Week 7: Thursday 05 - Wednesday 11 January 2017
So... a big week on many fronts.
Thursday of this week, mum and I dropped dad off to have his colonoscopy at the Western. That was actually the main reason why I had arranged the wig bank appointment for that day, as there was every chance that mum and I may have sat having coffee staring at the hospital walls, worrying about dad 😔.
However, he had a successful procedure, but now has to wait 3 weeks to get the results. Our family are not very good at waiting for results of things, and we are all certainly doing a lot of waiting around at the moment!
Anyway, once we had left dad in the hands of a lovely nurse (who incidentally reminded me of the Asian assassins in 'Kill Bill', and I could not get the theme song out of my head at that point...my mother says I have a very sick mind lol), we headed for a little bit of retail therapy.
The Edinburgh Wig Bank is lovely. It both recycles wigs from previous clients, as well as getting donations of brand new wigs in from various manufacturers. Normally wigs can retail at £200 - £400, but what the wig bank does is sell them for between £20 - £40, with donations from each sale going to both the Maggie's Centre and to local charities.
The wig bank itself was originally established by an Edinburgh lady who had found the whole process of getting a cancer wig to be challenging. So she decided to set up this wig bank and its now got branches around the UK - great piece of work and staffed by people who really understand what it's like to face having to get a wig. Certainly going forward I think this is one area I would maybe quite like to help in, or at least help to promote in any way possible.
Anyway, I wasn't actually sure how I would react to trying on wigs given my mini melt down with the hat / scarf week before, but actually, once I got into it, I was fine 😀.
Some of the wigs were really not attractive - think of Deirdre Barlow in Coronation Street... or a really really bad Rod Stewart... I was laughing when I took them off the mannequin heads.... and some I just could not even look at without doubling over with laughter. I think perhaps, the salon is used to more quiet and decorous clientele 😜.
Anyway having gone in with the intention of getting one wig, I ended up with three. A black sleek bob with a blunt fringe, maybe a bit like Cleopatra; a silver long bob which makes me feel like a Marvel super hero (I just need to wear my pants outside of my tights now...); and finally a pink shaggy bob which is so whacky and out there that I love it. That is definitely going to be my go-to wig as it is just so cheery 😀😀.
It was also funny as I tried on a wig which was close to my actual natural hair colour (mousey brown)... but it looked weird, boring and drab! I hated it. So not me at all lol.
Anyway... all of my wigs were purchased for me by my amazing parents.
(Which had I known in advance I would never have bloody chosen 3!!! 😝)
Mum and I had a really good chat about everything - my health and prospects, her health, my dad's health... stuff that is happening in my brother and sister's lives too... what are the potential things for the future, hopes and fears, work, weather, jokes and stresses... and actually I think that having a child that is sick must be a crappy thing for any parent - regardless of how old they are. 😔
Having cancer is not really just about me. It's also about how my loved ones cope with it all too.
When my dad had bladder cancer, he was the silent, stoical and a glass half empty character. Whereas I really am the polar extreme, talking about it openly, making (inappropriate) jokes, but also potentially being manically active and trying to ensure that everything and everyone around me is 'fine'. Poor mum is the main person who has to cope with the extreme difference between dad and I, and I don't think I appreciated probably how difficult that is for her too.
On the other hand, when dad and I speak, he has the same kind of humour that I do, so when we did pick him up after his procedure, I was quite happy to tease him by asking if he was walking like John Wayne for a reason, or did he just have a butt plug in.... (evil laugh... but he laughed too 😀😀😀)
Anyway, that afternoon, I got mum to re-check my dressing for me from the night before (see previous entry in regards to buying antiseptic wipes lol).
So turns out there may be a teensy bit more seepage. So, without being a drama queen, mum suggested I phoned the hospital, which I dutifully did, but actually they were not unduly concerned. They said it might just be that the skin has not quite knitted together, but if it looked like seepage following day then I was to phone back. (I actually hate making a fuss, and I am worried that the breast nurse will think I am a hypochondriac!)
After I left my parents I actually went to my normal hair appointment where I got my red colour touched up, and we spoke about the merits of shaving my head, and also my lovely hairdresser offered to cut and style wigs further if I needed it. So I left there quite buoyant and definitely still rocking my short, red and spiky 'natural hair' lol.
Oh - random aside - my beanie caps have arrived from Amazon. So aside from the fact that I think I look like a snooker ball when wearing them, they are actually really comfy - and they are great for making sure that for the first time ever, I don't stain the pillowcases after my hair appointment ... more silver linings 😀😀😀.
Anyway, the good news is that on Friday there was no obvious signs of seepage so I had a lazy morning and then went through to Glasgow for a catch up with my 'special person' to chew the fat about the ups and downs both in my life and theirs. (Reference to Greys Anatomy for the ill informed 😀)
The fact that alcohol was consumed and there was bluntness, humour and planning for the future made it quite an evening! (But blood oaths, secret societies and sisterhood of the travelling pants stuff, forbids me from revealing any more at this stage lol - no doubt it will all feature in future blogs lol.)
It's actually only on thinking back I have realised I have only been drinking shakes made by my new nutribullet, as opposed to eating solid food for a number of days. (Btw other gadgets and brands ARE available lol, this is not a sponsored endorsement!).
That's not a bad thing, as actually I make a pint at a time, and I am not actually hungry during the day. Maybe this detoxing thing and healthier food intake might actually be ok for me! I also think that maybe after all the xmas turkey, my body probably just screaming out for something simple lol.
My current smoothie mix consists of lettuce, cucumber, mint, grapes, kiwi and seed mix. Actually quite pleasant depending on how sludgy I make it 😀😀😀. But hoping that generally my skin will be better, I will start to lose belly (ok... all body) fat, and that overall I have more effective digestive system 😜.
Saturday was a bit of sad day. Attended my friend's mum funeral. Wished I could have done more to support her. Sitting beside some of the people I used to work with, who know about my current illness, I did experience some more of people's 'oops moments'. Ranging from sympathetic head tilt, through to stories of their family members dying of cancer... (!)
Anyway, going to funerals always make me consider my own mortality, and actually in my other blog, I rediscovered a story I wrote 3 years ago which was about me planning my own funeral in humorous overtones. I think maybe I will re-post it just to show people that it is ok to look on the bright side of life, even about death... jings, this could be turned into a Monty Python sketch.... oh wait, they already did lol. 😀😀
I am still getting pain from the surgery, but now I don't know if it's tingly sensations which means it's the nerve endings coming back to life after surgery, or wound pain when I maybe over stretch myself.
Again, from an observational point of view, the tumour site feels hard and lumpy, and not dissimilar to how it felt when it had the tumour in it... and feels bruised. It also has shooting pins and needles occasionally which are not particularly pleasant.
My lymph node incision is actually below the main part of my armpit.... that also feel lumpy but not particularly sore in itself. (When I lift my arm up and down, I feel like I can even make the scar go from straight faced to a smile 😐 - 😀)
My actual armpit appears to have gone completely numb. Too much oversharing, but I went to shave under my arms the other day as an experiment and I literally have NO feeling in my armpit. Now whilst this is quite funny and I could probably do tricks like "stick a pin in it and I bet I don't feel it", I am actually a tad concerned that may make it dangerous in case I do cut myself and leave myself open to infection... so will just have to return to waxing instead I think lol.
The top part of my arm just literally feels like someone has given me a dead arm. And that has a kind of dull ache to it.
However, it doesn't help that I have not really been keeping on top of my painkiller schedule.... but I do have fears about constipation again. But, several sources have now given me boxes of laxative powders, so I guess I just need to get into a regular routine - all puns intended lol.
The other issue I am still having is proper cold and hot sweats. I can't seem to control these and they are a nightmare! At first I thought they were caused by the cancer itself... and they probably were... but now it appears that the surgery may also have triggered more, as can some of the painkillers!
So basically I am fecked with my internal temperature at the moment. Harrumph. Just as well I have many sets of pjs and a good washing machine 😀.
Anyway I have spent time this week doing more research, and have actually signed up to go to a seminar in March for Younger Women with Breast Cancer. Effectively I meet the criteria as I am under 45, and there will discussion groups and talks, and potentially some intimate discussions with complete strangers.
When I looked into this further, it turns out I am in an elite and select bunch. Out of all UK breast cancer cases a year, only 5000 are diagnosed per year in women under 50. That's quite a low percentage so actually it does make me want to understand more about what I have, and what I can do about it.
And actually writing this blog and then looking through various LinkedIn furore recently about women who post inappropriate photos of themselves on a professional networking site (other people's views, not mine), I now feel compelled to write an article for LinkedIn myself.
I am thinking that I could look at what happens when personal and professional worlds collide, and actually tackling the stigma of how organisations deal with people who have cancer. All the articles on LinkedIn are about boosting profits, great leadership, maximising customer contact and developing visionary strategies... but I have never seen anything across there, or my professional institute about the culture / stigma / practices in dealing with someone with cancer (or other medium - long term health issue). So that may be my next little project in the next few weeks 😀😀😀.
Anyway... was actually hoping that I could get right through to Wednesday before I had anything else to write about, but as I have posted in FaceBoob updates on Sunday evening, 'wonky tit' has now transformed into 'leaky tit'...
I am absolutely fine, but my poor book club besties definitely got more than they bargained for when they ended up putting on an emergency dressing for me... (I should now start compiling a tally list of the number of people seeing my naked boobs!). In essence, I had taken off the final dressing on Sunday morning in order to make sure that the wound had a chance to breathe before I saw the surgeon on Wednesday.
As Friday and Saturday had looked ok, I didn't really think anything of it, and when I took the dressing off, there were a couple of bigger spots of pinkish / yellowish runny fluid on the dressing itself. All fine, it's like any scrape or cut. So I showered and put on one of the soft bras, and did things like nip out to get lunch stuff for book club coming over... absolutely normal stuff.
Well, over the course of catching up at book club, one of my friends had asked me about potential wound infection given what I had written in last week's blog. She herself had had infected wounds from an op previous, so knew what to look for. (We are very close, so I didn't mind showing naked boob... she is also my beautician, and seen all parts of me lol.)
Anyways... many hours after lunch (thankfully), I then did ask her to take a look, actually thinking that that would allay any of her concerns.
Well. I actually only got as far as lifting my t-shirt when I can only describe the feeling of gushing water came from my wound and ran down my tummy. (Probably was nothing more than a little dribble, but that's not what it felt like in my mind lol). At which point, both my friends kind of got startled and then jumped to get tissues to start mopping me up. (Honestly, I really think that through this whole cancer thing, my friendships with everyone may be tested at this rate lol!)
So, I ended up phoning NHS24 who then asked me to go to out of hours surgery at St John's in 2hrs time. Which was fine, and my friends jumped in the car to Tesco to go get me microporous tape. (I used to have literally everything in a well stocked first aid box - but I have clearly have not remembered to replenish - note for next shopping trip lol).
Anyway, they got me a large self adhesive dressing to at least keep me dry until my appointment....
So having got to the hospital and actually finding the out of hours surgery department, I saw a lovely Doctor, who firstly expressed surprise about the blue dye on my boob... she had never seen someone who is so close to surgery recovery to see the effects of the dye before lol. Always glad I can be of medical assistance 😀.
However, she then sought to reassure me that the clear fluid is normal from wounds, it is called serous fluid, and as I apparently may have previously burst a stitch and left a convenient drainage hole, she said there was no need for new stitches (thank feck as the last ones were done under general anaesthetic, and I REALLY don't like needles!!!)
Another positive is that had I not had a convenient drainage hole, the nurse may very well have had to draw off the excess fluid with a very big needle on Wednesday... so small mercies and silver linings indeed! 😀😀😀
Just to be on safe side the doc gave me antibiotics.... and put on a LOT of wound dressings.
Supposedly once the leakage starts oozing (love that word... so descriptive lol), it may become a little messy and moist 😜. She gave me 2 other ones away with me, a big one and a little one, which was all that A&E could spare me that night.
Got all the way through to Tuesday before I decided to go to my own medical practise to get new dressings.
I had a bit of squeamish moment at lunchtime that day, when I decided that I should really take off the gigantic boob covering dressing which the hospital had put on me.
However, when I took it off, I don't know if it was because I was squeamish, or whether it's because actually quite a lot of yucky stuff that came out, but I had to go lie down for 30 mins as I had that whole grey/sweaty/hot/cold feeling come over me.
I then dragged myself into the shower and chided myself for being so ridiculous. Heavens above I used to be a qualified first aider and could put stitches in people!!!
Anyway... putting on the new dressing given to me by the hospital, it turns out it was really too small for my wound... so I improvised and put it on like a diamond shape in order to cover the wound as much as possible. However also discovered that this much effort absolutely drains my energy - so ended up having to sit still for another hour to let queasiness subside. This is going to be pants if I keep feeling like this dealing with my dressings 😢.
Decided to walk up to the doctors with one of friends, and went in to ask the nurses if I could get some dressings. Well, to say that I was treated with absolute disdain is an understatement. They were furious that the hospital had told me "just to pop in to my local surgery to pick up dressings".... oops 😢.
I did actually apologise and said I wasn't aware that I should have made an appointment, and I then clearly irritated them when I didn't know what dressings I had on, so whilst I was being spoken to like a naughty child, the nurse then said I had to follow her so she check the dressing for herself.
Anyway once I showed her my wound and explained it was my tumour site, she did at least change her tune, but still asked exactly how many I needed, and when I was going back the the hospital... (Don't get me wrong, I know they work out of different budgets, but I was only asking for a few dressings seeing as I had pink fluid leaking out of me!)
When she asked me when my surgery was and I had said just before xmas, she said how terrible that was, and then went onto say that horrible things always happens in threes.... and then she caught herself and apologised... (clearly because operation and leaky boob only make two maybe...?)
Anyway.... I got 2 dressings. One for Tuesday evening... and one for Wednesday morning before I go to the hospital lol.
On the way home, my GP actually phoned me to see how I was doing. This is the GP who originally it was convinced it was a cyst lol. Anyway she is lovely, and I explained what had happened so far (she wasn't aware of my trip to hospital on Sunday yet.... computers not updated lol).
Interestingly, when I told her all that the surgeon had told me from diagnosis day, she actually expressed surprise that I was told so much. Maybe it was because I did ask so many questions lol. Or maybe surgeons take an assessment of how much information individual patients can take in?
I then went on to tell her what I was expecting from my appointment on the following day...
I then asked her what the hospital had actually told her - basically all she had had was the letter that I had handed in from the hospital which advised I had lump removal and lymph node dissection. Which I suppose is technically correct, but I kind of think that this is where the separation of hospitals vs local surgeries is going to become apparent. Which might be a bit awkward when I need to go get regular blood tests taken, as I am relying on them to actually speak to each other!
Either way, she asked me to update her on what was then discussed the following day. No pressure then lol.
On the upside, I have been keeping busy this week.... I have been helping different people with cv's, preparing difficult questions for a friend's business pitch, and I have even downloaded jigsaws for when my brain just needs to do something but I can't concentrate too much.
I have also continued my research to be absolutely prepared for all eventualities... but will only deal in facts of any diagnoses. Best way to be 😀😀😀.
Anyway, I finish this week's blog off in the morning before I go to my appointment at noon. It's a good distraction. Especially as the mains water has been turned off, and I am trying not to think about what happens when I need to go to the toilet lol.
Just as well mum is on her way over - a great excuse to go for early cake. And toilet. 😀😀😀
Write more later!
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