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...