Monday, 14 October 2013
The Journey of a 20 Something Year Old with Old Man’s Cancer
Diagnosed in a day in 2007, it’s not the usual story when talking to people, especially young people with a cancer diagnosis. I didn’t think much of losing weight fairly gradually over about 6 months, other than eating a bit less, and exercising a bit more, or the handfuls of hair that came out in the shower when I washed it. Nor did I think much of being noticeably more tired than usual. But nearly feinting twice, that was a bit odd. In fact it was that which prompted my visit to the doctor. In the space of a week I felt like I was going to feint twice. Once in the kitchen of the flat I was living in in Edinburgh, during my third year of Uni and once was in the second lecture of a brand new module. Highly embarrassing asking the lecturer if I could leave the room to sit down as I felt I was about to keel over. Nothing like being branded the class hypochondriac in week two of the module…. So Friday morning dawned and I was woken up by my flatmate with a mug of tea to ensure that I made it to the open surgery at the doctors. I remember sitting there feeling quite out of it, not really able to focus on much and just feeling, well, fucking exhausted. When I was called in I explained to the doctor that I didn’t feel ill but I didn’t feel well. My hair was coming out in handfuls when I washed it and I nearly feinted twice in a week. She said she didn’t know what it could be so took a blood and urine sample to be tested. I remember walking back to the flat and phoning home to say that I had been to the doctor and she thought I could be glucose intolerant. My first thought was shit. No more drinking!! And then forgot about it for the rest of the day. That night, whilst in the middle of making a highly nutritious supper of super noodles which, thinking about it, I haven’t eaten since, as I couldn't be arsed to cook anything, the phone rang. A woman asked if she was speaking to Katherine Ruane and did I have a blood test today? I said yes and she said they had the results. I said, great! As I was told to go back in a week for them. She then told me I needed to come to the hospital now. I asked why. She said she couldn’t tell me over the phone so I said that I wasn’t coming in. She then said that someone else would ring. I then phoned home and burst into tears saying that they had found something. My father immediately responded saying of course not; don’t be silly, you are fine. The next call was I think a doctor, but to be completely honest, I can’t remember, and he offered to come and get me and take me to the hospital. I explained that I would go; I just needed to know what was wrong as my parents were over 400 miles away and I wanted to phone them and tell them what was going on. He said he’d ring back. When he rang back he said because I seemed to be taking it well – shock is a wonderful thing -, he told me they thought it was cancer. I said I’d be in soon. I then phoned home again and told my father it was cancer. I asked if my mother was home yet. She did this very clever thing of disappearing in the supermarket for hours on the way home. By this point I had two friends over, one to drive me to the hospital and the other to help get some things together as I didn’t know how long I would be in hospital for. After about half an hour my mother still wasn’t home so I rang her mobile and told her. She was in the bread isle.
Hospital was pretty fun. There was Doctor Dave who used to hang out with me and get in trouble because he watched DVDs with me, brought me proper mugs of tea rather than those pathetic little two mouthfuls and it’s gone cups that were brought round, and flirted rather than do any doctoring. The nurses were also amazing. And I had my own en-suite room, so all in all I loved it. I didn’t realise the reality of the situation and that I was actually really ill because I basically still felt fine …. My consultant on the other hand was fucking awful. I didn’t want to do her trial so after her pressuring me for a week to do it and only explaining everything is doctor, I decided against it because of possible side effects, and thank god I did! and she sent me home straight away. That was just as much of a shock as being told to go into hospital... I had become used to my safe cocoon and hadn’t left the room that week and was told I could be there for weeks. I had a wonderful relationship with George, my drip, and even got vaguely used to him beeping every four hours. I still sometimes hear it in my head…. I have never lost my hair, although my sister said she would shave her head if I did which to be honest, I’ve always been a little bit upset that this didn’t happen. And I’ve never been in an ambulance which upsets me even more. Both siblings have and I was the ‘ignored middle child’ until my cancer diagnosis. Apparently if I hadn’t gone to the doctor on that Friday morning I would have been in an ambulance within 48 hours as my body was gearing up to collapse. I’m quite upset to be honest that I did go to the doctor because this would have made it a much better and dramatic story!
I’m not going to focus on the complete and utter lack of patient care from my consultant. She didn’t know what to do with me as I was at least 40 years younger than her other patients. In Edinburgh I called my clinic gods waiting room because everyone was about 80 in wheelchairs with wheelie oxygen tanks and then there was me. Aged 22 and able bodied. Or the fact that I was so intolerant to the pill form of chemo I was on and she ignored what I was saying. Daily. The side effects started within a couple of weeks. My skin started to get really prickly and itchy and sore and then there was pain. I can’t really remember it. I had to move back home as I couldn’t look after myself anymore. As I was told that the drugs were so amazing and fantastic and wonderful and that I would feel better than ever and never know I had been diagnosed and wasn’t I so lucky etc etc et blah blah blah I attempted to stay in Edinburgh and carry on with my degree. Yeah fucking right. It was hideous. So home I went taking dhydracodeine and ibuprofen every couple of hours and throughout the night as every time I turned in my sleep the pain woke me up. I had an hour and a half’s pain relief a day. Two 45 minute really hot baths as for some reason that stopped it. It was these baths that got me out of bed in the morning and downstairs, and then up the stairs back into bed at night. I phoned my consultant every day telling her how I felt and she just upped the pain killer dosage and frequency. She also said that I shouldn’t be feeling like that as the research showed that I wouldn’t. I think this was another reason my consultant ignored what I was saying. I was too young and ‘healthy’ to feel side effects. I was taken off that chemo on Easter Day 2007 by the on call haematologist at the hospital as I was crying down the phone so much I couldn’t talk. It was only about 3 months, maybe less, but it felt like eternity and at times I thought death would be a relief. I have since found out that I am possibly the only person who has reacted like that.
So the drugs. My aim since day one has been to come off them as they make me so tired. Chronic fatigue is SO fun. I am currently off them to see if it makes any difference and I feel alive again for the first time in so long. I can’t actually remember the last time I felt like this. I have been on treatment for 6 years and 8 months, nearly a quarter of my life and I have been living in a fog.
Guilt. Huge amounts. For still being alive when others aren’t. For having basically completely non-invasive treatment. Can I really whinge about being tired? I still have my own life, don’t have a carer or live at home, even though my mother frequently tells me I can move back home whenever I like. I think she is in denial that I am 30 next year… Oh shit, wasn’t going to say that, will NEVER be asked to do anything TCT related again! And thinking about it, maybe I shouldn’t act like a 5 year old every time I go home….
And Anger. Huge amounts of anger. My life was stolen from me at 22 and I’m still trying to get it back. In order to cope with the day I need 10-12 hours sleep and I have become a master at juggling my time and what I do. Continuously having to bail on friends as I can’t face seeing them as going to the bus stop is just too much. I have phoned home at times in the middle of London and started crying as I can’t face walking any more to the bus stop or tube station I need to get to, to go home. Anger at people not understanding I’m tired, or getting angry when they try and sympathise because I think you haven’t got a fucking clue. Anger at myself for thinking I’m being selfish and whinging all the time.
Limbo land. Sick of not knowing when I can come off the drugs permanently. There was meant to be a trail over a year ago…… I finally feel like things are moving forward with a different consultant at the Hammersmith who halved the dosage to see if that helped my tiredness and then took me off the drugs for a month to see if they did. It has helped so I’m off them for a further 4 weeks. I’m fed up of technically being in remission but still needing treatment. I sometimes wish I hadn’t responded well and had the bone marrow transplant I was originally down for but then who knows what could have happened. I often feel like I am living in a parallel dream world and this is not really my life, and the reality is that I am completely healthy, able to do what I want when I want without having to continuously bail on people because it gets to later in the day and I’m too tired or the thought of going out and doing something is too much.
Fertility. The first lot of drugs didn’t impact on fertility but they don’t know, or didn’t know about the current lot when I was put on them. Luckily my London consultant was on the ball enough to ask me if I wanted to have children and within 3 days I had to decide on eggs/embryos or ovarian tissue being frozen. I then found out ovarian tissue wasn’t an option so eggs or embryos. I was put under a lot of pressure by the IVF consultant to have embryos frozen and I also had pay so I had to borrow the money. I want to have whoever I end up withs children, not a sperm donor – why would I want a random man’s child? , so I had to be strong and stand my ground. The clinic was quite amusing though because of the looks I got when I went with my father. Was quite tempted to go round the waiting room and explain to everyone he was my father, not my boyfriend or husband. Ironically in Edinburgh I refused a trial because of possibly having to inject myself and I ended up having to do it anyway. And before 9am. Joy. So I have, I think, 17 eggs frozen and after paying the first lot of storage myself with the help of Macmillan, my PCT now pays for it. So, having children. At the moment I am single and at university again training to become a Naturopath which is a complementary/alternative therapist and don’t have time for a baby at the moment. But what if I did. Am I fertile? I don’t know and don’t want to know at the moment. Finding out I’m not is too much to deal with. But I can’t get pregnant when I want; it’s up to my consultant and when I can take that amount of time off treatment. My life is dictated by the hospital.
Change. I hate change. Who will I be when I am not longer a cancer kid. I have done so many wonderful things and met so many wonderful people because of my diagnosis. Will I still be special? Will people still want to listen to what I have to say? I joke that I was the ignored middle child but at a level it’s not a joke. Cancer has given me the opportunity to truly shine. Maybe this would have happened anyway but that is another me in a parallel universe. I wouldn’t change this. I would change aspects of it in a heartbeat. Having cancer has made me me. It has meant that I can be here on this stage sharing with you what I have been through and what goes on inside my head. It has meant that I can make jimmyteens video blogs and some of them have been watched 100s of times. I am a peer reviewer for the NHS and can directly impact on others care in hospital ensuring that what happened to me can be prevented. I have been given a voice to speak for the lost tribe, which is us, all the cancer kids who are not known about as people think only children, older adults and the elderly get cancer.
Social isolation whilst still with friends. Not being with other cancer kids. This is a tricky one as I, in the beginning, purposefully distanced myself from other cancer kids as I thought it would be me and then a load of bald people with drips. I was terrified of that and wanted to surround myself with familiarity and my healthy friends. I also wanted to be the only special one and let’s face it, I don’t want to meet someone female with CML who is younger than me because they will steal my thunder! I have also, therefore, felt very alone and isolated as I don’t know anyone at my clinic and they are all old. I rarely see the same face twice. But saying that, at the hospital a couple of weeks ago I saw a face I wouldn’t mind seeing again. We both kept on looking at each other, I think it’s because we were the youngest there… I reckon he was about 35, tall, dark and handsome…anyways, enough about him. Maybe he will be there again…..When my friends have done their best to be supportive and give advice I do get frustrated that they don’t have a fucking clue and then feel like a hideous friend. Because I am lucky, I do have the most incredible set of friends who have stood by me and supported me every step of the way but no matter how hard they try, they don’t get it. Why whine to me about your job that you don’t like? Get another. Unhappy in your relationship? Dump them. These are all things in your power. I’m helpless in mine. It’s down to the consultant and the pharmaceutical company and trial research as to when I can come off treatment. Because, no matter what else happens, I am determined for this to happen and due to this I have made as many changes as possible within my power.
I stopped drinking, not immediately, I did become just a little bit of a drunken liability, I think I was trying to drink all the alcohol in Edinburgh to prove I was fine with everything! I also try to avoid sugar as much as possible and make a mixed fruit and veg juice for breakfast with protein and chlorella powder. It actually tastes much better than it sounds! I also implement as much self-care are as possible learnt through my degree and have a written blog and do jimmyteens videos to help process what’s going through my head and to get it out.. It’s also opportunities like this where I can share my story and hopefully inspire and motivate and give insight into what it’s like for us, just trying to get on with our lives and dealing with being cancer kids at the same time. It is also all of you who motivate me to keep going and inspired me to drag myself around the streets of Newcastle for the Great North Run in 2009 after attending FYSOT in 2008 and finding out about TCT for the first time and being completely blown away, and then most recently around London for the Marathon last year.
And it’s because of you guys that I feel so honoured to be up here to share my story and give meaning to why I was given a cancer diagnosis of old man’s cancer – chronic myeloid leukaemia on January 19th 2007.