The MANE issue....

My chemo can cause a strange reaction. By this I'm not talking about the sickness, loss of appetite, stiff muscles or tiredness that I am inflicted with. I'm talking about the strange reaction other people get, when on finding out I'm on chemo, their eyes move upwards to my head and clock that I still have hair...a lot of hair.

My particular chemoptherapy drug, Temozolomide (I think that's how it's spelt!)produces many side effects including the ones above, yet (unlike many other chemo drugs) hair loss is not one of them. So I still have my long hair to do with as I please. Most people are agreed that this is a good thing.

When I first found out I was to have chemo (rather than surgery) this time, a lot of my friends and family were concerned. Bizarrely though I found the mention that I would keep my hair, seemed to appease everybody. "Well that's not too bad then..", "So it's not very strong then?.." . Despite the fact that I regularly feel a shadow of myself regarding energy and fitness, the general concencous is that if I keep my hair, I must be okay.


It's a strange concept. When I had my first run in of cancer six years ago, I had surgery followed by radiotherapy. At that time I'd been growing my hair and it was down way past my waist. Prior to surgery, they had to shave a section away on my right hand side, which was a little unsettling, by the time this had started growing, I had radiotherapy on that side of my head and it all fell out again, with a bit extra for good measure... Luckily with long hair and a selection of head scarfs I was able to cover it up easily, although when it grew back -curly (my hair's always been straight!); it was harder, and I eventually opted to keep it a little shorter until it had grown out a lot more.


I have to admit, dispite the gracvity of a recurrent tumour, even I was pleased not to lose my hair this time, particularly as, in my case, I have a large craniotomy scar on my head which is nicely covererd up by my barnet, and I don't really want it on display.

There are times when I wonder if a person with a cancer, can afford to be vain, but then I think, wanting to look like yourself (or at least having control over your appearance), has little to do with vanity at all. When you become ill, much of your life from diagnosis to treatment (and beyond) becomes such a huge chunk of your existence, that it's hard to know where the cancer ends and you begin...

I'm not a vain person, thankfully. with the mass of scars I own due to my accident in 2001, vanity would be a path to disaster. Thankfully my scars for the main part are hidden under clothing, apart from the summer when I venture into sleeveless tops and dresses and the odd swimming costume on holiday, to be honest though my scars have never bothered me much as they have faded quite nicely, and are a reminder of how far I've come since that terrible time.

If I were truely vain many things would bother me, such as the dry skin I hasve as a result of my treatment. The lovely dribbling that somwtimes occurs when eating due to the remainders of left-sided weakness...

Taking pride in my appearance is important, primarily because it makes ME feel better. Seriously if some idiot has a problem with my scarring, or the way I look, It really is THEIR problem, but I want to feel good about myself.

Going back to the accident, I spent the first month (of four over all) in intensive care, where nurses and doctors faught to keep me alive, so undersandably, my appearance was put to the side. As a result, by the time I was more alert, my hair hadn't been brushed much (let alone washed for about five weeks! Luckily when I was moved to the ward a nurse realised this made me feel uncomfortable and not only washed and brushed it, but also shaved my (jungle-like) legs too! This simple action mad me feel about a million times better.

It's also nice not to look ill. As most people associate loss of hair with cancer, most people will look at me in the street and not realise anything is wrong. I like this, I don't want to be the "cancer girl" anymore than I enjoyed being the "hit-and-run" girl after my accident was featured on the local BBC news, and I had to go everywhere (visably) in a wheelchair for ten months.

I like looking the same as always, and like myself, so like the majority, I find myself agreeing that keeping my hair is probably a good thing...

changing tastes and ice-cold limbs...

I'm aware I've been posting a lot of blog updates over the last week o so, think it's primarily the boredom of not having much to do (ironically even if I did, I'd have no energy to do anything!), so as ever writing becomes my hobby of choice (have also been adding to my story writing in short bursts).
The thing I am relaising about having a brain tumour is that, just when you think you're done with strange suide effects and symptoms, a whole new batch make an appearance.
The reason it's taken two tumours to realise this is simple. First time round I had an operation very soon after dianosis and at least 95% of the tumour was removed, and with it most of the symptoms. Second time round, no surgery and chemo is a slightly slower process.
On the plus side (as mentioned before) I do have use of my lef hand and arm again, and my leg seems to have regained some strength. However I have still extremely numb finger tips ( not quite up to playing Guitar Hero again yet!) and regular bouts of extreme cold in my left arm. Actually as I write this, my arm is icey to the touch, and with this coldness, I get a tingly pins and needles down my arm, and often(especially in the evenings) get cramp in my hand and fingers.
I am also haing problems with my skin. My face now gets incredably dry, so I use a lot of moisturiser every morning and bedtime. And much of my body (mostly my left side feels tender and bruised. I am well aware that bruising is a common side-effect from chemo. At the moment there is no sign of actual bruises on the skin, but I reularly feel like someone has kicked me in the hip and the side of my stomach. Add to this the struggle to eat (I hardly ever feel hungry) and all I can say is this week hasn't been my favourite!

I also find I can't eat a lot of the foods I used to, I feel sick even at the thought of bananas (once one of my favourite fruits) and find potatoes relly hard to digest, milk and yoghurt also taste vey differnt (not in a good way!) now.

I think a lot of these are side effects the average person doesnt think about. When someone finds out you have cancer I think they often assume you feel sick and tired ll the time, but (hopefully!) treatment will make you feel better. Unfortunately, generlly the treatment makes you feel a lot worse, and it's only hope that in the long distant future, you will indeed feel better that keeps you going. Especially when you way up the (not really any) choices. You either feel bad now and keep going, or give up treatment and cease to be- not relly a difficult choice to make!

I am tentatively looking towards the future. I recently saw a great teaching job advertised in one of my dream locations- Paris. After lots of umming and ahhing, I decided there was no harm in at least requesting information as the job doesnt actually start unti Sept 2012, so will keep everything crossed that I'll be feeling better by then, and ready for another adventure.

so it takes 3 cycles to get the "full chemo experience"

As I have said a million times before, no two people's cancers are the same or affect them in exactly in the same way. I can only speak from my own personal experience, which this week has taught me that the third cycle of chemo really sucks! The first two were relatively plain-sailing; not the most fun I'd ever had (ovviously), but not as basd as I was expecting- just a couple hours sickness on the first morning eeah time, and then tiredness for the remaining four days.
However this cycle, which I thankfully finish today, has been a bitch like no other! On Saturday (day one), as per-usual I threw up about an hour after my first dose, unpleasant but expected, I then could barely walk for lack of energy all day.for the remaining four day I have had repeated bouts of nausia- supressed by anti sickness drugs, and have had no appetite at all ( those who know me well know this is extremely abnormal!) I have literally had to force my self to eat, not because I fill sick, but just that I don't feel hungry. At all.

It has been a very weird and exhausting week. I'm not sure why, this cycle has been so much worse than the others, it could be that third time round the chemicals have built up in my system more, it could be that this time it conflicts with my natural monthly cycle (to male readerss, I appologise, I've put it as delicately as I could to spare your sensitive souls! Or it could just be sod's law that from now on it's going to be evil! I really am just clutching at straws when trying to make sense of it, which incidently is what most people with cancer seem to do throughout the journey from diagnosi to treatment and beyond. So if you ask me something and I'm a little vague, don't think it's 'cause you've upset me, more than likely I just don't know the answer!

Ithink the other thing that's beginning to bug me ever so slightly (sheesh- this is turning out to be one long moan-fest!), is the monotony of my day-to-day life at the moment. Last year was incredibly busy for me, I worked hard at my job in Taiwan during the week and spent the weekends like a tourist visiting lots of new places. I had hoped to be doing the same in another country right now. The trouble is not only am I at home all the time but without work I have to find other things to occupy my mind, so I'm not always dwelling on being ill. I have been reading a lot and working my way through DVD boxsets, but have been missing doing new and interesting things - I thrive on change and the unfamiliar, which could explain my reluctance to stay in one place for too long. So I did some research and found that as well as all the expensive masters courses (that I cannot afford!), The Open University also have some free (non-qualification) courses on their website. so I have decided to take some, when I'm awake enough, as a means to use my time a little more effectively- to start with I'm doing a couple of philosophy and writing based courses. It may be a bit geeky ( okay A LOT geeky- who am I kidding?!) but makes me feel like I'm doing at least one new thing. I'm also researching possible holiday destinations for the summer as an "End of chemo" celebration, I'm a little tentative about booking yet until I know what's what healthwise.

The next appointments are for a MRI scan (29th Feb) and a review (2nd March); these are routine checks always carried out at the midway point of treatment, obviously I'm hoping for positive news, but will wait til the results and just deal with them whatever they are.


http://www.justgiving.com/Lucy-Cunnington0

How much preparation is too much?!

I appreciate that each person who goes through a serious illness prepares for it in their own way, and it's important they find the method that works best for them. Generally for me, I cope by preparing myself in advance for all eventualities, but generally (if I'm honest); the worst case scenario. Unfortunately, some people mistake this for negativity and pessimism. I would argue that it's a sensible and realistic coping method.
When I had cancer the first time round, it was dificult to prepare for anything. I started having strange pins-and-needles type twitches in my face and hand and genuinely didn't have a clue what was going on. I did wonder if it was the result of some undetected head injury from my accident four years previously, and along with my GP, thought it might have been some form of epilepsy. And somewhere deep in my subconcious, every now and then I would find the word "tumour?" entering my thoughts. I tried to prepaare myelf for this possibility, but to friends and family suggested it was probbaly some weird nervous thing, or epilepsy- I didn't see the point of worrying them unecessarily. So when it was diagnosed, everyone was surprised except me, because somehow, my gut feeling had always been that it was the worst option...

second time around, there was no kidding myself. I knew the signs and had no doubt the cancer was back, and as such felt it a good idea to prepare family and friends for what was in my mind certain. Afterall a lot of them had gone through it with me last time, so I thought they'd prefer ample warning. However some of the reactions surprised and frustrated me. My family, as ever were great. When I told them I knew what it was, they believed me with out question, the general concensus being that I was most likely right. Some of my good friends, likewise listened and were there for me, knowing that I had had the symptoms before so was knowledgable enough to make a likely diagnosis. Sadly some of my friends refused to listen. I was met with a lot of "perhaps you were tired after the long flight back from Taiwan" (yeah...but have you ever had a fit after flying?), and "it's probably nothing"( except most fits and seizures indicate something...). Every time I insisted I knew what it was, I was told to "stay positive" . Now I know all these people's hearts were in the right place, but the problem is by preparing for the inevitble, I wasn't being negative, I was just setting everything up so thst I wouldn't fall apart when it was confirmed, I was preparing my friends for much the same reason. I was even more surprised following my scan results at the shock expressed by the same people. I'd been telling them for weeks that it was more than likely my cancer had come back, but all their "positive thinking" had allowed them to sink deeper into denial, so I wound up feeling like I almost had to comfort and support them!

IN this instance I am glad to have prepared myself. It wasn't a shock when I saw Dr R, and he has always noted I accept everything calmly. The truth is, one it was officially diagnosed, I felt a lot better as I knew treatment could start. However, then prepration fell apart a little. I was pretty sure I would be having another craniotomy, so started prepring myself for the grim prospect of more brain surgery. Then I was told they wpouldn't operate- something I hadn't planned for, and had to start learning about chemo.


Chemo itself requires a lot of prep. Today I started my 3rd cycle of chemo, and was better prepared than the first two times. I knew I was likely to be sick, so put a bowl in my room, and also decided to wait longer before I ate anything and try and sleep some of the nausia off. I think this has made today slightly better, although I was still ill, I felt better quickly.

The next preperation is for an MRI scan and review with Dr R before my next cycle begins. This is the halfway stage ( i have 6 cycles in total). To me there are only two possible outcomes to prepare for; I don't think I've got any worse. So am mainly ppreparing for the prospect that nothing has changed, or that I've actually improved. For the first time in my life, I may actually be leaning towards the better of the two options. THis isn't because I've sudenly taken a dose of positive pills. It's just tht for once positivity seems to be matching up with reality-the evidence is ther; my hand is back in use (although the fingertips are still numb), my walking has improved, and I'm no longer suffering from pressure headaches leading to vomiting. Unfortunately my energy levels are still low, and Istill dribble occasionally, but with 3 more rounds of chemo to go, these could still get better. Just wanted to prove that I CAN be positive- but only when it is realistic to do so.

Of course there are less pleasing possibilities to prepare fo in life. Ever since the first diagnosis in 2006, I prepared myself for the possibility of a recurrance, hence the manic travelling and life experiences I crammed into the last five years. I am pretty sure when this episode is over I will be prepared again for the possibility of it coming back (perhaps more than ever). Then there is that other grim reality of being a cancer sufferer, for whihc my prepration tends to freak people out. It's the elephant in the room, that nobody wants to mention.

I feel it is likely I will not have a long life expectancy compared with other people. my body has taken such a battering from this and my accident, that I don't think I'll be living to 100! To be honest thi doesn't phae me as much as you'd think- with all my mobility issues, should i live to an old age, I am likely to be severely arthritic and unabe to get around much without help, which for someone as ridiculously independent as myself, would be unthinkable!


Of course although I am prepared for this in theory, I dont really want to prepare for it in practice. If and when a medical practitioner tells me my number is up, I will deal with it and try my best to prepare, otherwise I refuse to even think about it , because sometimes too much prepaaration for the worst stops you from relishing hte good things in your life

The personality change debate

I don't know how many of you are aware of this, but there have been cases reported of people's personalities changing as a direct result of a brain tumour. It would appear this depends on the positioning of the tumour.
Touch- wood I have always categorically said that I am the same person I have always been, but now I find myself wondering can anyone who has dealt with serious illness ever be EXACTLY the same?
I believe that as humans, we are continuously learning about ourselves and the world, never fully growing up, which would syggest that none of us remain the same for ever. Throw in a few life altering challenges in along the way, and you can pretty much kiss childhood innocence away...

My first such challenge was my accident at the very young age of 23. Being forced to take time out of uni, to spend 4 months in hospital in agonising pain, whilst most of your friends are still going out and having fun, certainly makes you re-address your priorities. So did I change? yeah probably. I know that after I left hospital I had to find a strength I never knew existed ( thank god I did, as I've had to rely on it since!) I had to push myself to get back on my feet and keep up all my physio exercises so I could ditch my wheel chair forever. I also began to appreciate my family a lot more, and developed a more tolerent attitude, plus took uni (when I went back ) a lot more seriously.

Then cancer battle number 1 happened. And my usual sense of humour turned decidely black as I found I could make people laugh, rather than worry about me. I also found I could fight against self pity, and that I could cope with illness logically, if I detached thd empotional side.

This time I don't think I've changed much at all. But the skills and character traits I deveoped in those first two instances have definitely helped me to cope. I still enjoy the same things, just generally don't take so much for granted.