20th July 2007

I was skint as a student nurse but now I’m scarily skint.  On Friday 13th I was told that I was not eligible for any benefits because I am still considered to be a student even though my course has been suspended.  Students are not eligible for income support they told me, even if they have previously been paying into the system like me.  Having never signed on because I’ve always worked instead, I felt pretty miffed about it.  I rang the School of Nursing for help and was told sympathetically that students had experienced this problem before and unfortunately there is a loophole in the law regarding students in situations like mine.  I have fallen into a government loophole.  I was also told it was a shame the university had not sent a different letter to the student grants stating that I was infact no longer a student and therefore no longer in receipt of an NHS bursary instead of telling them I was suspended.  I suggested they inform staff and students about this loophole in the future to save them the stress and time caused by hopelessly going off down the wrong route.

As it stands at the moment, I’m screwed.  Because I am not in receipt of benefits, I am not allowed to claim back my travelling expenses to and from the hospital.  I asked my mortgage company for a break in my mortgage payments but was told I would be charged an extra amount after the break for the remainder of my mortgage agreement which I can’t afford either.  I also tried explaining the situation to my bank (HSBC) and asked for a 2 month break on my small credit card repayments.  They refused this but kindly agreed to increase my overdraft (limit) for me.  I am doing 2 part time jobs, my charity work, training for a half marathon and fitting these round my treatment sessions at the hospital each day.  I’m not yet earning enough money to cover my bills.  I even tried giving the correct reading on my gas meter to see if I could reduce my bill which was estimated on winter usage.  Surely, the true bill would be less since I have not been using the central heating?  My bill increased by £40!  Then I received a bill from Student Grants saying they have overpaid me.  I am extremely fortunate to have been offered help from my family but this will be a last resort for me.  I want to be able to survive on my own as a single woman.  I’m learning not to get angry and I will find a solution.

The finance worries have naturally affected my sleep!  I wake up at 4am and I’ve been having some strange dreams: on Monday night I decided to buy an old water mill to live in because it was a bargain at £11,000.  The reason it was so cheap was that it was about to be flooded so I came up with a plan to reposition all doors 30cms above the original door frames and brick up the bottoms as flood defence.  On Tuesday night I dreamt I had 5 cats and I sent them out into an imaginary garden before realising the garden was full of foxes.  The foxes started chewing on the cats and I ran out to save them and took my mutilated but still alive cats to the vet.  They all lived but they looked a bit funny.  I’d say these are positive dreams, I seem to be taking control in them but why can’t I dream about James Purefoy, (Mark Antony in ‘Rome’) or Nick Knowles, instead?!

Friday 13th was going badly and it was dark and rainy and then my phone rang and it was Harley Davidson!  I’ve been trying to find a company to lend us the bikes for our sponsored charity motor bike tour of Europe in Spring 2008.  I had a good conversation and we have been invited to go down to Oxford for a meeting.  I came off the phone and jumped up and down for a while in excitement, speed talking about it to my brother Tom who raised his eyebrows in response.  Then I sent a text to the team with the news and I think they got a bit excited about it too.  The excitement gave me inspiration and whilst I was painting the hatch for Tom’s attic, I came up with a name for the tour: ‘Breast Quest’ – I had to modify it later as a check of domain names revealed this was some dodgy porn site.  It has now been renamed Breast Quest 2008!   Ali agrees that it encapsulates our aims nicely; to raise breast cancer awareness in younger women and raise funds for charity as well as to show you can have cancer, still have fun and achieve your dreams.  We have our next lesson booked in with Shires Motorcycle School too so if you live in Nottingham, keep off the roads on 29th July!

On Monday afternoon, I started my radiotherapy sessions.  Ali gave me a lift to the hospital for the first one which was handy, because normally it’s 2 buses there and 2 back.  We sang loudly to her ‘happy Cd’ on the way, (in a ‘we can sing’ stylie), and tried a bit of seat dancing too. 

On arrival at the hospital this is what happens each time: I go into the radiotherapy department, place my card in the slot and take a seat.  Eventually, I’ll be given an ugly blue gown to change into but the smalls are all in the laundry so I’m currently unidentifiable as a cancer patient in the waiting room until my name is called.  Sometimes you have to wait a while but the treatment is very quick.  I lie on a table with my breast exposed and some pen marks are drawn around my little tattoos, (if I forget to remove these I get little star shapes on my bed sheet which looks unusual).  My right arm is positioned above and by the side of my head and numbers are called out as the huge radiotherapy machine is moved into position according to my pinpoint marks, the numbers and a red light beam, I think.

There is some music playing – Elton John was droning sadly on about wanting to be loved on Monday.  Fortunately, he was drowned out by the beeps indicating that the doors to the room are closing.  The radiographers scarper off to the safety of their control room, away from the harmful rays.  Elton tries to sing again but is drowned out by 2 loud beeps each lasting about 30 seconds as my breast is zapped.  I stop breathing during the beeps in case I move and something else gets zapped.  The radiographers reappear and reposition the machine, (it points down and diagonally to begin with from the left).  Now it aims upwards at my right breast from the right hand side.  The door beeps again and the radiographers leave and I listen without breathing to the long beeps again one after the other as I am zapped.  That’s only about 2 minutes worth of zapping.  Then I get dressed, we all say “See you tomorrow!” and I say, “Thank you very much.” before leaving.  The staff are very friendly and informative.

Ali and I were leaving on Monday when she turned to me and said, “Give me a hug.”  As I was hugging her, I noticed an elderly man over her shoulder with a walking stick raising his eyebrows at the spectacle.  “We’re having a hug,” I said, “would you like one too?”  “OOOOh yes!” he said and suddenly began to move with ease, (and speed), towards us.  Ali and I made a quick exit.  The radiotherapy experience is not too bad, nothing compared to chemotherapy which I have thankfully escaped.  I have already made a radiotherapy friend, another younger woman receiving radiotherapy, who told me about the horrors of chemo.  She wears a wig but it’s a very good one, I only know this because she told Ali about it on Monday.  Instead of counting down in terms of treatments, I find it helpful to count in eggs, (see special astronaut egg diet in ‘Astronauts and Air biscuits’), – 3 eggs down, only 30 to go.  I may have to find another way to do this after I’ve eaten 20 eggs or so.

That evening, I played Touch rugby and got knocked over by a member of the opposition who whacked me in the breast.  Instinctively, I clutched my breast, fearing terrible damage, before realising he’d hit the good one!   We played in the semi-finals and despite being one man down for a while, (due to a strange referee who kept mysteriously sending our players off), and a little bit of dirty play by the opposition, we won 8-4.  It was a hard game and our team defended brilliantly.  I even scored a try.  It felt great until we got caught on our bikes in a small hurricane on the way home and got whiplashed and blinded by rain.

Mrs Hartley is back!  My mum and dad are visiting as they’re going to a wedding.  It’s the first time I’ve seen my dad since January and my diagnosis in April.  It’s good to see him.  Mum is well known for her malapropisms and spoonerisms.  She has already asked me about my BCT (CBT) and when she told us she is off to buy a ‘fascinator’ for the wedding, we all laughed thinking she had made it up.  It really exists though!  According to Yourdictionary.com, it means, “One that fascinates” or “A woman’s head scarf”.  Apparently, it includes those crystal and fluffy feather things they sell in John Lewis’ that women wear on their heads to weddings in place of hats!  I told her to wear a flamingo or something on her head instead – now that really would be fascinating.

There’s one last thing – I’m going out for a drink with the man from ‘No. 26 – Raindrops keep falling on my head’ on Saturday night.  He’s been away for a while and I don’t think he knows what a disaster area I am yet, unless he’s ever come across my blogs or someone has told him about our Central News coverage.  I’m not sure how to or at what point to broach the subject of my little tumour problem but I know it’s unavoidable and only fair to tell him.  It should be interesting!  Ali gave me some good advice so, the plan is this: ‘Play it down!’.  I expect it will be just the one date. 

I can’t help wondering what’s gone wrong with my plan to cut stress out of my life!

12th July 2007

Last night, we had an informal meeting for our European motor bike tour, (to raise awareness and money for the Lavender Trust), and my head is a little bit sore this morning.  The cars passing by outside the window here make me feel dizzy.  I know an excess of alcohol is a risk factor in breast cancer but hey! I’m doing my best by eating some really foul tasting stuff in an effort to boost my immune system and detox my body.  I don’t drink often and an occasional blow out is good for the soul.  Anyone who has ever tried spirulina will sympathise with me.  It is a dark green, stinking, pond slime looking powder which tastes gross and is very difficult to mix with water.  I have tried every way I can to make it palatable.  I’ve tried disguising it by adding it to soups or pretending it was a delicious spirulina shot in a proper shot glass.  Nothing works, you just have to take it like a man and try not to belch afterwards.

I’m digressing.  So, our informal meeting went well, it was attended by Ali, Tom, (the inspiration behind the trip), and Tris, (top photographer!).  We looked at a map of Europe and Tom encouraged us to think further afield which was exciting but we haven’t agreed on a final route yet.  We discussed sponsorship funding ideas too which was useful.  Finally, we finished with a spot of team building over a meal warmed by a borrowed patio heater thing – good old English weather!  For this we skipped team building exercises in favour of bonding by discussing bowel habits.  This seemed to work well and I’m sure it was interesting for the neighbours too.  It proved a good choice of topic because everyone spontaneously and freely contributed to discussion and we all learnt new and interesting things, especially about each other.  One of us was particularly eloquent on the subject matter but I won’t reveal who it was because I am a lady.  You know who you are – You air biscuit/barking spiders/stepping on a toad/love puff/cup cake/cutting the cheese pro! 

We laughed long and loud until after midnight which was just what I needed because earlier in the day I had done a bit of crying into a tin of paint whilst painting radiators for my brother, Tom.  This was brought on by the same old chestnut – the forced menopause and end of my fertility because of drugs treatment which will begin not long after radiotherapy.  It was triggered by a glut of pregnancy and child birth news that I received this week.  I’ll get over it because I am pleased for people and I know it’s not the end of the world.  I’m just coming to terms with the end of one of my dreams.  5 minutes later a vision of Little Orphan Annie with frizzy red hair and freckles popped into my head singing “Tomorrow I’ll love yer”.  This often happens to me when I’m feeling blue and whilst it doesn’t cheer me up, the fact that she stays in my head singing the same words for the rest of the day usually distracts me from my glum mood by driving me crazy.  The same thing happens when I’m tired because Lionel Richie pops into my head singing “Hello, is it me you’re looking for?”.  Sorry Lionel – I can’t stand that song!

On Monday, I begin my radiotherapy…  I stopped and read that sentence a few times because I can’t quite believe it.  I’m really not looking forward to subjecting my body to a treatment that I don’t really trust the benefits or side effects of.  I am slapping dermatological cream onto my right breast in preparation for radiation damage to my skin and I smell like petroleum as a result.  I have also bought some organic eggs as I am following an astronaut diet.  Apparently, eggs, spinach, whole grains, berries and fish contain antioxidants and can help DNA repair of healthy cells.  Since radiation damages healthy cells as well as any cancerous ones, healthy cells need all the help you can give them.  An egg a day for 7 and a half weeks?!  I hope it works because someone’s going to suffer from my low-flying ducks!  

I’m ready for lift off… ZAP ME!

5th July 2007

I’m trying to make my blogs smaller because they have been growing recently.  It’s all that rain. 

Last night I continued my education of real ales with a pint of Exmoor Beast, (very good but seriously strong), some Lancaster Blonde, (bit strange) and some Caledonian Nectar, (can’t remember).  I have a small pain behind my left ear today.  I think the beast got me.

I swapped roles with my sister-in-law, Ali, and accompanied her to the hospital last Friday.  It seems the pain that Ali has been experiencing is due to her periods returning after the end of the Zoladex injections, so that’s a relief.  I know she took a trip to cancer paranoia land where all new pains are analysed suspiciously in case they are a secondary cancer growing somewhere.  Fortunately, my consultant who is also Ali’s consultant, suspected I might be with her and popped in to inspect my boob to save me yet another trip for a post op consultation.  Good man.  After a thorough inspection, he seemed satisfied with the results and said my breast would continue softening.   That’s good – it was quite hard at first but last week everything seemed to settle as if I am nearly healed – I have less aches and my back feels less vulnerable.  Back to normal, well almost!

Since my reconstruction, when back muscle was removed to reconstruct my breast, fluid has been collecting at the site which is normal and I’ve been having it drained once a week.  My consultant decided it was time to try injecting some steroid into my back to stop the fluid forming and it seems to have worked.  My breast still feels and behaves like a muscle because that’s what it is but I’m getting used to the sensations now.  I yawned at a bus stop during the week and my breast went into little spasms which was odd.  I was sure it hadn’t been noticed by others standing at the bus stop but I did a quick check anyway by looking around casually with a sheepish grin.
 
This week Ali and I had our compulsory basic training courtesy of Shires motorcycle training as the first step towards our charity motor bike ride around Europe in spring, 2008.  It was really exciting but exhausting too.  Central News filmed us practising around a car park and fortunately they only showed clips of us in our crash helmets with our hamster cheeks – probably because I had a cold and we both looked so knackered. 

Our instructor was excellent, he was really patient despite the rain and a small incident where I ran him over.   Fortunately, Central news had left by then.  It was about 1.30pm and we had been on the go since 8.30am.  I was very hungry which usually makes me irritable and I lose my concentration.  I think my brain signals begin to misfire and I often end up doing the reverse of what I want to do.  Well, my brain certainly misfired when the instructor stepped towards me to explain something, because instead of slowing down, I accelerated.  The rest of the incident happened very quickly but I think it went something like this: – the instructor, seeing I had lost control of the bike, (and my mind), reached for the bike handles either to slow me down or steer me away from him so I panicked and accelerated into him again.  I think he then decided to abandon mission and save himself, leaving me speeding off wildly down the car park towards some bushes.  Apparently, I pulled a small wheelie before eventually regaining control of the machine and stopping. 

My mishap was funny later although I’m sure Pete, the instructor was a little bit scared of me after that.  Now, at the time, I was horrified by what I had done and also seriously concerned as we were due to hit the open road right after lunch.  We were learning with 2 other people, who were really nice about the incident and kindly made a joke of it but I was having visions of me panicking at roundabouts and instead of stopping, careering on to them out of control.

Fortunately, I did manage to stop at roundabouts but Ali and I learned an important lesson in clutch control thanks to the weather – on a dry road if you let your clutch out too quickly it’s ok but on a wet one, your back wheel slides out and you have a very hairy moment.  We had great fun and I even tooted some firemen as we passed their truck.  Ali did well although embarrassingly, she stalled going up a hill with a lot of rush hour traffic behind her.  I didn’t see her but I could hear it on the intercom, “Now, don’t panic… try to get to the edge of the road…”.   The instructor was very calm. 

Looking at the photos (www.tristanpoyser.com!) later, I couldn’t believe how small we both seem – we look like 2 kids doing their compulsory basic training!  We are now licensed to ride mopeds and 125 motorbikes but will need to complete the rest of our training in order to get our full licenses and the type of bikes needed for a long trip around Europe.  We’re looking desperately for a name for the trip as our website is underway.  So far we have only come up with ‘Hooters on Scooters’ but we think this may not be appropriate!  Any suggestions will be gratefully received!!

Europe here we come!
How am I doing? – Shortest blog yet!  Still long but better.