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.