Week 16: Thursday 09 March - Wednesday 15 March 2017
Started writing this blog over the weekend so I can actually play catch up and try stick to my planned publication schedule... I have been a bit busy over the last few weeks and have ended up publishing at weekends rather than the Thursday/ Friday I originally planned... absolutely of no relevance or interest to anyone other than me, but I am trying to maintain a little bit of self discipline even through the chemo fog and the dramas in order to keep me on track with my mini goals lol. 😀😀😀
So much has already happened by the time I got to Sunday of this week, that it is good to have time to take stock and reflect on what has been a really great, but full on couple of days. (I write this at 3am in the morning after waking up after 4hrs of good sleep but actually feeling fine lol.)
Thursday (after checking to see that the summer house had survived the night - it had lol), Mum took me over to St John's where I was scheduled to have my Headstrong appointment. This was a one to one service which saw two ladies actually take me through how to care for my balding scalp, to offer counselling on the different changes that were happening in me, and also to give me tips on how to wear different types of head gear. It was a really excellent session actually, with helpful tips about using a baby hairbrush to stimulate my scalp and keep my hair follicles clear, to using aloe gel to smooth my scalp when it gets a bit dry. We also discussed what happens with finger and toe nails with particular chemos, and I can now laugh at last week's worry that my nails were off... whilst that IS likely to happen further down the line, last week's occurrence was actually nothing more than my shellac manicure just peeling away naturally 😀😀😀.
When it came to trying on headgear, I wasn't sure how I would feel about it... the only kind of breakdown I have had during the whole cancer experience was when I was trying to learn to tie a scarf after xmas. I think that's because a wig can be fun and playful, baldness is almost a badge of honour, and my skull caps are just light and convenient. So, actually I was a bit nervous about trying on stuff... but in reality it was a bit of a laugh, and it was also fascinating what you can do with different bits of material!
... It turns out that hat wise, I actually look quite cool in the crochet / woollen caps with the flowers attached to the side, but I don't look so good like a Russian-esque spy with a fur cloche...
... I laughed myself silly with the detachable fringes... but they did make me look different... maybe if I ever pretend to be a secret detective they will be good for a disguise 🕵🏻♀️...
... the stiff cotton scarves, whilst great for scalp coverage for the sun and soaking up sweat, are probably a bit big and bulky for my head to carry off comfortably...
... the silk and chiffon scarves are amazing - I was getting taught how to colour up my life, and turn scarves into flowers using head bands and scrunches 🌺 ...
... and my favourite overall, a jersey material one which is a bit like an elongated skull cap, but comes with matching scrunchie and looks a bit trendy 😛.
And actually I got given some to take away for free! Completely unexpectedly, but this counselling service and gift pack are funded by Bosom Buds of Scotland, and there was so much in my pack, I continue to be overwhelmed with how much support, help and gifts are out there. I really do want to be able to give something back to all the charities when I am finished my treatment, as each wee extra bit is just such a great boost to me as I get along each day...
Honestly, my stash of goodies included 2 scarves, aloe gel for my scalp, aloe lip balm, factor 50 sun cream, hand sanitiser, a ruby quartz bracelet, a nail file, a spa treatment voucher for after chemo / radiotherapy, and so many helpful leaflets that can signpost me to things I might need, contact numbers for people who can help, and also just reminders that I am still alive and not some robot going through a medical process 😀😀😀.
Thursday night I stayed over at mum and dad's, as mornings can still be a bit wobbly for me first thing, and I expected that after a two day seminar, I might be a bit drained on Saturday... so mum's taxi came into being yet again lol.
The joys of staying over is I get spoiled with every need and desire, and I also get to see new types of tv programme that I might not pick up at home, so I got exposed to 'Code Black' and 'Prime Suspect:1973'... more shows I need to put on my watch list lol.
Friday I was all set and packed ready to go, when I was struck with sudden vomiting. No warning, and just water, but I don't know if this was some form of anxiety about going away for a few days, or if it's just chemo. I have also had some extra new side effects again so far this week... can I just say at this point that haemorrhoids are no laughing matter...? Well, technically they ARE the butt of many jokes, but it's a right bugger to spell correctly... 😜😜😜.
Anyway... continued on into attending the seminar, a bit weak kneed, but determined to go regardless.... and I was so glad that I did, on so many levels. (Mum was kind enough to say I could phone at any point if I needed rescued, got bored, got ill... and that she would be my getaway car... but thankfully I did stay the whole course 😀.)
If I start by making the humorous observation that there are always distinct types of conference-goer, and over time, I think I have played each of these characters depending on my mood and maturity on the day and depending on the subject matter... maybe this makes it sound less sarcastic and judgemental lol.... 😀 (or maybe not...)
1. The swot. The one person on the room who has researched everything and every one, and is a bit like Hermione Granger from Harry Potter. Puts up her hand and pronounces things before anyone else even knows there has been a question.
2. The know-it-all. The person on the room who knows more than the expert speaker.
3. The disbeliever. The person who actively disagrees with the expert in the room.
4. The eye-roller. The person where it doesn't matter who is speaking, on what topic, but they breathe heavily and do dramatic eye rolling as if everything is beneath them...
5. The 'all-about-me'. The person who makes every question or subject about themselves, even down to the most personal, confidential or intimate detail.
6. The heckler. The person that shouts out and disrupts just for the fun of it... even (and maybe especially) if they have nothing actually to say.
7. The rude talkers. The people who have side conversations over the main speaker so the audience is distracted and can't actually hear properly.
8. The tutters. The people who tut disapprovingly at the rude talkers, but maybe don't realise they add to the noise pollution.
9. The "excuse-me" brigade. The people who actually try to shush other people politely by asking them to quieten down... this can go one of only two ways.... lol.
10. The bored. The people who stare longingly at clocks, fidget, read their phones... harder to get away with in a small group btw lol.
And of course then there are the genuinely sick people who may just have piles.... 😜 (That would be me on this occasion lol...)
The content of the seminar was truly amazing, inspirational and a complete emotional rollercoaster. Apart from learning about other girls' experiences of this life changing diagnosis, we had the most up to date medical facts, professional dietician and exercise advice, as well as master classes in dealing with menopausal symptoms, laughter as a medicine, dealing with reconstruction and also a sexual therapy class.
(That particular session started with quite an explosive beginning, that I am pretty sure we all felt like giggling and blushing teenagers again 😀😀😀!)
The whole event was full of coping mechanisms, hints and practical tips, and also about being able to challenge my own self prejudices and perceptions...ultimately what came through is that I am NEVER going to the the same person that I was. But that is not a bad thing. 🤗
It does refer to being different on the physical level in relation to current and potential future body scars, but it is also about who I am as a person on an emotional and mental level too. In effect, I have had a brush with my own mortality, and it does make me think about my priorities in life, what is important, what I am prepared to tolerate in my life, and equally what I am not.
Don't get me wrong, I am not going to be making any life changing decisions as I go through active treatment - aside from the fact I have chemo brain at the moment, there is no doubt that I am not able to think completely cogently about stuff, so there will be things to consider after treatment when any chemical or surgical induced changes are complete. You never know, I may become a naked hitchhiker and commune with nature this time next year 😜❤️😀...
Going through the conference itself, I also overcome other wee barriers... I so did not want to present a 'sick' picture of myself... but after an hour sitting overheating and feeling queasy in the conference hall... I allowed myself the luxury of taking my headscarf off and just sitting on the floor against the wall... it was a lot cooler down there, and I stopped feeling dizzy and stopped worrying about what it would look like, and meant I could stop stressing about falling off my chair with a dramatic crash... 😀.
I also just 'went bald' for the entire duration of the 2 days. Now that was clearly fine when I was with the other gorgeous ladies who had been through that themselves... but I was conscious at lunch and dinner that a few members of the public were glancing curiously at me, and there were a few whispered conversations... but actually... if they were either nosy or pitying me... actually I was ok with it, because it's not me that has an issue with being bald 😀.
It also turns out that I was the newest cancer newbie in attendance. I think one lady was still getting radiotherapy, but most people had stopped active treatment and had gone onto the long term drug phase.... but everyone was so lovely to me, and kept checking if I was feeling ok, and making sure I had water and snacks to keep me going throughout the day 😀😀.
The venue was also amazing, but I heartily laughed when I was discovered that I had been put into Room 101... it's like they knew me so well already... 😀😀😀.
Other stories from the course involved a complaint from a gentleman who's bedroom was near the breakout room where we had been talking about the menopause... supposedly we were too noisy for him!!!!
(As an aside, I do wonder if he had known the topic, if he would have dared to come in and complain with a group of 15 menopausal women face to face... hahahahaahahah 😀😀😀😀😀.)
Interestingly, in ways of dealing with the menopause, there are the practical suggestions about cool bedding, layers of clothes, water sprays etc... and it can also be chemically controlled through drugs... but there is also a new thing out about wearing a special magnet in your pants! Some ladies swear by them, so when I get to that stage, you never know... I might be attracting loose change and cutlery as I pass by dinner tables 😱
(The downside is that these magnets are so strong that they can wipe iPads and laptops if they are too close to your tummy... am not sure I fancy trying to explain that to work on a regular basis!!!)
On another note, I was also laughing when one of the ladies had suggested that we could collectively be seen like the Angelica Houston-led witches in the Ronald Dahl film.... you know... the one that has the line... "Put on your vvvvigs" in a strong Bavarian accent... (it is indeed the small things that make me laugh ❤️)
Coming home on Saturday night, I was exhausted. Despite having a couple of snoozes, the two days had been the longest I had been physically been awake for in a long time, and it was emotionally draining.... and still wouldn't have changed it for the world.
Sunday was mainly a chill day - managed a quick coffee catch up for about 90 minutes with my friend Delina, but literally the rest of the day was just a pj and snooze day... having now read the spoon theory it really does make sense.... basically everyone has a set amount of spoons that equate to energy levels each day. Sometimes you can save spoons up to have busy days, but sometimes if you use too many spoons, you don't have enough to keep going the next day. Great analogy... and this is where I need to learn to pace myself ... and I am 😀😀😀. Plus... the feeling of motion sickness was quite prevalent that day, so trying to remain as quiet and still as possible was definitely the order of the day!
Monday was a great day, as mum and I went back down to the new house, and helped my brother in law out by stripping wall paper. I took the smallest room in the house, on the basis I could sit on the toilet seat and not exert myself... (that's a horrible mental picture in itself by the way, so apologies for that!), and mum took the gigantic huge drop hall way... she had finished ALL of that in the time it took me to clear a third of the w.c.... was not impressed with myself. In my defence, it was the type of waterproof plastic paper that only came off in one inch squares top layer only, and then I had to clear the underlining paper... but talk about frustrating and literally getting under my finger nails!! (And not that I am competitive at all about finishing stuff... lol!)
Monday night was an excellent meal out with mum, auntie and cousin - lots of girl talk and laughter, and I felt so exhilarated and awake 😀😀😀, same for Tuesday when I went across to see my book club besties, where Michelle is due to give imminent birth to baby number two, whilst baby number one just took her first steps as we were watching her... amazing day to have fun around friends and babies ❤️❤️❤️. I also managed a fantastic catch up with the lovely Elaine too... I truly am lucky to have great friends 🤗.
Today (Wednesday), back off to the new house to do some mindfulness training (wallpaper stripping), and hopefully that means the entire house will be ready for quick sand down by Geo before he and Angie start painting it over the Easter holidays 🐣😀.
So... another week to look forward to next week... am going for a specialised personal fitness assessment which is appropriate to my stage of going through chemo, planning on a brief visit to work on Friday to catch up with my teams, I have family and friends coming over to stay at different points in the weekend, and then I have bloods on Monday and my next chemo next Wednesday too... so... as ever, onwards and upwards... have fun everyone! Xxx
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