Weeks 46-50: Thursday 05 - Wednesday 08 November 2017
So I write this from bed at 4am in the morning, completely choked up with cold, sounding like Darth Vader, not being able to drink water in case I choke myself... but being glad that this is a trivial thing to be worried about these days 😀😀😀.
So much has happened in the past 5 weeks that at times I wasn’t sure if I was coming or going, in both good and not so good terms... but ultimately it’s like giving a spoiler alert... you can all guess there is a good outcome, as I am sitting here writing about everything 😜.
Where to start...?
Well, my last blog I ended by having my ovaries out, being 2 days post surgery, and being plunged into immediate surgical menopause. And it’s been fun ever since.
I don’t think I have turned into the menopausal Godzilla I feared I may become... instead I am hoping that on the whole I have been calm, rationale, and possibly slightly hyper... but definitely with a lust for life again.
As a teaser, I have:
- been away on a celebration holiday for end of treatment;
- been a nag to help my friend get ready for moving house;
- had a careers coaching session;
- started trying to catch up with work emails;
- caught up with many friends old and new;
- found a second lump and had a scan;
- made a YouTube video;
- had follow up appointment with plastic surgeon;
- faced October Breast Cancer Awareness month;
- had my 39th birthday;
- starting planning my 40th;
- got dressed up to support my friends be model at a fashion show;
- taken dad to his cancer follow up appointment;
- got my brother’s genetic test results back;
- been decanted from my house;
- completed a random music challenge;
- discovered what my ‘new normal’ life might be...
Yeah looking at that list with hindsight, this may be a mini novel entry to the blog 😜. Oops. Maybe I should make this into an audible book lol.
Well... to get started, the first week that mum came to stay with me to make sure I recovered from surgery, saw a bit of a family crisis with my niece who was getting bullied... nothing like a bit of family drama 3 days after my op to get me out of bed, motivated and rushing over to see her, and to compose a particularly strong (but polite) letter to the school.
Whilst mum had done all the driving, I am stubborn enough to want my own freedom, which is why by the Saturday, 5 days post surgery, I ended up driving myself into town, with parents in tow. The absolutely amazing thing is that despite me having been operated on, my entire torso was still numb from the major surgery I had back at the end of July, so actually felt great.... absolutely no pain from the oophorectomy site whatsoever 😀😀😀.
The following week, I was like an all-action comic strip as I finally started to catch up with all friends and family I had not seen much over my big convalescence period from the double mastectomy. Whilst it seems like a bit of a luxury, or “out gallivanting”, it’s actually part of the recommended therapy to get out and about and be active in small doses and to keep mentally active to avoid sinking into depression, anxiety and worry. Supposedly coffee and cake has lots of benefits you know. ❤️. (Waistline is not one of them...)
Whilst I was not very physically fit at that point, and couldn’t do any lifting in case I tore my insides following surgery, I could actually drive for about 30 mins before needing to stop and get refreshments / nap lol. So I just talk / text a lot instead. 😝. I know I am definitely out of the chemo funk, as my brain is completely overactive, and I am back to creating 20 different scenarios for every possible thing that is presented to me 😂😂😂. The only downside is falling asleep at a moments notice lol.
I definitely am taking the opportunity of enjoying the time to spend with all friends and family. I knew they were precious to me before, but new perspective means I literally cherish every moment I spend with people. Of course, I wasn’t able to participate in the ten pin bowling I took the kids to for one of their birthdays, but Mo and I sat and watched, and I even managed to participate in some crazy dancing for a few minutes before I ended up collapsing on the the chair with sweaty tiredness... unfortunately said dancing was captured by my friend and posted on Facebook... really not a good look, but it was fun 😀😀😀.
It was at the point I decided to book a holiday to Maderia with my parents. I just thought that after everything I had been through and survived, I really wanted to get away and celebrate and also chill out. I actually was, and still am, pretty knackered. Whilst I was a bit apprehensive about thought of travelling, the idea of some sun, and being at a point when I would be cleared for swimming was more compelling than staying at home in damp and dreich weather.... so we booked it for the end of October, to coincide with when I was getting decanted from my house for building works. 😀😀😀 (That’s already been subject to a separate holiday blog on Facebook so won’t bore people by repeating it here!)
One good thing about being off, is that I am trying to help people too. Poor Mo, I am pretty sure she thinks I could make a good drill sergeant... but she did ask for help decluttering for moving house. And I am pretty ruthless. I can direct a lot from sitting on a beanbag holding black blacks. I mean... how many cream long sleeve shirts do you need in one style...? 😀😀😀. And that’s before we get started on her craft room...
I took the opportunity of having a careers counselling session too. It came about as I was actually recommended a job to apply for down south... and in exploring how I felt about that and if I even had the skills / confidence / interest to apply, I actually made myself sit down and think about what it is I want to do “when I grow up” 😀.
I went from thinking of giving up my professional career entirely to do something like do up houses or to run a pub; or taking a sabbatical to go travelling for a while, perhaps to do some charitable work abroad; or changing careers and retraining to being a life coach or counsellor; or looking for a fresh start somewhere new where my cancer past will not be known; or... stay where I am currently and try to make a difference once I get back to my current day job 😀.
To be honest, I am not sure what to do for the best for me. I genuinely would love to return to current job and make a massive difference, but I am aware that my own organisation is going through a period of change, and to be blunt, there very well may not be a job for me to go back to! So I suppose that is also uppermost in my mind, as well as knowing what I have gone through in last month, I am not even sure when I am going to be cleared to go back to work yet.
So... no momentous reveal here yet. It’s not that I am procrastinating, but at the moment, I am not sure I am physically fit enough to make life changing decisions yet. Just thinking about stuff gives me a headache, so will wait till I get signed back to work, and then grasp the mettle by both hands and see what happens. Of course, should my post get made redundant before then, then that will put things into another dimension lol.
I started trying to get my head back into work mode to some degree by catching up with a few work contacts and also trying to remember my log in for emails... but it’s funny, after not reading emails for 2 months I realise how much I am removed from things, and struggling to see what’s a priority vs what seems to have stagnated in my absence. So to avoid brain overload, (and mum’s reminder that I am actually signed off sick and not to start stressing about stuff I can’t control), I put the blackberry away for the rest of the month...
Rest of month was quite sociable, partly because it was my birthday and I have an amazing ability to stretch one day into like ten days of celebration.... moi...a drama queen? There was lots more coffee, cake, dinners out and generally fun. I even got taken go karting 😀😀. (I lost spectacularly at race times, but in my defence, I didn’t realise first one was an actual race lol!)
The reason I mention the go karting in particular is because it was the day I found out my second lump was non-cancerous... and I was just euphoric.
The weekend prior to this, I had been putting oil on my surgical scars when I found another pea shaped lump at the side of my breast, just at rib cage point where my breast reconstruction started. It felt hard, small and mobile... exactly like my original cancerous lump had been.
I told myself not to panic as I slowly felt size, shape and location, knowing I would have to be able to accurately tell medical team. I didn’t tell anyone in my family as I didn’t want to put them through any more anguish. So I told twitter and my online support groups. I needed to get it out of my head and into an environment of people who have been there, got the t-shirt and could equally comfort me, console me, prepare me and generally just ‘get me’ in terms of the potentials that this might or might not be.
It may seem alien to some readers of this blog for me to do this and not tell friends or family, but on twitter, I think I only know one person on there ‘in real life’, so it’s quite a safe environment for me. Plus, it’s not exactly a data protection issue lol. But my twitter friends are great. As are the support groups on Facebook - although I am conscious about Facebook group rules about not causing distress to others, so I am more careful what I put there ironically.
Anyway, I was due to be seeing my plastic surgeon for my post op check up on the Tuesday, so decided to wait until then. Have to say it was possibly the longest few days I have spent trying not to worry, tell anyone or be a crabby bitch. But all was good.
Saw the surgeon who was certain it was basically fat necrosis (known side effect from the reconstruction surgery), but to make sure, he arranged for an ultrasound to be taken a few days later. I was actually with my friend Fiona when I got the call from the hospital to ask me to come in for the scan, and supposedly all colour drained from my face (despite me expecting the call)...I guess I was more anxious than I let myself believe...
Anyway, the radiographer was fantastic. This time around (she scanned my original lump back in December last year), she turned the screen towards me and actually talked me through everything she was seeing on screen. She explained that the lump was effectively dead fat with a fluid filled centre, but it was small enough not to need any action, and that it would likely be reabsorbed back into the body over time. She then asked if I would like different areas scanned so I could see what my entire reconstruction looked like, and it turns out I have a few bumps and lumps like that deep inside ... so perversely I was really happy about having dead fat. 😀😀😀
(It was the day before my actual birthday, and I was just euphoric.)
I have a follow up appointment with surgeon in a fortnight to go over scan results more formally and to discuss next breast revision procedures, but all of this was good enough for me!
Actually as an aside, the surgeon had recommended deep tissue massage as well as oil to minimise scarring... supposedly deep tissue massage helps to break down scar tissue and may prevent these lumps from forming. First off, my radiographer was a bit sceptical about that, but also, a doctor on one of my support groups had actually recommended using a vibrator to get the deep tissue massage... I am not sure that Ann Summers does a post mastectomy vibrator in particular, but I could have fun finding out 😂. Of course, I am not sure market testing is an appropriate thing to do in these circumstances, but depending on what happens, you must know I am going to write about it here in this blog....
(However, I will not be going with my mum’s suggestion of using my electric toothbrush. My mind actually boggles with that one 😜😂)
Whilst waiting for all my scans to take place, one of my twitter friends had suggested I made a YouTube video of something random to keep myself busy. Given my drama queen tendencies I don’t actually like being in front of a camera, but it seemed a good idea to do something new. So I did.
I ended up doing a review of Fab ice lollies vs Nobbly Bobbly ones... and the results are here...
I need to adjust the music volume slightly, but will fix and reload it. 😀.
But omg... the most difficult part was actually trying to create a bloody YouTube channel! Anyway, now I have had a go at this, next film may be to compare cava, prosecco and champagne... I have lots of volunteers for that one lol.
Anyway, having had a stretched out birthday, I waited until the day after my actual birthday to start organising next year’s birthday by sending out initial ‘save the date’ invites. It’s actually not so much to celebrate my 40th, but actually me putting on a huge thank you party for everyone who has got me through the last year. So... a large ceilidh and disco for about 200-250 people by the looks of it so far... bigger than both previous weddings combined lol. But I do have a lot of friends. 😀😀😀. And thankfully I am used to organising large scale events 😂.
On a completely different note, I have discovered I have really have mixed feelings about breast cancer awareness month... cancer is not pink or glitzy... but then again if it encourages one person to get checked out, it’s good. But I am a fan of telling it like it is... so I participated in a parallel campaign called Breast Cancer Realities... Cancer is still seen as a taboo subject. People shirk away from it, speak in euphemisms, and sometimes speak from great ignorance (even if well intentioned)!
I was invited to write a public article for the YBCM group on Facebook, which featured a different story every day for the month of October to show the different perspectives and experiences of facing cancer. I literally had 20 different ideas, but ultimately I was asked to write about my experiences with money and the benefits system...
(Search for YBCN’s Breast Cancer Realities page if interested - my story featured on 21 October, but the whole site is worth a read to give perspectives from patients, carers, support group admins and advocates.)
I participated in the Thunderclap on Twitter too. One of my posts even featured in the top ten retweets 😀. I am truly honoured, but more so because I am now benefitting from discussions with doctors and surgeons and advocates on twitter which is something I never thought possible before.
What I will never understand though, is why there are so many different charities competing for limited funding, when surely collaboration and pooling of resources would be better? I also now get annoyed when retailers cover everything in pink with either no or minimal donations to charity, for sheer goal of basically maximising their profits.
Being blunt, cancer is life changing... Some times life ending. There are lots of medical conditions which need researched, funded, and commonly understood... there may never be cures for all. But we should never give up trying to find cures, or trying to make life better for those who suffer from any condition. The stark reality is that people do die of this horrible disease, and during October, two of my Twitter contacts did pass away. That’s the real Breast Cancer Reality.
Anyway, my own twitter storm composed of both funny and sometimes not so funny realities that I have faced... these were posted all on twitter 😀 (and you can track my mood depending on the various discussion through these lol!)
#BreastCancerRealityCheck
- Having constant pain in my hips and knuckles as long term consequence from past chemo treatment...
- Having lots of lovely wigs that make me feel awesome... and being too hot with chemo sweats to wear them 🤔.
- Having wonderful people around you who are willing to do everything and anything for you... even the disgusting stuff!
- Being told you have high risk of getting more cancer due to genetics... then choosing to have double mastectomy to be safe 😜.
- Having double mastectomy but getting free tummy tuck in process... nice silver linings occasionally 😀.
- Any thought of intimacy and relationships blown out of water as don’t feel sexy or even womanly most of the time... (or maybe that was just me lol) 😱.
- Being unsure how to cope with physical and emotional scars going forwards... smiles are good cover up for everything... and nobody wants to know anyhow lol 😉
- Writing a blog for personal use, sharing it with others at their request, and then realising it makes people squeamish... 🤢.
- Writing a blog and then realising people’s views of you have quite significantly changed... (I have very dry and TMI humour)
- Becoming a cancer bore. But at times, it is the only thing that consumes you and eats you up (literally). Does make you good at medical pop quizzes though.
- Playing cancer bullshit bingo. When people don’t know what to say, so they come out with all the cliches...
- Not being able to eat certain foods as they made me so sick through chemo...
- Writing a blog for personal use, calling yourself ‘Captain Blue Boob’... never going to face work colleagues ever again lol.
- Discovering new foods, new hobbies and new friends through the shittiest of times 😄😄😄.
- Finding out who are the real friends, and those that only use you when it just suits them...
- Being complimented on looking sexy and fit... must be my sparkling wit and personality as opposed to cancer op body... lol 😘
- Facing death numerous ways and having frequent flyer status at hospital... and telling everybody you are “just fine” 😇.
- After finishing active treatment, everyone expecting you to be ‘the good old you’...
- After finishing active treatment, everyone expecting you to take on the world, have mid life crisis and become a super hero 👩🏻🎤.
- Realising you will never be same person ever again. This is both good and bad btw... 🤔.
- Having absolutely no tolerance for bullshitters, cheats or liars. And being vocal about it. (Chemo / menopausal rage lol) 👍🏻👍🏻👍🏻
- Knowing that it’s ok to be alone, in order to get peace and solitude to sort own head, feelings, ideas out. 💡
- Knowing that sometimes you just want hugs from anybody, and to be told everything will work out... one way or another... 😳.
- Having the longest running game of ‘Give Us A Clue’ when chemo brain kicks in and I forget the words I am trying to say... (frustrating as hell btw!) 🤐.
- Becoming obsessed with blood test result numbers, states of your veins, temperature and bowel movements...🤒.
- Becoming emotional when friends and family raise money for cancer charities in your name 😭.
- When well meaning friends tell you that eating certain foods will cure your cancer... Clearly... That’s why cancer has been eradicated... 😡
- Others telling you how much pain they are in / having a cold... then wincing and saying “oh it’s nothing compared to you!” (Its not a competition you know!)
- Normal life my mind is spider web of exciting possibilities. Chemo brain is like wading through treacle trying to get to bus stop.
- Nobody tells you that some chemo treatments really mess with your brain... paranoia, anxiety and lack clarity on decision making...
- Don’t understand why so many different cancer charities don’t merge to combine resources and research...
- Why do all cancer-related purchases cost so much? Bras, hats, creams... Niche market? Profit-making? Pretty shit way to treat vulnerable people...
- It’s my birthday 😄. Best present... being alive to see it ❤️. New perspective on life - having fun and taking no shit. 😉
- “You look amazing... what diet are you on?”
Me: “Cancer, chemo and double mastectomy”
Awkward silence.
Bad Linz sniggers.... 😄😄😄
Changing tangent once more, I had the absolute pleasure of attending Breast Cancer Care Fashion show, where two of my cancer buddies that I met at the Younger Women Together course back in March, had been selected to be models for the day. They looked sexy and beautiful and amazing as they were strutting their stuff at the Glasgow Hilton ❤️❤️❤️.
I had a great night out, although I have mixed feelings about the relentless pressure to spend money for charity. I bought a couple of charity raffle tickets (£10 and £20 each), but people there clearly either had very deep pockets, or are going to wake up with hangovers and very large credit card bills in the morning... the silent auction items were going for literally thousands of pounds... I don’t think it’s designed for normal folk like me!
Don’t get me wrong... it absolutely is a great cause... but with 2 shows of about 400 people per show, and ticket prices from £75 - £150, that’s a lot of money.... supposedly over the day, they raised over £150k.... but that will be after they pay the costs of the entertainment, the hotel hire and the 4 course meal... 😱.
Anyway, I still had a fantastic night and met some new lovely people too... the fact that Elaine and I sank 4 bottles of wine and a couple of gins between us was an aside. And the male models who were accompanying the BCC models down the catwalk were very funny company after the show as well... “it’s all in the banter” lol. But they were also all about 20...
It was an emotional night though. Very moving stories about what people had come through, what some are still facing, and some very raw and close to the bone statistics. But there was everybody from mid 20’s up to 70’s age modelling, and there were people there who have had varying stages of cancer too. There was tears, there was laughter, there was solidarity. I think it is a once in a lifetime experience though, and not sure I would go back. Or maybe everything is just still a bit too fresh for me.
It was maybe just as well that’s when we went off to Maderia. I think by that point I probably needed a good rest given what the past month had brought. 😳
Anyway, since coming back from holiday, dad has since been back for his regular 6 month screening for bladder cancer and been given all clear, my brother had his genetic testing carried out and been given all clear and I am soon to be returning to my house hopefully, after the builders move on from fixing my ceilings!
Who knows what the next few weeks and months will bring - but rest assured I will deal with it in my own unique happy but full of witty sarcasm way 😀😀😀.
Right at this minute I am off to get rid of all my snotty tissues, stretch out my sore joints, take medication for pain relief and stuff to prevent osteoporosis, and try not to develop black lung from all the horrible gunk I am coughing up lol 😱.
Till next time peeps 😀 xx
