleared and the site as healed, to stop the infection spreading between sites like it has been, at some point I will have a new PEG put in and will get rid of the NG. Once the PEG has been removed and all my medications are in order, I will be allowed to go home. I will be back up in London on Friday the 11th for my Urostomy pre-op. Hopefully all of this, plus my new wheelchair, will make me comfortable and stable enough to be able to sit up again, get out with Molly, back to training and agility, able to do more speaking and go to more events, and well enough to write every day so that I can get more pieces written and really make waves with the books I have planned. I need some quality of life. Give me an inch and I’ll turn it into a mile. I don’t feel I’m asking too much, being able to sit up comfortably and able to concentrate more. But with my body deteriorating all the time, how much quality I get and how long I get it we’ll just have to wait and see.