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?!