26th August 2007

Oh my word, whilst writing this week’s blog, I had a peek at last week’s to see what I’d written and discovered that I’d started repeating last weeks blog in this weeks. I think it’s because I got this week mixed up with last week and next week in my head which resulted in me cancelling stuff and then uncancelling it.  Hey… it all makes sense to me.

At the moment, I have a really strong desire to go on holiday somewhere so I don’t have to plan my days around radiotherapy, eat boiled eggs, apply cream to my breast three times a day and see people with cancer every day.  I imagine myself lying on the beach, my face warmed by sun, sea gulls flying around overhead and the sound of waves in the background.  It seems frighteningly real when I close my eyes.  I can catch a faint whiff of the sea.  Normally, it would take a lot to make me lie still on a beach but I could quite happily lie around, doing nothing, thinking nothing or just reading a book.  If you’re nodding your head at this, book yourself a holiday.

Not much happened this week.  My right breast is pretty red now from the radiotherapy, it looks sunburnt and my itchy nipple was driving me crazy.  I tried not to itch it because it stung like mad when I did and the only way to get some relief was through slapping it.  Fortunately, I’m having my ‘boost’ treatment now, (to target the tumour bed), so treatment is confined to a 2 inch square where the lump used to be and my peeling nipple, (below this area), is recovering.  The whole sun burn effect makes me think of the film, “Close encounters of the 3rd kind”.  If you’ve not seen the film, the characters who saw UFO’s ended up with a red swathe of burnt skin across their faces like Brits on holiday.  If anyone asks, I’ll pass of my red swathe as a close encounter of the 3rd kind.

I’m still foxed, (and so is everyone I speak to), as to why I was ever prescribed a drug that’s normally given to postmenopausal women.  I thought I was looking pretty good for my age!  An Oncologist I wrote to told me the drug is not effective in premenopausal women like myself.  The other day I was even more confused when I was told that a doctor had now prescribed a different drug plus ovarian ablation since last seeing me.  I was pretty shocked by this because I thought ovarian ablation meant having my ovaries zapped to make me sterile – “Blimey,” I thought – “I only asked the woman about my chances of having kids and she’s  panicked and decided I should be sterilised as I’m a pregnancy risk!”  I decided to check the definition of ‘ablation’ and realised it means either irreversibly suppressing the ovaries or temporarily with a monthly injection, (that I knew I was having anyway), so it’s not quite as drastic as it sounds.  I’ve been offered an appointment with my surgeon and breast care nurse to properly discuss my drugs and fertility issues and clear up any confusion.

I’ve been doing some more research – I tried to find out about the Blue Peter presenter, Caron Keating, who died of breast cancer.  I read she had a lump removed and then avoided chemotherapy and had radiotherapy just like me.  I stopped reading after I found she went organic and dairy free like me and only lasted 7 years from diagnosis.  The cancer came back in her spine.  It frightened me a little, especially when I found a comment on a cancer forum suggesting that if she had had the chemotherapy, she wouldn’t have died so soon.  Oh bugger it!; in the end I decided it’s a case of Doris Day – “Que sera, sera”…. It’s good to inform yourself via the internet but sometimes you can find too much information.  I think it’s best to read the information, digest it with a pinch of salt, then go away and make yourself a nice cup of tea.

A bit of “What if…?” stayed in my head though – I know that Caron Keating’s case is unusual but I am a bit unusual.  I’m not saying I’m unlucky because I don’t believe in good and bad luck or fate but secretly I do think I’m a bit jinxed sometimes.  Here’s a conversation that took place between my mum and my brother just after he’d told mum about my diagnosis:

Tom (stern voice): “Now mum…”
Mum: “Yes Tom?”

Tom: “I don’t want to hear any more talk about Lou being ‘unlucky’.”

Mum: “Ok Tom.”

Tom:  “It’s all crap – it has nothing to do with luck. Ok?”

Mum: “Yes Tom.”
Big Pause……………
 

Mum (grinning): “Yes, but she is a bit unlucky, isn’t she?”
 

Didn’t Leonardo DiCaprio say in the film Titanic: “You make your own luck?”  Well, I believe him but how unlucky was he after that?!…  Titanic sank and he froze to death.  I used to think I jinxed others too.  I had an inexplicable crush on Ivan Lendl as a teenager and every time I watched him play tennis, he lost.  I stopped watching him and he started winning.

Canoe man has just arrived back from competing abroad.  He fell out of his boat, chipped his elbow and lost quite badly…

I managed to pick up a parking ticket whilst parked outside my own house this week – Ali lent me her car and a neighbour kindly lent me her visitor’s parking pass.  Unfortunately, the pass was 3 days out of date.  It wasn’t the neighbour’s fault.  I’m now waiting to see if Ali has received any speeding fines for me.

I’m still running but I’m feeling pretty tired now.  I’m not sleeping very well but more worryingly, I’ve developed jogger’s belly.  After 40 minutes running, I have an urgent need to … go for a ‘number 2′.  Apparently, this is quite common amongst runners – I have a friend I used to go running with and she had the same problem – we had to incorporate public toilet stops into our runs.  She’d run into a toilet and I’d hang around outside jogging on the spot and doing star jumps, then she’d run back out again and we’d set off towards the next toilet stop.  Once, during a very long run, we were lucky enough to find portaloos placed at intervals around a Regatta lake.  She used all 3 portaloos plus 2 other public loos with results each time.  

Fortunately, I’m not that bad yet but I could do without this little problem for the Robin Hood half marathon.  Paula Radcliffe may have peed in public but we could do without Lou Hartley…

Ali comes back from holiday tomorrow and although there’s lots of good news for her about the motor bike ride around Europe we are planning for charity next year, I’m still struggling to find us practice bikes.  Apparently 125 bikes are like “hen’s teeth”, so I’m told.

At last, I’m on top of things financially and I may receive some help after all – the benefits people have just sent me a 20 page document to complete, (after 2 months of correspondence).  I have also become adept at managing my finances –  when I hear a bill drop on the mat, I’m straight there.  I think; “Deal with ‘em quick Lou, take control!”, so I rip open the envelope, digest the contents thoroughly and then I file them in my new efficient filing system – a pile of papers on my desk.  I’ve stopped worrying!

The best news yet is… I only have 4 organic boiled eggs left to eat as part of my astronaut diet to combat the effects of radiation.  4 more treatments left and then I’m out of that place!  I used to really like eggs…

12th August 2007

Did anyone else have a strange week?  It wasn’t just me – everyone I spoke to felt it. It was a week of frustration and confusion culminating in an invasion of biting critters.  Apparently the infestation is due to the crazy weather we’ve been having.  Last night it was warm enough to finally stand outside the pub but we had to move in after a giant mosquito/gnat attack which left us all spotty and scratching at the bar.  In between her Sailor Jerry’s and coke, Jo even trotted off to the late night Co-op next door to buy some bite-appease cream.  I’ve checked for new/full moons but not found anything odd to explain the week.

The week kicked off well with our team meet to discuss the Breast Quest 2008 motor bike trip around Europe for charity.  The route plan was finally unveiled by Scratchet, (aka ‘Crappett’ after a little slip up by my dad).  We were all very excited.  So here it is – a 28 day, 2000 mile, stress-free jaunt (?) around exciting places in Europe:

Nottingham Market Square – Paris (Lou does half marathon)- Brussels-Luxembourg- Strasbourg- Bern-Stuttgart-Nuremberg-Leipzig-Berlin (visit 6th annual Breast Cancer Conference)-Swiebodzin-Lodz-Warszawa-Keilce-Krakow-Povazska-Bystrica-Bratislava-Vienna-Graz-Ljublijana-Palmanova-Milano (visit ‘big’, correction, ‘important’ Breast Institute)-Geneve-Home

Now, Ali and I got hopelessly lost on the way to local Sandiacre the other day so it’s a good job we’re having intercom systems and Crapett and Tris to help guide us.

At our meeting we had an agenda and spreadsheets.  It was most impressive and professional until Ali let out a couple of blinders.  The first came after she had examined Scratchet and Tris’s motor bike helmets and noticed a lot of squashed flies on them.  Without thinking she opened her mouth and told them very seriously they must both go home and give their helmets a good polishing.  Later, Tris suggested we all go wake boarding with him some time.  I think Ali got water sports and S & M attire a little mixed up in her head here because she piped up from the end of the table, “Brilliant, do we get to wear PVC?!”, to which Scratchet replied dryly, “YOU can if you really want to,”.  I had a little image of Ali wakeboarding in a pair of small PVC shorts, basque and face mask after that which made me grin.

The motor bike training has gone on hold whilst Ali is on holiday for 2 weeks.  We tried out the bigger 500 bike we’ll be doing our tests on and felt excited.  They’re big machines and a lot heavier than we’re used to and they’re also higher.  Ali is worried because she is just an inch short of leg length on them.  We’re still struggling to find practice bikes but we’ve had some great sponsorship offers.  We also met with a lingerie company and are working with them to help raise breast cancer awareness when their new shops open.  It was quite exciting until Ali suggested an underwear fashion show to mark the opening during breast cancer awareness month in October, modelled by women who have had surgery for breast cancer and we unthinkingly volunteered ourselves.  I’ve stepped up my half marathon training just in case.

The half marathon training is going well and I can run for over 1 ½ hours with only sore knees and one jogger’s nipple to show for it.  My body has definitely changed shape.  The other day, I found myself looking round a show home just out of curiosity.  It had some very luxurious looking, wall to wall mirrors on the landing so, being alone, I did a bit of a girly thing and checked out the results of my training by inspecting my butt muscles.  Expecting a pair of pert, honed, youthful looking specimens, I lifted my skirt and pranced around in small pants.  Sticking it out Beyonce style, I found myself checking for a miracle which hadn’t really happened, despite my rigorous training.  It’s definitely bigger; no wonder I’ve had to ditch some of my pants.  Just as I was finishing my little inspection, I glanced up and noticed the CCTV camera trained on me.  I did a little bow and made a quick escape.

Now to the cancer stuff, I had an embarrassing melt down on the treatment slab on Wednesday.  For some reason, I was feeling really sad about the world and wondering just when life had become so serious.  I think it was before the cancer diagnosis but I can’t put a date on it.  The weight of the world dropped down on me from the ugly radiotherapy room ceiling.  The staff noticed I looked upset and asked if I was alright.  Darn it – why do people ask that question? – it always opens the flood gates!  They were surprised at my tears and thought it must be my first treatment.  They were kind and offered to break for a moment but I asked them to carry on so I could get the hell out of there.  I think it’s probably my crap financial situation, the fact that all my colleagues graduated this week and literally had a ball, worry over my drug treatment and a little sadness over my brother and Ali splitting up.  I don’t like to think of Ali waking up at night with her worries alone.  Night fears are scarier than day fears.

I had another consultation on Friday.  Up to now, I’ve been well informed and encouraged to asked questions in the NHS but suddenly it seems I’m part of some sort of production line on a conveyor belt where I’m supposed to shut up and take my medicine.  Ali said she had felt the same at this stage in her treatment too and felt she couldn’t ask questions.

I’ve already been prescribed the drug Arimidex instead of the more commonly used Tamoxifen.  Apparently Arimidex stops the conversion of sex hormones called androgens into oestrogen by an enzyme called Aromatase but it’s normally given to post-menopausal women. In fact the Arimidex website states you should not take the drug if you are premenopausal,(which I am), and this is worrying me!  Upon further investigation it is contraindicated everywhere and yet I was told it is recommended by NICE (National Institute for Clinical Excellence) guidelines.  I had a look on the NICE website and can only find recommendations for its use in postmenopausal women and I am now highly suspicious.  I will investigate further and report back!

My cancer is oestrogen driven so I’ve also been offered monthly Zoladex injections too which stop the ovaries from producing oestrogen.  The consultant explained there is less risk of serious side effects such as uterine cancer and blood clots with Arimidex but failed to explain any other side effects and didn’t ask if I had any infertility worries.  I think he probably assumed that as I am single and 40, I’m not thinking of having children.  I forgot to ask questions which is why it’s always a good idea to take along a list of questions and a friend or partner to take notes for you.  I’m not sure I wanted to talk with a male doctor about my fertility concerns anyway – how could he possibly understand?

On Friday, I saw a different doctor who said she would probably have prescribed Tamoxifen and the conversation became confused when I asked why because she took it to mean that I wanted Tamoxifen instead and offered to prescribe it.  She seemed to want to avoid the issue and I just wanted to know the difference between the drugs.  Then she told me my ovaries may recover after 2 years of Zoladex injections and added, “But you weren’t thinking of having children, were you?”  My head span, I didn’t know there might be a window of opportunity if I did want to try for a baby but I felt I was being stupid asking about it.  As long as there is a possibility, how do you give up hope?  I started my periods late, therefore the menopause is likely to start later for me.  As my tumour was very small and contained I’ve not had the dreaded chemotherapy which can make you infertile and I am otherwise pretty fit.  When I asked questions about whether having a baby would be safe or possible, I was told it might be best to face that at the end of the 2 years of Zoladex treatment.  I know from my own research that having a baby could be risky but women do, that my ovaries may not recover from the injections and I may go straight into an early menopause as a result but I still have questions.  I feel that the best treatment option has not really been discussed with me; it’s been decided for me.  I need to digest the information and be part of decision-making to feel like I have some control over this bloody disease.

I feel that because I am in the ‘no mans’ land of single, 40 year old woman, I’ve been pushed aside but I’ll ring my breast cancer care nurse on Monday.  She’s great for information, common sense and support.  In the meantime, a friend told me about a 48 year old, single friend of hers in China who is teaching English and thinking of adopting.  She has become attached to a 6 year old girl in an orphanage for children with supposed ‘disabilities’ which appears to be more of an excuse to offload unwanted baby girls, (who are considered to be more undesirable than baby boys).  I like this adoption idea very much.  Maybe I could turn this fertility negative around one day to benefit someone.

Now there’s been a bit of serious talk in here so I’d like to finish on a lighter note.  Last night I had fun shaking my new, bigger bum with the girls and we attracted some young men who must have watched ‘Sex and the City’.  Also, I’m happy to say my mum is still as dippy as ever.  Recently we tried Skype together which lets you talk for free through the computer.  We had been happily chatting away for 10 minutes, enthusing about our new, free, communication system when she asked me if she could hang the phone up yet.  She had been holding the home phone to her head all the time!  Ahhhh, bless her, don’t you just want to cuddle her?!

5th August 2007

I spoke too soon. 3 days worth of eggs (aka radiotherapy treatments) and I had a side effect.  My breast became quite sore.  I mentioned it to the radiographers but they said this was very unusual so soon and I was perhaps feeling a little sensitive or aware of things.  I agreed this was a possibility but the next day it was definitely sore and running was uncomfortable.  The soreness settled down eventually and I’m now 15 eggs down with 18 to go. My skin is becoming a little pink and I have developed joggers nipple, (ouch!) due to the treatment.  I’ve asked for a supply of dressings to help protect the nipple so hopefully it won’t drop off.

I’ve been counting the duration of the zap times and I think I got it wrong – I thought the radiotherapy was given as 4 sets of 30 second zaps but it is nearer 2 sets of 12 second zaps to the left of the breast and 12 to the right of it each day which is very quick.  I came across my treatment consent form the other day and noticed that I had not had to sign a disclaimer for risk of heart damage from radiotherapy.  Call me ‘Lucky Lou’ again – my cancer was in my right breast and the heart lies to the left of the body.  This is worrying though  when most breast cancers are found in the left breast.  Last week I was able to test out a theory that I have been wondering about for some time now.   As I got onto my bike, I swung my rucksack onto my back for the first time in 4 months.  Slipping my mobile phone into the purpose made pocket on the shoulder strap, I realised I had been right – for some 5 hours a week over a period of 3 years, I had been wearing my mobile phone in its pocket over my right breast at the exact location of the tumour.  This becomes even more significant when you consider that most breast cancers are found in the left breast.  My mobile phone pocket has since become redundant!

Ali and mum have been giving me lifts to the hospital recently and so it’s been a lot quicker and a lot more pleasant than catching buses.  It’s been like having my own personal support group too.  Thursday was miserable though – the place was full of very ill looking, older people who all seemed depressed.  On days like that I feel frustrated and can’t wait to escape the hospital.  I almost feel claustrophobic.  I think even Mum would have had difficulty cheering everyone up that day, (usually after my 10 minute appointment, she’d be on first name terms with people in the waiting area which made me smile).  Mum made me laugh when we stopped at traffic lights one day.  Looking across at the motor bike to our left, she asked if Ali and I would be riding motor bikes like that “Kasawary” (Kawasaki).

I think I am developing an aversion to ill people which is bad news when you are 6 months off qualifying as a nurse.  Thursday’s trip to the hospital made Ali feel down too – she told me she had been looking around at the frail patients and guessing which ones had secondary cancers.  Just recently, I’ve found her waiting for me near the hospital exit when I come out of my appointment.  I can’t be easy for her revisiting the radiotherapy department and memories of her own treatment.  She told me how one day she was upset and shocked to be treated by a male member of staff – Ali had a total mastectomy and was unable to have reconstruction for a whole year.  At this point, her confidence and self esteem had reached an all time low.  The staff are great but I honestly hope I never see the place again after this.  Ironically, I had considered working as an oncology nurse one day.  The week finished on a funnier note.  I was lying on the ’slab’ on Friday staring miserably at the ceiling whilst being zapped when a Motown song came on: “Give me just a little more time”.  How inappropriate is that for cancer patients?!  Ali and I had a good laugh on the way home putting together ‘an appropriate song collection CD for cancer patients’.

I had my radiotherapy review where we discussed my dreaded drug therapy to induce an early menopause.  It begins at the end of radiotherapy.  I have successfully been pushing this to the back of my mind so far.  The doctor examined me and searched in vain for other scars than the single neat scar line under my arm.  I patiently explained 3 times that I only had one scar after two operations before he believed it.  When I asked for some dressings for my little nipple problem explaining about the half marathon in September, he said “You’re a tough one training for a half marathon whilst having radiotherapy!”.  This worried me a little and I replied, “Hopefully!  But we’ll see, I’ve not done it yet!”.  So far I can run for 1 ½ hours.  I feel tired and ache but I can manage it so I’m feeling optimistic.  I am conscious though that I’m not quite half way through treatment.

It seems a long time since my plan to “play it down” on my date 2 weeks ago with the guy I had just met.  It was great, except that I spent the whole evening trying to avoid tripping myself up whenever he questionned me about myself.  Up to that point, it hadn’t even occurred to him that the healthy looking, youngish person in front of him was having radiotherapy for breast cancer.  This made conversation very tricky.  Whenever there was a natural pause in conversation, instead of me asking him a question like normal people might do, a little voice popped into my head and shouted, “TELL HIM ABOUT THE BREAST CANCER NOW!! – you know you have to at some point Lou!”.  I reasoned with the voice all night which meant that after each natural break in the conversation, he had to restart it because I was too busy having an inner dialogue with myself.  There were plenty of missed opportunities where I could have told him but I told myself he might not want to see me again anyway so there would perhaps be no need to tell him! 

Eventually, we established we would like to see each other again and I decided I should come clean.  Of course, this was right at the end of the evening.  It hadn’t occurred to me that I might meet someone whilst having my treatment and I suddenly felt really nervous and full of dread so all I managed to say was, “I have something to tell you,”.  What a way to start! It made him grin from ear to ear!  I tried to play it down according to plan but discovered this is quite hard to do when you have to use the word ‘cancer’ in a sentence about yourself with someone you don’t really know.  On a date you are generally trying to impress a person, not depress them! 

‘Cancer’ is an emotive word and there’s still a stigma attached to it – a lot of people seem to assume it’s really bad news, that you must be feeling really ill and will probably die in the near future. Occasionally though, someone will ask the question, “Is it serious?”  At this point, I can answer, “No, it’s not,”. 

I tried to tell him it wasn’t serious, how lucky I’d been and that I actually think it has changed my life for the better.  However, instead of the explanation being short, sweet and quickly forgotten, I think I rambled on a bit and probably managed to play it up rather than down!  My voice came out in an odd, choked, hoarse sound which I’ve not heard before.  It sounded a bit like Stan Laurel.  We stroked each others heads for a while – me because I felt just awful that I had surely ruined his evening by being such a let down and him, because he probably didn’t know what else to do or perhaps he was just trying to digest the news!  I remember seeing the grin drop off his face with a frightening speed after my little announcement.  I tried hard to read his thoughts but failed and that was the end of our evening! 

The following morning I sent him a text telling him I would understand if he felt out of his depth.  Fortunately, his job involves white water so he’s a strong swimmer.  Perhaps depth doesn’t worry him because it hasn’t deterred him yet.  Give it a couple more weeks!

I have reassured myself that any future relationships will be much easier – I won’t be in the middle of my treatment, my scar will have faded and my boob won’t be blue anymore from some blue dye that was injected into it 3 months ago!  I won’t be challenged by organising a motor bike trip around Europe to raise £40K for a breast cancer charity and hopefully, I won’t have to mention the word cancer for a while and when I do, I won’t sound like Stan Laurel.

Ps.  We are currently having trouble finding 125 motor bikes to practice on and we need practice (Ali came off the bike on a roundabout and I ran over the instructor), so if any kind person reading this thinks they can help us, it would be much appreciated.  We are far too skint to buy one so a loan would be fantastic!