I am called 'The Cancerous Mole' as I am a voice from the inside of the treatment programme- like a spy in the centre of an organisation, observing and maintaining information.
It is not that I have any moles on my body which are in any way cancerous. Or I hope anyway.
Monday, December 20, 2010
Reasons to be cheerful
So far, I've got through by a positive attitude- highlighting all of the positive experiences I have got out of this treatment so far, for example.
I have been lucky enough to stay at high-tech, brand-new, specialised NHS facilities. For example, the day room at UCH (which I visited with my friends- they loved gawping at the giant plasma screen TVs, stacks of DVDs, Xbox Kinect and piles of board games. I loved the cleanliness and fresh colours, and that I could look out all across London) was simply superb.
There is a fabulous Momentum day room at Kingston Hospital as well, which I am sure I will have the chance to spend time in. Again, it is the colour, new style and cleanliness which I love.
And at the Marsden, they have just opened an entire new facility. I love the blue chairs, they are so calming. I can just read, escape and relax.
I also take advantage of everything offered to me. At UCH, I had reiki. (As a biologist, I am a tiny bit sceptical that the 'chi energy flow' is anything more than simple heat conduction.) But it was so relaxing and detoxing, and that was what I needed.
I have been lucky enough to stay at high-tech, brand-new, specialised NHS facilities. For example, the day room at UCH (which I visited with my friends- they loved gawping at the giant plasma screen TVs, stacks of DVDs, Xbox Kinect and piles of board games. I loved the cleanliness and fresh colours, and that I could look out all across London) was simply superb.
There is a fabulous Momentum day room at Kingston Hospital as well, which I am sure I will have the chance to spend time in. Again, it is the colour, new style and cleanliness which I love.
And at the Marsden, they have just opened an entire new facility. I love the blue chairs, they are so calming. I can just read, escape and relax.
I also take advantage of everything offered to me. At UCH, I had reiki. (As a biologist, I am a tiny bit sceptical that the 'chi energy flow' is anything more than simple heat conduction.) But it was so relaxing and detoxing, and that was what I needed.
Perhaps I should have mentioned...
Maybe I should have given some more firm facts about my treatment in my initial introduction. The most positive thing in my treatment is that what I have is over 95% curable.
I am on a two year treatment programme, which sounds long but is mostly made up of long maintenance periods with little intra-venous chemo except in a few intensive blocks.
I am mainly in outpatient (unless there is infection).
And a little about me. I am studying English Literature, French, Latin and Biology for AS Level at school. I was lucky enough to be able to return to school for the final week before Christmas, which gave me the glimpse of normality I desperately craved at the time. I am genuinely interested and fascinated by all my subjects and intend to revise, work and take my AS exams to the best of my ability.
I am on a two year treatment programme, which sounds long but is mostly made up of long maintenance periods with little intra-venous chemo except in a few intensive blocks.
I am mainly in outpatient (unless there is infection).
And a little about me. I am studying English Literature, French, Latin and Biology for AS Level at school. I was lucky enough to be able to return to school for the final week before Christmas, which gave me the glimpse of normality I desperately craved at the time. I am genuinely interested and fascinated by all my subjects and intend to revise, work and take my AS exams to the best of my ability.
Caption
I have decided to sub-head my blog:
My step-by-step guide to beating this thing.
Because there's always hope.
My step-by-step guide to beating this thing.
Because there's always hope.
Distractions
I am not the ideal person to be diagnosed, partly as I started my treatment with the biggest fear of needles and blood and other pointed objects of anyone at my year at school.
I cried at my last injection, broke down screaming at a recent blood test.
I had to have a canular put in for my initial biopsy at Stanmore. I let them do it, and their attempts to calm and distract me were actually entertaining. Do I have a boyfriend? Nooo! I moaned. Are there any guys I like? (My mother is clutching my weak hand) Well yes, except now the poor guy I thought of will always be slightly associated with the insertion of a spike into my skin and subsequent controlled passing out.
(General anaesthetic- that's another story. My mum says I am hilarious when I wake up. I wake up in a dream, declaring that everyone around me is 'lovely'. Last time, my mum ventured as far to say that I am going to be cheap to get drunk.)
My next canular insertion was not such a pleasant experience. They failed at three attempts to put it into my vein. (I had been starved for general anaesthetic, but it was painful. And they didn't just fail, they rummaged in my skin. I had developed a new phobia now, and worse than before as it was now based on evidence, not psychology.)
Eventually they put it in my elbow. They distracted me for two seconds by showing me my oxygen chart and it was done. And I was once again asleep.
That canular stayed in for a week. It was uncomfortable and painful, but I got used to it. When I went for my next general anaesthetic, they tried to flush it. And it hurt. I broke down. I gained a new fear. They put me to sleep by gas. I only spluttered once, before dissolving into a sea of plasticky, artificial odour gas. (Which in my mind was pink and sickly.)
I woke up with a new canular in the back of my arm. Its position was thus it couldn't be inserted when I was awake and it was the fear of the hole in my arm when it came out that actually freaked me out more than the concept of it being there.
I've had two other blood test experiences which were painless, just moved by fear. I delayed a simple blood test by half an hour out of pure terror. I was screaming and writhing and I'm not even sure why. I was just so scared of pain. It was only the thought of delaying it by another 12 hours which finally scared me into it.
The lovely support people tried to help me. I've tried stress balls, sparkly glitter objects, Where's Wally-style picture books. All fabulous before, but when the needle goes in I just need to close my eyes and have my mother near me. It's all that gets me through.
I also panicked before my penultimate blood test. I felt like I was being forced with my arm. I only let them put it in my arm after I'd put on the tournaque. I'd positioned my arm. I'd put it on the pillow. I had control.
And my blood test today was fine. No issues. I'm making progress.
And injections? They are fine. Just give me some cold spray and do it in my leg and quickly. At least I'm over that.
I don't want to spook anyone out by this. You don't even have to read this, and everyone is different. I am getting over my fears more and more each time. Everything will be all right.
Keep telling yourself that. It helped me.
I cried at my last injection, broke down screaming at a recent blood test.
I had to have a canular put in for my initial biopsy at Stanmore. I let them do it, and their attempts to calm and distract me were actually entertaining. Do I have a boyfriend? Nooo! I moaned. Are there any guys I like? (My mother is clutching my weak hand) Well yes, except now the poor guy I thought of will always be slightly associated with the insertion of a spike into my skin and subsequent controlled passing out.
(General anaesthetic- that's another story. My mum says I am hilarious when I wake up. I wake up in a dream, declaring that everyone around me is 'lovely'. Last time, my mum ventured as far to say that I am going to be cheap to get drunk.)
My next canular insertion was not such a pleasant experience. They failed at three attempts to put it into my vein. (I had been starved for general anaesthetic, but it was painful. And they didn't just fail, they rummaged in my skin. I had developed a new phobia now, and worse than before as it was now based on evidence, not psychology.)
Eventually they put it in my elbow. They distracted me for two seconds by showing me my oxygen chart and it was done. And I was once again asleep.
That canular stayed in for a week. It was uncomfortable and painful, but I got used to it. When I went for my next general anaesthetic, they tried to flush it. And it hurt. I broke down. I gained a new fear. They put me to sleep by gas. I only spluttered once, before dissolving into a sea of plasticky, artificial odour gas. (Which in my mind was pink and sickly.)
I woke up with a new canular in the back of my arm. Its position was thus it couldn't be inserted when I was awake and it was the fear of the hole in my arm when it came out that actually freaked me out more than the concept of it being there.
I've had two other blood test experiences which were painless, just moved by fear. I delayed a simple blood test by half an hour out of pure terror. I was screaming and writhing and I'm not even sure why. I was just so scared of pain. It was only the thought of delaying it by another 12 hours which finally scared me into it.
The lovely support people tried to help me. I've tried stress balls, sparkly glitter objects, Where's Wally-style picture books. All fabulous before, but when the needle goes in I just need to close my eyes and have my mother near me. It's all that gets me through.
I also panicked before my penultimate blood test. I felt like I was being forced with my arm. I only let them put it in my arm after I'd put on the tournaque. I'd positioned my arm. I'd put it on the pillow. I had control.
And my blood test today was fine. No issues. I'm making progress.
And injections? They are fine. Just give me some cold spray and do it in my leg and quickly. At least I'm over that.
I don't want to spook anyone out by this. You don't even have to read this, and everyone is different. I am getting over my fears more and more each time. Everything will be all right.
Keep telling yourself that. It helped me.
What I've done, People I've met.
As part of my treatment, I was an inpatient at the fabulous Teenage Cancer Trust Unit at University College Hospital London for ten days while I had my first chemotherapies, lumbar punctures, injections etc.
The facilities there and people were truly amazing and the sheer courage of some of the other teenage patients just completely humbled me. I got to know some of them through pizza parties and passing conversations and was very sad to leave them behind when I left.
There are so many different forms of the big 'c' disease- you can't fully comprehend how diverse and different each case is until you meet someone with it.
But I left UCHL inspired and optimistic and hopeful, despite that my treatment was just beginning, for some their journeys were finally looking up and over.
The facilities there and people were truly amazing and the sheer courage of some of the other teenage patients just completely humbled me. I got to know some of them through pizza parties and passing conversations and was very sad to leave them behind when I left.
There are so many different forms of the big 'c' disease- you can't fully comprehend how diverse and different each case is until you meet someone with it.
But I left UCHL inspired and optimistic and hopeful, despite that my treatment was just beginning, for some their journeys were finally looking up and over.
Side Effects
Basically, I've been very lucky so far with side effects.
The most noticeable changes in me have actually been positive- increase in optimism, energy and appetite (although not weight yet- despite the salty, meat-filled diet I have become accustomed to crave).
Let's start by talking about the food. I've had cravings for spaghetti carbonara, Hula Hoops, cocktail sausages, chicken and vegetable soup, Subways etc. I've also had memories with the food I craved- the most delicious M and S thai green chicken curry for example, which just was perfect with the idyllic music and tone of Nigel Slater's Simple Suppers. I've gained an appreciation for food in a total new way- I enjoy and savour it.
But also, I've had a massive boost in creativity and expressionism. I want to write. I want to sing. I want to show people what I think. I don't want to forget things. And I've no choice but to take that as positive.
The most noticeable changes in me have actually been positive- increase in optimism, energy and appetite (although not weight yet- despite the salty, meat-filled diet I have become accustomed to crave).
Let's start by talking about the food. I've had cravings for spaghetti carbonara, Hula Hoops, cocktail sausages, chicken and vegetable soup, Subways etc. I've also had memories with the food I craved- the most delicious M and S thai green chicken curry for example, which just was perfect with the idyllic music and tone of Nigel Slater's Simple Suppers. I've gained an appreciation for food in a total new way- I enjoy and savour it.
But also, I've had a massive boost in creativity and expressionism. I want to write. I want to sing. I want to show people what I think. I don't want to forget things. And I've no choice but to take that as positive.
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