8 month hair journey

Countdown is on

I feel like I'm now on a countdown to radiotherapy.  A week on Monday I start, just the thought of it is a mental torture.  I know, physically, it's not going to be anywhere near as bad as chemo, or psychologically as bad as surgery but the daily 'treatment' is going to torture my spirit.  However, I feel strong and ready for it.

Today I ran over 2 miles.....it wasn't long ago that just walking 2 miles was my goal!  To my Mother who will say I'm overdoing it (and is usually right)..... today this is my moto I'm afraid.....

Running is my way to defeat tiredness, it may seem counter intuitive, but believe me, it works.

Adrian and I had a wonderful time in London thanks to the amazing charity, Ellie's Friends.  We stayed in a lovely hotel and went to see QI being filmed which was interesting and Stephen Fry was charming and funny.  We had posh afternoon tea at the Hilton, mooched around covent garden, walked across many parks, cycled around half of Hyde Park and were dumbstruck that a TV could cost £35000 in Harrods!

I had a phone call today...........a neurology appointment.....at last!  It's only taken five months!  Friday the 13th June ......luckily I'm not superstitious!

The beginning of the End

Well, I didn't think I'd be getting my first tattoos at 36!

I had my RT planning CT today.  I had to lie on a cold hard table naked down to my waist, my head in a cradle like support and my arms up above my head in stirrups!  Not very comfortable or, indeed, dignified!  The scan only took about ten minutes though so my arms weren't too dead by the end.  They drew over me and took various measurements then permanently tattooed little dots, one in the centre of my chest and one on each side.  All this is so that each time I go for RT I am in the exact same position.  Just a tiny, teeny tattoo actually hurt quite a lot, I don't know how people tolerate a full tattoo, although I am a little needle phobic now after the last six months!!

I'm feeling good, went for my fourth run this morning in the gorgeous sunshine.  I have moments of almost feeling fully back to myself, which is amazing.  I feel a little sad to have to start another gruelling treatment regime but it is the start of the end and soon it will just be about getting better and stronger every day, with no going back.

Adrian and I are looking forward to our couple of days in London and then next weekend we are off to cornwall camping for half term week with the girls.  Lots of fun and hopefully sun before I have to face RT.

:-)

Run, run, run

I went for my third run tonight, I actually ran (well actually slowly jogged) 1.5 miles without stopping.  I feel very proud and motivated to continue.  I never, ever thought I would enjoy running, I started two years ago and I hope I will continue as long as I can.  There is something about running outside in the sun, or the rain, it's just good for the soul.

Adrian said it was time for an updated photo of my hair, it's now growing into a slightly off to one side Mohawk, still can't bring myself to trim the fluffy long bits!  Unfortunately pretty soon it's going to be long enough to look like I might have actually chosen to have it cut this way!  At the moment it's still pretty obvious I've been ill.  My right eyelashes are miles ahead of my right so that looks a bit weird too and my eyebrow magic wax stuff is now the wrong colour and doesn't match my new hair! Eyebrows are still very thin and patchy.

For the last few weeks I've had a super fuzzy face...I guess hair going into overdrive!  Luckily it seems to be normalising again!

Finally, a neurology referral

So, some progress has made on they eye front.  After seeing my surgical team leader person on Thursday I was able to get to the bottom of what's been happening about the lesion behind my eye.  My latest MRI scan was discussed at the orbital MDT who agreed with the radiology report that a neurology referral was the way forward.   I seem to remember that was what was suggested in January.......frustrating!  I wait with baited breath to see if an appointment letter graces my letter box this week!

I have my planning CT scan on Friday for Radiotherapy.  I am stupidly happy about the fact this is only an anatomical CT and so does not require my poorly veins to be involved....my right arm is only just recovering from the latest MRI, it got really sore again like during chemo.  Unfortunately everything has to be done on the right arm due to the lymph surgery on the left.

Adrian and I are off to London next Sunday for two nights.......WITHOUT the children!  What a treat!  This is thanks to a charity, the Eleanor Rose Foundation who get free tickets for various things to give away to people living with cancer or going through treatment.  We have tickets to see a filming of QI on Monday, very exciting.  I must also thank, in anticipation, Adrian's parents who have kindly agreed to babysit so we can go.  I'm looking forward to a relaxing break, I feel I really need it.  We went to the boat last weekend which was lovely but not the same as a lovely hotel!

I went running last week, for the first time since November.  It was more of a speedy walk interspersed with some gentle jogging, but it's a start.  My grand plan was to do this every day but once again my expectations greatly exceed my reality.  My legs burned for two days afterwards and just as I was regaining my strength I spent Saturday helping on a Beaver activity day, including a long walk over rough ground pushing a three year old.  Once again I was reminded of my limits.  I realise when they said it takes up to 18 months to recover from chemo that it may just be true, as much as I don't want it to be.  It makes me sad, furious and determined for it not to be the case, all at the same time.   All I can do is keep fighting to get back to how I was and try to be kind to my body when it tells me It's had enough for the day.

Radiotherapy info

So, I had my first appointment for Radiotherapy today.  I have to travel to Poole hospital for Radio as Bournemouth don't do it, it's about a 45 minute drive from my house (not in rush hour) so a bit of a trek, today I got the train which takes half an hour.  I think I might use the train rather than drive most of the time during radio as it will be less tiring and also the parking is expensive and always really busy at Poole Hospital.

I will be having three weeks (15 sessions) of radiotherapy and I think a week and a half (8 sessions) of what they call 'boosters', so four and a half weeks altogether.  The boosters they give most people under forty or with a high grade cancer (I tick both boxes ).  The radiotherapy is beams of X-rays that pass through you.  You lie on a cold, hard, slightly tilted table and the machine moves around you, and I think the table might move too, and you get fired with beams of X-rays!  The idea is that X-rays break DNA in cells.  Normal cells quickly repair broken DNA and recover. Cancer cells, by their nature, are cells that no longer have the ability to repair DNA, that's why they keep going rouge and multiplying.  So the cancer cells die as they cannot repair the damage cause by the X-ray beams.  But wait....you though the cancer had been removed by surgery, yes, you are correct, but cancerous cells are determined little buggers, it only takes one cell to be lurking behind after surgery and, boom, another tumour develops.  Hopefully the radiotherapy will zap any cling-ons and reduce the risk of recurrence.  The radiotherapy is directed at all the remaining breast tissue.  The boosters are actually beams of electrons and don't go straight through you, they penetrate a centimetre or so into your body.  The boosters are target at the tumour bed....the area of surgery, and the surgical scar.

The main side effect of radio is fatigue......I've had my fair share of that over the past six months so know what to expect.  There is also the irritation to the skin, like sunburn.  Lots of cream is needed to keep it healthy during the process.  Probably the worst part of it all is going to be the monotony of
going every day for over a month.  I will start in June as I need to have a CT scan first for them to do 'planning', which is the physics of it all and takes a few weeks.  As we have a camping trip to Cornwall planned at the end of May (booked a year ago, pre cancer), my doctor agreed it was fine to wait and start after that.

So, there you go, all you ever wanted to know (or probably not!) about radiotherapy.  Although, I'm sure I'll have some snipits of info to add along the way, and probably some random side effect nobody has heard of before, you know how I like to make the most of these experiences :-)

For now I get to enjoy May feeling reasonably OK.  I have more energy and less pains but still get tired quite quickly and my joints stiffen up by the end of the day....I need oiling!  Please everyone ask Mr Weather for lots of sunshine for me to enjoy, I need to do many lovely things and get as fit as possible while I can.

We're in Plymouth again this weekend, our home from home.  Then back to Bransgore on Monday for the mayhem that is 'Bransgore Fun Day' :-)

Hope everyone has a lovely, relaxing bank holiday weekend.
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