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....!