27th June 2007

I went to the radiotherapy department for a CT scan on Friday.  I will try to explain what this is but it was explained to me whilst I was lying flat on a table and I realised how difficult it is taking in information when you are looking up someone’s nose.  Here goes: -  a CT scan is a special type of x-ray where you lie on a table, with your relevant body part exposed, and pass backwards and forwards through a hoop-shaped machine.  You have to lie really still.  The machine takes pictures from different angles and puts together an image made up of slices or cross sections through the part of the body being scanned.  I think of it like sliced beetroot but don’t worry – it’s completely harmless.  It gives a very accurate picture of the position of everything in your body so that radiotherapy rays can be directed to avoid major organs as far as possible. 

The scan is then fed into a radiotherapy planning computer so that treatment can be planned.  Once this had been done for me, 2 small dots were tattoed onto my skin with a needle so that each time I go for radiotherapy these ‘pin-point’ tattoos can be used for reference.  Unfortunately, there was no choice of colour for this so I am stuck with 2 blue-black dots, one between my cleavage and the other under my arm roughly in line with my nipple.  The dots are permanent although Ali says hers have faded in time.  I thought briefly about incorporating them into a real tattoo afterwards but for the moment, any low cut tops reveal a nice blue-black dot in the middle of my chest that looks like either a big blackhead or a pen mark depending on the light.  I tried to cover it with foundation on Friday night but gave up after 2 coats.  It’s not too bad. 

On 16th July I will begin the radiotherapy treatments, they only last a few minutes or so but I will have them every week day for 5 weeks to target any cancer cells remaining in the whole breast.  For a further 1 and half weeks after this I will receive radiotherapy directed specifically at the tumour bed.  So what side effects can I expect?  Apparently, during treatment there may be some redness and soreness of the skin, (a bit like sunburn), swelling and discomfort in the breast as well as general tiredness.  The tiredness, it seems, is due to the damage that occurs to normal cells and their attempts to repair themselves.  Happily, cancer cells are less able to repair themselves than healthy cells. 

Long term effects of radiotherapy include possible darkening of the skin, hardness of the breast tissue, shrinking of the breast, (keeping my fingers crossed on that one), and red marks caused by tiny broken blood vessels.  Sometimes there are problems with fluid drainage too and a fluid build up occurs.  Rarer side effects include heart damage and breathlessness due to lung damage but these are less common now because treatment is more precise.   I’m ignoring the scarier side effects you can read about for now but will let you know if anything strange occurs.

I think the tiredness is due in part to having to travel to the City Hospital everyday and the eternal waiting room of the NHS.  However, I’m optimistic that the tiredness won’t be too bad based on my recovery after 2 operations.  So far, I have been able to keep up my training for the half marathon in September although it has not always been easy.  I have felt like I am running through mud on occasions and a couple of times after short runs, I came through my front door and lay down on the floor with a beetroot coloured face, heaving and feeling properly sick.  This didn’t discourage me, it just made me feel tougher.  On the whole I’m really happy that I have been able to build up my fitness and have only had to take short breaks from exercise following the ops.  I’m sure my recovery would have taken longer if I had followed the advice of the physio and abstained from all exercise for 8 weeks because I would have been miserable without my running and the touch rugby.  The physios should definitely tailor their advice according to the age, needs and level of fitness of cancer patients. 

Saturday was a great night.  I forgot all about cancer as I continued my education of real ale which is supposed to be very good for you.  Real ale can help prevent heart disease, lower bad cholesterol, contains antioxidants and also B vitamins which help maintain the immune and nervous systems.  It also contains polyphenols which have been shown to inhibit the test-tube growth of cancer cells as well as flavinoids that have also been shown to inhibit the growth of prostate, breast and colon cancers.  Real ale contains no fat or cholesterol, (someone should be paying me for this!).  Obviously, it should be drunk in moderation, (where possible!) particularly as alcohol is thought to be a risk factor in breast cancer.  Personally I believe, (despite being an atheist), that as monks and nuns were often the proprietors of vineyards and providers of real ale in history, it’s got to be good for you. 

So, I began Saturday night with a half pint of Titanic which was very dark but easy to drink.  I then moved on to London Pride and IPA slipping in a half pint of Carling too.  I think I’m beginning to develop a taste for real ale finally but it’s not been easy.  They are all so different and remembering the good ones is difficult.  And even when you remember them, like ‘Duck and Dive’, you can’t remember which establishment sells them.  Later, it turned into a bit of a sports themed night as my friend was stood on by Notts Cricket Club’s Captain and no wonder – his feet are enormous.  Then she was chatted up by one of his team mates who had unnaturally white ‘teef’.  After a few more half pints and a good evening, I was about to catch a taxi home when the guy I had been speaking to offered me a lift home on his push bike.  Why not? I thought.  Spontaneity is the spice of life!

As I was wearing a dress with not much give and I am short, I thought it unwise to straddle the bike so I rode side saddle instead, (like a lady).  I climbed on in front of my chauffeur and grasped the handle bars.  He leant forward around me, reached for the bike handles and then we set off along the road.  I thought we might fall off at first or the bike wheels might pop but it went really smoothly and fortunately, as it was about 1.30am there were very few cars around.  The tune, ‘Raindrops keep falling on my head’ popped into my mind from that scene in Butch Cassidy and the Sundance Kid.  Mmmm, I enjoyed having some arms around me and the fact that my chauffeur was forced to speak into my ear!  Girls – if you ever get offered a ride home on a push bike by a handsome man with strong looking arms, (especially if he’s a professional canoeist)… accept straightaway!  

Weirdly, none of the drunken people on their way home batted an eyelid at our Butch Cassidy impression.  It was great fun especially when we mounted the pavement and tried to navigate a pedestrian and a traffic island.  Soon we were flying over Trent Bridge and down the tree lined Embankment in the dark and I managed a centre of gravity shift without knocking us over, (warning – riding side saddle would be uncomfortable for long distances).  No one was injured except for a slightly sore butt and chaffing to a calf from the front wheel.  When I asked my chauffeur how much, he replied, £1.50, so I tried to book him for every Saturday.  A far better service than the surly taxi drivers who try to rip you off. 

Mum – it wasn’t a date, ok?!

21st June 2007

I was on my way up Derby Road on Saturday when I saw a body lying in the road and thought, “Oh Shit” followed by “Here we go again.”.  I went over and offered my help as a student nurse but fortunately a retired doctor with ‘I’m a doctor, don’t you know!’ syndrome was already on the scene.  Apparently the guy in the road had tried to commit suicide but luckily he had missed the oncoming car.  I peered into his blue eyes, fixed on the sky above, and saw his pupils were tiny pin pricks.  The doctor’s attitude, (not his communication skills), told me I was fine to leave and an ambulance arrived. 

I seem to have a knack for finding trouble.  This has involved me looking after a man having a heart attack in a street in West Bridgford, (not an easy task when the patient is trying to walk away from you whilst repeating, “I want to die, just let me die”.  I have also tended to a man with a huge egg sized bump on his forehead under Trent Bridge who had been severely beaten up and was in shock as well as a couple of people having epileptic fits, (on separate occasions), a man who had fallen over and cut his head and a seemingly immobile body under Trent Bridge which turned out to be sleeping off some alcohol.  There was also the occasion when I leapt out of a car on Trent Bridge to try and save a dog which was running around in panic and rush hour traffic.
 
I have witnessed a fair amount of crime too, (especially flashers).  I once spotted a burglar from my seat on an empty bus at 5am in Camden Town.  I was on my way to work, (as a post lady), when I saw him climbing out of a kitchen window as my bus stopped at traffic lights just opposite him.   He froze in mid escape, one leg still in the house and one out, and saw me watching whilst making phone dialling gestures at him.  Unsure of what to do, he tried first to go back into the house before launching himself out of the window and dropping down a flight of stairs to the basement.  There was also the time I surprised hoodies trying to break into the Environmental Agency.  That was quite scary because they all raised their hoods and began following me on the opposite side of the canal.  Fortunately, the exit was blocked their side and they turned back.

I have lost count of the number of flashers I have seen in my life but I will never forget the regular who used to hide in bushes along the River Trent and flash at people walking along the river on the opposite side.  I was so furious at him one day for ruining my run yet again that I yelled  “Police!” loudly at him across the water.  He panicked and in his hurry to escape he span round, forgetting his trousers were still round his knees, and fell over.  Meanwhile, I was laughing loudly on the other side of the river.  Unfortunately, I was just a little too far away to be able to identify him properly so for a long time I used to take my mobile running with me.  The police asked me to call them whenever he was there so I would put in a call and wait out in bushes until they arrived and then direct them to the spot from the other side of the river.  We nearly caught him a couple of times and then I think he was identified by some kids.  I haven’t seen him this year yet so I’m hoping he won’t be there for a 3rd year running.

The funny thing was that as I was telling Ali about the man in the road, just minutes later, she happened across a car crash, (not a serious one thankfully).  She laughed at my knack for finding trouble and said it happens to her too.  Her theory is that people who happen across accidents and trouble do so for a reason because they are in fact angels who might be able to help.  “You remember the body pulled from the Trent the other day whilst I was on the way to your house?”, she asked me,  “Yeeeeess?”, I said.  ” Well, I arrived a bit late on that one.”  Later that day I met other angels.  My friend Linda was once in an aerobics class when a man burst through the doors covered in blood.  She leapt across in her lycra leggings to stem the bleeding.  It turns out the man had been stabbed but he survived thanks to Linda.  Although it’s a nice idea, please don’t take the angel theory seriously.  Ali’s no angel and neither is Linda especially on a Friday and Saturday night.  And I think they would say the same about me.

On a more serious note, Ali and I swapped roles and I accompanied her for a breast appointment today.  She has been having some pain for a week in her abdomen and decided to get it checked out.  I could tell she was pretty worried about it – when cancer has been found in your lymph nodes how do you not freak out when chronic pain develops elsewhere in your body?  I was worried too.  Thankfully, the consultant seemed to think it was hormonal so we felt relieved.  They’ll do some more tests just to check.  It’s probably because she stopped having Zoladex injections in February.  Zoladex is used alongside Tamoxifen to lower oestrogen levels and in effect it brings on the menopause.  Periods stop but can restart again when Zoladex therapy finishes.  Hopefully, the pain Ali has been having is related to her periods returning.

Whilst I was in the waiting room I got talking to another woman and her husband who were in their fifties and complaining about the wait.  The woman told me that she had had a mastectomy 4 years ago and reconstruction using back muscle like me.  Curious, I asked her if she had had any problems with it.  She said she had had some stiffness and the muscle had hardened too.  “Ooooh, and what about ‘flick a tit’?!” asked her husband.  “Oh yes!,” she laughed, “I can twitch my breast and it happens when I’m cycling which is particularly annoying”, (I’ll be looking out for that next time I get on my bike).  Then she began flexing her left breast at me energetically to demonstrate her skill.  My eyes widened, it was very impressive.  “Ooooh me too,” I said excitedly, “I can do that!” and I found myself edging forward on my chair to show her.  Then I realised how weird the situation was – 2 grown women flexing their recon. breasts at each other in a ‘flick a tit’ competition across a waiting room watched by some random husband??  Whoa!  – and I managed to stop myself in time.  On the way home Ali and I picked up some petrol and whilst I was waiting for her to pay I saw a big advertising sign which asked, “Do you have man boobs?”  I had to laugh – “Just the one,” I said to it out of the window.

I saw ‘Hey Gorgeous’ last night and came clean right at the beginning of the evening about having ‘blogged’ him because I felt so bad.  He took the news very well.   “My mum’s called ‘Hey gorgeous’ too,” he laughed.  I’m lucky he has a sense of humour!

15th June 2007

He he.  Bet you thought we were driving Ferraris for a moment.  Not yet.  It’s just that we witnessed an embarrassing experience for a Ferrari driver recently.  We were stood outside Fire and Ice last Friday having a drink when a red Ferrari, (top down), drew up opposite and caught people’s attention.  The owner decided to reverse a little in order to park although I’m not sure why because he seemed to have 3 clear car lengths in front of him.  Unfortunately, he reversed straight back into a little white van which jolted backwards on impact.  The terrace of Fire and Ice erupted with cheering and applause as we dared each other to go up and claim ownership of the little white van.  Ferrari man escaped our scrutiny and noise by quickly pressing the automatic release button for his soft top which then obscured him from view.  We stood like meer cats, heads popping up and down from time to time, waiting to see him step out of the car.  Some time later he finally emerged, (to inspect the damage to his bumper only it seemed), and was greeted by another round of loud applause and cheering.  We were impressed for a brief moment when he left a note on the windscreen of the white van before agreeing that it probably said, “Congratulations, you’ve just been rammed by my Ferrari.”.  He then got back into his car and drove off – well there was no way he could cross the road and face his audience after that.  I’m guessing he wasn’t too upset though – he was the one driving a red Ferrari after all.

Whilst discussing our boob jobs this week, Ali and I realised we are both topsy turvy.  She had stomach muscle removed to reconstruct her own breast after her mastectomy whilst I had back muscle removed to reconstruct my breast after my lumpectomy.  This means she is now upside down on the left side whilst I am back to front on the right side.  Ali says she avoids doing stomach crunches in case it increases the size of her left breast so I’ve stopped flexing my breast in case I overdevelop it too.  We both find that occasionally we get a deep itch but it is impossible to find where the itch is or relieve it.  It’s a very strange feeling.  I found out today that occasionally buttock muscle is used to reconstruct breasts after surgery for breast cancer.  That’s amazing – it must be for very large breasts perhaps?!  The expression ‘pain in the ass’ could take on a whole new meaning. 

I am still having fluid removed from my back which is becoming a real drag and I don’t see why it can’t be done closer to home by a nurse at my GP practice for example.  It only takes a couple of minutes but a whole lot of travelling each time.  I get confused as to where I am supposed to go for this procedure at the City because when I left the hospital they gave me a number for the breast clinic and the ward but several times I have been passed from the clinic back to the ward and vice versa.  I asked a nurse specialist who it was best to phone.  “Me of course”, she replied as if she thought it was perfectly obvious.  I didn’t bother explaining.  She also told me I shouldn’t be playing touch rugby either.

I spoke to Helen, (the lady having a similar cancer experience to my mine).  She said that if she was in my position, she would have made the same decision as me and said no to chemo.  It seems I have been lucky again because her tumour was situated close to a blood vessel which meant a greater risk of cancer cells passing into the blood stream.  The benefit of her having chemo was stated as about 7% compared to my 3%.  We realised how unique each case of breast cancer is.  Helen and I saw the same female oncologist and chemo was recommended in Helen’s case.  Like me, Helen still has doubts as to whether she is doing the right thing.  It is not really known if she will benefit from it and she would prefer not to have chemo.  I am interested to know whether Helen loses her hair or not because she is following the Jane Plant diet like me.  I’m hoping that she will keep her hair for her own sake but also because we will have our own proof that the diet is beneficial in some way.   One thing is certain – the diet is very good for losing weight – I was told to “eat more pies” by a guy at touch rugby this week. 

Helen and I searched for possible contributing factors to our cancers and identified a strong factor in common as ‘dairy overdose’.  During her pregnancy Helen ate lots of ice cream and milk chocolate, whilst my recent vice had been giant bars of milk chocolate, (finished within 10 minutes which brings the bridge of my nose out in a cold sweat).  Neither of us ate much dairy before this.  I suggested, (tongue in cheek), a research paper on the link between chocolate consumption and breast cancer in younger women.  Helen agreed that it would be interesting as the image projected of todays single women seems to be about careers, shopping, sex and chocolate.  Hmmm, something’s wrong here – I can only relate to the last item.

Since my diagnosis I have had many people contacting me that I had lost touch with including ex boyfriends who say very nice things about me, so perhaps I’m not so disastrous at relationships after all.  ‘Hey gorgeous’, (see the fireman blog, no. 16), has been very supportive and wants us to go out for a meal next week.  He must be feeling guilty.  I’m going to have to confess to him that he’s been ‘blogged’ because I’ve been feeling a little uncomfortable each time I bump into him.  I’ll feel especially awkward if he offers to pay for my meal too.  I hope he has a sense of humour.  I must stress, (mum), that this is not a date.  I have enough on my plate.  I had a bad week this week.  I lost my focus for a while and spent a lot of time wishing that if someone had told me at the beginning how my life would pan out that I could have said, “No thanks, I’d like to hand that one back and choose another”.  I know there are far worse lives but it was one of those weeks where I just couldn’t think positively.  I’ve been having some amazingly detailed dreams about avalanches where I survive but have to save mangled bodies and I’ve been waking up and wishing there was someone next to me to hug. 

This week ended with my total melt down over phone calls to the School of Nursing.  Now, for almost 3 years they have been drumming into us that nurses have a duty of care.  I have had no contact with them until today when I rang to tell them that they had forgotten to ask Student Grants to suspend my NHS bursary.  This has cocked up my benefits claims and I now owe Student Grants some money and need to sort this out with the benefits office.  I was pretty fed up when I rang.  In order to respect confidentiality, I will refer to the people I spoke to as numbers.  This is what happened:  I rang person 1 who told me to ring person 2 or 3.  I rang person 2 who was not there so I then rang person 3, (and another person in the same office), who told me I needed to ring person 4.  This was my first contact with person 3, (my personal tutor) since a short email just after my diagnosis.  The number given to me by person 3 was wrong so I had to ring back person 1 and get the right number.  Person 4 was on holiday and by now I was seriously frustrated after explaining to 5 people what I was ringing about.  I was told to ring back on Monday.  A fuse blew in my head.  I persisted and asked if I could speak to someone else.  I could and was put through to someone who told me I needed to speak to person 1 and 2 or 3 again because she was definitely the wrong person to speak to.  I am ashamed to say the frustration I felt had reduced me to tears by now and I blubbed out my lack of success with persons 1,2 or 3, and disbelief that no one knew who was supposed to deal with a situation that was surely not an uncommon one.  I felt so guilty because person 5 was very kind and said she would ring the people concerned and sort it for me.   She rang back to tell me person 2 was away and would contact me on Monday.  How embarrassing, I totally lost control of my tear ducts.  I’ve forgotten this week because I’m thinking about a big bar of chocolate right now.

8th June 2007

I’m a woman so I’m having second thoughts…  Content with my decision not to have chemotherapy, I logged into another blog site to catch up with a fellow breast cancer lady who first contacted me via myspace back in April.  I had been meaning to talk to her because her situation is very similar to my own and she thinks like me too.  I trust her judgement.  I wanted to know her thoughts on chemotherapy.  I discovered she had decided to have chemotherapy in case of rogue cells around her body and is currently receiving chemo, (and feeling very sick after it).  That started it – doubt crept back in and I wondered if I had made the right decision.  Every day I ride the same train of thought: – Should I not be taking everything that is offered to me?  Oh blimey.  I don’t know…  A lot of chemotherapy is given without effect and it’s bad for your body.  There’s only a small risk that there are any cancer critters elsewhere in my body anyway.  You’ll have to push qualifying as a nurse back even further back if you have chemo and it may interfere with the half marathon.  Yes, but this is life or death and what if?… -  I go round in circles before deciding to sleep on it.  I catch the same train again the next day.  I wish I could phone a friend, do 50:50 and ask the audience.  I phone the breast cancer care specialist nurse instead but she’s not there so I Ieave a garbled message.

Mum left yesterday and we had an emotional farewell in the Ryanair queue.  It was all going well until we began our hug goodbye and she started saying things like “so proud” and “love you” into my ear whereupon we both began blubbing publicly.  This made us laugh but then she started again with the “be strong” and “love you” bits and we started crying again.  I said a hasty goodbye, crawled out clumsily from under the guide ropes of the queue, and made my way out of the airport departure lounge at speed, head down.  Back in the car my brother Tom said to me, “Oh blimey you’ve not been crying have you?!”  “She started it!”, I replied. Never ever say your goodbyes in a departure lounge.  The last time I did this was at Heathrow airport where I was saying goodbye to an ex who was going home for good to his native New Zealand.  I should have learnt from that experience because when you are feeling emotional in an airport, you are going to blub in public without question.  Lesson learnt – no more airport goodbyes!! 

The breast cancer specialist nurse just rang me back, (within 15 minutes of me leaving a message). She told me that she is there to support me anytime during or after my treatment.  I will have moments of doubt in the future too but I will get over these, she said.  I can’t fault her advice, it was excellent and I feel back on track, (but off the train tracks).  She helped me realise that throughout life, when I have trusted my gut instinct, I’ve felt happy with my decisions.  So, I’m not going to poison my body with chemotherapy unless it’s absolutely necessary.  I need to remember that none of us knows what the future holds and stop worrying about it.  The nurse said, if I would definitely benefit from the chemotherapy, the professionals would be telling me this.  My decision is supported.  She also said many people with cancer feel that their body has let them down in some way.  That’s interesting because she is right – I do feel cross that after all my running and all the fruit and vegetables I chew I still have cancer.  I don’t feel my body has let me down though.  I feel I have let my body down because I have spent too much time worrying about little things instead of forgetting the past and moving on.   I asked her what she would decide in my position and she said she couldn’t honestly say until she was actually in that situation.  “Good answer,” I said and asked her dryly if she had been told to say this.  She laughed.  It’s good to finish a serious conversation with a laugh.

On Thursday I rang Shires Motorcycle School to speak to the owner Paul Nunn in the hope to get us some free training.  I was interrogated suspiciously by the lady who answered the phone.  I warbled on about our project and offered to send an email detailing it.  Unbeknown to me, Paul had told Amy, (the lady on the phone), to say ‘no’ to cold callers just the day before I rang following a recent bad experience with some pushy sponsorship hunters.  Amazingly, within an hour of sending my email, Paul rang me.  He was interested to know more and told me that he thought a motor bike trip around Europe was ambitious, but knowing that we don’t have our licences yet and are still planning the trip, he thought we were ‘certifiable’.  I thanked him for being direct and before I knew it there we were, Ali and me, sat astride Honda 500’s talking to an instructor called Colin whilst waiting for Paul to arrive.  I put my hands on the grips and beamed, Colin laughed at me: “I think you’re liking that too much!,” he said.  Bugger me! – I’m a biker chick after all. 

Paul arrived and had brought a couple of Honda 125’s with him for us to try for height.  We’ll be doing our basic training on these.  For once my legs are long enough and Ali’s are just about there – she just needs a pair of (free) motor bike boots.  Hold on… my legs are LONGER than Ali’s – that’s the first time in my life I have used the word ‘longer’ to describe my legs, (I am 5ft 2).  I’m beaming again.  We drove home after our meeting with me perfecting ‘brooom’ noises excitedly until Ali pointed out it was ‘vrooom’.  It feels like we are on our way to Europe.  I think Paul is secretly seeing this as some wacky challenge/experiment of his own because he doesn’t seem interested in the publicity we are offering him.  It’s probably because he thinks we are mad and is interested to see if we can pull it off.  Thank you anyway Paul, you’re a good man. 

Trust me – I have a gut instinct about this one – it’s ambitious but it’s going to work!

5^th June 2007

I made an important decision today after spending 3 hours at the City Hospital for appointments with an oncologist and a radiotherapist.  As instructed, I presented myself at reception and told them I had an oncology appointment first, (because I needed first to decide whether to have chemotherapy).  Unfortunately, unbeknown to me, I was actually scheduled to meet a radiotherapist first and so I became lost in the appointments pile.  Whilst waiting, I was offered a sweet by a kindly volunteer worker.  I should have taken one because by the time my name was called out an hour later I wasn’t feeling very sweet.  Once again I feel out of place in a room full of people older than myself.  My irritation rises as I wait because I think, damn it, I have tried to live my life healthily and now I seem to spend my time in waiting rooms because I have what is more commonly an older woman’s disease!  I don’t even feel ill!  I imagine myself standing up and announcing loudly, ‘I’m leaving, thank you!  I have better things to do with my time!”, before striding out of the room.  I wrote my blog instead. 

There is a pattern emerging.  The last time I had an appointment at the City Hospital my notes had been lost, this time one of my appointments had been lost.  I had not been discussed in the morning patient case conference by staff because somehow, after my private lumpectomy, (which we hoped would speed up treatment), and my NHS reconstruction operation, I had become lost in the system and was now invisible.  I also discovered that 7 weeks after my first operation, we are still awaiting a test result from the private hospital.  I am told this result normally takes 3 weeks and I now have to phone to find out where my result is.  And… I have been double billed by the private hospital!  My advice is: if you try to think outside the box, expect trouble.  Ok, moan over!

 After seeing a doctor to discuss chemotherapy in brief, I waited another 20 minutes in a little side room for the oncologist to arrive.  The door was open and I watched a whole family arrive in the consulting room next door to mine with their afflicted family member like a coach party.  I watched them politely hesitating in Brit style in front of the weighing scales outside our rooms, wondering if they could sneek a peek at their weight.  They disappeared into the room but eventually curiosity won, and one by one they crept furtively back out of the consulting room to weigh themselves, calling back their weights to the rest of the family through the door.  They didn’t see me because I am invisible.  This entertained me for a little while and finally just as I was about to nip out and weigh myself, someone remembered I was still there in my little room, apologised and went off to locate the oncologist again. 

The decision over whether to accept chemotherapy has been hanging over me for some time. The oncologist was very helpful and informative but ultimately the decision was mine.  I belong to a group of patients who ‘might benefit from chemotherapy’ and my chance of surviving the next 10 years would be increased by just 2 or 3% with chemotherapy.  Chemotherapy works by ‘mopping up’ other cancer cells that may be lurking elsewhere around the body.  However it can cause side effects such as seriously compromising your immune system and there exists one school of thought that chemotherapy can actually be more harmful than beneficial.  Whilst your risk of dying of cancer may decrease, your risk of dying from a serious side effect of the treatment increases.  There is a small but serious risk of cardiomyopathy – that’s heart muscle damage – and also a risk of developing leukaemia.  Luckily, my cancer responds well to hormone therapy, the tumour was only 13mm and the risk of cancer being elsewhere in my body is small.  However, chemotherapy was offered to me because of my age and the fact that my cancer was a grade 3 type which means it was an aggressive son of a bitch. 

After our discussion, the oncologist concluded, “I would not highly recommend chemotherapy.”.  So, I decided to take my chances and forego the chemotherapy.  I’m keeping my hair.  I have no idea whether I have made the right choice only that I feel like it is the right choice.  I’ll just have to remember that should the cancer reappear one day elsewhere in my body that I felt I had made the right decision at the time, based on all the information I had gathered and been given.   In 4 to 5 years time, it appears that with important developments in genomics, scientists will be able to test and study genes and group cancer types in order to predict how a type may develop and react to chemotherapy.  This will help them determine more accurately whether chemotherapy would be beneficial or not in each case and hopefully, for people like me, decision making will be made easier.  At present the cost of a test is around £5,000.

Fortunately, I didn’t have to wait long before seeing a radiotherapist as the waiting room was pretty empty by now.  The radiotherapy will target any cancer cells remaining in my breast.  I decided to speed things along and said I did not want chemotherapy and would like to be put immediately on the waiting list for radiotherapy.  I didn’t need another week to make my decision.  It will take 3 weeks before I am seen, scanned and tattooed with carefully measured dots in preparation and 5-6 weeks in total before I actually begin a 6 and ½  weeks course of radiotherapy treatment.  Because of my young (!) age and the fact that I didn’t have a mastectomy, I have been offered an extra ‘boost’ of 1 and ½ weeks on top of the standard 5 weeks treatment in order to target the tumour bed.  Central TV will be able to film some of my treatment which is good.  I eventually escaped back out into the sun and was extremely thankful that I hadn’t brought anyone with me because making someone wait 3 hours would have made me feel just terrible.  I was just about to get on the bus, coins in hand, when I decided to switch my phone back on and discovered 3 text messages from my sister-in-law who was still patiently waiting in the car park after dropping me off.  So sorry Rachel!

We drove home to visit my poor mum who was struck down with a nasty case of exploding bowels following a suspect Sainsbury’s tuna sandwich.  You may be wondering why my mum was still here – she should have gone home last Thursday!   Well, we were all gathered for a farewell family meal last Wednesday before mum caught the plane home the following day, when we decided to check the flight details again.  The time was ok, but the date was very wrong.  We were a week early and she goes home this Thursday instead!  How useless are we?!  We could apply for jobs at a hospital I know!  Mum’s been up to her old tricks – I caught her wiping her stamp against a black speaker at the post office thinking it was a damp sponge for moistening stamps.  The post office lady watched this for a while before reassuring her that it wasn’t the first time this had happened.

I finally played touch rugby, (badly), this week, panting like an old dog whilst women, even smaller than me, flew round me.  It was probably not a good idea to play 2 matches after 2 days of helping my brother to decorate because I felt sore.  Any health professional would be tutting loudly at this point because I was told not to do anything strenuous for 8 weeks, (like riding a motor bike, running or decorating).  But I don’t understand how this physiotherapy advice fits all when healing is influenced by many factors such as age, diet and fitness.  I feel there is a lack of proper fitness advice for younger women who have had surgery for breast cancer.  So, I have been very naughty and modified the advice slightly to suit.  I do try to be sensible – I am right handed which is unfortunately the side of my operations so I try to decorate with my left arm only.  I think my brother will sack me when he realises this. 

How’s my breast doing?   Well, it is shrinking a little as the swelling disappears and I have developed a new trick – I can now flex my right breast!  The back muscle, (which fills the hole in my breast left by the tumour removal), is still attached to my back so when flexed, it is able to pump and draw back the right breast slightly giving a one sided curtain opening effect.  This amuses me so I have been doing it quite a lot.  I am a rarity with my muscular right breast!  I’ll be lifting weights with it soon and joining the circus.  I am still having fluid removed from my back which is a drag because apparently only the hospital has the expertise to stick a needle in and syringe this off.  The fluid bounces up and down painfully when I run so I tend to have it removed every 5 to 6 days.  I am feeling very lucky however that I’m not having any chemotherapy and that I only have one scar to show for my 2 operations.  Often when I am examined by a new health professional, they will search in vain for other scars and I have to explain a couple of times that all the work has been done through the same incision.  I am very proud of the result. 

My morale swings up and down as I am about to enter a land of welfare benefits and fit hospital appointments around part time work but most days I am busy drumming up sponsorship and trying to scrounge free stuff off people for the motorbike trip round Europe next year.  We had an interesting meeting yesterday as a result and Ali and I are now booked in for the first part of our motor bike training.  On July 2^nd we hope to pass our CBT, (Compulsory Basic Training)!  We are very excited!!  Watch out Europe!