Week 8: Thursday 19 - Wednesday 25 January 2017
So... THIS week I thought I would start with some useful hints and tips for everyone to know how to handle me 😀😀😀.
1. People should not be afraid of the word 'cancer' - it is just an illness which is treatable 😀.
2. It is ok to hug me - I am not a China doll, I will not break. All pain from surgery now gone 😀. Plus I like cuddles lol 👌.
3. I am not a leper - cancer is not contagious lol.
4. It's ok to ask me any questions - if it makes me uncomfortable I will tell you. So far nothing has been taboo 😜.
5. If you are not comfortable with me talking about my cancer, tell me. I never want to become a cancer bore. 😂
6. I have other interests outside of cancer - cancer does not define me. Funnily enough I want to hear all your stories too - especially if I am going to be stuck at home watching tv box sets 😜- I will definitely need a good dose of gossip and scandal!
7. Life and illness is not a competition - I don't need to compete or compare with other people's stories 🤔.
8. I don't really need health, nutrition or fitness advice. That's not me being horrible, it's just that I am doing things under the guidance of my medical team... and I am very compliant, and equally can't take on board multiple avenues of well intended advice - I have been very polite and tried to assimilate everything but sometimes I feel like my head is about to explode 😨!
9. It's great to get a text saying hello and asking how I am.... it's not an intrusion in any way, shape or form... equally don't beat yourself up if you haven't contacted me in a while - I realise everybody is busy 😀😀😀.
10. Please don't take offence if I equally don't text you back immediately if you text me. It may be that I am having a bad day, asleep or out doing something wildly exciting 😀😀😀. Or it may be that I have just forgot lol. Equally don't worry if you see messages / Facebook posts from me at 3am in the morning - it just depends I when I am asleep / awake / have battery power in my phone / iPad etc 😜.
Having got that out of the way, hopefully that helps set the scene for people who are sticking with me, and who I have not managed to offend 😀😀😀.
This week has certainly been busy, and everybody has been lovely yet again.
First thing was my 6-monthly dental check up, (happy coincidence with the timing btw!), where having been told I was about to start chemo, my lovely dentist made absolutely sure that there was nothing loose, decayed or generally bad about my teeth - absolutely clean bill of health, and if I had been a small child I would have been given a badge 😇. (But probably not a lollipop anymore lol.)
Then onto the nurse on the same day, for the dreaded flu and pneumonia vaccinations. Again, she was lovely, but we had to have a discussion about what arm she was going to attack me on (given my post surgery pain and imminent injections to make me radioactive). So we decided both injections should go into the right arm, and there may be a little bruising, but shouldn't be too bad. TURNED OUT SHE LIED!!!!
From about 8pm that night, my arm went like a solid brick and I could not even bear pressure from any clothes on it, and the chances of me getting to sleep turned out to be zero to Feck all. I literally went to be bed and grunted like a zombie in pain all night long. There was tears, snotter (from the flu jab?) and I actually thought that if this was how I reacted to vaccinations, how the hell was I going to survive chemo???
Anyway, getting out of bed and showered on Friday was certainly a trial. Imagine a T-Rex with tiny arms stuck to the sides of its body - that's how good both my arms were!!!
Opening the curtains, getting clothes out the wardrobe, trying to get dressed.... all became issues. So funny, and actually I even wished it could have been caught on camera 😜. Literally with my vaccinated arm I could not lift more than 6 inches away from my body!
Dad came and took me for the nuclear heart test at the Western General in Edinburgh. That sounds more exciting than it turned out to be, but I still found the whole thing fascinating.
Dad was telling me that I will generally start seeing the same people around as I go for treatment, as that had been his experience of going through treatment for his bladder cancer. And actually this indeed turned out to be true. Whilst sitting in the waiting room, we got speaking to a lady who turns out to be under the same surgeon as me, and has seen me at St John's the week previous! I had had no recognition as I think initially I have been so wrapped up in myself, or talking to whoever had accompanied me to whatever appointments, that I never really looked at my fellow jail breakers 😜.
Anyway, despite being initially petrified of going for this test, it actually turned out to be a walk in the park. I went and had one injection, and then a second one 15 mins later - at which point I was radioactive. I then got various electrodes attached to me and then I got put on to a big bed with a clam shell cover over it - my head was left clear, although the straight-jacket-like position was a challenge to stay still - even if it was just for 8 minutes!
(Did feel like I was being put into a big horizontal egg timer actually!)
Anyway... this was all whilst a big camera took pictures of my left ventricle working - basically they want to know what rate my heart pumps at as a baseline before I start chemo 😄. I will get my score next week lol.
There were no real side effects of being radioactive I was disappointed to note. I did not glow green, gain superpowers or indeed manage to irradiate anything. The only thing was that my urine was slightly luminescent for the first couple of hours! 😉
The weekend passed in a blur. Husband said he was in funny mood, so needed a blowout. That mainly consisted of buying many bottles of whisky and getting very drunk. (Him, not me - including the subsequent hangover lol 🤢😄.)
Over the course of a tipsy conversation, he told me his original fear was that I would not actually cope with having cancer, and that I would fall apart. This was based on one occasion in eleven years where I supposedly once cried with a hangover... "this one time, at band camp...."
Without sounding mean... I ended up looking at him like he had two heads and thought, "does he know me at all???". But then I just laughed.
I suppose it was a back handed compliment that he is surprised / impressed how I am coping. Although I don't see it as coping, just as getting on with stuff. Different perspectives I guess. 😀😜
Sunday was a bit of a 'weird-out' day for me. I have made many new friends on the various support groups, and lots of them have absolutely great success stories. But there are a few that don't - and they make facing my own mortality really hard going. One lady contacted me to wish me all the best, even though she herself had a terminal diagnosis. It was lovely but also scared the bejesus out of me.
But as I was sitting alone contemplating stuff, even the thought of not having kids reared its head. Now, for those that know me well, know I love being an auntie. But there is something about that capacity / right being imminently removed that makes me then panic if I have done the right thing, and maybe I should freeze my eggs....
Anyway... what I am trying to say is that Sunday probably ended up being one of those days where I had too much time alone, too much time to think, and I ended up with a little bit of self pity about everything in my life being crap.
Before anyone panics... it turns out that's this is normal. And if I didn't have times like this, then I would just be a robot.
Oh... and to finish off fertility angle... I am good. Sticking with being an auntie 😄.
Although I probably do end up having to apologise again to the few close friends I did text who took a lot of crap off me.... all I will say is that if we stick together through this, then we can get through anything I guess lol.
(And if we don't... well it's been nice knowing you all, thanks for the memories and make sure any dodgy jokes / stories / photos are purged 😉.)
Anyway Monday was working from home whilst I attended the chemo introduction at lunchtime.
I was fully intending on going by myself... it was just an intro day, but then my mum texted me to say she was taking a half day from her work and coming with me for company. Which was a lovely surprise actually. There is definitely something about having a parent there by your side to make you feel ok and able to take on the world 😄😄😄.
(We also both enjoyed the coconut macaroon prior to the appointment and the McDonalds afterwards.... it was almost a regular Girls' day out!!)
Stuff starting to get real now though... was given lots more paperwork, and my own personal chemo diary.
Although pretty sure this is all like a big psychological test of how much complex information you can get at one time and there will be a test at the end (I so win at those, so not worried actually lol) 😄.
Anyway... chemo intro session... basically explaining exactly what I am getting, and how I am going to get it. Also went through some of the more common side effects.
Nothing untoward or unexpected actually, and the good news is that I may actually keep my eyelashes 😄😄😄. (They are slow growing cells apparently - who knew?)
I will likely start losing my hair from about day 10 post chemo 1, and it will definitely all disappear by day 21, so I need to speak to my gorgeous hair dresser about getting it shaved. The chemo nurse has advised that it will feel a bit like a migraine with pins and needles when the hair starts falling out, and most people do actually get it shaved as a personal control/choice thing.
Interestingly I have to be really careful about taking care of my scalp, as the hair follicle shaft is open, and may be prone to infection .... I may be spotty AND bald...!!! 😫.
Anyhow, the nurse then reiterated the warning signs of any infections, and I will now carry an emergency card with me at all times... basically that seems to be a fast pass ticket through A&E if I ever need it! (Like getting free rides at Alton Towers lol.)
Not so sure I liked the suggestion that I need to have a hospital bag packed 'just in case', but I will see this as a good practise from when I was a scout lol.
I was told that when I am getting the chemo, it may feel like being a bit tipsy.... well... I have always been a cheap date 😉... certainly the FEC treatment is like that. The other chemo drugs that I will get during second half of treatment plan ('T') actually do contain enough alcohol to put me over drink/drive limit so I have to be uber careful with that one!!
Other random stuff that I got advised of is that my eyesight may change over course of treatment - so apart from being full of chemicals, I may also act like a blind Mr Magoo... so just warning you all now 😜.
(Don't worry - will not drive my car if I am actually affected!!!)
It was also quite funny - they mentioned boiled sweets are a good thing to counteract chemo taste... so I said that was great as I loved pan drops... so now I can see that I am going to turn into that friendly busybody giving everybody sweeties like the Werther's Original advert!!!!
Overall though, I have to expect to be tired / possibly nauseous after chemo for first week, tired and no immune system for the second week, and then getting back to normal levels of Linz on week 3 before it starts all over again... and repeat x 6.
So doesn't sound bad actually. And I know I have to wait and see about these things... but I remain ever hopeful and positive that I am going to glide gracefully through all of this treatment and become a model at the end of it 😉.
Other random things that are worth pointing out from this week... unlike the mass hysteria media coverage says, burnt toast does not cause cancer. Or at least no more than anything else does. There are also no cancer cure foods. Otherwise cancer as an illness would not exist 😄😄.
There are some really good articles on Cancer Research UK page which go a long way to debunk myths and legends... but as an observer it's quite funny to see what cuts across social media, as opposed to being medically accurate. It's like a bigger version of Donald Trump's 'alternative truths' pmsl 😉.
Freakily, the following article popped up on my twitter feed last night... but it is a good non-medical article which covers my basic points lol:
https://www.theguardian.com/science/blog/2017/jan/24/cancer-treatment-myths-clean-eating-cannabis-homeopathy-alternative
But in relation to my cancer in particular, there is no known reason yet what has caused it. It's not hormonal, it's not overproduction of particular cells, and it's not down to diet, stress or environmental factors.
Don't get me wrong... if I had had a better diet, took more exercise and didn't work crazy hours... would that have helped? No idea. But there is no point looking for cause and effect... in that way lies only madness. 😜😜😜
Instead, I, and everyone around me, (#massivehinttoeveryone), is much better looking forward to all the exciting things I plan to do once I am better in 6 months time 😄.
Final 'real' day in the office on Tuesday. I had really mixed feelings about this... I had kind of prepared as if I was about to go off on holiday... I am absolutely going to miss seeing everyone, and email contact maybe every 3rd week just going to be a bit weird, so I have already made plans to go in for team meetings every third week, although being held in the nearby airy hotel so that I don't pick up germs from the recycled air conditioning 😀😀😀.
But I do have a vision that I could maybe be like Charlie from Charlie's Angels. I WILL be the voice in the box in the corner.... lol 🤗😉😄.
Few other funny things which have happened this week... I started running out of shampoo and conditioner, and there are spares in the bathroom cabinet. But actually - I then realised that I am not going to be needing any for maybe the next 6 months! Silver linings / money saving tips lol.
Also, my LinkedIn article has now been picked up by my professional institute and shared to several thousand of fellow members by email - endorsed by the CMI... maybe this really is fame at last... but genuinely all I wanted to do was to spark a professional debate 😀.
I have also learned the benefits of visual aids. I had been trying to ring my doctors surgery to make my pre-chemo blood appointment and couldn't get through on the phone. So I popped into the surgery carrying my bright red chemo diary, and the receptionist dealing with a line of 5 other patients, almost did a ninja dive and body roll whilst she excused herself to come and deal with me immediately 😄🤗😄!
I also had fun trying to practise yoga as per medical advice to get into a gentle exercise routine prior to starting chemo.... well.... all I can say is, it was terrible. From a 40 minute video I got as far as minute 3. 😂
All the "Sit on a mat and make yourself comfortable. Breathe deeply and feel the release...Allow yourself to let go...." just doesn't work for me. The monotonous voice (I know, I know - it's supposed to be calm and soothing!!!) just not my thing at all. May have to switch to line dancing or Zumba lol. Now just imagine me doing that in my underwear in my lounge 😜evil laugh....
(For the avoidance of doubt I am actually joking - it will be fat lady leggings and a baggy t-shirt!)
Also - other random thing - woman who I had seen at heart trace thing, also showed up at chemo ward as I was leaving. Dad was correct! Either that or I have a stalker... 😀
And finally.... I had a message left on my voicemail on Tuesday from a recruitment company asking if I am interested in applying for a key opportunity they are looking after.... ! (Clearly they have not done the due diligence test on LinkedIn and realised I am off with cancer - given my article published just a few days ago!!!). Anyway I don't know what it is, but I am flattered that I feature on some search engine / database 😀😀😀.
My Irish best friend (we are like sisters separated at birth lol) is due to arrive imminently, and she is coming to spend some time with me as I prepare for chemo, and she is also coming to my wig appointment. I feel some silly selfies and lots of giggles are on the cards 👩🏻🎤👱♀️- as ever, humour and laughter is the way to go.... I am thinking of a grown up Barbie-doll look btw 👌.
Other key things happening in the next week include initial bloods (more needles!), and actually starting chemo. And in between times, telling my nieces and nephew. Oh - and having a blowout night of my own with those close to me.... I don't drink very often, but I may indeed make an exception for a pre-chemo party 🎉💃🍹.
In relation to telling the kids, I will not shy away from using the cancer word. I think it's important to be honest and not scared.
However... am thinking of cross referencing the spotty boob story (my surgery), taking medicine to make me feel better, but shaving my hair off as it's time for yet another new look, and making it funny like a fashion show with my wigs just to prove that nothing scary, we can have a bit of a laugh, and they have to send sweets 😄😄😄.
Will cover all that, and more, in next week's exciting instalment... stay tuned! X
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