I get knocked down...

I get knocked down....h oh, this is not going to be good..." This was the thought i my head on Tuesday morning as I stepped out of the shower and my left leg gave way, completely. One of the joys of a brain tumour is never knowing when it's going to strike: having very little option I let myself fall slowly, then proceded to slide around on the bathroom floor, working out my nect move. In the end I had no choice but to involve my mther so I could at least get her to pass me my dressing gown in an attempt to maintain my dignity (however little remained!) I was then able to shuffle on my backside out of the bathroom to the top of the stairs in order to haul myself up into a standing position. The rest of the day seemed to go better, as I (as planned spent the afternoon drinking tea in my friends garden a long with three other friends and their eight children, ranging in age from 8months to 11 years. It was a lovey afternoon, until I got up to leave - my friend was driving me home. and my leg gave way again and I fell on the gravel path- humiliating to say the least! Lucily one of my friends has been going to the gym a lot and has got pretty strong, so was able to help me up and into a chair very quickly, giving me a chance to recover. I was lucky both times as I didn't sustainany serious injuries, but, as you'd imagine, it has made me a very nervous and ultra careful walker, especially as I can't rely on my left hand and arm for balance Somewhere amongst all these adventures, I also managed to get ill. I woke up on Wednesday, hot , and with a massive headache, moments later I was being physically ill. I phoned the Acute Oncology dervice at the N&N, after talking throuh my symptoms, was told I probably hadthe Novo virus which is going round Norfolk again. Unfortunately my immune system is low, making me more suseptible to thesee " lovely" bugs. On the plus side I didn't have to go into hospital, just as well, can't say I fancied surviving the 25 mile journey. So I have spent most of the last two days sleeping and vomitting. Today I am a lot better and managedto change out og my manky PJs , and actually (with help from mum!) washed my grim hair and now feel less light headed and a little more human. Getting bugs when you're alreeady ill is unpleasant, but the signs weree there, I've felt low all week, hopimng to wake up feeling a lot brighter tomorrow!

The Other "What if..?" question...and Bert.

This is not going to be another depressing rant, promise! There have been far too of those in the last three days and it stops NOW! Since my minor break down on Friday, I have spent too much time thinking about the "ehat if it doesn't work?! question, when I should be focussing on the other question : " What if it DOES?". 'Cause here's the thing. Chemotherapy drugs cost money, and what with the recession and a National Health Service stretched to it's limits, my doctor is not going to waste resources on me unless it has a good chance of doing something! This treatment is my chance to grab some life back and (hopefully) feel a bit more normal (for me anyway!) for a while. I am determined to hope for the best, and to keep my thoughts positive- I HATE emotional Lucy, Sarcastic funny and slightly warped Lucy is much more fun! Oh and in order to not let my tumour ruin anymore of my life, I have decided to name it Bert- after the character in Sesame Street; always liked Ernie, but Bert was a miserable git it's easy to get angry at, but almost impossible to fear a muppet, so Bert watch out, your days are numbered!

All too much...

Firstly a quick apology to anyone I worried with my FB status and/or emotional texts, and to one friend in particular (you know who you are), you have been awsome today, and I am so thankful to have you in my life, infact all my friends nd family are an awsome bunch, hold on tight cause the rollercoaster ain't over yet.... Today, I had what is known in the trade as a "wobble". Dr R asked how I was coping and the next thing I knew was that I'd become a blubbering wreck! It may surprise you to know that today was the first time Dr R has ever seen me cry. I don't make a habit, but I've been so physically and emotionally exhausted, that it was inevitible. He handled it well, and my key nurse Sarah did grab some emergency tissues. He has decided an MRI is not necessary at the moment. Going on my symptoms, he wants to get started on a new chemo regime as soon as possible. This time it'll be a combo of drugs called "Bevacizumab"(Avastin) and 2Irinotecan(Campto) These will be given via IV :( every two weeks for two hours at a time. There is a vast range of possible side effects including hair loss (least of my worries right now) and good old sickness and fatigue (nothing new there..) . I had to ign consent forms again, and then Dr R floored me with the never asked question "what will you do if it doesn't work?" and here's the thing: I don't know. I hope I would find a way to deal with it that causes the least pain to myself, friends and family, but I can't promise it. I want to be okay with dying if necessary, but I'm only 34 and terrified, I'm not ready, and there's o much more I want to do. Perhaps if I had a deep routed faith it would be easier to deal with, but I've bee a practising athiest/humanist for over 20 years and can't see that changing any time soon. I'm hoping to find a little bit of energy to push forward and at least get some quality time before I get really ill, because it will happen eventually, chemo can reduce brain umours, but there is no cure, which again is something I have to come to terms wit. I will be starting treatment in the next couple of weeks, until then I aim to rest as much as possible and welcome any jokes/amusing annecdotes my friends can throw at me. I don't want this to consume me, it has already done far too much...

The impatient out-patient...

the other night I watched a very moving BBC documentary about Ukraine's "forgotten" children. These are children who were born severely disabled, and were allowed to be "given up" to the state by parents who felt unable to cope. This remnants of the Soviet Union, was sadly something I was aware of, having spent 4 months living with a (unusually!) socialist couple and their children during my four months in Russia. Basically Children were diagnosed as "incapacitated" or "feeble-minded", at which point they have no rights to an education or normal future and are sentenced to a life within unsuitable institutions (many live in old people's homes) and no way out. Seeing the acceptance of their lot was truely heartbreaking. One little boy especially got to me. He had no arms or legs, and yet had taught himself to move, was able to almost spin round a room, and using his mouth and a "rocking" motion, could pull himself in and out of his chair. As I watched him, one thought entered my head- "Jeez I'm CRAP at being disabled"! And I really am, predominantly because I'm so bloody impatient, and hate not being able to do things straight away. The truth is, I'm also out of practice, it's been a long time since I've felt so disabled; I've spent 10 years ignoring my limitations and doing the things I want to do anyway- travelling, partying, working hard, the fact I have a limp and the odd bit of pain hasn't seemed that important. I have a hard time relating to the idea of actually being disabled, this may sound weird, but I've never really had to. After my accident I wasn't disabled, I was injured. It was perfectly logical, that I couldn't do things, because it hurt like hell if I tried. Morphine became my best friend, and as my injuries (with the aid of extensive surgery) began to heal, I went to Physiotherapy and hydrotherapy sessions which enabled mr to reach the independence I was striving for. Even the year of wheelchair/zimmer/ crutches didn't make me feel disabled as I still felt like it was temporary, and I would get better, so I guess I didn't bother to use mobility aids as well as I might, figuring I wouldn't need them for long. I have an issue with a lot of mobility "aids", many of them I find a hindrance, rather than a help. At the moment, I use my stick a lot. This on the whole is a help, apart from if it sinks into soft ground, or if the ground's wet, or if you want to carry something (can't use the other hand-remember?)... But generally, yes it helps.. We have a lot of equipment still in place from my post-accident days, inluding grab rails on both sides of the stairs, again these are generally helpful, but my dead left arm has a habit of getting caught on them, making it difficlt to move! To me the most horrific mobility aid ever invented is the shower stool... In theory it should be the best: My legs are wobbly, so sitting down to wash is a brilliant idea... until you're done, and you need to get up by only pushing up with one arm, with only one good (ish) leg, and a slippery soapy shower floor... scary is not the word! I personally feel safer standing, and have now devised a system of taking my old faithful hiking pole ( taller than a regular stick) into the shower with me. when it's time to get out I place it on the floor outside as I step down, so far it's working. For the first time in my life I genuinely feel disabled. This week has been a trial for me. I am beyond exhausted ALL the time, finding it hard to focus- my eyes keep closing as I type this- and spend a lot of my time trying not to fall over. With my left hand as it is, I feel like I only have half of a functioning body, which is hard to deal with physically and psychologically, and have also had to deal with taking steroids that don't work ( you can't just stop, you have to be "weaned" off) but have made my face fatter and my hand puffy- all great for self-esteem! I am glad to be seeing Dr R on Friday, I feel he needs to see how bad I am, and am hopeful it may kick start some kind of treatment, as I don't want to wait much longer. I am also concerned that my parents may end up cancelling their annual holiday to Yorkshire- there's no way they could leave me in my current state, hopefully if that happens, they can reschedule to a later date. Sadly a reminder that cancer affects more people than just the patient...

Further adventures....

It would be fair to say this hasn't been a great week for me. After starting a course of steroids (Dexamethasone)on Wednesday, I eagerly awaited for my symtoms to reduce, and for my mobility to improve, and to start using my hand. Only it didn't quite go according to plan... There has definitely been no improvement to speak of, in fact if anything there's been a decline. I am now using my stick for walking in and out of doors ( without it, walking is far to risky- my leg tend to give way. a lot,), My hand is completely non- functioning; back to getting my mum to put my hair up. I am back to using a shower stool (thank god we kept that ten years ago!) as I don't trust my legs to hold out when I'm washing. On top of all this (if it's not enough!), I have also been battling extreme drowsiness/ exhaustion, having to spend most of my time resting and having naps during the day. None of this is good, so today I phoned the acute oncology line at the N&N hospital (it's the only line available at weekends) to get some advice. The nurse who spoke to me took down full details of my concerns, and advised me to call Sarah, my key worker nurse tomorrow morning. She may decide to have me in for assessment (whatever that involves...?! ), to determine what is going on. It's quite worrying as usually Steroids start taking effect within 8-24 hours, so the fact mine have done nothing in 5 days is cause for concern... Hoever, as always, there's no point worrying unless I have to, so I wait and see what gets decided over the next few days. Meanwhile, if I can find a smidgeon of energy this week, I'll try to add something to my new but pathetically bare creative writing blog and attempt to exercise my leg and hand if possible. Will as ever keep you all updated....

Getting a grip and stuff about steroids

As the whole weak-and-pathetic-left-hand thing had been getting to me, I decided this week, to attempt to improve the situation. My newest novelty purchase is a "Gripmaster", for the unitiated, this is a nifty little exerciser for your hand, which aims to strengthen your grip. Unlike other hand exercisers, this one works each finger individually, which makes it great for people like me that want to get some use back in their fingertips. Using a colour coded system, there are four different gripmasters; each with a differing level of tension. I went for the yellow "extra light" model which provides 3lbs of tension per finger. To give some example of how poor my left hand is- I can squeeze it together easily with my right hand, but it takes a concentrated effort to do the same with my left, I am using it along with my old stress ball, just as a way of (hopefully) preventing my hand from becoming completely inactive. I am also looking forward to my physiotherapy session next week, where hopefully they'll be able to suggest a few other activities to help my arm, hand and walking... After a weekend of symptoms rapidly returning, I had been feeling a bit glum and helpless. Although frustrating, my symptoms were familiar to me, however the final straw was yesterday having the return of headaches and a slight nausious feeling... having no desire to go completely backward to starting the day with a headache and vomiting (touch wood- no vomit yet!), I thought it was about time I phoned my key worker, Sarah at the hospital. When you are diagnosed with cancer, you are usually assigned an oncology nurse specialist as a key worker. This is the person you call with any concerns or questions. I told Sarah about my returning symptoms, she asked a few questions such as "how quickly have they returned?" (difficult to answer when it's happening to you; I feel it's rapid...but maybe not etc..) Anyway she said she'd talk to Dr R, and got back to me this morning. Dr R decided to prescribe a steroid, Dexamethasone, to help alliviate some of my symptoms. Steroid treatment is quite common for patients with brain tumours, so I thought I'd explain (as well as I can!) a little about why they are used: Brain tumours take up a lot of space, something for which the skull is not well equiped- not the most stretchy or flexible part of the body! This causes a lot of pressure which can lead to headaches, fits, seizures etc as well as pressing on nerves and causing the mobility issues I have at the moment. The aim of the steroid is to reduce the swelling, and so (hopefully) reduce some of my symptoms, whilt also making me that little bit stronger when the time comes to restart another treatment program. So everyone's a winner right?.... ....umm not exactly. Having a brother who was severely asthmatic in childhood, I have seen firsthand some of the side effects that can occur, and there are actually quite a few possibilities: 1) weight gain and water retention (delightful) 2) Increased appetite (probably explains the weight gain in some cases...) 3) drowsiness/unconciousness (scary) 4) Difficulty sleeping (horrible, but preferable to unconciousness!) 5) changes in mood- high spirits or in rare cases paranoia, depression and hallucinations ( am a bit of an emotional rollercoaster anyway at the moment!) 6) Increased Risk of infection`( body's already taken a hit thanks to chemo) 7)Stomach ulcers ( I will be taking a "stomach lining" drug along with the steroid to prevent this) 8) An acne type rash (my skin's not great to begin with!) 9) skin thinning / stretch marks ( let's add them to my existing scars...) 10) flushing and night sweats ( guess that explains the difficulty sleeping...) 11) muscle wasting ( have a lot already) 12) Bone thinning with long term use ( again, my bones are weak already) So there you have it, not for the faint-hearted. Of course I may not get any of these symptoms, but suffice to say it's a pretty hard-core drug, I'm just hoping it works for me...

Can't Do, Won't Do...

I have been getting more than a little irritated this week. Between you and me I've never reacted well to not being able to do things. Granted in the past I've had moments of being lazy and choosing not to do things, but thats different. What I'm stuck with now is being restricted, which frustrates the hell out of me. For an example, just attempted to do the washing up after Sunday lunch, had to abandon it half way through, as I was finding it hard to stand for long plus with my grip, I was scared I'd start dropping things. And that's crazy, right? Actually wanting to do the washing up?!?! And the thing is normally I wouldn't want to, but at the moment I'd give anything to have my hand functioning properly. The other thing that's bugging me is the prospect of having to cancel my holiday to Italy in September. I originally booked it when I thought I'd only have 6 cycles of chemo and would be done by then. Unfortunately. as we all know, things didn't go according to plan when the chemo stopped working. Given my symptoms, I think it's safe to assume the tumour is unlikely to go away on its on and further treatment will be necessary. Depending on the type and start date, I may have to cancel my trip which really sucks! However nothing is set in stone, so fingers crossed it may still happen.... and if not, I'm already lining up some other possible holidays for early next year! It's been just over a month now since my last chemo cycle and (obviously) the longest gap I've had since starting. I've been trying to work out which (if any symptoms were caused by the chemo, rather than the tumour. It's a hard one to call. Most such as the left-sided weakness and poor balance would appear to be the work of the BT. However the nausia seems to be mostly chemo based, although I won't talk too soon as I had a lot of sickness before starting treatment. As far as the tiredness goes it's too early to say. At the moment I am still tired a lot of the time, this may be due to the tumour, but may actually still be due to the chemo, which can stay in your system for a considerable length of time. It'll be interesting to see how I feel towards the end of my two month break. Other things are also still present. My fits have reduced thanks to medicine, but I still have one every 4-6 weeks; proof that there is probably still something messing up my nervous system, and another (oh-so attractive) trait is the occasional dribbling from the left side of my mouth. I make sure I wipe my mouth as Standard if I eat anything, and am constantly checking the mirror, sadly this may prove to be long-term thanks to all the nerve damage caused by fitting and chemo. So there you go, I wouldn't say I'm feeling overly negative at the moment, but I am getting fed up with my situation. It has gone on far longer than I expected, especially considering how quickly, in comparrison, it was dealt with first time around. But as I have learnt through others there isno "normal" brain tumour experience; some are dealt with in weeks, and some battles can go on for years. I'm hoping mine is months rather than years, but until I know what's going on, I will try to just relax and not worry about the things I have no control over...

going backwards sucks!

This last couple of weeks has been a bit weird as all the progress I made in the first three months of chemo ( back when it was actually working!) has taken a rather dramatic and backward leap, and I'm now coping with some all-too-familiar symptoms such a poorer walking and the return of "useless left hand". Actually my hand's not completely useless, but I think it's almost certainly getting that way, and is getting slightly worse each day. Of course the reasons this is more than a little depressing are that it 1) draws attention to the fact the tumour is still there, and 2) suggests that the tumour is still growing or at any rate certainly not shrinking which means 3) some further form of chemo is likely to be inevitble. Following my last meeting with Dr R- when I was told the chemo had stopped working- I knew that further treatment was the most likely outcome, but you can't help hoping that by some miracle the tumour will shrink or stabalise on its own without any intervention. Sadly in this instance, I think miracles are not about to happen. in view of my walking not being great, I've got myself a new stick, previously on bad days I used a hiking pole I use on holidays, but I decided a stick would be an investment. Even when (fingers crossed!) the cancer stuff is over, my walking is unlikely to be brilliant. Almost a decade has passed since my accident, and the implanting of lots of metal in my limbs, so it was due for a bit of deterioration anyways. Choosing a stick is quite an effort these days. Gone are the days of dull wooden canes; now there's an array of materials and designs. Many like mine are metal and foldable, and you can choose from a selection of patterns. It was important for me to get a collapsing stick; I have good days and bad days, so wanted something I can keep in my bag until I need it. I also had my physio appointment through today for the 19th June. I last had physiotherapy 10 years ago but I asked my GP to refer me again in the hope I can do something to strengthen my arm and my leg; if I can, I want to prevent as much decline as I can. In nicer news, Tuesday was (as well as the Jubilee) my birthday. Thankfully the weather behaved itself and perhaps bizarrely (given the circumstances), I think it was one of the nicest birthdays I've had in a long time. It was nice having the country in holiday mode, and after last year in Taiwan, it was nice to be able to celebrate with family and friends at home. I have a fair bit of free time at the moment thanks to this "chemo break". In fact in the normal routine I'd have just finished another cycle yesterday, although pysically I have gone a little backward, the freedom of not having to wake early for the tablets is fantastic, as is the lack of nausia, and the slight improvement in my energy levels, am glad I still have over a month to go until anything new is decided, so until then have a chance to get myself strong and ready.

Getting older, and maybe (finally) wiser...

Exactly one week from today it will be my 34th birthday. This year it coincides with the Queen's diamond jubilee, which is quite nice in a "everybody's on holiday" kin of a way, plus there'll be a few jubilee ativities going on locally which will make the day a little different. I remember the Golden jubilee ten year ago quite clearly, predominantly as in June 2002, I'd only been out of hospital (following my accident) for 2 months, was very much still reliant on a wheelchair for getting around. My walking was shaky and with a zimmer, and I was still walking on tiptoes ( it would take another 2 months before I had an operation on my archilles tendon, allowiing me to put my feet flat on the ground). It was also a birthday that just over 5 months previously, doctors hadn't guaranteed I'd reach... It's probably this combined with the last few years, that have given me my perspective on ageing. I admit, that like most people once they hit their thirties, there's a bit of "oh my god! I'm so OLD!!!" in my thoughts, and each decade and mid-decade point seems quite scary, but there is an over-riding feeling of gratitude, that I'm so lucky to actually be here to celebrate getting old and decrepit! Nearly dying does strange things to your psyche (as does having two rounds of a potentially fatel condition), my priorities changed dramatically in December 2001, instead of taking life for granted, my main priority was first survival, and then getting healthy and strong enough to make the most of the chances I was given. None of us know when the plug on life is going to be pulled (oops; sorry, don't want to depress everyone!). THe truth is although I know my life expectancy has more likelihood of being cut short, I don't actually KNOW- I could just as easily beat this and keep on going 'til I'm 100, in the same way that in a parallel world, my life could have ended at 23 years old, when I was hit by a car... the fact is it DIDN'T. And it is because it didn't, that I owe myself and all the fiamily members and friends who worried themselves sick, that I try to enjoy as much of my life as I can. I don't really think in terms of longterm future much, but birthdays are a good landmark. My 24th was a landmark as the first one since the accident. The 25th was the first one back at university and the day I handed in my dissertation, The 26th saw me go from using two crutches to just one, the 27th saw me walking completely unaided... I've come a long way since then, and although my 28th birthday, 6 years ago, was spent in radiotherapy, by the time my 29th came around, I'd just got back from the safari holiday of a lifetime in Tanznia! I guess (the very long-winded!) point I'm trying to make is that getting older shouldn't be a cause of misery. Only people who've never had a single happy day in their lives can be excused from feeling that way; thankfully they are very few. If you really look back over your life, most people can remember happy times, be it just drinking with friends on a Friday night, getting agood result for a piece of work, or going somewhere you' always wanted to. I strongly believe we are all responsible to some extent for our own happines. There will always be bad things, like illness, that we cannot predict, so we owe it to ourselves to allow time to find things we enjoy and to do them! Okay, that's my little speech over; this time next week you'll find me stuffing birthday cake and raising a glass to my wonderful self!!

A physical wreck's guide to juggling emotions

I may have touched on this before, but the fact is, like so many adverse events in a person's lifetime, it's hard to know how to behave when you are dealing with a brqin tumour. Often your emotions don't always play fair, by falling in with friends/society's ideas of "how you should feel", and you find yourself torn between how you "should feel", "the way you actually do feel", "the way you act in front of others" and the way you deal with the situation that makes the most sense to you... Over the last ten years, dealing with a near fatal accident and two brain tumours, I think I've become a near-expert in my emotional well being and my way of dealing with adversity. So I thought I'd share with you the range of emotions someone in my situation may have, and why they are ALL valid as coping mechanisms and essential in retaining a sense of self as a person, not just a "sufferer". 1) Confusion: I think confusion is understandable in any situation for which there is no valid reason or preparation for. Back in 2001, after days/weeks (never entirely sure) of subconciousness following my accident, I came round to find my entire body smashed, and my pelvis only kept together by some strange mechanical looking metal structure, confusion, along with horror and disbelief were pretty much the order of the day, as I struggled to understand why this had happened, and why I could no longer do so many things I took for granted. Being diagnosed with a BT is no less confusing, but the confusion doesn't begin and end with the diagnosis. When I had my first tumour back in 2006, I deperately tried to understand why this has happened and what all the jargon meant. Six years later, and countless reading and google serches later, and the jargon is less confusing; I know what and where my temporal lobe is, I know what anaplastic means, I understand the WHO system for grading brain tumours and I understand some of the effects tumours can have on the body. But I still have moments of confusion,especially recently trying to understand how chemotherapy can start to work and can then just as easily stop working, whether or not I should have been on a different treatment to begin with, why some symptoms have gone, yet others have returned... the scope for confusion seems to be ongoing... 2)Anger: I feel that being angry is probably one of my most frequent emotions. Whilst I refuse (or at least try my best) not to take my anger out on other people. I do often (and stupidly might I add!) get angry at myself, or more acurately at the limitations of my body. I get angry at not being able to move quickly, or being able to do much without exhaustion setting in. I

I also get very angry at the tumour itself; how dare these cancer cells invade my brain and keep growing?!! I'm not usually violent, but I want to strangle them and kill them off! 3) stubborness Stubborness (sometimes confused with determination) has saved my life. Anyone who truely knows me- just ask my parents- knows that I have a stubborn streak a mile wide, inherited from both my dad and my late maternal grandfather. I have rarely done anything unless I've wanted do, I refuse to back down from arguments, and I refuse to let anyone tell me what I can and can't do. The evidence speaks for itself

When I had my accident they told me I probably wouldn't be able to use my right arm (radial nerve damage) for a few weeks. Within days I'd practised until I was able to hold a book, pour a drink and change channels on the TV and radio. I was then told I couldn't start standing and walking for twelve weeks, I started putting weight through my legs at 9 weeks, and got my pelvic fixator removed a week early at 11 weeks. I followed this through when I left the hospital and started attending twice weekly physio and hydrotherapy sessions. If they told me 5 minutes would be enough, I pushed myslef to do 10. I hated using a zimmer frame, so I made myself practice using crutches. And being stubborn worked. Against all odds I was back at uni withina year (all be it on crutches) and lived as independently as possible. NB back packs save a lot of hassle when shopping on crutches! I suppose my stubborness has been just as present through cancer. The first tumour was a lot easier to deal with. Following my brain surgery, I went to uni (I was now doing a PGCE) about a week later, completed my three day extra placement at a special school whilst waiting to start radiotherapy, and then returned to complete the course the following September making time for some trips to Budapest and Tanzania as well. MY stubborness means that I refuse to let anyone fuss over me, If I want to do something, but others question my health and whether it's "sensible", I dig my heels in which explains why in the last six years I've travelled further and more extensively than ever before, and even chosen a career which generally means packing up and moving on to different parts of the globe! This second time round, it is at time harder to keep my resolve, but you know what? Cancer's already taken a lot from me, I'm damn determined not to let it control my whole life and future! 4) scared seriously who with cancer wouldn't feel scared?? Not only is there the frequent media hype of the seriousness of it all, but there are the blind facts. Cancer is life threatening and people DO die every year from cancer related illnesses. Just the thought of my brain being host to such a vile disease is scary, and as much as I try my best not to dwell on it, the threat of death is always there like a dark secret that nobody wants to talk about. However, thankfully there are lots of distractions in a day, and what with not worrrying your loved ones too much, there are simply more productive things to do than live in fear all day long. 5)forgiveness/understanding one of the things I often get irritated by (as I've mentioned before) is the way people treat me differenty because I'm ill. They talk in a soothing voice, tell me I'm an "inspiration"and generally make out I'm some kind of saint because I had the misfortune to get ill. Perhaps one of the niccer aspects of my personality through adversity is my constant effort to be forgiving and understaanding. I know that none of these people mean any harm, and they just don't know what to say, so I let things go, take a deep breath and try not to get visably frustrated with them, most people have good hearts.. 6)positivity:

"being positive" seems to be number one on the friends and family's "how you shoud be" list. The phrase kind of grates a little with me particularly as sometimes (sorry to alarm you) but no amount of positive thinking makes a damn difference!! That's not to say I don't try, but when you've already had six vomit inducing cycles of chemotherapy to only be told it's not worked it's rather difficult to grin inanely at your oncologist and say "nevermind, I'm sure the next treatment will work!" . this is because, unfortunately, there are NO certainties when ir comes to dealing with briain tumours. I am a realist (please don't confuse it with negqtivity- see next emotion!), this means that when things are genuinely going well, I am positive. When I found myself walking unaided for the first time in over a year I was almost bouncing off the walls in exdcitement, however because I KNOW I will always have a limp I don't waste time hoping by some miracle it will get better; I just accept things the way are. For each treatment I am given I start by thinking this may work but never get my hopes up thaat it definitely will. 7) negativity I have been accused by some of being too negative, whilst being applauded by other friends for being realistic and preparing myself (and them) for the worst. When you have certain facts at your disposal such as (dreaded) statistics, and previous experience, it's only natural that you prepare yourself for the posible bad outcomes as well as the good. That said I refuse to give in to extreme negativity. Deciding you definitely won't survive, seems to me just as stupid as saying you definitely will- you have no proof for either outcome, and all you're doing is being self-pitying and depressing people around you- get over yourself! 8)calm: Calmness, believe it or not is my most common feeling when I speak with my oncologist at the hospital, and when I talk to others about my condition. Often DR R has had to tell me less than pleasant things, but I can honestly say that I never feel like wailing in his office or feel particularly anxious. This is mostly because he is a fantastic doctor, who Ihave known and trusted for nearly four years. Any anxiety is usually prevented by his directness and explantions which make each new development clearer and understood. I am also calm when discussing things with friends and family. If I were to break down in tears everytime somehing bad happened, I'd never tell them anything, and they'd be left in the dark, by staying calm it ensures they, too react, calmly and are able to listen and take everything fully on board. 9)happiness:although the concept of being "happy" with cancer may surprise some, this is actually the most important emotion/trait of all. Despite, what many may believe, I am not sad that often (I can count on one hand the number of times I've actually cried in the last year!), I constantly find things to smile about- spending time with the people I love, talking to friends' children, sitting in the garden on a sunny day etc. And I laugh. A lot. Because if you lose your sense of humour, you truely are done for. Admittedly my humour has got quite dark, I make a lot of jokes about being one of the "cancer crew" that some may find distasteful. To laugh is, fo me a huge part of what makes me human, if I stop laughing, I am more likely to go down some bleak depressive spiral of bitterness and self-pity. And, believe it or not, I have a lot to be happy about. I have two months of chemo, so get some time off vomiting and feeling rundown. I live in a beautiful part of the world, currently even more beautiful now we have some SUN, I am alive, which ten years/6 years/7 months ago wasn't guaranteed, I have a wonderful family and fantastic friends, I have a wealth of travelling memories and (hopefully) the potential to create some more, I have my books, I have my writing, I have a loyal and friendly dog, and most importantly I can look in the mirror and see not only a real human being (rather than a fake), but a person I actually like and respect.

Welcome to Limbo Land...

As I signed on to blogspot today, I had a look at my list of posts and realised, I've been blogging quite a lot recently. I put it down to having rather too much time on my hands. This is (obviously) in large part due to me not working at the moment, and having to find ways of ocupying my time which don't use up too much energy! One unfortunate aspect of this whole brain cancer malarky is that I find myself frquently shattered and too tired to do anything. I am attempting to clear out some of the junk in my old room (I switched rooms) in my parents' house. BUt rather pathetically, I can only manage 30 minute bursts before I feel wiped out! As a result much of my time tends to be taken with things I can do sitting down such as DVDs, books, writing and blogging! My ability to do a lot is also being hampered at the moment by the unwelcome return of a few symptoms (in case I needed proof the cancer cells were growing again...). My left hand ( although certainly nowhere near as bad as before treatment) is getting stiff and numb, and as a result it is harder to hold things in it for a long period, so I'm back to doing a lot of things with just one hand. Also my hearing in my left ear is also (off and on) weak. If there are too many different noises I find it hard to hear clearly. And then added to this there is my general balance and spee, which lets face it has been near apalling for the last ten years! I think the strangest thing is the sense of limbo I now find myself in. I know that the tumour is still there, yet am receiving no treatment which is both a relief and scary at the same time... It's a relief because chemo makes me feel really ill and rotten and draws attention to the fact that I really do have cancer and can't ignore it (no matter how much I want to!), so not having treatment means I feel less ill, and can look forward to feeling better over the next couple of months. Of course the flip side of this is that not having treatment is damn scary, as I know I still have a tumour and that at present, nothing is being done about it. Even at my sickest on chemo, there was this feeling that it was somehow worth it if it made me better. But now I spend a lot of time trying not to think about the possible outcomes of my next scan in July, as some of them are a little too scary to deal with. I am attempting to treat the time off chemo as a bit of a holiday, a chance to do a few things and see a few people whilst I still feel fit enough to do so, especially as chances are any further treatment is likely to be even harsher than what has gone before.. I am also putting all thoughts of work on the back burner. Funnily enough, this morning when shopping in our village, my mother was asked by someone "Is Lucy well enough to go to work yet?" People seem to have a very strange idea of how long recovery from cancer takes; even when people's chemo is successful it can take months after treatment before they feel like their old selves- it is an incredibly long and frankly boring illness! For my part the idea of future work keeps shifting. Although I would like to get back into work, at the moment I have no job to go back to. As luck would have it, just when this recurrence started I'd come home after finishing my year contract in Taiwan, so was effectively unemployed. Meaning that if and when I am feeling bettter, I will need to find a job to go to! What complicates matters is that the career I've chosen (TEFL) generally involves living in other countries, which might not fit in to well with a schedule of out patient appointment in the UK. There is also the fear that I could get ill again thousands of miles from home. This isn't a new fear. Having had cancer before in 2006, I was aware of the possibility when I lived in both Russia and Taiwan, but having this recurrence has made it all a bit more real. So for now, my main aim is to get as fit and healthy as I possibly can, and then potentially look for TEFL work in Western Europe(nearer to home), or if I find myself under the watchful eye of the hospital for a while, I may have to look for work in the UK, so I don't miss any appointments. Also after a couple of years getting by on a PGCE and an online TEFL qualification, I think I'm going to bite the bullet and do the CELTA course when I'm better, as it really is the stepping stone to any kind of longer career in TEFL and essential to land jobs in good European schools and/ or the UK. Am also still hopeful that I will be going on my holiday to Italy at the end of September, but again this is a bit up in the air at the moment, until I know how my summer is going to pan out, although my oncologist didn't rule it out completely...

When cancer misbehaves....

Well writing this entry is a bit of a bugger( to put it mildly) as I had hoped today would bring me some positive news to share with you. Unfortunately to quote my oncologist, the results from my MRI on Wednesday are "not the greatest", as we seem to have hit a bit of a bump in the road... Initially my tumour responded very well to Temozolomide (my type of chemotherapy), as many of you will recall, at my midway MRI (between cycles 3&4), the tumour had shown a dramatic reduction, and things were looking very good, and all was set for me to continue to improve over the following three cycles, and perhaps even have an extra two for luck! However the latest MRI showed that there was no significant improvement on the main tumour since last time, and in fact one of the other cancer cell clusters had actually grown by 4mm. Now 4mm doesn't sound a lot, but it does indicate that this particular type of treatment has stopped working. This isn't as uncommon as you'd hope. Cancer cells are quite clever and devious; sometimes if someone has been taking a certain form of chemo for a while, the cells can build a tolerance to it, and work out ways to get round it and continue their destruction of your brain tissue (as if cancer hadn't done enough to annoy me!), so when this happens a bit of a rethink about treatment has to occur. So first things first. My oncologist is stopping the Temozolomide. There is no point continuing monthly cycles of a drug that has ceased to work ( bit of a no-brainer really). So that stops. Before any more treatment is considered, Dr R is giving me a two month break. The reasons for this are clear: ALL forms of chemotherapy attack your blood cells; each cycle knocks your count down, and then it rises again. If you have too much chemo all at once, it can be harder for your blood to repair itself and your platelets will drop leaving you weaker and less resiliant to infection and illness. It can also lead to problems with the blood's ability to clot, making bruises more likely. Also each cycle has already made me more and more tired and has exacerbated my exsisting arthritic problems, so time out from treatment is very welcome. Plus on a possibly more trivial note; having a break will leave me free to relax and enjoy my birthday which fall during this year's jubilee celebrations! As for what happens in July, it depends on the next MRI. If it shows little change, but I feel okay, then we might wait and just keep an eye on it, if it get's bigger or I get really sick we'll work out a treatment plan, and if ( would be great, but unlikely) it gets smaller without treatment, we all breath a sigh of relief and stop worrying! In all honesty, it is most likely, that at some point I will need some form of chemotherapy again, but as yet I do not know what form that will be; there are hundreds of types of chemo drugs,and I don't know enough about them to even hazzard a guess. So there you have it, not the greatest news, but it doesn't mean the show's over yet, there are lots of treatments, and I've known from the start, that there was a chance that this could happen, I'll just keep trying until we find the one that works! Until then I have every intention of enjoying my chemo-free months and not really worrying about it until I have to!

What exactly is a MRI?

Today I had a MRI scan for what felt like the millionth time (actually due to boredom during the scan I started working out the number I've had and think it's about 13/14!). Anyway (thanks to my veins behaving themselves for once), the scan was surprisingly quick and I was out in under 25 minutes. It has occurred to me that despite most people having heard of "MRI", many people probably have very little idea about what is involved, unless they have had one themselves, hence the many wishes of "good luck" I am showered with before each scan, as if I'm about to go through an invasive procedure or about to go off to war! So I thought I'd share with you (incase you or any loved ones have to have one) exaxtly what I know and understand an MRI to be, what hqppens, and why it is that it's the one procedure I tend to take in my stride and handle quite easily. So firstly, MRI stands for Magnetic Resonance Imaging. The MRI scanner is, essentially a large magnet with a hole through the middle and does not contain any x-rays (there is no fear of radiation with MRI). Before the scan takes place, you have to remove any metal objects (eg belts, watches, earrings etc) from your person. When you get the original letter it usually says you have will be asked to change into a gown. In all honesty I think it depends on the area of the body being scanned. In all my (head) scans, I've only ever had to change into a gown once. Generally I am scanned in my normal clothing. When you go into the scanning room you are asked to lie on a scanner table which is narrow, flat and not particularly comfortable, although they have got better at providing me with cushions under my legs to make life a little easier. You have to lie in a precise position, for me this usually involves a lot of shuffling to get my shoulders in the right place (as I'm tall). Once in position they fix a camera attached to a cage over my face, this is close but doesn't actually touch me. They also put ear plugs in, and padding around my ears, to muffle the very LOUD sounds! They give you an emergency buzzer to hold (I've never had to use mine!) and tell you to briefly close your eyes as there is initially a bright light before you enter the scanner. I usually keep my eyes closed throughout, as TBH, there is very little of interest to look at, so I find other things to think about. The worst thing is the noise. a mixture of whirrings, drummings and knockings- irritating, yes, but not particularly alarming on painful. Different imaging (I Presume) takes different lengths of time, depending on the sequence used. For me I generally have 10 (long and boring!) minutes before I'm initially slid out of the scanner for my contrast injection. This is the bit I don't like so much... Let me stress not everyone has to have this injection. I do because the contrast helps to enhance the appearance of cancer cells, making them more visable. The reason I don't usually like this part is down to my veins. Contrast has to be injected intra-veinously , and it can take an age (and lots of attempts) to find a suitable vein. I think the worst I ever had was seven attempts and three members of staff! Today (thankfully), they found a vein with only two attempts, although ended up with the more painful option going into my hand (as opposed to my arm) , which is less than pleasant. Following the injection, I usually go back in the scanner for another 5 minutes, and then it's all done. I don't usually get the results for at least a couple of days. I'm seeing my oncologist on Friday, so should be discussing them then; people often ask me how the MRI went, and the truth is I never know until I get the results. I have to say though. MRIs are fairly easy and (once you know what's hppening!) non-scary, so if you ever need one it's not worth worrying about, just think of it as getting your picture taken - which essentially it is!

How I loathe thee DWP, let me count the ways.....

GRRRRRRRRR!!!!!! Okay, so now I've got that out of my system. Anyone who speaks to me regularly, or takes notice of my FB status updates will know that, as of late I have a bit of an anti-tolerence towards the DWP. For those people not in the UK, this is the government department for Work and Pensions, who are responsible for the majority of benefits received in this coutry, including ESA (Employment Support Allowance), which I am currently claiming. I know this is not the first time I have moaned about this particular group of fine fellows, but along with pretty much anyone who's had to rely on them, I find it hard not to get a little bit annoyed at times! My particular problem started 2 weeks ago, when I checked my bank account online and discovered I hadn't received my fortnightly payment. So I phoned DWP to find out what was happening. Now phoning itself, is enough to irritate... First you get a smugly recorded voicemail message telling you the numbers to press for different options; all irrelevant, as you'll be on hold for at least the next 15 minutes listening to Mozart's greatet hits (used to like Mozart, but now? not so much..). You are regularly reminded by recorded messsage, that you can phone back later, but what's the point? In my experience it's always busy no matter what time of day you call! So eventually I got through to a woman; lets call her "Bored and Sullen from Essex" (BSFE), and our conversation went a little like this: BSFE: Hello how can I help? Me: WEll, I'm claiming ESA, and I should have received my payment today, and I haven't BSFE (admist lots of exagerated typing sounds) ok..I'll...just...check...your...notes. OK looks like your sick note is out of date. Me: Sick note? I never sent one, I sent a formal statement from my consultant. BSFE: Well, it's expired. Me: I haven't received a letter to tell me this? BSFE: We don't always send letters... Me: Why?!?!? BSFE: It's the claiments responsibility to know when their sick note expires.. Me: (slightly incredulous) But as I have already told you I sent a statement with no expiry date BSFE: Well that is what the computer (Because I have no mind of my own) says is the problem, If you send a new sick note as soon as possible, the payment will be paid. So feeling a bit defeated I agreed, arranged a doctors appointment at my local surgery for later the same day ( I was having pre-chemo bloodtests again in the morning) and spent approximately 2 minutes with a locum GP, who'd never met me before, but quickly filled and signed a sick note, which I sent two days later (Weds 2nd May). Then two days ago ( 9th May) I had a letter dated 4th May telling me my medical certificate was going to run out on the 13th April?!?!- 21 days BEFORE THE LETTER WAS SENT!!!! I thought I better phone to check they'd received the sisk note I'd sent, and was once more treated to a 15 minute treat of orchestral music, before an actual person answered the phone. In fairness this guy was nice and relatively sympathetic (turns out he had personal experience with cancer- I didn't really push for further details) He looked and said apparently there was a "gap" of two weeks on my sick notes, which the computer didn't want to pay. I pointed out that given the condition it was unlikely better during those two weeeks (shock horror he agreed!) and said I often see doctors at my surgery who've never seen me before so they can't back date notes. He told me he'd see what he could do and get someone to call back, and they did. I have to admit this guy almost restored my faith in common sense prevailing; he admitted the computer system was "inadequate" and noted that although not officially confirmed yet, they had my notes through from the medical assessment, knew I'd passed so he'd "jump the gun" and get the payment into my account, he told me it would be paid on Friday 11th (today) I hung up the phone feeling relieved, until this morning, when I checked my account and...no money. So phoned DWP again. This guy was more in line with the generally sullen staff and told me it had been issued, but the money ould go into my acount any time up to 5pm, an I should just keep an eye on it!- just as well I have online banking set up, wouldn't want to hover by an ATM all day! However mysteriously I checked my account less than 10 minutes after hanging up and the money was there! Coincidence? call me cynical, but can't shake the feeling they were covering their back having discovered someone hadn't processed it properly! You see as a rule, I don't blame the workers on the phone; they're just doing their job, but the system as a whole is just so disorgnised and badly managed. Thinking it's acceptable to not give someone any money for FOUR weeks?! If I wasn't living with my parents how would I survive? Plus my parents are on a pension, and I do give them a portion of my benefit every two weeks, so they had to wait too. Trust me, despite the media's attack on people on benefits; I don't think many people would choose to put up with this stress...

Life in the Slow Lane (Avoiding Stress)...

Today (Monday 7th May) is the third day of my 6th cycle of chemotherapy. To say I feel like I've had enough is an un

derstatement. Each cycle seems to be a little worse than the one before, after my usual vomitting on day 1 (Saturday), the last two days have been an endurance test. As I write this, my eye lids keep drooping and I'm struggling to keep awake. One way of explaining how I feel would be this; think of the hardest days work you've ever had and how tired you felt afterwards. Now multiply that feeling by ten.... I feel as though my whole body is coated in lead, and the simple task of just staying awake is near impossible. The activities of daily living are extremely slow. For instance( thanks to nausea), it took me over an hour and a half to drink one cup of cofee and one small slice of toast this morning. Then, although showering was relatively quick, it took about an hour to get dressed (due to slowness of limbs) and all I wanted to do was sleep afterwards. And so the pattern continues, my days onsist of me sitting in the living room and falling asleep and sleeping in my room, only waking up to eat or to perform relatively low energy tasks (such as blogging on the computer...), and knowing there's more of the same tomorrow. Exhaustion isn't made any better by the fact I have to get up at 7am to take my tablets every day, or by the fact that it turns out all the other elements of life don't stop when you're having treatment. Some people heve an idea that when you have cancer, it's easy to lie back, relax and let others take care of you, when it reality this rarely happens. Not only would I find it difficult (as an extremeley independent person) to be fussed over, but my friends and family do have other things to do rather than look after me. Both of my parents are retired, and neither in perfect health, both are elderly, and my mother has problems with her skin which can flare up due to changes in weather and/ or stress. She already spends a lot of time looking after my father who is older still, and has all manner of health problems including type 1 diabetes (The hereditary insulin dependent kind, NOT the lifestyle attributed type 2), arthritis, a long term wound and mild epilepsy. I know how much my mother has to do, which means the last thing I want to do is have her run herself ragged worrying about me. Unfortunately I am living in their house, but am (for the most part) unable to help as much as I'd like due to exhaustion. I try to do a bit more on non chemo days, but am still far away from "normal" energy levels. I also have found that I am no longer able to handle stress. I was lways quite good at tough situations, but no more. My dad had a hypo a couple of days ago. Now like any child (and sister) of a lifelong diabetic, I have been dealing with hypoglycemic attacks since I was a child. Knowing to try and stay calm and get sugar into the person as quickly as possible, but this time I had a massive panic attack. This has happened a couple of times since my rediagnosis in November; I start hyperventilating and find it hard to catch my breath whilst shaking continuely, I have to be careful as these attacks can lead to a fit. I think it's my body's way of telling me to remove myself from the situation, as I'm no longer physically strong enough to deal with pressure. Thankfully my brother and mother were both around to get Dad back into the land of the living... Being on my sixth cycle of chemo is strange. Originally I was told that I would be having (only) six cycles, which would make this my last, but as I have mentioned before, my oncologist has cast some doubt on whether this is the case, whilst debating the pros and cons of an extra 2 cycles. As for me I am prepared to listed to any arguments for extra, but also prepared to stand my ground as I reaally feel enough is enough now, however I guess I'll hold on celebrating until I know for certain.

The medical Assessment

So today, I had the dreaded medical assessment. For those of you not familiar with the UK welfare system, anyone who claims either Employment Support Allownce (like me- used to be know as Incapacity Benefir), or Disabilty Living Allowance, have to go through a medical assessment with a "neutral" agency called ATOS. This assessment comes somewhere during the 16 week "Assessment Period, you are put on at the start of receiving benefits. Now I don't have a major problem with this, as I understand the need for clarity especially with so many (or so the media would have us believe) fraudulant claimers out there. However I do have issue with the fact that the only assessment centre in Norfolk is in Norwich which means many like me have a 50 mile or more round trip. Given the nature of the assesssment, some people going to this have very severe disabilities or are seriously ill, so I do think it's shameful that they can't have some more local centres- Norfolk is a BIG county! Anyway the assessment wasn't too bad. The doctor, had my claim form infront of her, so initially asked for extra information relating too this, eg; diagnosis, limitation etc. She also asked about how side effects impacted on my day to day life (washing and dressing) and how I filled my time during the day. I'm sure this last question is designed to catch people out in someway, but seriously how does anyone (disbled or otherwise) spend their time on benefits; you have no money to do nything really exciting, so readeing, TV and internet are as about as exciting as it gets! PLus when you get tired as easily as me, you're not going anywhere without a lift- I walk for about ten minutes and I'm done! Following the Q & A session, I had a small physical which involved stretching my arms up, which I just about managed, moving them behind me, which I did wincing, and squeezing her fingers. I also laid down whilst she looked at the way I could (or couldn't!) move and bend my legs and feet. When all this was done, I was more than happy to get out of there! It could have been a lot worse. I'd been reading horror stories online about the way people had been treated during their assessments, and people who'd failed and had benefits stopped. I think these tend to be the harder to measure conditions like depression and stress. With me it's (hopefully) pretty straight forward, they have confirmation from my oncologist that I have a brain tumour, and my physical limitations are sadly obvious to most people. I'm hoping this is just a formality and won't adversly affect my benefits in any way. I had a bit of a worry regarding my benefit payment recently; I was due to be paid on Friday, but by Monday had still not received my payment. When I phoned the DWP, they said my sick note had expired. This was confusing as they had never had a sicknote from me, just a medical statement from my oncologist which had no expiry date (just how quick do they think you get over cancer?!), and secondly, I'd had no communication from them about this at all! When I raised this I was told "We don't always send letters"????!!! "Why?" "Its up to the claiment to know when their sick note expires" , again "But you never had a dated sick note, just a statement with no end date" "Oh, well you need to send one anyway" Angry is not the word. I can't believe they have such a shambolic system that they can stop a payment without saying anything until the person affected notices! What if I had bills to pay etc? Thankfully I was able to move back in with my parents, so this isn't an issue, but many others aren't so lucky. THe upshot is I got a sick note at my GP's surgery from a doctor who'd never met me before (so much more reliable than my oncologist who knows my case!???!) , and sent it so am hoping they sort out my money soon. Otherwise this busy week is set to contiinue with my phone assessment tomorrow, and my drugs run on Friday, and of course the lovely start of a chemo cycle early on Saturday morning. Sometimes the fun never stops....!

Am I normal?!!

Firstly can I say that it is a little disconcerting, after writing blogs via Bloggger (Blogspot) for the last 2 years, that the site has changed it's layout so dramatically, but hey, I guess like the ever changing Facebook, I'll get used to it (until it changes again). The reason that I will be able to adjust, is because adapting to different situations and circumstances is one of the things that makes us normal as humans. However in my experience, being able to adapt and talk openly about a change of circumstances, when that change is cancer marks you out as anything but normal. Take for an example a conversation I had this week in my local village pharmacy: Following my trip to my G.P on Monday, I had (thankfully) been prescribed some dihydrocodeine painkillers. So I took the script into the pharmacy, in order to collect the drugs. When it came to signing the prescription, I was asked "Do you pay for your prescriptions?" to which I answered "No, I have an exemption certificate." I was then asked "why are you exempt" and I answered ( without thinking much of it) calmly, but clearly "I have cancer." The resaction is one I've slowly become used to. The pharmacy assistant looked horrified as if she'd done wrong asking me (she hadn't-she was just doing her job!), and the few people in the shop all tried their best not to look in my direction. You could have cut the atmosphere with a knife. In particular, I think what people find difficult is the fact I'm so open about it. For some reason unknown to me, the standard practice is to whisper the word "cancer" as if you're scared or ashamed (I'm neither) to say it out loud! Try as I might I don't get it. Of course having cancer, particularly that first diagnosis is bloody scary, as it is also for friends and family. But fear is in large part caused by misunderstanding. By being open and encourging people to ask questions you can (hopefully) quash some of these fears. At the end of the day with one in three people being diagnosed with a type of cancer, it shouldn't be in the territory of the scary unknown, people need to talk and learn about it. As far as being "ashamed" goes; get a grip!!! I for the life of me don't understand the hierarchy of illnesses and diseases which suggest that some are okay to be said loudly e.g flu, Asthma, Diabetes etc, whilst others such as Cancer and HIV/AIDS are supposed to be whispered and kept secret. Of course, I am not complete simpleton (honestly!), I know part of it is the perceived "seriousness" of the condition, but to put things into perspective flu causes 3000-4000 deaths per year in the UK, 1500 deaths a year are caused by Asthma,and there are up to 2400 Diabetes related deaths every year. In comparrison AIDS related deaths are on the decrease (due to improved treatment), with 516 in 2009 (sorry couldn't find any more recent statistics). In all honesty, Cancer deaths are higher than any of these with 156,090 deaths recorded in 2009, but this is for ALL cancers, of which there are more than 200. If you break it down it averages at about 700 per type, with many more easily treated types (such as breast & skin) not accounting for anywhere near this number. I refuse to whisper as I am not ashamed of having cancer. I did nothing to get a brin tumour; in fact unlike most cancers there are no known causes, lifestyle is not generally a faactor. And yet, there are times when I'm made to feel almost guilty for making others uncomfortable; well sorry you'll just have to live with it!! It's situations like this pharmacy conversation which remind you (in case you're in any doubt) that you're not "normal". There are a few times when I feel like this, such as the no appetite days, the times when I'm exhausted by 9pm, and of course "chemo week" when I feel about as far removed from normality as possible! But I've decided being normal is over rated anyway. I spent most of my teen years pulling away from the mainstream via my music and clothing choices, and I 'm not about to push myself to follow a perceeived code of conduct for the seriously ill!

The final stretch...?

Well folks, those of you who have been following this blog from the beginning will (hopefully) soon be able to read other more interesting and exciting stuff on the internet as hopefully (for the time being at least!) the end of this tumour battle is almost nigh. That is not to say I am (or ever will be) ompletely out of the woods yet, there's a lot of stuff to be done in the next few weeks including: 1) Doctors appointment on Monday- as with most surgeries across the UK; this was no mean feat, I actually phoned on Tuesday (17th), only to be told they had no appointments until the next week! Anyway nothing major, but following a phone call to my key worker nurse at the hospitaal, she advised me to go to my G.P, firstly to prescribe some codeine based painkillers- the stiffness is getting worse, and not being able to take Ibrufofren is a nightmare- Paracetamol is USELESS!. Secondly in view of the stiffness, I want my GP to also refer me for some physio, to help with my arm and shoulder, And thirdly (with such difficulty getting doctors appointments, I find you have to get as much done at once as possible!)- I ant to get the doctor to fill in a medical confirmation form so I can apply for a disabled bus pass. I ummed and ahhed a bit before deciding to do this last thing, but at the end of the day as I have a medical condition which prohibits me from driving, and a physical disabiliy which affects my walking- I qualify. And not being funny, there are very few perks to having a brain tumour, so if I can get to Norwich for free on the bus I'm going to do it!!! 2) On April 30th, I once more will go and have my monthly blood tests before chemo. 3) On May 2nd, I have a medical assessment connected with my ESA (Employment Support Allowance) benefit. In theory this won't mean any reduction in my benefit (they already have confirmation of my condition), rather it is a way to assess how much (if any) extra allowance I am entitled to. To be honest I am not that impressed with having to go through a medical. Firstly it's in Norwich, so I have to travel 30 miles just to be asssessed- god knows why they can't have anything a little nearer, and secondly I don't see how a medical can assess brain cancer. You can't see my condition, it's just there- they won't be giving me a scan or anything, and the DWP already had a letter from my oncologist outlining my condition, so the concept of being assessed is more than a little bit iritating!! 4) On May 5th, I start my 6th (and maybe last ???) cycle of chemo. Originally when I started treatment I was told I would be having six cycles of chemotherapy. So if this was still the case I would be getting very happy at the thought of this almost being over. However as many of you know, at my last MRI, my oncologist, Dr R, was deliberating over whether or not to give me two extra "just for luck" cycles to give an extra blast of chemo. So I still don't know what his final verdict will be. I do know that having given it careful consideration, I am ready to fight my corner for no more chemo. Before people think I'm going to recklessly refuse treatment in the style of a melodramatic soap opera plot (Tania-Eastenders-anyone?!?!), let me explain. At my last MRI in March the pictures showed that the tumour was barely even visible. After only three cycles it had already pretty much disappeared promting Dr R to say it was the "Best" scan he'd ever seen. Now given I obviously am this miraculous, chances are that after six cycles it will be completely disappeared. If this is the case I will question the necessity of more chemo at this juncture. Especially as 1) the stiffness and achiness is getting worse with every cycle, as is the nausia, so I would question putting my body through anymore. 2) Let's be brutally honest here; chances are this is not my last brain tumour, if/when I do get another recurrence, I will need every reserve to cope with another chemotherapy schedule, I don't want to weaken my blood count so much this time that it might make things more difficult next time round. Of course, I am lucky having a FANTASTIC oncologist, I know he won't force me into anything and will only push me if he feels it's in my best interests, so I will lsten to his decisionand weigh up the pros and cons when I have to, but I'm pretty confident that given he amount of monitoring I will get, that with/without extra cycles, any future incidents will be picked up and dealt with quickly!! 5) May 16th is the long awaited for MRI 6) May 18th is my mother's birthday:) but also (although not necessarily more importantly!) the follow up appointment and Dr Rs decision on the great chemo question! So there you have it, a very busy month ahead, fist stop the painkillers as (whilst writing this), my left arm is extremely painful right now, hoping to get something that actually WORKS!

The selfishness of zombies...

Today is day 3/5 of my fifth cycle of chemo. I'll spare you all the self-pittying rambles of what this means; anyone who has been reading this blog will already have a fair idea of how I feel and lets just say it's not pretty...!

I will however just mention the little fact that this cycle was over the Easter weekend. On the plus side- the N&N hospital was nearly deserted on Good Friday, when I went to pick up my drugs, so for once my brother had no problem finding a parking space in the usually manic hospital carpark.
However now we come to the (obvious) negative. With no means to offend anyone of aa religious leaning, but I don't actually have any religious affiliation, actively classing myself as humanist, rather than connecting to any of the major religions. So just as Christmas fo me is more about being with family and friends, Easter is about weloming he spring and...chocolate! Problem being that when presented with choolate yesterday, the thought of eating it made me so nausious, that it's been put away until Thursday, when I can hopefully enjoy it!

Anyway, this desire to not even being in the same room as chocolate, especially when being eaten by other people (thanks so much family!), got me to thinking about one aspect of caner that people don't seem to mention. ANd that is the necessity to be absolutely selfish.

I know that sounds like quite a statement. And hell, I'm not going to suggest that all people with cancer are the same, as ever this is about MY experience and mine alone. But bear with me, and I'll try and explain what I mean...

I am not by nature selfish peron. I feel I have to start by mentioning this, in case people just assume I've always been selfish and am just uing my condition as an excuse! Still, I'll try to prove it to you... Going back as far as I can remember, I've always enjoyed helping people; in my teens I volunteered as an assistant leader with a brownie pack, and as a helper on a summer playscheme for children with special needs. I have always enjoyed giving my time in a poductive and helpful way.

I also have a natural desire to make life easier on my loved ones. When I had my accident, I was painfully aware on the way it impacted on my family and close friends. I hated seeing the clearly exhausted faces on my family members when they came to visit, and pushed myself to appear as cheerful as possible for their sake, as much as mine.


The trouble with cancer is that it has to be a one man show. It is virtually impossible for anyone who hasn't been through it to fully understand, and frankly there are times when I get fed up with even trying. In the time between chemo cycles, I can be a little more considerate of others and think about how my illnss upsets them as well as me etc, but the minute I'm on chemo, I become very inward thinking and only concerned with how bad/tired/sick/alone I feel. And I know this is unfair. I know people care about me, and I know they want to see me better. But there are times when I just want to shut myself off and ignore people. So I do.

This means that if family members are arguing or upset, rather than adopt my usual role of peace keeper, I tend to leave the room- I can't handle stress. Likewise on the rare occasions these days when I'm actually out with friends. when I get tired I can be very blunt and just say "I've had enough, I need to go home now". And then I feel bad for being rude etc which makes me even more resentful!

I think there is hope for me, the fact that I feel bad about my behaviour and over analyse it, hopefully indicates that I'm not entirely selfish, I just have to place my needs for calm, rest and peace above everyone else for the sake of my health! So if I have been at al snappy with anyone (and there are a few out there), please accept my appologies, when all this is over I will do my best to resume normal service...

A pint of.....cola please?

The relationship between Britain and alcohol is a funny one, we are constantly surrounded by media articules stating that we have a "drinking culture" or worse a "binging culture", it is widely accepted that a night out is going to involve mass volumes of alcohol, drunkeness and probably one or two moments of clumsiness or stupidity.

This was something I never had a problem with until fairly recently.

People who know me well, and have known me well in the last 18 years or so (going on 16 as a starting age) will know that I have always liked a drink. Infact, I have always likes more than A drink, often drinking others well under the table and taking a pride in being able to "handle" my drink.

However my stance has changed a little. Partly it's an age thing; I'll be 34 in June, and am aware that my body can't take so much abuse anymore, something I'm sure many people will relate to- the older you get, the heavier the hangover. Then there is also my medication- interestingly, it's fine to drink with my chemotherapy, but not so great with Phenytoin (my anti-seizure drug). Actually, to clarify it's not that you can't drink at all with Phenytoin, just that it's recommended not to binge as alcohol can decrease the effectiveness of the drug.

At the moment medication is the most convenient reason to give, as people don't question it too much. Last Friday, I went out to celebrate my friend's birthday- first to a pub for a meal, then a bar for drinks. In the past I probably would have had about 4 or 5 pints (easy- used to be more!)in the pub and then in the bar probably a couple of cocktails. However I actually had two pints in the pub, spaced out with one and a half jugs of water! Then in the bar, I had he most diluted cocktail I could find on the menu, which contained more lemonade than any alcohol! As a result, I felt stone cold sober, whilst everyone else was hammered and giggling and shrieking. This was a strange unusuaal and not entirely pleasant experience for me. By 11.30 I felt tired and was glad to leave early, go home and get to bed! Ironically thanks to the volume of full sugar (I tend to drink diet soft drinks)lemonade in the last drink, my head was buzzing and it took me a while to actually get to sleep!
I think going out and not drinking much is going to take me a long time to get used to, but also is difficult for other drinkers to understand. In this country, it seems that any other change for health benifits is met with more understanding:
"Oh you're giving up smoking- that's wonderful, hope you manage it", "Oh you're on a diet, well done- how much weight have you lost?"etc. However mention you're cutting back on the booze, and people seem incredulous, and sometimes even seem to take it personally "well I'm not giving up"- umm..okay...I didn't actually ask you to...

At the moment my medication is a good excuse, but being perfectly honest, I dont see this new more sober lifestyle as a temporary thing, more as a long-term lifestyle change. We all know that alcohol isn't good for us, and can cause all manner of health problems, but there are two in particular that matter to me: 1) Alcohol can cause brain damage- Now given I know have my second brain tumour, would I really wan to risk more complications? And 2) alchol can cause many diffent cancers- again, I think one type is enough to deal with...

Then there's the other things such as weight- I am already overweight, and would rather lose the pounds than pile them on via lager, and appearance. I'd rather my skin didn't age too quickly- I have bad enough crows feet as it is!!!


I am not saying that I am going to go teetotal- that seems too drastic, I still want to enjoy a couple of pints down the pub, and to have a nice glass or two of wine witht dinner, I just want to cut down on the quantity I used to drink, so that I have more chance to stay fitter and healthier for longer. I am also very hppy for others to carry on drinking; if it weren't for my health issues, I know I would be, so please don't take my new found sobriety as a criticism, if anything just think how much cheaper it might be to buy me a drink now...

Power of People

Today (March 31st) is the last day of Brain Tumour Awareness month, so I thought I'd talk a little about why the groups and forums that raise awareness are so important to me and many other Brain tumour sufferers/survivors/patient supporters.

As with every day this month, I have been sharing (on Facebook), the daily "Did you know" facts posted by BT buddies, the UK based support charity that I am raising money for. Today's quote fits in perfectly with my own views of knowing others who have had /or still have brain tumours:

"Those of us fighting the brain tumour beast are a band of brothers and sisters. None of us want to be on this journey, but we are, and so we fight, side by side, helping eah other with love, information and support." (Dr Michael Gabriel)

For me, opportunity to communicate with others in the same or similar situation, to yourself, is an important way of coming to terms with the illness, and in getting through it.

The hospital in which I am treated (The Norfolk and Norwich) is home to the local charity, The Big C, and offers many groups for people with cancer, including a Brain tumour group, but there is a problem. Norwich is a 25 mile trip from my home in Mundesley, and the hospital is further still, meaning I only tend to go there for my hospital appointments, which are all on Fridays. The group meets on a Thursday. Therefore if I wanted to go to this group, I'd have to go purely for that, and frankly (not wanting to sound too harsh), I have better things to do with my time- bear in mind people with brain tumours cant drive by law, so most people rely on lifts to get there.

This is one of the reasons why intenet forums and websites are so necessary and useful. When I was diagnosed with tumour number 1 in 2006, I was clueless. Like most people my only knowledge was what I'd read or seen on the news, which compared to a lot of cancers (eg breast, lung, leukemia etc) was limited. So I searched the internet to find sites. There are plenty of general cancer sites, but again, comparitively fewer specifically for brain tumours. Whilst general cancer sites are great for gathering basic information, I think a lot of cancer sufferers (myself included) prefer talking to people with a similar type of cancer, as your experiences are more likely to be similar. I think this is especially true for brain tumours, particularly as out of the many types of cancer, brain tumours seem shrouded in mystery and uncertainty. When first diagnosed, the only websites I initially found seemed more concerned with statistics, which as I've said before do little to raise the spirits, as they are far from positive for brain cancer.

So I started to speak to people on more general cancer sites such as Cancer Research and Macmillan. I was pointed towards some Brain TUmour sites, but the majority were AMerican. I have no problem with this, I've actually made some good brin tumour forum friends on the other side of the pond, the problem comes when asking for advice. Treatment used in the USA can vary to that available in the UK and vice versa. Which is why I was pleased when I stumbled across BT buddies.

BT Buddies is one of the only UK websites dedicated to providing information and support for people with brain tumours and their friends and family. Through them I found a lifeline, although I have never yet found anyone online with my particular type of tumour (Anaplastic Ganglioglioma) which just goes to show what a rare type it is.
BY taalking to others in a similar postion, you can be completely honest without fear of "freaking people out".

You see this is one problem with your everyday healthy friends. As much as I love you all, it is impossible for someone who has never had (or known anyone with) a brain tumour, to even to begin to understand what you are going through (although I hope this blog has helped over the last few months)

For example when I started having symptoms of my recurrence in October when I returned from Taiwan, I KNEW what was wrong, the diagnosis was just confirmation, yet (healthy) friends have this understandable desire to keep you positive, by saying things like "Oh it could be something else", "You're probably tired "etc. I contacted a friend I'd made online, who had a BT 3 years ago and they just said "Shit, but yeah,does seem likely- so has a MRI been booked?"
This is the kind of support I needed, someone who accepted (as I had) that in all likelihood, it was the worst case scenario, but could understand it and was willing to open up chanels of communication.
I don't pretend to react to things the same as ALL people with brain tumours. However I think a lot of us through weighing up all posibilities become a lot more open to talking about mortality and the likelihood of ongoing recurrences. Most people, again- understandably- don't like talking or even thinking about these things. I know I can be unfair to people who feel awkward, but sometimes I need to be really honest about these things without upsetting people, and forums are the one place I can do this, I regularly read the motivational stories of long time survivors whih are fantastic. But the other, very real side of the coin is that many, simply, do not make it. I am grateful that there are places where I can voice these concerns without upsetting loved ones.

I also get a reaal comfort from helping others, particularly those at the beginning of this journey, and those supporting people who are. It's nice to have the opportunity to get something positive out of your situation by helping others.


This is the reason I started this blog alongside raising money for BT buddies, I wanted to carry on what they have started; giving honest and open information about the life of a brain cancer patient, alongside hopefully helping people deal with it in the first place.

So please, please, please if you haven't done so already, donate what you can to BT buddies via my just giving page: http://www.justgiving.com/Lucy-Cunnington0


And to all the websites/ forums that continue to keep me motivated and give me hope, Thank you.

...just keep the side effects coming...

So if I hadn't already worked this out, I have definitely come to the conclusion that this cancer business is a bit of a bugger to put it mildly! The problem, everytime I think I've experienced all the side effects I'm going to get, something else comes along and throws a spanner in the works. The really annoying thing is that as we now know my tumour has drastically reduced in size, these new side effects tend to be caused by the treatment (chemo), rather than the illness itself.

The latest side effect seems to (according to Macmillan's website) be what is known as "Peripheral Neuropathy". In basic language, the fabulous drugs that blast away all those nasty tumour cells, can also damage some of the nerves in the body,most commonly the ones in the legs, feet, arms and hands. The damage can present itself in different ways; pain, numbness, unusual sensation and burning. In my own case, it seems to manifest itself as numbness in my left arm, and an ocaisional "burning" sensation in my left hand. Although it is not unbearably painful, it is uncomfortable and less than pleasant.
It is not my first experience of nerve damage. My accident caused nerve damage in my arms and left leg, and the toe on my left foot are still affected (I haven't felt them for over ten years!). Neuropathy, like all nerve damage is not reversable, however nerves can repair themselves, so hopefully after chemo is finished, over time the nerves will slowly repair and the burning and numbness will stop. However, as with my toes , the tips of my fingers may not fully recover..

Otherwise I have to say most side effects have reached a manageble level now. My left sided weakness is long gone and I can use my hand normally, and walk relatively well, My energy levels are only really bad during chemo week and I'm sleeping really well. The only side effect which is increasingly bothering me is my skin. Again, thanks to the chemo (why does making me better have to be so unpleasant?),my skin is incredibly dry, at times it almost feels papery, is constantly stiff and feels quite tight on my face and hands which I smother in E45 cream day and night. I have always had problem skin, but in the past it was more likely to be grasy and spot prone, so having to moisturise so much is a new experience. About five minutes after I've applied cream, it feels dry again, so it's a constant battle to feel comfortable.

WEll think that's enough moaning for now! Thankfully we have had some better weather this week which has boosted my mood and energy (although you wouldn't know it now thank to the sea mist developing outside!). Weather helps as I get less of my arthritic pain in warm weather, which makes the cancer/chemo side effects easier to bear.I have just under two weeks until the next chemo cycle , so I'll try and keep the serious moaning in check until then!

The importance of raising awareness.

Those of you who are friends of mine on facebook will know, this month is Brain Tumour Awareness month. You will know this due to my snazzy profile picture, and my habit of constantly sharing facts posted by the BT buddies FB page, and my reference to all things brain tumoury!

It is not my intention to ram my illness down people's throats. In fact this is the LAST thing I want to do. One of the (very) few good things about having a brain tumour is that it's relatively unnoticeable to strangers. Especially this time with no surgery scars, or hairloss, I can walk around and look perfectly normal(ish!) to most people I meet. When I post information it's not to make others feel bad or sorry for me- I've never actually been much of a pity fan; I just feel that it's important to raise awareness so that the work of existing brain tumour charities are supported, and so that people understand more about a condition that is not as rare as they'd like to think.

Primary brain tumours (like mine; cancers that start in the brain) are only about 2-3% of all cancers, however overall brain tumours (including secondary tumours that have spread from elsewhere) make up 25% of all cancers diagnosed and treated. Given that one in four people gets some form of cancer in their lifetime, it doesn't take long before the chance of getting a brain tumour becomes a very real prospect.

Unfortunately, dispite this, brain tumours are continuously over shadowed in the media by other types of cancer. I am not suggesting that any one cancer is worse to deal with psychologically than another, but due to awareness campaigns, common cancers such as breast and prostate cancer are now generally treatableif caught early enough- which many are due to the now widely available information in the media telling people how to spot the signs. Other cancers such as cervical have also been publicised, with more woman going for regular screening than ever before.. Plus thanks to research that lead to the development of the HPV vaccine, one day it may be a cancer that nobody has to live with.

All these advancements are wonderful (obviously) and in large part have come to be from relentless awareness campaigns stressing the importance of adequate research and funding. By comparison, unfortunately, brain tumour research lags behind.

For the statistic lovers; here are some shocking ones:
1) Brain tumour research receives only 0.7% 0f cancer research spending in the UK.
2)65% more women die from a brain tumour than from cervical cancer.
and 3) More people under 40 die from a brain tumour, than from any other cancer.

These are three very good reasons why awareness is so important. I have a dream that one day ( although probably not in my life time), brain tumours will no longer be the scary unknown cancer, and will be more easily treated, if not completely curable and preventable. This is not a freak illness, it can happen to just about anyone. It can happen to friends, family, children... until more funding is given over to brain tumour research, sadly the numbers of sufferers will keep rising.

If you do nothing else during this awareness month, take some time to read the facts I have posted on facebook, maybe even take a look at the btbuddies website: btbuddies.org.uk and try to donate some money either to BT Buddies via my just giving page, or to Brain tumour UK, trust me- every bit of help is invaluable.

Wake me up when the chemo ends...

Don't know how many time I've said this. But I'm going to go for the millionth: CHEMO SUCKS!!! Today is the first day of my 4th chemo cycle, and as predicted about an hour after taking my tablets, Nausia hit and nothing was going to hold back the sickness. It's the sae story every time, yet I always hope against hope that each cycle will be different.

Obviously there is a positive, as we all know now, my treatment is working. Now I know that logically, this should make things easier, as there's a point to my suffering, but honestly? nope- it's still just as hard forcing yourself to take tablets that make you feel awful!

FOr anyone who still thinks tablets are a "chemo-lite" compared to IV chemo, I hope I have squashed this myth. Granted I am glad not to have IV, mainly (as my history of blood tests show) because my veins are notoriously difficult to find, and one session could take forever just to set up! But be under no illusions, the side effects are just as brutal.
Let's ignore the whole hair thing- as I've dealt with it before- but just a point, not all IV chemotherapy drugs cause hair loss either. By no means can you judge the strength of a drug on this factor. Neither should you assume (as some people have) that my condition wasn't very severe so "can be dealt with by tablets- isn't that good?"! It is the type of drug that determines the route, not the seriousness of the disease. my partiular drug "Temozolomide" is intended for my type of tumour (glioma) and can only be given orally. Trust me a recurrant high grade tumour is serious, whether chemo is given through needles or not!

The weird thing about the side effects, is that some are only present during the five day course, where as others seem to linger all the time!

Nausia and vomiting (I am glad to say), only seem to occur when I'm on the tablets. Tiredness seems to be with me all the time, but extreme exhaustion is only during the treatment period. My skin is constanly dried out, for the last few months I have had to smother myself in E45 creme to prevent soreness, and I also have muscle tightness/stiffness in my left choulder.

However on the good side. ALL my symptoms now appear to be caused by the chemo. I have NO tumour related symptoms anymore e.g No pressure headaches, No left sided weakness and No problems walking .
I still have a slightly numb feeling on the left side of my face and the old occaisional dribbling problem, but as these are most likely caused by nerves damaged by fits, I accept I may just have to live with these indefinitely.

It may not seeem like it, but I am actually a little more positive!! I'm used to these side effects now, know what to expect, and thankfully know that it won't be too long before the treatment's finished.

Making predictions...

It's Thursday of what I call "Chemo countdown week" in prparation for tomorrow's hospital appointment when I pick up the chemo drugs, ready to take them first thing on Saturday morning, which marks the start of "Chemo week proper". The trouble these regular-like-clockwork events become not only quite dull but a little too predictable. Take today for example- a lovely sunny day here in Norfolk, and it would have been nice to go out, but I had my telephone assessment. Basically (for those not in the know!), on the day before my appointment, a chemo nurse from the N&N gives me a phonecall, to check up on me and to see if there are any issues/ problems before the next cycle starts. Invariably these phone calls barely last five minutes. But it is stressed that they are important and should be treated like actual hospital appointments. Unfortunately like hospital appointments, there are often delay. However, unlike hospital appointments, there is no way of knowing this. When I go to hospital, they have a whiteboard, with any delays written on it. At home you're just stuck waiting until they call. Today this was an hour later than the planned time. This is not only irritating but a little too predictable; I know that if my phone appointment is 1.30, it is unlikely I'll hear from anyone until at least 2 o'clock, which does nothing for my annoyance levels!

Then on the day itself (tomorrow), I know that I will wait in the waiting room for what seems hours, only to be whisked through the hemo unit at break-neck speed! As I enter I will be given two swabs (that look like long handled cotton buds), which I have to take into the toilet and swab the inside of each nostril with one, and then eah side of my groin with the other- joy. This is to check for carriers of MRSA, and every person entering or leaving the unit has to be swabbed. After this exciting activity, I go to the desk, pick up my chemo drugs and anti-sickness tablets (if needed) and can go on my merry way. Given that I live 25 miles from the N&N, it means that it can take an hour and a quarter each way, for just a few minutes at the actual hospital!

The worst of the predictable events is reserved for Saturday. Normally a person doesn't know when they're going to be sick. If they feel a bit ropey before bedtime, they may think they are coming down with something, But generally the act of actually being physically sick is something of a surprise. This is a good thing- who really wants to know in advance?!

I, however, will go to bed on Friday night, knowing almost for certain that I will be sick the next day (I have consistently been sick on the first day of chemo for every cycle). If going to bed knowing this is difficult, imagine waking up the next morning and having to take medicine, that you know is going to have this effet?! Good as it was this week, to find out it was actually working,it still doesn't make me relish the thought of taking the horrible stuff. Aside from the first day vomiting, I can also predict with some certainty, that I will feel pretty awful for the next week, and will be completely devoid of energy.

That said I can also (More happily) predict that by next Wednesday I'll be really pleased to have got yet another cycle out the way...