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. ððð
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 ð. (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! ðĪ
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. ðĪ·♀️
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 ð. 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 ð. 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 ððąðĪ. (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....ðĪ.
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. ð.
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 ð.
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 ðð. 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’ ððð.
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! ð.
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 ðĪ·♀️ð.)
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... ð.)
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. ð.
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’. ðĪĢðĪĢðĪĢ)
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 ☺️ðĪĢð.
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 ððĪŠðĨģ xx
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