Saturday 22 December 2018

Weeks 94-108: Nipple tattoing, modelling and turning 40!

Weeks 94-108: Thursday 07 September - Friday 21 December 2018

Well... wow.  Another 3 months has gone by, and I literally do not know where the time has gone.  And that’s a great thing :-)

Since the last blog post, so much has happened, and yet also so much remains the same.  (Nope, I am not about to come all over philosophical-like, you will all be glad to hear!). 

The thing is - there are times when I absolutely forget that I have ever had cancer.  And that’s a GREAT place to be at mentally.  😁😍😜

I still have thin hair, and feel like I look like a balding alien... but actually, I have just passed my 2 year ‘cancer-versary’, and it didn’t actually phase me.

Don’t get me wrong - I know that different people have very different views and experiences of their own cancer.  However, I hope that anyone reading this who is behind me in terms of treatment timescales takes hope.  

I am not going to patronise or spout off that everything is going to be back to normal and fine after the event... because things are not, and can never be the same.

I am also not going to lie.  I do still have long term side effects and consequences of chemo, double mastectomy and surgical menopause.  But its a trade off.  I am alive and living life fully 😀.  (Sometimes too fully lol).

For the record - I do get tired.  And I do get bone pain.  And I wake up every day with burning feet and exceptionally sore hands from neuropathy.  It’s kind of like severe arthritis but without the swelling or the heat.  It does however feel like I have monkey claws at times...

And I can have major issues with stomach muscles not quite knitting together fully after surgery yet.  And issues with constipation if I eat the wrong food - I end up looking like I am pregnant and I can literally feel my intestines.  I also have various lumps and dimples within my new breasts made from my tummy fat - just how the fat has settled - but it makes it a complete bugger to try and check myself for future! ðŸĪ”

I also have permanent sore ribs.  This could be from at least one of them being cracked and sections removed during surgery.  Or it might be beginnings of osteoporosis.  Or to be blunt, I also need to keep an eye on it unless it turns into anything more scary.  But that is where my medical team come in, and its why I have regular bone infusions of biophosphates.  (Next one due in January.)

But life is for living.  And not everyone around me always appreciates that I do have that new perspective.  Yes, I may have returned to being a workaholic and being a ball of energy - and originally promised I would not go back to doing the kinds of crazy hours that I used to.  However, that is me.  ðŸĪ·‍♀️

I don’t intend to spend all that energy on work though... I enjoy helping others too, seeing family and friends, and actually trying to make a difference.  For me its not about money or status.  It never has been.  Even after all this time, I am pretty sure that some people don’t get that about me.

To some extent, I want to chuck everything up in the air and go travelling.  I still have a notion to do charitable work abroad... Except I would miss my puppies far too much, and they would never understand how to work Skype lol.  (I am also not sure if that is a mid-life crisis thing though lol.). So instead, I am going to put my business skills to their maximum, and I am looking into setting up a charity in the Scottish Borders.  

It’s a slow and steady trickle of activity so far, as I am doing all the prep during nights of insomnia, and on a Friday when I have my rest day from work.  (Oh yeah, I decided that in order to make sure I don’t do excessively silly hours at work, I now try to do a 4 day compressed week - on the basis that if I am physically not in the office, I can focus on relaxing things on the 5th day - like the charity stuff, seeing my family and using their hot tub too :-))

My mind continues to be a whole spiderweb of actions, consequences and options - so for me, life is just a whole basket of exciting possibilities - and I am loving coming up with ideas for action.

Anyway... Since September, my life HAS been a whirlwind, and I am indeed now living life to the full.  However, in saying that, my tolerance levels for shallow people, bullshit and general malaise is possibly at an all time low, because to be honest, I have much better things to be doing with my life these days 😝.  There are also loads more people who are so kind and generous with their time, spirit and energy, so that on the whole, I see things positively and choose to be surrounded by those people instead.

Socialising has been a big thing since my recovery from treatment - in fact, its been a feature throughout my treatment!  I truly believe that for me, being surrounded by positive people and doing various activities has kept me both sane and active.  There is something about making sure that whatever shitty treatment or illness that you have to face, getting up, getting dressed, coffee and laughter is the way to go.  

(Funnily enough, my chemo tastebuds have now reverted back to what they were - so actually I can’t tolerate too many sweet things anymore - that can surely only be a good thing for my waistline lol!)

October was a particularly busy month, as I hit my 40th birthday and decided to celebrate Linz-style - and spread out my birthday celebrations for as long as possible - think I got it up to about 10 days overall :-).

Part of these included multiple parties with family, but I also put on a larger party for those people who got me through my treatment - just to say thank you.  I was originally laughed at, as I sent out initial invites with a year’s notice - but it paid off 😂.  It was a fab party night, with the people who meant most to me there.  There was a photo booth, candy cane cart and lots of dancing...  I don’t think I sat down all night - although I think my feet, neck and shoulders paid for it the next day ðŸ˜‚ðŸ˜ąðŸĪ”.  (The whole head-banging/moshing thing was really funny - all I can say is thank god for the extra strong hair glue which kept the long wig in its place!)

I was also overwhelmed by the sheer generosity of friends and family. I had said I didn’t want any gifts for my birthday, however if anyone wanted to throw a couple of pounds in the charity box, then that would be great.  In the end, I ended up raising nearly £800 for the charity which helped me so much through my own treatment.

That same week I was absolutely honoured to be chosen to be a Breast Cancer Care Model at the show in Glasgow Hilton.  And that was just an AMAZING experience...

I meant to blog about at it the time - but actually, the time got sucked up through costume changes and blethering...  who knew I can talk that much....ðŸĪ”.

Anyways, it was just such a spectacular experience.   Arrival on the Wednesday had us trying on our allotted outfits, which had all been sourced from various designers as well as High Street retailers.

None of us knew what to expect, as we were called through to the fitting room, four at a time.  I was one of the first, and the first thing was to get used to having a personal dresser.  That was funny.  😊.

The whole thing took me back to when I first performed in a drama group way way back in 2004, where I spent more time backstage in my underwear between costume changes... it was the same at the fashion show.  (And to be fair, after all the medical stuff and no dignity in past two years; standing around in nude-coloured Bridget Jones pants and bra was a breeze.) In fact, one of the funniest moments was when the dresser was trying to fix the lining of a very expensive dress... 

... “I can’t get the underskirt down” she said.... “that’s my pants” said I, whilst trying to hold them up to my waist, laughing heartily.....

Anyway, the costumes were truly amazing:
  • First off, a pink creation with a stunning long baby pink dress, a fluffy electric-pink coat and my pink wig was the outfit I had to strut my stuff for the ‘love theme’.  That was my first jaunt out onto the catwalk, and it was nerve wracking.  Talk about out of my comfort zone!  But looking back, and at one of the photos, I have the biggest smile ever on my face :-)
  • The second outfit was to reflect the 90th birthday of Mickey Mouse - and I went out wearing a black jumpsuit with white polka dots, and a white spotty blouse - along with my long red wig and Mickey Mouse ears.  And I literally went out dancing.  The music to that one was “Hey Mickey” - and you just can’t help but sing and dance your way to that song...  I literally danced up the catwalk (By that point I think I had got over my nerves!)
  • The next time down the catwalk, I was paired up with an 80-year old ex-ballerina - and we were were animal prints... and pretended to be lions and tigers -  complete with ‘paws up’ and growling.... yip... it was definitely a fun time!
  • Finally, we got to the evening wear section, so this was an elegant silver dress and back to my pink wig.

On the day of the Show itself, I think I had had about 4 hrs sleep - sharing a room with Model Liz, we had had a blether the night before after our models meal out - we actually were not late to bed, but getting to know peoples’ stories is both inspirational and emotional, and bonds us all together.  There is a lot to be said for being in the company ‘of people like me’, who just get the whole range of shit that you have been through, without actually having to explain or try put into diplomatic words.  There is a real strength in having that network, which can’t ever really be replicated elsewhere, or by the best intended people who have never been through it.

There were 2 shows that day, and whilst everybody got wined and dined front of house, we were backstage getting hair and makeup done, and eating on the run.  There was quite a lot of sitting about too, but actually it was quite nice to sit and have a wee foot massage and literally a quick 40 winks.  I was also quite fortunate, as I opted to go for wigs, and literally flung my hair on at each costume change 😂.

Ian Todd and his team of stylists, dressers, hair and make up volunteers were truly amazing.  They give up their time to come and do this every year, and kept us all going when we were starting to flag.  We all became like a wee family, and continue to be in touch - again, its being with ‘people like me’ that actually really helps - and to know that other people have went through the same kind of shit that I have, without having to re-hash, justify or over-explain it.

Being a model really took me outside of my comfort zone, as I really do hate being in the limelight - contrary to what people think of me - but it really was a defining moment for me after everything I have been through - and I felt amazing in my outfits 💗😊.  Feminine, brave and like anything was possible...  Even when I had to walk down the catwalk pretending to be a wild animal!  However I clearly shook off my nerves when I literally danced down the catwalk to the song ‘Hey Mickey’ 😜😜😜.

In a professional context, I have successfully returned to work, and actually really enjoyed being on a three-month leadership development programme.  The reason for including this here, is because one of my major fears through chemo was suffering from ‘chemo brain’.  And during treatment I definitely did.  

I would forget words, struggle with concepts, even gave up reading due to lack of ability to focus.. and being blunt, I was really worried in case it harmed my long term cognitive function.  However, returning to work, problem solving and doing this course has really opened up my mind, given me lots of personal challenges and connections, and actually has really fired my brain up in all kinds of exciting ways.  So, I am pleased to report that (as far as I am aware, and because nobody has told me differently yet), actually my brain appears to be working as normal, and I am even more inquisitive and questioning things than before!  (Not sure that will always be gratefully viewed by everyone pmsl.)

I am also pleased to report that I have also continued with my Nordic walking, and trying to get to the gym regularly.  I don’t always succeed with regular exercise due to my working pattern, and I am not sure its doing anything to change the shape of my body or help me lose weight... but I am focussing on bone strength as opposed to aiming for a barbie doll sylph-like body.  I never was vain anyhow, and having cancer certainly has not changed my mindset on that! 😆.

In saying that, I have also returned to hospital recently to have my nipples (protrusions) tattooed. Although I am unlikely to become a late-stage pole dancer shaking my breasts for all to see, there is something about having nipples coloured in which kind of makes me feel complete.

I did not opt to have a large scale mastectomy covering tattoo as of yet.  But there is plenty of time...  Instead, my mum came with me and helped me ‘choose’ what size and colour of tattoo I was going to get.

To be fair, I was actually going to go in on my own, but mum has literally seen all stages and consequences of surgery and treatment with me, so I opted to ask her advice at this final stage.

The nipple tattooing process is fascinating in itself.  I was not really sure what to expect, but the actual tattooing was done with no anaesthesia or numbing cream.  And its done with pigment, rather than Indian ink.  This means that it will fade within about 18 months, but I can go back and get the process repeated however often as I need / want to.

The actual sensation of the tattooing I can only describe as like having an electric toothbrush go over my skin.  I don’t actually have previous experience of that, but its the first thing that sprang to mind.   The reason for that is because I have very little sensation in my chest area nowadays, so can’t say it was in any way painful or uncomfortable...

Choosing the size and colour of the tattoo was also funny.  There are literally hundreds of shades of pinks and browns, so initially, my nurse painted one of each colour on me so I could judge how I felt / look.  She also painted 2 different sizes on me to see what felt natural to me. (I did always promise this blog was going to be honest lol ðŸĪ·‍♀️😂.)

Well, after seeing myself in mirror sitting down, I then had to see full length mirror of myself to best judge the lie of the land, so to speak.  So once the necessary adjustments were made, the breast care nurse got down to business with the actual tattooing machine.  St. Johns’s is the specialist centre who offer this service for people coming from all over Scotland, so I felt in safe hands... although I was a guinea pig for the new machine, so going back in a few weeks time to check how things have settled and get a top up.

(One of the funniest parts which I still laugh at, was the sizing guide for the tattoo.  If you think of old school days, and the stencils of different shapes and sizes you used to draw round?   Well, that’s what was used on me... and I opted for one of the smaller sizes... 😜.)

My nurse also spoke to me about another local woman who is trying to arrange something akin to a charity calendar similar to the one made famous in ‘Calendar Girls’... and would I consider being part of it.  So I said yes...
In for a penny, in for a pound they say - and I am all for making sure that cancer is not a taboo subject, and people are not scared of what happens - and also to show that there is life at the other side!  And to be honest, the more money that can be raised to help people in any way, shape or form is a good thing.

So... that about just about brings the cancer blog up to date.  I have just returned from holiday in Malaga to try and press my own re-set button in terms of fatigue, but now re-invigorated and looking forward to more exciting adventures.  They may not necessarily be health related to me, but I still feel compelled to help others.  And I talk.  A lot. 😂.

I had a really good chat with a close friend recently about how I felt about losing my fertility.  To be honest, it wan’t something I have talked about in great depth before.  Before cancer diagnosis and treatment, I had opted not to have children. 

Going though treatment, I was actually given the option of harvesting my eggs.  However, it never really preyed on my mind much, given my previous lifestyle choices of being a workaholic and being an auntie.  I had talked about it in medical terms with the genetic counsellor, the gynae surgeon, the breast care nurse and my mum.  For me, I wanted everything out of me that had a cancer risk ASAP, and prolonging the start of chemo to harvest eggs, which may or may not have been successful / been sore / required genetic intervention to remove the BRCA1 gene... all just seemed too convoluted.

So I am happy with my choices.  A few friends are either pregnant or recently had wee babies.  And I am really happy for them. And I really enjoy baby cuddles, as well as wrapping up the teenagers in all embracing / embarrassing / awkward hugs.  But I really do enjoy my life the way it is, and being a pup-dog mum, and an auntie and god-mum to many.  I get to do all the fun stuff, and when I get irritated, I can give them back lol.  I also have a lot more disposal income.

(And being menopausal now, aside from feeling like a dried up husk, facing night sweats and insomnia, I can give an excuse for being moody lol - without playing the ‘cancer card’.  Now it’s ‘just the menopause’. ðŸĪĢðŸĪĢðŸĪĢ)

In a few days, it will be 2 years since I had my initial lumpectomy and had to stay in hospital overnight, getting out on Christmas Eve.  My ‘cancerversary’ of diagnosis didn’t bother me as that was just some abstract day.  But the reminder of the surgery to actually remove that bastard cancerous tumour somehow feels more momentous.  Anyhow, I am currently (and grateful to be), No Evidence of Disease.  A NED.  

I get my manual hands-on check by the breast surgeon in a few weeks, just two days after further nipple tattooing... that might be interesting, as my nipples will be covered in paraffin cream and gauze to stop the tattoos drying out and getting crusty... oh well - will no doubt make for another interesting blog ☺️ðŸĪĢ🙊.

They will never tell me I am truly cancer-free, but as I have said before, there is no point worrying about something that may never happen.  So I will barrel ahead with lots of adventures, and occasionally check in with the GP as and when I need my medication reviewed.  I still feel lucky.  And very very grateful.

On that note... Happy Christmas peeps.  Till next time 😍ðŸĪŠðŸĨģ xx

Sunday 9 September 2018

Weeks 81-93: Work, nipple construction, exercise boot camp and plans for my future...!

Weeks 81-93: Thursday 07 June - Wednesday 06 September 2018 (kind of lol)

Wow... well is has been 3 months since I last wrote a blog... and LOADS has happened.

I have returned full time to work.  And then some.  

I did a scary exercise recently which I was trying to work out how many excessive hours all my teams have worked since Christmas.  I was worried about their welfare, over-work and I am trying to make it up to them - encouraging better working hours and work/life balance.  Some of them have been working crazy amount of times in my absence.

And then just in the past few days, I calculated my own excessive time in the last 12 weeks.  And I could kick myself.  Despite all my best intentions, my working hours have ranged between 50 and 70hrs a week.  Which is just ridiculous.  There are times when I haven’t even seen bloody daylight.  
And... Most of my exercise regime has gone down the pan 😟.

I mean - good that I am feeling so healthy that I can do these hours, but bloody hell.  That was never the intention when I was lying in bed nearly dying.

So... given this eureka moment, I need to change.  Seriously.  (But wait till the end of this blog to find out more lol!)

Healthwise over the past 12 weeks I have actually been really good.  The Sicily holiday I was actually the healthiest one out of the four of us, and I came back to have my pre-med and then subsequently my follow up plastic surgery appointment.

My surgery was actually conducted at the Golden Jubilee Hospital - a hospital that helps deal with waiting time surgeries, but also because my consultant works out of there one day a week.  

It was actually good though - mum and I stayed in the adjoining hotel the night before, and even went down to have a couple of gins and a gooey dessert and a laugh.  It was a strange concept to be ‘celebrating’ before the surgery- but this moment really marked a pivotal point for me - this was the last main surgery that was in my treatment plan - tidying up fat deposits, removal of excessive scar tissues... and making nipples! 😝☺️.

And it was weird - despite this being a minimal operation of 2hrs, as compared with my major 12hr double mastectomy and reconstruction - I was actually quite emotional about it.  I don’t know if it finally started to come home to me about everything I had been through.

Prior to surgery I was put in a a glass cubicle along with another lady - not formal hospital beds, but leather recliners.  I got to look out the window to hills outside... and I had started to cry.  Not anything dramatic like looking like a clown with panda eyes and streaky make up - just a few tears rolling down my cheek.  

However, I did the Linz thing and pulled myself together and got myself into the sexy backless gown and medical stockings.  These days I don’t even need assistance, and I clearly don’t worry about my modesty much.  This time at least I got paper pants to wear too lol.😂😂😂

Then my surgeon came in and we were having a laugh and he started drawing on me with black permanent marker.  Big scrolls on my hips and also on the sides of my beasts - they looked like childish snail shell drawings!  (I took photos lol). These were the areas which he was going to be using liposuction to take away the excessive fat that had gathered in places where it shouldn’t after my original op.  (This is standard practice - supposedly this procedure may be undertaken a few times depending on how things settle!)

He asked my if there was anything else he could do - so I gave the answer I am sure many people give - “A sylph-like body?”... but then I don’t think the NHS would pay for that... he explained how he would make my new nipples (‘protrusions’), and also how the original cancer site had some thickened scarring, so he would try and remove that too.  And then I was off!

Got trollied to the ante-theatre area where I was cannulated and prepped for the drugs going into me.  It was really funny, as it turns out that the nurses upstairs had forgotten to give me the ‘magic cream’ on my hand to numb the needle going in... the theatre nurse was not impressed by the ward nurse... and then I explained it didn’t matter as I had got through multiple needle sticks without it in the last 18 months...

The anaesthetist double checked everything with me again, and said she was not planning on using gas/air mix - she found in her experience that this aided quicker recovery and cut down vomiting... I said I was all for that given my experience in that department!!!

So... wheeled in, didn’t feel a thing, and woke up in recovery a bit groggy.  They let me wait a wee while and gave me some water to drink and some pain relief.  Turns out although I had been written up for diahydrocodiene, they gave me tramadol.

I then got taken back up to a ward and got told to eat something and drink again, and then when I felt ready, to start getting dressed.

This was a funny point.  I got a phone call from a recruiter telling me that I hadn’t been successful in progressing to interview for a promoted post within my current organisation.  I don’t think when he phoned he realised I had been in surgery that day, or maybe he did and he was hoping I would still be under general anaesthetic lol.  Either way, and being honest with hindsight - I genuinely was ok - I am a great believer in what’s meant to be, will be.  And I still had a job I loved, so there was no down side.  With hindsight, I have no idea what I actually said to the recruiter in a tramadol induced haze, apart from saying thanks very much and I had just woken up from surgery.  Talk about too much information lol.

However, I felt bad about mum.  During the whole time I was in hospital there really wasn’t very much for her to do - she had seen me off at 8am in the morning, and she hadn’t been allowed to see me until 3pm.  However, given that I had been awake from about 1.30pm, I got all my stuff together and chased to get my discharge letter in my hand so that literally as soon as mum came in, I could depart.    (I really wanted to hit the M8 prior to 4pm as otherwise the traffic is really crap.)

So my mum drove my car for the very first time, when driving me away from hospital.  She is a great driver, and all I can say is thank you.  I know she was nervous about driving my car, and that she didn’t know the way home, and that I was giving her directions (I thought quite cogently given I had just woken up from a general anaesthetic) - and she was great.  And we stopped for my obligatory post-surgery McDonalds 😀.

Took another Tramadol that night and the following morning - felt light headed and drunk.  I decided that they were not for me, and put the rest of the 100 packet stash away to give to pharmacy for disposal.  I switched to paracetamol instead.

The following day I let myself watch crap tv and sleep, and the Friday I worked from home on the laptop and got a phone call handover from my boss - I was about to be covering him for the following 3 weeks - no rest for the wicked as they say.

So on the health front, that’s more or less it.  I had a follow up check with the plastics clinic a week later - supposedly I heal amazingly well.  They took the dressings off and I saw my new nipples for the first time, and they cut some excessive stitching away from my skin.  (Not sore btw)😍❤️😊.

I still had some black marker markings on my skin - I had had to be careful when showering, but other than that - all is good.☺️☺️☺️☺️☺️

So... I have follow up appointment with plastic surgeon at end of September to check everything going to plan - and then I can get signed off medically to have my nipple tattoing done - basically where they get coloured in to make them look normal again... I can’t wait.  

Of couse, I might have to deal with the stray hairs that are currently there - because people - that is NOT a myth.  I do indeed have hair on my nipples caused by the fact that the skin there was taken from my tummy... although that begs the question if I have a hairy tummy... I didn’t think I did, but now I feel I may have to get a magnifying glass out and bend myself double just to check....

(Oh and for the curious... I don’t have really hairy nipples which are visible from outer space... I am talking a few bits of bum fluff hair - although maybe that’s not a good terminology pmsl 😆.)

And the tattoos... how can I forget... I do have the NHS option of colouring them in to make them look normal... or I am still tempted with something like ‘Kiss me quick’ hat designs... too tacky?  Only joking... I still think the 3D designs would be so much cooler.... its just that no-one will ever see them... unless I decide to do some kind of fashion shoot and flash them all across Twitter, Facebook and Instagram of course...😇. (It would only be for a good cause and raising awareness of cancer BTW!)

Anyway... as you can see, I have not lost my sense of humour through all of this.  

Other medical stuff - my dental check ups all good, and I went for my blood tests and then the bone infusion thing recently - I cried when they cannulated my wrist.  Despite warm veins, and eating and drinking beforehand, my poor veins on my right hand don’t always like cooperating.  And it still bloody hurts when it goes in.  But... in the long run, this is what I need to do to protect my bones - and I only have 3 sessions left over next 18 months - and I can drive there straight from work, and then go on home afterwards for a snooze.

Despite crazy working hours, I have had a few great weekends with my family - to have fun, take stock and remind myself that I shouldn’t be a workaholic... and actually I have decided a fairly momentous thing - I want to set up a charity to help other people like me.

And actually - I am motivated by the ‘exercise boot camp’ that I went on in early June, run by the amazing Jo Taylor at ABCD (After Breast Care Diagnosis).  The weekend I went on there was just amazing... and I have realised I haven’t even written about it properly!

I did put up some updates on facebook as I went along, so here are some excerpts...

“Hi everyone, I am currently on an exercise retreat down in the beautiful Yorkshire Moors, with an amazing set of women who all have / had breast cancer (both primary and secondary cancers.)

I was initially nervous about doing ‘real exercise’ as up until now I have only spent a maximum of an hour in the gym each session, and walking on the treadmill is not the same as an actual jog where you have specific start and end points... lol.

However, here are some photos from yesterday... I actually have amazed myself, as I think it was a 2.5 mile jog / walk combo, immediately followed by ~4.5 mile cycle.  (For me, some of those miles involved pushing the bike, but I am ok with that lol! ðŸĪŠ)

In the afternoon, we also had an hour’s worth of restorative Iyengar Yoga - and I have loved everything!!!

Don’t get me wrong, there are bits of me that hurt from the exercise - muscles that I didn’t know I had, and other bits which I hope toughen up a bit... (if I continue to cycle for example ðŸĪ—)

We each finished the day with a lovely hand, foot or facial massage, before heading to a local Italian for a lively and lovely meal.

The retreat had been organised by the amazing Jo Taylor (ABCD - After Breast Care Diagnosis), and had attracted funding from various sources - which means that aside from the evening meals, it is completely free to us participants - I can only commend Jo and all the course leaders for organising and delivering this event... a huge task to undertake, and not forgetting Jo’s family who hosted us for lunches too!

If anyone has the opportunity to come on this course... then please do keep a lookout for spaces coming up in future courses... if you are worried about your exercise levels after a breast cancer diagnosis, trust me when I say my baseline levels are pretty poor.  

To put in perspective, just about this time last year, my last chemo had been postponed due to near renal failure.  And since then I have had double mastectomy with immediate reconstruction from tummy fat (July 2017), then another operation to remove ovaries (October 2017), putting me into immediate surgical menopause.  I only started going to the gym to use treadmill and cross trainer for 20 minutes back in February of this year. 

I was always the type of person who worked long hours, and then spent my time going out for dinners / drinks / coffees / cakes... exercise never really featured in my life at all - so you can understand my scepticism about an exercise retreat... but I have to say, I think I am a convert 😄😄😄.

Today’s adventure is a Nordic Walking session... am quite excited as I always wondered about people walking with what I used to refer to as ‘dork poles’!

Anyway... I am not on any form of commission, and hopefully not coming across as some kind  of zealot... but this weekend has really opened up my eyes to what I COULD achieve with some professional support.  I just wanted to pass that message onto others too 😄. X “

“Me again -  having got home and had a bath to ease my newly exercised muscles, I just want to post again about the ABCD retreat, and what we did today... 

This morning was another glorious morning to set off up the moors with Alan and Gaynor leading, on a 2.5 mile Nordic Walk.  We got taught how to use the poles, and learned how to walk... its amazing how you forget how to walk when you first get poles!

Anyhow... all of ladies achieved so many personal bests over this weekend - emotional, physical and also just a sense of self worth.

The entire weekend has so many health benefits - literally body, mind and soul... plus the friendships made over this weekend will really last a lifetime.  And who knew walking with poles properly can increase your calorie usage by about 40% extra??? 

All of the team are so professional and kind, and the weekend was really made by them - they are fantastic people  

I know from my post yesterday, that a few people are interested in signing up for future ones - I know the ones in September and October this year are currently fully booked, but Jo is hoping to run more next year - and there may indeed be late minute spaces for this year if anyone drops out...

If people are interested, please contact Jo directly on the ABCD facebook page, or via Twitter. 

Part of the experience is all about being around the beauty of Saddleworth - I even travelled from Edinburgh to try this amazing weekend - but who knows what will happen in the future... maybe Jo will take her exercise on the road, and we will see it all over the UK! “

So.....   back to what I am thinking about doing... as a eureka moment from long working hours, the realisation I am not getting enough exercise, missing my old scout camp organisation and motivated by trying to find something that can help many people... I am slowly slowly trying to suss out if there is any demand for a wellness retreat in the Scottish Borders.  

My sister lives there, there is spectacular scenery and amenities, and I feel a real compulsion to help others ‘like me’.

Joining an exercise class for the first time is daunting - and being offered information leaflets don’t really do it for me - especially when recovering from illness.  There is something about the bonding over a weekend retreat, immersing yourself in an experience and benefiting from informal support which motivated me to continue with Nordic walking.  Something I would not have ever considered off my own back - but now I have bought my own poles and go as part of a group once a week.

So... we will see.  I am cautiously optimistic but with grand plans. 😍😍😍. I have set up an informal facebook page, started writing a business plan, and starting to make contact with local groups and organisations to see if they are interested.  No doubt I will occasionally mention it on these pages!!

You know... I feel really blessed that I have got through everything I have done.  I am grateful I have responded to treatment and that I have come through the other side.  The only shitty thing is that my hair has still not come back fully and I am kind of bald at the very front.  My hair is growing soooooo slowly and despite putting hair products in my hair, I still look like I have either slicked it back like a skull cap, or been near an electrical socket - there is no inbetween.  It feels so vain, but I really hate my hair. 😕

However, I then need to remind myself to be grateful.  Some people don’t ever get to this stage, and there have been a number of deaths recently.  It can be quite difficult to go on Facebook and Twitter for that reason - especially when it is ‘people like me’, same diagnosis, same age - different outcome.  I am not being morbid - its just a harsh reality.  And something which I need to be ever vigilant for in coming years.  Hence my desire to make sure I have healthy mind and body going forwards.

Coming up, I am still planning on being a busy bee... in a fun way.  I have another retreat with another Charity - I was lucky enough to get a space, and we are doing a sponsored walk on the Sunday to raise funds for future events.  That too is down in Manchester.  It’s great that there are so many people looking to support people with cancer - its also a shame that they have to exist at all...

I am also due to meet up with the lovely ladies from the ABCD retreat, and I am going to be a Breast Cancer Care Model.... and have my 40th birthday / ‘thank you for keeping me alive’ party... so its all systems go from here on!

So... watch this space - it will be tattoo stories and me trying to change the world from here on in lol 😝.

Till next time peeps x

Tuesday 5 June 2018

Weeks 68-80: Returning to work, Challenging perceptions, Becoming a model and New nipples on the horizon...

Weeks 68-80: Thursday 08 March - Wednesday 06 June 2018 (kind of lol)

Wow!  A whole 13 weeks (a quarter of a year!!!) have passed since I did my last cancer blog post... so much has happened!  

I apologise... this may be a very long read.  Maybe take it to the bathroom if you need to pass some time lol ðŸĪ”ðŸĪ”ðŸĪ”.

I actually write this from holiday in Sicily.  This is not to gloat, but actually it’s so hot here now, that it is good to find a shady spot or an air conditioned room to get some peace, coolness and time to reflect.

It’s funny, I never used to do much reflection.  Overthinking and overanalysing everything yes, but reflection on personal life no.  But maybe having cancer has proven to be a good thing for me in that regard 😉.  (Always seeing the positives in life lol.)

So... where to start... well I started my phased return to work on Tuesday 13 March after having my back to work interview with my new boss the week previous.  The day before starting back proper, I visited my sister, and driving down I had a momentary panic of what I was going to wear to work.  I had recycled most of my previous workwear on the grounds of changed body shape, and although I had kept a few dresses, I felt out of place, out of kilter and out of shape.

My sister was about to go and see one of her dog walking clients, so offered to drop me at Next so I could have a look.  Well, I am proud to say that 25 minutes later I was standing outside waiting to be picked up with a new suit, 2 tops and a pair of shoes in my bag - and a bottle of wine from Marks and Spencers - hooray!  I am not one for shopping at the best of times, but my new shape meant I could actually fit into normal Next-size clothing - and I am not one for mucking about 😜😜😜.

Over dinner that evening, I confessed to my sis that I still didn’t like my hair - it was thin, lifeless, dull and mousy brown - so I had already bought new navy and black skull caps to go with my work outfits.  My sister pointed out that she thought I was using them as a security blanket, and that waiting till my hair grew fully back to stop wearing them would be yet another transformation I would have to go through, with people exclaiming over the change.  And she was right.  (Sis - please note - I do acknowledge when you are right lol!)

I suppose the skull caps were (and still can be) a security blanket when I am feeling vulnerable.  I don’t like people staring at my thin / balding hair, and an alien-like high forehead.  I feel really ugly and naked - which is really perverse, as I actually really liked it when I had a shaved head!  Maybe it’s because the hair has not grown in evenly and I have to brush it forward to hide the bald bits.  I also have to get over myself and realise that no one is really ever actually looking at me ðŸĪŠ.

Anyway... my lovely big sis gave me a solution to that too... “let’s both dye our hair this evening”.  So we did.  It was actually a purple dye, but given I literally had virgin baby hair, I only left it on for about 10 mins before washing it off.  It came out looking great, and a little bit thicker (my scalp was also tinged darker so it gave a false impression of lots of hair lol).  All it actually did was give a purple sheen to my hair but it was my first foray into hair dying post-cancer, so I was quite pleased with the results.

The actual best part of the whole experience was when I was dying my sister’s hair for her and confessed I had never dyed anyone’s hair before - she looked at me as if I had committed high treason, or that she was contemplating some kind of murderous thought - I did laugh and say that maybe this would be long awaited vengeance from when she cut my hair with blunt scissors when we were kids... 😂😂😂.

Going into work the next day was really good actually.  Occupational Health had been really helpful in guiding my return.  Normally my organisation assumes that people are fit to return when they can come back 50% of duties and hours.  My programme was very much tailored in relation to getting me into a routine to try and manage the fatigue and ongoing pain management.  They even offered to make sure I got a parking space - but I declined that on the basis that if I had to park offsite, the 10 min walk would be good for me 😀.  I had annual leave to use up before I returned as well, so as Occupational Health explained, this should be time for me to actually enjoy time off like normal people do (I paraphrase that BTW - they used better language lol!). I also still have 10 days annual leave to carry forward to next holiday year - I get to use that for my next operation I think!)

Given that I had actually been off work for 15 months in total, I had an overall 10 week phased return, with the following pattern (for anyone who is facing similar after their treatment):
  • Weeks 1 & 2: 4hrs/day for two days per week;
  • Weeks 3 & 4: 4hrs/day for three days per week;
  • Weeks 5 & 6: 8hrs/day for two days per week;
  • Weeks 7 & 8: 8hrs/day for three days per week;
  • Weeks 9 & 10: 8hrs/day for four days per week;
  • Week 11: Back to full time.

Of course, I did try and stick to the plan. My work family were very good at chasing me out of the door when my allotted time was up.  The first month really was all about getting up to speed with things, but I had a growing sense of frustration that 4hrs a day really wasn’t enough time to get anything done!  It’s also hard to return to a job when the organisation has changed significantly, your job has been done by someone else, and the workload has never really stopped - and in some cases got even more frenetic.  And in truth, I was also battling fatigue, pain and proper brain fog. 😕

The first couple of weeks I came home and slept.  And sleep on the days off in between too.  I was trying to continue going to the gym as all the research says that maintaining fitness evens out the peaks and trough of fatigue.  But by god was it hard.

Being at work required so much more concentration than I had anticipated, and I was trying so hard to be like the Linz I was before.  But everything felt a bit like my brain was wading through treacle.  Actual processing of information took a whole lot longer than normal - my brain is normally like a spider cobweb full of about 20 different scenarios and consequences for every single thing I do.  Those first few weeks back at work, I was lucky if I could identify polar opposites of a scenario. 😟ðŸ˜Ļ😔.

I took a lot of notes, and thankfully was not really a key decision maker in the organisation.  I listened a lot, and contributed where I could, based on my historical knowledge.  But I hated it.  To the point where I genuinely thought there would be no point in me continuing in the job .

I am not used to not being a leader, or a team player, or a strategic thinker, or a do-er.  As one of my close colleague’s describes me, ‘Linz 3-brains’ was literally running on empty.

I have a very strong work ethic, and my core values are all about public sector and not wasting money.  So I contemplated jacking it all in on the basis that there was no way I deserved my salary for being ineffective.  However, by about week 6 I then had another discussion with my line manager and we agreed what I could move away from re-inducting myself in the organisation and resume line management duties for my teams.  It was a great turning point for me, as my energy levels were better, my bone and joint pain was under more control and my concentration was better too.

I was quite flattered during this time, as I had had a couple of approaches from big organisations asking me to apply for some quite big jobs around the UK.  And that’s even when I did speak to them and advised them that I was just returning to work post-cancer.  I think the thing to take from that, is that having cancer does not define you, nor ruin your ability to continue with your career.  It also shows that there are employers out there who really do seek to make sure there are no barriers to employment.

This does take me down an interesting road though nowadays.  Supposedly having had cancer, it is technically deemed a long term illness in terms of equalities legislation.  So application forms now ask 2 sets of questions... ‘do you consider yourself disabled for the purposes of using the Guaranteed Interview Scheme’, and ‘do you consider yourself disabled for the purposes of equalities monitoring’?

To me - I don’t feel disabled in any way - but what should I tick?

On an employment basis - how do employers really feel when they see the two tick applications?  Are they truly assessed fairly or are they seen as a nuisance against a bundle of potentially high flying candidates?   (Based on the fact that if you meet the essential criteria, you should be offered an interview.)

But then again, if you don’t inform them, what happens if you have long term impacts at work?  For me personally, I need to get bone infusions every 6 months for the next 18 months now.  I am generally ok, but will need the day off.  I also have more surgery to face.  Do I declare that and hope that any new employer is sympathetic?  Or hope for the best and hope nothing happens very soon?

The other aspect is if you don’t mark down that you are technically classed as disabled, do you skew the equalities monitoring figures?

Anyway, I digress.  As you can see, my mind is back to functioning on many levels lol.

Suffice to say, I am now fully immersed in work, not quite restricting myself to the 35hr a week - but I love it.  I love the problem solving, I love the workload balancing, I love all the interactions, I love seeing the bigger picture and knitting everything together, and last but definitely not least, I love being surrounded by people and having a purpose.  Work in the wider sense may not be perfect, but I get a positive vibe about the future.❤️😀❤️.

Aside from work, I have been busy in my personal life too.  I was persuaded to apply to be a model for Breast Cancer Care Scotland Show in October this year, and attended the information day recently at the Daily Record / Sunday Mail offices in Glasgow..

I hadn’t realised that so many people apply to be a model - 2 of the gorgeous ladies I met at a BCC course last March after my second round of chemo had been models last year, and told me it was such a great thing to do after the end of treatment and it was a chance to boost self confidence and raise funds too!

Anyway, there are going to be 24 models for The Show in October - there are 2 sessions where we get to strut our stuff -  an afternoon and an evening show.  We are being fashioned by a wonderful stylist called Ian Tod, and the outfits we will be wearing will be based around a number of themes.  I think we get to wear 3 or 4 outfits, and I can’t wait to see how the themes develop.  The photos from previous years are fantastic!

Ian was lovely when speaking to us and getting our measurements, as he was asking us to describe how we each wanted to feel on the catwalk.  Answers ranged from confident, to sexy, to full of fun.  Whatever happens, it promises to be a whole load of fun and drama ðŸĪĢ😇😜.

The rest of the models are all wonderful ladies who range in age from approx 26 - 80, and their stories of diagnosis and treatment are both harrowing and heart lifting.  There are people who have fully recovered / no evidence of disease, some going through active treatment, and others who have stage IV and are incurable.  It was such a moving set of introductions, that we all genuinely have a bond together - ‘people like us’.

Part of the day was also spent having a photo shoot done by the award winning AMAC media.  First off, we had numerous beauty artists doing our hair and makeup (my hair didn’t take long lol), and then Alastair had us posing in our pink BCC t-shirt, and then our ‘going out on a Saturday night’ clothes.  It was then over to Jenny the journalist, to interview us for our wee profile bio which was going into the Sunday papers.  (Link below!)

Going forwards, we are all being encouraged to contact our local papers for more coverage as time gets nearer to the event - West Lothian look out lol...

I could never underestimate the amount of time and effort which goes into organising this event - Dawn, Clare and volunteer Kim put monumental effort into this flagship fundraising event - it literally raises thousands for BCC - a charity which I have benefitted greatly from in relation to Younger Women Together courses, research and information material, and the general helpline when I had various ailments linked to chemo.  

The next stage now is to have a couple of lunches with the models to get to know each other more, and then meet up the day before the Show to try on outfits, learn how to walk on a catwalk, and generally have fun before we strut our stuff on Thursday 25th October.  Mum, Dad, Sister and Hubby have already booked tickets for the evening show - my nieces are gutted that’s its over 18’s only.  My nephew not so much lol 😂 😂 😂.

Aside from all of the above, I have managed to catch up with some friends, made two different birthday DVD’s for my mum’s 60th and my neighbour’s 50th and attended a Shine Cancer weekend in the Yorkshire Dales.  I actually wrote another blog about that for their website, but won’t repeat verbatim here.  Basically that was a weekend where people like me (but with various different cancers, but aged between 20 and 50) got together, chatted, had the opportunity to have beauty treatments, drank lots of fizz in the spa and visited the town where ‘Last of the Summer Wine’ was filmed.  (And no, I did not adopt the Nora Batty look!)

(For info, Shine is another cancer charity where I have benefitted from speaking to people going through different experiences and helping put perspective on life 😊.  For anyone following me who is/has been through something similar, Shine are on Facebook, Instagram and Twitter; and offer various conferences, meet ups and events to socialise and meet up with people who have gone through similar stuff.)

It has also been interesting over this time to reflect on how my cancer has affected those around me.  My husband has stood by me through all this time, and I don’t suppose it has been easy for him at times either.  Me being sick did not stop us falling out about various things, and he did say that cancer was not a special club just for me.

Whilst I beg to differ that point on points of technicality - after all, I was the one who was sick, got surgery, went through chemo, nearly died...  - I have to admit he has a point.  And actually, I also saw what my Mum went through when supporting my Dad through bladder cancer a few years ago.

People with cancer are told to put themselves first - and rightly so.  There is a unique perspective for those who are going through it.  And there can be a real possibility that you may die from cancer itself, or the treatment.  It’s a tough and shitty gig at times.  But, rather than being brave warriors or fighters - to be honest we are at the mercy of how our bodies react to chemotherapy and radiation basically.  There is no war to fight.  And being positive can only go so far.

I have met people who have the most positive attitude in the world - yet they still die.  Medical intervention can only do so much.

There is much research that says if you are healthier in general and have some form of exercise regime it lessens the effects, and stops recurrence.  To be fair, I completely get that exercising keeps you healthy and a good diet is not to be sneered at for anyone.  However, there is no truth to the fact that certain things can either cause or cure cancer.  Certainly not the genetic type that I have.  So when I see stuff in the media, it really irritates me.  The blunt fact is if you are healthy and exercise your body may be able to recover from surgery and some medications quicker - but sometimes it literally is just in your DNA whether you are going to be ok or not.

But I digress... cancer not only being a club for me.  What of those family members who support us?

As I said, my husband stayed by my side throughout - despite some very dark days and me telling him to leave me alone and go get a better life and a better wife.  (Honestly, I can’t believe he never took that ‘get out of jail’ card!   ðŸĪŠðŸ˜‚😀).  

Actually to be honest, there were times I just told him to fuck off and never come back too. I am hardly a saint.  Whilst I didn’t have many chemo rage (or now menopausal rage) moments... he has stayed.  He reminded me that he made marriage vows of through sickness and health.  And arguments too.ðŸĪ”

Throughout my treatment I insisted on him keeping a ‘normal life’ - ie going to work, having friends over, taking his mum on holiday.  That’s partly as I didn’t want to feel guilty about spoiling his life, and actually because I needed solitude and peace.  That’s possibly a little selfish of me, but its not nice to be around someone who is constantly groaning like a zombie and vomiting everywhere.  

But he had a tough time too.  He initially refused to speak to anyone (friends, family or professionals) about what he felt about my cancer, or the effects on him.  Many people asked him, and he always replied ‘fine’.  He went through taking on more responsibility at work, which he enjoyed, but never told me, as he didn’t want to bore me supposedly.  I had been quite blunt to him too, as I had initially counselled everyone about dealing with my cancer - but told him he needed to get his own support network as I could not deal with his stuff. 😟

After some ups and downs and me nearly throwing a plate at him one time (in a previous blog), and once I was on the up healthwise again, we had a proper talk for the first time in the 15 months since diagnosis.  I then started to understand how my crappy cancer affected him.

For any spouses or carers following...  I finally understood that he had been through grief about losing me, concern about the practicalities of me living and dying, rage that it happened to me, apathy when things started to overwhelm him, and feeling inadequate that he could not take the cancer away from me.  He also thought that I was never interested in him, and actually, given that I was upstairs in separate bedroom being sick... he was also lonely. 

He saw me go out to meet up with friends when I was on my ‘good weeks’, and took the brunt of me when I was at my shittiest. 😔

And to the same degree - my family felt all of the above.  My mum took early retirement to help look after me, because at times I just wanted her there.  She tended my open wounds after surgery, took me to appointments and chemo.  She also cleaned up my vomit when I had been sick in public.

So yes.  Whilst cancer itself does impact on me directly and its me that went through the physical stuff, I can’t ever underestimate the emotional impact it has had on those closest.  That’s why charities like Macmillan and Maggie’s Centres offer support to family members too.  Again, for anyone following - access all the support mechanisms possible.  

Ok - doom and gloom and serious bit aside now, I can also talk about medical updates and boobies. ðŸĪĢ😝😊

During this last 13 weeks, I do continue to have neuropathy pain in feet, and joint pain in knees and hips.  I can take me a little while to not walk like John Wayne in the mornings until the drugs kick in lol.  

I also have continuing pain (dull ache and sore when pressed) in my ribs / solar plexus.  I am pretty sure one GP thinks I am a hypochondriac, because he has dismissed it as a fatty lump that everyone gets.  The fact that it is still sore since beginning of February is neither here nor there.  I feel like I should maybe give it a name or something seeing as it has taken up residence in my body lol.

I had went to the GP around the beginning of April, and he started off by saying I should stick to seeing one doctor as they doesn’t have time to read my notes each time I come in.  He then gave me a row for not going to see the doctors often enough - I have been 3 times in 15 months since diagnosis...!

I have to say at this point I was a little ticked off.  I mean, I thought I was being good by limiting the amount of visits and not wasting their time?  And I only ever went to the GP that was allocated to me when I rang up.  However I wasn’t in the mood to argue that day - I actually only wanted to ask for increased pain killers as I had developed an agonising pain in my shoulder which I had kept or 4 weeks by that point, but was definitely at the stage where it had kept me awake for 4 nights straight.

Anyway... he examined me, told me about the fatty lump, prescribed me Amitriptyline to basically knock me out to sleep, and sent for a same day x-ray.  So I trotted off to hospital where I found that he had actually commissioned a wrist x-ray as opposed to shoulder one.... oh, how the radiographer and I laughed.... ðŸĪŠ.  

After a 4 week delay, it turns out nothing of note on the x-ray and I am supposed to go back for a review of medication.  The GP had already indiated that it might be rotator cuff damage, or a trapped nerve, and I might need physio.  But not bothered going back to see him, as I didn’t really like him.  And I came off the Amitriptyline after 4 nights.  It was horrible and gave me a hangover feeling in the morning.  NOT a good thing for driving to work!!!

On the upside of all of this, I have also now seen my Plastic Surgeon about follow up work to my reconstruction.  ❤️😉😍😊❤️

My appointment was on 22nd May, and basically within the next 12 weeks, I am going in to get some tweaks done on my breasts (balancing them up and doing some liposuction to even them out), he is going to clean up the scar tissue which was caused by some wound healing problems, he is going to create my nipples, and he is also going to take the excess skin away from my hip scars too. And its all going to be done in the space of 2 hours ☺️☺️☺️.  

I will be booked in for an overnight stay given my history of fainting post-op (and clearly because I love hospital food lol), but I should be back to normal life within about 3 days.  This is just amazing, and such a tribute to the skill of the surgeons for the original procedure, and his continued skill to ‘finish the job off’.  

After this, I think it is another 3-6 months for any tattooing to be done, but I am really really excited.  Looking back now, the last 18 months has sometimes been a turgid slow painful process... and other times it has gone in a flash.

I already have my pre-op assessment on 20 June, and actually, to basically give me peace of mind, my Plastic Surgeon has also referred me to get an ultrasound on that pesky fatty lump.  (Even if I do feel like a hypochondriac, I would rather it was confirmed by using a machine, which produces evidence 😂 😂 😂).

So, aside from medical stuff, I am also going on another cancer retreat this weekend coming in the Yorkshire Dales, courtesy of ABCD After Breast Cancer Diagnosis.   

This charity is run by an amazing woman called Jo Taylor who is passionate about cancer advocacy and is a leader in her field.  The retreat will give us professional advice and support to run 3 miles, bike 3 miles, do some yoga, and then some Nordic walking  - all over a weekend!  I am excited and also a little nervous as this is going to be pretty tough despite me doing gym work.  But it is all linked to be exercise to build everyone up after diagnosis.

Other than that, can’t think of anything else immediately on the horizon, so the next blog may be some time away, as and when I get my next op.  

As ever, thanks for bearing with me - I still really only write this blog for myself to document everything I have gone through, and as an outlet for my buzzing brain.  However, if it interests or helps others, then that’s a bonus.

Till next time peeps xx