Friday 23 December 2016

Week 4: Research, ponderings and being morbidly curious...

Week 4: Friday 16 - Thursday 22 December 2016

So after that first week of telling everyone about my diagnosis, I carried out loads of research on what I had and possibilities to come.

This is partly my own human nature about gathering facts and making assessments, but also it was quite good to have chats with friends, asking questions and also sharing anecdotes.

So I looked at what cancer actually is, how it grows, growth rates, where it can spread to, different treatment options, potential side effects, and lots of success stories.

The whole thing is fascinating - genuinely.

For anyone really interested, the Macmillan website, Cancer Research U.K. website and Breast Cancer Care website are all really good.

For instance, there is no known cause of cancer.  There may be certain risk factors, and in some cases, there may be genetic links, but there is no definitive 'thing' which causes cancer.

Also, I am hormone receptor negative - which means I can't be given hormone therapy to control the spread of cancerous cells.  But that doesn't mean it's a bad thing - it just means that I have a different treatment path from some other people.

I also didn't appreciate that there were so many different types of breast cancer too!  I still don't know which one I have until I see the surgeon after my surgery... but there is quite a long list, and obviously it all depends on if it has spread elsewhere too.

Cancerous cells themselves I imagine are like little evil robots, which float around your system and settle somewhere that takes their fancy.  Once there, they start dividing.  One piece of research that I came across said that the cell division rate can be anything from cell division every 25 days, through to maybe a rate of division of maybe 75-100 days.    This was in an article where it says that many patients ask how long they have had tumours in them.... the scary thing is, is that some tumours can be in a person's body between 2 -5 years before they are big enough to be felt!

(Random fact from research article - supposedly it takes between 28 and 30 divisions (or doubling in size) for the tumour to be felt in an exam - whether this is supported by other medical evidence I have yet to ascertain though!)

The tumours themselves grow from these cells.  How cancer can spread is either through travelling through the blood stream , through the lymph system, or by growing so large that it breaks through whatever sac / boundary it is contained in I.e. the basement membrane. (In laymens terms - this is how I understand it, but realise there is a whole medical encyclopaedia for this which I don't understand!)

I also realise that the pain in my breast may actually be caused by the tumour basically pressing on something like a nerve ending, or maybe it has just outgrown the space it was growing in... again... will know more after my surgery.

Looking at what happens if it has spread, clearly that's a discussion to be had with my surgeon.  It may be that I may need a full mastectomy.  Or if it has spread elsewhere, the key places where breast cancer can end up in the lymph nodes, the bones, the liver or the lungs.  (This is based on known trends, and not me being doom and gloom!). Equally I am pretty sure because the little bastard cells can travel, technically they may end up anywhere.  However... the whole point of treatment nowadays is about early capture and eradication of these cells 😀.  Anyway I am hoping for the best and that everything will be removed at surgery followed by chemo and radio therapy.

Looking at the side effects of my proposed treatment... am getting used to the thought of losing my hair.  I still don't like the thought, and it can still make me teary, but I have started looking at wigs, hats and scarves online to try and be proactive. I don't think I can be brave enough to get my head shaved for charity, as I am pretty sure I may cry all the way through it, but at least this way I can take back some control.  I know myself well enough to know that I will deal less well with clumps of hair coming out in the shower.

Perversely, I hadn't given any thought to the fact that I will lose ALL of my hair.  Aside from not having to worry about waxing for a wee while, I am almost perversely curious to see what I look like with no eyebrows or eyelashes!  All I can think of is Christina Yang on her wedding day in 'Grey's Anatomy'!

Some other effects I already know about from dad's experience - the tiredness, the sickness, the constipation, the radiation burns.... but I also didn't appreciate that actually my chemo is likely to bring on the menopause.

Aside from the questions that friends asked about potential for freezing my eggs, and if I want kids.... I hadn't actually ever thought about the menopause.  I am 38 and sometimes make jokes about it.... but always seemed one of those far off things.

At this rate I might be wonky boobed with a moustache 😜😂.  But not going to dwell on that.... there are tablets for everything and I can't stress about what I can't control.

Also, dad was telling me that when he was in having chemo, one poor lady appeared to have some kind of epilepsy attack, and on another occasion there was a chap who had a panic attack as he thought he was unable to swallow.  But these are things that are linked to 'chemo fog' - it can attack your your brain in funny ways - but dad did reassure me that medical teams are constantly walking the floor monitoring for any changes to individuals getting the treatment.  And who knows what underlying conditions these people may also have had.

So... as with many things I am finding out along the way, I just need to wait and see what my own particular story / journey is going to look like.  I may be one of these people who breeze through everything and come out looking like some kind of refreshed supermodel.... or I may not.  Either way - I reckon I will be a stronger person  though.

Whilst I would never wish this on anyone, I am seeing this as an opportunity to take stock and try new things.  As indeed.... you only live once 😀😀😀.

I am however uber conscious that this continues to be hard on family and friends, but the only way I can get through this is by dealing with it in my own way.  I am not morbid, and I need to have a laugh.  I will write lots of rubbish... but you don't have to read it.

There will still be times when I go quiet or just need to sleep.  Or sometimes I might just be a cancer comic, or a cancer bore.  None of these are cries for attention... just me being me.

Anyway... next stage is surgery.  Where my biggest fear is actually being sick from the anaesthetic... go figure lol.

Thursday 22 December 2016

Weeks 3/4: Dealing with the diagnosis...

Cancer Blog 4

Weeks 3 and 4: Friday 09 - Thursday 22 December 2016

Ok, this one covers a fortnight as opposed to a week.

But that's because it covers how I dealt with my diagnosis, or more to the point, how I dealt with how other people dealt with my diagnosis.  If you are a cancer patient yourself, all of this is probably quite familiar to you.

However, maybe one of my ways of coping really is to act as a counsellor to others.

Either way, I know everyone has different coping mechanisms, but I have had to point out to some people that it is actually me that is going to be going through the shitty treatment, and not them themselves. 😀

I didn't sleep very much that night I first got my diagnosis.  That's partly due to the number of texts flooding in, but I was also processing a lot of information.

I am a practical person - so I had already thought about what would happen with work, what sick pay I would be entitled to, how I would manage financially, we should cancel the holiday planned for June as that was going to be in the middle of my chemo cycle, made a mental note to check my income protection cover (we had been told at signup years ago that some breast cancers are not covered as they are so common nowadays), and also just about all the medical information I had been given.

I remember watching Harry Potter at 3am, and then I decided to create a Closed Group on Facebook at 5am.

My rationale for this was that this would be a quick and easy way to keep those nearest and dearest to me in the loop, without having to send lots of texts, invariably forget people, and also making sure I was consistent and honest with all my answers - I also needed to let people know that it was ok to be curious about what having cancer really meant, there are some people who want to know everything, and there are some people who would rather not know anything at all.

Anyway - I started off the group by saying just that, and that people could either comment, keep a quiet watching brief, or indeed remove themselves from the group if they were not comfortable reading stuff about my updates.

Of course, every group needs a name, and I decided that after a conversation with my sister, I would call it Linz' FaceBoob Updates. This went alongside my profile pic of the Smurfettes, as that linked to my sense of humour about getting blue dye put in me....

Anyway, the group was generally well received, and I will use that to give regular updates on the key stages I am going through.  This was to avoid me putting it out across my generic Facebook profile, as like many people, I have close friends and then I have acquaintances who probably don't really need to or want to know I have cancer.

Which is a bit perverse, as I am writing this diary which I will publish online, but this is still for me to write up my experiences, and if I share it with select people, that's ok.  It will be open to the big ethernet of spies, aliens and nosy people, but I am ok with that too.

I am not looking for fame or glory, but equally if there are other people who are going through the same kind of journey that I am going through, then maybe there is some comfort in knowing that you are not alone.  And it's ok to both share the happy thoughts, as well as being the place to really write down the nasty crap that we will have to go through.

Anyway, over this period, this first thing I did was go to work the following day.  A lot of people did not get this, and maybe thought I should have been on my knees crying or praying, or maybe just cleaning the house to do something cathartic.

However, part of my thinking was that I didn't feel ill, I had my diagnosis now, and actually nothing was going to be happening for another fortnight, so why waste annual leave?  Also...  that by telling as many people as possible, as quickly as possible, it would get it over with, and it would become last week's news very quickly. Plus I had many Christmas social events I wanted to attend over that time period 😀😀😀.

Also, I didn't want my sudden disappearance for maybe up to 6 months to have any sinister connotations or slates on my professional credibility!

So telling my own teams was fine - they were all great.  Some other people had decided to tell their own teams in advance of me telling them - which is also fine, especially once I gave my permission, although I was surprised by the range of emotions exhibited by everyone.  I had also not realised my boss was on holiday when I texted him - and to this day I feel bad as I guess I may have given him a shock...  kind of like 'I have cancer and you won't see me for 6 months...'

Some of the funny moments about telling everyone in my life about my diagnosis occurred when people inadvertently go into speaking about "making tits of themselves" or "making a boob of things".... each and every time, they clap their hands over their mouths, apologise profusely and be left floundering.... whereas I would just laugh and say that it was ok, and there would always be moments like this ... it's like asking people not to think of a purple elephant... they automatically do! 😀

Other people either started crying, swore a lot, said it wasn't fair, said prayers for me, and then there were the ones who go straight into the practical mode of offering help,  keeping me company, helping with walking the dogs, taking me to the hospital, and yet other people who did all of the above plus more!

Then there are also people who really want to know the whole details of how I found it, what happened since then, what the medical stuff was... and I get that, as I am like that.  It's partly about being able to understand things and getting it in your own head to prepare yourself.  In my case it's also because I am sick, twisted, perverted and nosey... but I can't be perfect all of the time lol.

Then there are yet more people who are cancer survivors, who want to share their stories with me too.  And that's great.  It really is.  Because for every story that means people survive. 😀😀😀. The only thing is, is that at the moment, I am probably still a bit overwhelmed to take on everyone's feedback so I am trying not to cause offence by saying I will get round to speaking to everyone in due course.

The only thing I actually probably felt after the diagnosis was relief.  I had had breast tenderness for a few weeks prior to finding the lump - and I had actually joked with friends that I hoped I was not pregnant as I love being an auntie, but definitely did not want to be a mummy... In fact I so did want to be pregnant, I would rather have breast cancer....

Oh the irony.

Oh well, maybe if I start making jokes about winning the lottery, maybe that will come true one of these days too 😀.

Anyway, the reason I felt relief is that I started taking painkillers.  That sounds daft, but I never take any kind of drugs if I can help it.  I hate popping pills, so all the time I had sore boobs, I just lived with it.  With hindsight, my constant tiredness, headaches and general problems with concentration were probably just down to waves of sheer pain going through my body.  (So comforting to anyone who was in the car when i was driving and occasionally maybe kerbed my car lol)

The really stupid thing is that for the 8 weeks prior to diagnosis I had had a terrible cold, and for the middle 4 weeks I had been eating masses of cold and flu tablets, as well as then getting antibiotics for a sinus / chest infection!

Along the way, many people have said some very nice things about me... that I am strong, inspirational and a real joy to behold about how I am dealing with my diagnosis .... (clearly these people have never seen me when I am in a major strop and being a bitch from hell)... however, I genuinely don't think that I am anything super at all.

What I am is practical and pragmatic.  I have an illness.  It's going to get treated. I will get back to normal life in due course.  (Whatever normal actually ever means lol!)

There is no point in getting upset about stuff.  I can't stop it happening, therefore better to embrace it and make the most of it, and come out the other side smiling, even if a little battle scarred.

I make people laugh by telling them I will probably be running the support groups in 6 months time, asking for feedback and flowcharting the whole thing on the wall using post it notes 😀.  But it's true, I probably will lol.

I suppose I am not really sure how life changing having this cancer will really be.  I am pretty sure that time off work and being at home will cause me to reflect on what it is I really want from life, and I already know that it has fundamentally changed my relationship with some people.  That's not necessarily a bad thing, I think this is going to be a great time for personal growth.  (As opposed to tumour growth - that would be pretty crap at this stage!)

I have tried to warn people that I will not always be happy go lucky.  There will be times when I may be downright rude to people if I am pushed too far, or I am feeling like crap.  There will also be times when I don't want to see or speak to anyone, and just hide in my own little shell.  That does not mean that I am sinking into depression or anything like that - it just means that I may physically have no energy to do anything... even pick up my phone. (Shock horror - I can't ever imagine that given I am wedded to my phone, but I have been warned in advance by others, so just sharing here to make sure everyone knows and I don't offend anyone!)

Perversely, the fortnight between diagnosis and surgery had been one of the busiest times I have ever had socially.... but I kept all planned social engagements, and even managed to squeeze in a few extra along the way too!  Had great xmas party nights out, although I have to say after a fortnight of partying, I am now somewhat scared to look at my credit card bill.... 😜

My sense of humour has also taken a new turn towards the dark side.  (It was already there but think this has ratcheted up a few notches now!)

When my sister was up visiting, my mum and the 2 of us went to Dobbies for breakfast.  As usual there was the charity boxes at the till.  This time they were for one of the Cancer Trusts... at which point I turned to mum and my sister and said "if they are collecting at the door, I am going to say no thanks, I already have it...".

At which point I think they both just gasped with shock... whereas I laughed.... (as did my dad when I told him later - but he has just survived bladder cancer and completely gets my humour!)

The other thing which was slightly skewed humour wise.... I have lots of people praying for me.  Which is amazing and lovely... and although not a practicing catholic anymore, does actually still mean something to me.  However, when I heard that my granddad had got the local priest to say a mass for me, I think I maybe went a little hysterical and joked that maybe now I would become a virgin again.... at which point my parents advised me that clearly I had been reading the wrong books again....

Generally I am coping though.  Sometimes with people telling me now strong I am, I feel a bit of pressure to always be ok... but then I also have some very good friends who have equally said that it's ok to cry and not to be a martyr.  Which I do really appreciate.

But I also feel that telling people I have cancer is like saying Lord Voldemort's name in Harry Potter... the more you say it, the less scary it becomes. In fact, I now play the cancer name check so many times, it is funny.

- I want an iPad to take into hospital... why?  Because I have cancer.
- I can't be bothered going shopping... why?  Because I have cancer.
- I fancy a wee gin with dinner... why? Because I have cancer. 😀
- I want to get served peeled grapes and fanned like a goddess ... why? Because I have cancer... (you get the gist lol)

Don't get me wrong... there have been times when suddenly my eyes start leaking, and I wonder why as I was not thinking about having cancer at that point in time.  But just going to roll with it, as I know this is what happens.

Couple of big things I have to consider - telling my nieces and nephew (they are not stupid and it will be obvious when I lose my hair); trying to work out how feasible it will be to work when I am going through chemo (mixed views from multiple sources); and also, having got my diagnosis, I did some further research.  Some of the stuff is scary, but going to see what happens after surgery.  I will write them down in later blogs but just realised how long this one currently stands!

Anyway... to end on positive notes... I plan to be around for the next 40 years, surgeon has a positive outlook, I am going to completely rock my new image over the next 6 - 12 months, I am going to save a shed load on my lease car mileage and money on diesel by not going to work, and I get to see much more of friends and family when I am off.  Along the way I should get new diet and exercise regime, and I will get to spend spring and summer in my garden chillaxing 😀😀😀.

Just think of the number of stories and blogs I can write then.... god help us all!



Thursday 8 December 2016

Week 3: Getting the diagnosis...

Week 3: Thursday 08 - Thursday 15 December 2016

So my appointment was at 10.30am.  Apparently this seems to be a crap time to have an appointment as there are literally no parking spaces at St Johns.  Mum circled a few times before we gave up and parked at the Howden Centre and walked through.

In arriving at OPD 4, I was sitting scuffing my feet like a small child.  I kind of felt awkward having both mum and husband with me - talk about overkill.  Most people only take one person at most.  But I didn't want to have to choose between them.

Anyway, when the surgeon called me in, I walked forward and joked that I had brought a posse with me.  He said that was perfectly ok... and at that point I knew I was going to be told something I might not like.
(Not that the surgeon was in any way an ogre... I just got a feeling!)

Anyhow, we sat down and the surgeon started off by recalling the various tests that I had had, and then went onto say that the biopsy had confirmed that the tumour was cancerous, but that there was a plan to treat it.

At this point, I was actually ok.  I just went into practical mode, and my previous research actually paid off.  I think my mum was also practical but trying to be stoical, but my husband looked quite frankly stunned and grey.

I asked what that meant in terms of treatment plan, timescales, what kind of cancer, and my mum asked how big the tumour was.

So, we got walked through the fact that it was a Grade 3 tumour, which means it is abnormal (I laughed at this point, as I can't even have normal cancer lol).  However what that actually means is that tumours are graded 1 as normal cells and slow growing, grade 2 is moderate, and grade 3 is abnormal cells which are fast growing.

I got told not to get that mixed up with the cancer staging, and my cancer was caught very much as at an early stage.  (So if anyone looking it up it is stage 0 or 1, I think.)

In terms of treatment, the first thing would be surgery to remove the tumour.  Then chemo, and then radiotherapy.  He pointed out at this point that I am young, strong, fit and healthy, and he would still like me to be around in 40 years... and they take a balance of what treatment levels they could give me to give better sustained quality of life.  So in essence, because I am young, fit and healthy, the trade off is that they can give me aggressive treatment in the short term for longer term benefit.  (The sub text also being that I am probably going to have a really shitty 6 months!!!)

When asking about surgery I asked if it would be a mastectomy, and he said no, it would be a lumpectomy and we would wait and see what results showed.  The lumpectomy is about breast conserving surgery, and has the same success with radio therapy, as a full mastectomy when it comes to removing cancerous cells.

At which point I nodded as that is a good thing.  I had already jumped ahead to needing a double mastectomy and breast reconstruction to perhaps getting a perky D-cup, with fat used from my stomach to create a barbie doll look without the need for diet or exercise!  (Wishful thinking on my part I know lol.... but silver linings 😀)

Anyway the surgeon did point out that he was hoping to get everything out without need for invasive surgery, and that there may only be a small dent underneath my breast once he was finished.  I did explain that my sister had already adopted the nickname of 'wonky tit' for me.... but in all seriousness I was not sure how I would cope with being lopsided.  He did say that we can always address any cosmetic issues at a later date.

He then explained that the operation would consist of taking out the tumour and injecting blue radioactive dye into me.  This was to allow the identification of the sentinel lymph node, which was also going to be removed for testing.

Basically the tests on both would be looking at if all the cancerous cells had been removed, and also if it had spread, or indeed if it had the risk of spreading.  (In my head I picture the cancerous cells as sparring robots or Artificial Intelligence bots who can create their own wee worlds in which to live in....  but I do have quite a vivid and overactive imagination - you should see my other blogs!)

Anyway, my results would be available after 3 weeks due to xmas holidays, and at that point, he would be able to tell me more about the cancer itself, and if he had managed to remove everything, including a healthy margin.  If not, I may require a further surgery.

He also explained that it was just a day procedure, and that the following day I may still be a little groggy, but the days after that I may just feel a little bruised under my armpit and I would be given exercises to do to make sure that it didn't stiffen up.

He also went on to explain that the initial biopsy taken the week previous was also able to identify that my cancer was both oestrogen receptor-negative, and progesterone receptor-negative.  This basically means that I cannot be given drugs like Tamoxifen to control the cancer - the only thing that will work is to cut the cancer out and to then have chemo and radio therapy.   Part of the testing on the tumour after surgery was to see if I was HER2 positive - something else which may be controlled by drugs but I have to wait and see on that score.

I actually took all of this in my stride - as I said - looking up all possible scenarios and preparing myself mentally had really helped.  However, I did have one moment of real distress.  That was when I asked about potential hair loss.  And I was gently told there would be no 'if'.  And it would be the chemo.  And actually, between the first treatment and the second one three weeks later, I should expect to have lost all my hair.

I mean.  I am not even a vain person.  I don't actually care what I look like normally.  However there is something about being bald and wearing scarves which really screams out that I have cancer.  That's the bit that's unfair. 😢

The nurse did tell me about the use of the cool cap - which basically works by freezing the scalp to stop the chemo working on the hair roots... however I also appreciated her honesty when she said that it worked best on people with thick hair, who sometimes still lose clumps.  I have thin, fine and delicate hair, so knew at that point that it was never really going to work for me.

I tried again to look on the positive side of this, and said that at least the treatment may help kickstart my new year diet.  Unfortunately... that would appear not to be the case either. 😢.

Supposedly I will also be on steroids, which will make me put ON weight.  "Jings, I can't even catch a break on that!", I exclaimed.

So... instead, I have to give up my gym membership as I can't go anywhere open plan for the germs (I will have no immune system going through chemo), and I can't go swimming as I may be radioactive, but I have to eat healthily and make sure I have regular programme of exercise.

No more thinking I will be a lady that lunches, can eat cream cakes galore and the chemo will help me shift 2 stone in weight then!!!

Anyway... pulling myself back into practical mode, I then asked what the timescales were for everything.  So, it was going to be surgery first, then allowing for no further surgery requirements after that, I would start chemo after 6 weeks (1 day every 3 weeks for 6 cycles = 18 weeks in total), and then radiotherapy every week day for 4 weeks.

In asking about date for surgery, the surgeon flicked open his diary and asked... "what about 23rd December?"

At this point I started laughing.  Honestly.  The reason being is that particular week, my mum was going for a liver scan on the Monday, my dad was going for a colonoscopy on the Wednesday, and my niece was having dental surgery on the Friday!  (My family really are not the healthiest at the moment, and clearly we have lost whatever rabbits foot or four leaf clover which had covered us in previous years!)

Anyway, of course I said that was fine, and he added me to the end of what seemed a very long list of names in his diary.  He explained that as I was the youngest, fittest, healthiest patient he had, I would probably be taken last on the day surgery, but I still needed to check in to the hospital at 7.30am that day.

So that was more or less it on diagnosis day.  I had a further chat with the breast nurse after leaving the surgeon's office - they also needed to take my pre-op bloods to make sure I was fit for the surgery.... thankfully although I despise needles (bit of an issue given what's to come!), I apparently have good veins and they got all the blood required.

Upon leaving hospital I was still ok, but mum and husband I think were in shock.  We decided to go to Dobbies for coffee and cake as yet again I decided I was hungry lol.

Trying to compose a meaningful text to friends and loved ones who were awaiting my news was really difficult.  How do you tell people you have cancer?

I am conscious that even at the best of times, texts are terrible things to read cold - you can't put true sense of feeling into them, you can't be there to read reactions, or to put people at ease, or to reassure them that you are fine...

Anyway... what I ended up with was the following:  (with some tweaks for some people like my boss lol)

"Hiya... just out.
Got breast cancer but caught early.

Operation scheduled for 23rd December as day op.  Chemo and radiotherapy afterwards.

All signs positive as I am young and fit (and bolshy lol)

I am ok... out with mum and dave for coffee and cake.

Seeing this as free holiday from work.

So hopefully all done and dusted within 6 months and in time to go to Madeira hopefully 😄.

But I am doing ok.  Research in advance helped! Xx"


After we were done there, Mum suggested that Dave and I went into town for the afternoon and maybe had a drink - she would take the dogs to her house and bring them back later.  I actually wasn't fussed as I am not a big drinker at the best of times, but she did point out that actually Dave may need to do this to help him through with dealing with stuff.

Anyway, so that's what we did.

We went in and bought me 3 new bottles of gin from the Edinburgh Gin shop, and then went to the Whisky Society for late lunch and to buy new whisky for husband.  (That actually happens on a regular basis, so really my diagnosis was just a good excuse to get whisky lol.)

Of course over the course of the afternoon and evening, many people texted back and everyone was lovely, but shocked.  My own husband also admitted that he had fully expected me to be given the all clear.

Once home, I spent most of the evening on the phone to various people and my mum also returned the dogs.

Actually, funny side story.  My dogs who who are tiny Yorkshire terriers, can normally sit on my car front seat, belted in, curled up and sleep when I drive.  When my mum had them, the wee one had decided to become like Houdini, squirm out of her car harness AND her jacket, and had managed to stand on the window button to roll the window down whilst mum thought they were safely harnessed in the back seat of her car.  Poor mum thought she was having heart failure as she thought my dogs were making a bid for freedom!  Thankfully she stopped and put them to rights, but I have honestly never heard my mum swear so much about my wee puppies who look like butter wouldn't melt in their mouths!

My neighbours popped over too - I think this was the start of me trying to assure people that I was ok, I had not suddenly turned into an alien and that I was dealing with everything in my own imitable fashion 😀😀😀 - and actually I am eternally grateful to them both for coming over - as actually it genuinely proved to me that I am ok with this.

I have cancer.  It's not a death sentence.

Don't get me wrong... It's not going to be a walk in the park either, but I am determined to beat this with a positive attitude and great support networks.

I will end this blog here although this only covers one day - as the next part is better chunked together (I have OCD about making sure things flow well together! 😀😀😀)









Week 2: Getting tested...

Week 2: Thursday 01 - Wednesday 07 December 2016

So... awake early, and headed to the hospital with my mother in law in tow.  I had been concerned about getting parked, but thankfully there were still spaces left.  Went to find where I was supposed to go first, and then retreated back to the wee cafe for tea and scones to kill some time.

At 9.30, we went through to the Outpatients 4, where I was told to go to Area 2.  The place was actually full of mainly women over 60 / 70... and I remember thinking that I was too young to be here.

Anyway, I got called into be measured for my weight, and then I was called into see the surgeon.  Had left my jacket and bag with my mother in law, so made it easier to sit and anxiously sweat in front of the surgeon and staff nurse.  I was conscious that I had not put deodorant on that morning as I had read somewhere that that can muck up the readings on the mammogram - but with hindsight I think that may just be a load of tosh!

Anyhow - the surgeon was lovely and asked if he could examine my breasts, and then proceeded to check me all over, prior to him marking up dots around the lump, and getting his calipers out to measure it.

He explained that he would be sending me for a mammogram and an ultrasound, and then I would come back to him for a likely biopsy.  All fine I said - I have had a cervical biopsy before and know they can be quite quick.

So myself and my mother in law toddle off through to the general x-ray department with my bit of paper with exams required on it, and I sat and waited.  And waited.  It was disconcerting as there were 2 other people in the waiting room who had the same first name as me, and when their names were called, I felt like a cat on a hot tin roof!

I felt bad for my mother in law, as I was useless company - didn't feel like talking so just sat in silence...

I think I was called for my mammogram after about an hour of waiting and that was an interesting experience from an observational capacity.  Having never had one before, the radiographer had to tell me that she would position my breasts and I was just to relax.  Well... that's all well and good, but I was literally half naked, my boobs were being kneaded like dough by a stranger, and then pushed flattish by a machine!  I did manage to crack a joke though that made the technician smile, and I was also laughing at the fact that the marker dots had made a mirror image on my rib cage... the joys of big boobs and gravity!

After the mammogram, I was asked to wait outside until I was called for my ultrasound.  The technician said that overall I could expect to be in the x ray department for up to 4 hrs.... at which point I possibly looked at her like she had 2 heads, as I was still working on the premise that I would be an hour and half -  I had left 3 dogs roaming alone in the house thinking I was not going to be long!

Anyway... after maybe about another hour, I got called forward for my ultrasound... and again got naked from the waist up and lay on the bench as I waited for the radiologist to arrive.  I got covered in the jelly stuff, and I spent most of my time trying to twist my head upwards and backwards to see what was going on, on the screen.  (I should point out that clearly I have no knowledge of what ultrasound pictures actually mean, but there was no eureka moment, pictures of babies or aliens, and all I could actually see was a picture that looked grainy like a snow storm.)

The radiologist had a student in with her, and from their conversation I learned that my lymph nodes were clear, as was the rest of my breast.  They were taking measurements of the cross section of lymph glands rather than the length, as people have diffferent lengths of lymph nodes you know 😀.

She also highlighted that she could not see any blood supply to the lump, and then ultimately she asked me if the lump had always been red and warm to the touch.  I had to tell her that I didn't really know as I had only known about it for a week, but that my breasts were generally quite warm.  She acknowledged that, and also said I had had a lot of poking and prodding that morning.

She then told me that she was not able to give me a diagnosis at that point, but that the surgeon would not need her to guide any needles into the deep tissue and that I should go back as planned to the surgeon, who would likely give me a biopsy - and if there was fluid present it would drain out then.  She then proceeded to give me a small napkin to clean myself down with, and disappeared to give me privacy.  The only problem being that the amount of gloopy jelly on my boob clearly needed more than a small napkin to clean up... so I ended up having to use the paper lining off the bed to help me mop up (honestly, the joys of big boobs are not always transparent!)

Once outside, my mother in law and I headed back to OPD 4, where the surgeon called me in almost immediately, and apologised for the delay it had taken to see me again.

When I was inside his office, he actually asked me if I wanted my mum in with me... I laughed and said it was my mother in law, but that was fine.  With hindsight, maybe I should have known they were maybe prepping me for potential bad news, given I had done everything else all morning by myself!


Anyhow, he explained he was going to to do a core needle biopsy, and he would give me a local anaesthetic first... "a little prick?", I asked giggling 😀... He then compounded my laughter by saying it would be "a little nippy"... my laughter dried up though when he then explained that he was just going to then make a "small incision" in my breast.... I mean, that wasn't part of the deal!! I was thinking quick needle in and out, and I would be done in 2 minutes!


I should also point out at this juncture that my poor mother in law had been invited in by now, and was sitting beside me as all this was going on. Literally right beside me.  That meant that she was sitting beside my naked boob as the biopsy was being taken.... all I can say is that I now have a new level of relationship with my mother in law now that she has seen me naked!!!


Anyway, the surgeon went on to explain that the biopsy was like a gun firing, and he let me hear it first so that I knew what it would sound like.  He then also told me every time he fired it.  To be fair, the first 2 biopsies were fine - didn't feel a thing.  The third one must have touched a bit that was not fully anaesthetised, so I started crying at that bit, just from shock I think.


Of course, trying to do the 'pull yourself together' bit, I switched to business professional mode, and asked how long the results would take, and if the hospital would phone me, or pop them in the post to me.  The surgeon replied they would take a week, and I would have to make an appointment to come back the following week.  So I was quite amenable and said "of course, that's fine".


My head was racing a bit though, as I was trying to work out how many days I needed off work, given that I also had a second round interview the following week.


So... when I was dressed again (after temporarily forgetting how to do up my bra), I was sitting in front of the surgeon's desk again waiting to hear what was happening next.


He then went onto explain that the Radiologist was sitting on the fence with diagnosing my lump, therefore it could be cancer, or it might not be, but the biopsy would give a definitive answer.


At this point, I just broke down.  There was no inflection in his voice whatsoever, but I had spent an entire week telling everyone that it was just likely to be a cyst, and definitely not being a drama queen about anything, and I just don't think I was ready to hear the 'cancer' word.  Which is stupid - my dad has just lived through and survived bladder cancer, but yet I was not prepared to hear it as a possibility.


The surgeon went on to explain that there was nothing certain, but maybe it would be worth taking the next week off to do nice things to distract myself, whilst waiting for the results.  In a way that actually made it worse, as I have had a previous biopsy years ago and went straight back to work, so my head kind of went into a spin...


He also explained that when the local anaesthetic wore off, I may be in a bit of a pain for a wee while...  I stuttered something about cancelling going to my job interview next week, and he did say that he didn't want to jeopardise my job prospects, at which point I think I maybe laughed and said that I had to go home to do psychometric testing that day if I was planning on going to interview... but the way I was feeling at that point, it may come out as a false reading of me being bi polar!


Anyway, I had thought I had got a hold of my emotions when he then said that anyone who may be at risk of cancer was normally offered the opportunity to speak to a breast cancer specialist nurse.... and did I want to see one today?  At which point I started crying again... because I hadn't been told I had cancer.... I was still thinking I was coming in to treat a cyst....


So clearly... I wasn't thinking straight, so I did agree to see the nurse.  She was lovely, but started off by telling me I was in shock, it had only been a week, and that she understood how much of trauma it was to come in thinking one thing, and then ending up getting bits cut out of me for a biopsy.  She also went onto to say that if I did have breast cancer, it was the most treatable type of cancer and that she had recently discharged patients who had been clear of the illness for 10 years....


To be honest, at this point my head was struggling to take everything in.  I mean... in my head... I was only expecting to get a cyst drained... or told it was maybe fatty tissue.  It all seemed to escalate to the cancer word very quickly.


Anyway... I took her contact card, and made my way to the receptionist to make follow up appointment for the following week.  By this point I had had a few texts from different people asking how I was... possibly unsurprising as I had told everyone i would be put by 10.30am and it was now 1pm!


Phoned husband and tried to be as calm and as factual a possible.  Biopsy taken, week for results,  may or may not be cancer.  He did not react well.  Sounded shocked.  Told him he should maybe leave work and come home if he was not great with it.


Then took my mother in law for lunch, as by that point, I felt completely numb... but amazingly I was starving!  I never have a hot main meal at lunch time, but went and had mince and tatties.... proper comfort food!


When I had taken a seat and had food, I had finally stopped shaking.  I hadn't realised I was shaking until I stopped.... am guessing maybe shock and adrenaline maybe are big things....  anyway I then spent a few minutes trying to compose a text which would be factually correct but not panic inducing to close friends and family.


Clearly I did not make it non panic inducing enough.  ðŸ˜¨


However I did take the decision to withdraw from the second round interview, as i just don't think I could have done it justice.  Really surprisingly, both the Recruitment company and the chief executive of the organisation sent me really nice emails saying what an exceptional candidate I was, and they were sorry I was withdrawing - that was really nice, and gave me warm fuzzy feeling - I still have skills that people want in a workplace 😀😀😀.


Anyway... went home and spent rest of afternoon watching crap films and sleeping on the couch.  Community tree lighting that night was ok, but was also of mindset that there was no point in pondering the worst.... so learned to put everything out of my mind, and to tell everyone to basically wait a week and see.


I decided that if i was going to be taking the week off,  I was going to see it as a week's free annual leave to meet up with friends, be a lady that lunched and do stuff I never normally have time for.  ðŸ˜€ðŸ˜€ðŸ˜€


So... the Friday I caught up with a friend who is off sick herself at present - really good chat and good to chat about stuff going on with her.... she then came back to mine and we had a ladies night with my neighbours - much laughter and hilarity all round!


The Saturday I had a hair appointment in the morning... that was a tad awkward.  My hairdresser started teasing me about getting my hair all cut short last time, so asked what were we going to do today.... well, I then had to say that we would stick with what we had because I was not sure what I would be doing next month.... yip, talk about awkward.  See... I had previously committed to getting discount vouchers in December, to use in January and February... the trouble being that depending on the results of the biopsy, I may end up with no hair... anyway, after making her a little shell shocked, she asked me to let her know I got on...


Anyway - had a festive dinner out that night - lovely folk, and basically the wives sat on one side, and the husbands on the other... but good chat, and for the first time ever, I didn't have to drive.... so had a few glasses of prosecco 😀.  Of course all our chat always turns to family plans over the holidays, family shenanigans and health updates.... so just explained that I was waiting on a biopsy and everything was good.


(This may sound macabre, but actually being open and blunt, with a laissez faire attitude actually helps me to deal with uncertainty...)


The Sunday I went across to Dunfermline to see one of my oldest friends... she had news of her own, so we spent a good few hours talking about stuff, making plans and also working through some difficult stuff...


Monday I went across to see one of my fellow work Directors and spent the morning chatting and putting the world to rights... she had also made excellent chocolate cake!  After that it was a trip to the Kelvingrove museum - somewhere I had never been and wanted to go - and also to understand why it is so important to some people. 😀


Tuesday was catching up with one of my book club besties.  She is so lovely but got really upset on my terms of worrying about me... but I took her through all possible scenarios and being perfectly honest, I was pointing out it's a good thing to be prepared for anything and everything.


Then on the Wednesday, mum and I went house hunting for my sis, involving driving to the borders, video cam footage, and checking out the local pubs for quality of atmosphere, food and drink.... it also involved taking random detours when we saw houses that we liked which were not on my sister's list lol 😀😀😀.


Of course, I didn't sleep very much during the week.  It would be foolish and lying to say that I was cheery, relaxed and rested.  Every night I had even worse insomnia than usual, and every night into the small hours I would google, and research different stuff.  That was not in order to make me panic.... just to be prepared for the worst in case I did get bad news on the Thursday.


What the internet research did tell me, was that Americans really have a strange view of the world, but the UK based sites such as cancer care, and Macmillan are very good for finding out practical stuff, being honest and allaying any fears.


So the key things I was looking at were the different scenarios facing me.  I either had a benign lump which was sore, so would need cut out of me in some way, shape or other.  Or I had cancer which was fully treatable, but may require some shitty treatment in the short term.  Or I had inflammatory breast cancer, where the survival rates beyond 2 years are pretty crap.


Any of those options were going to be ok... on the basis I couldn't do much about them anyhow, other than getting the appropriate treatment.


But I did start trying to go over everything I knew for sure (evidence gathering and analysis lol), and then comparing with my symptoms.


So... my symptoms...

Lump on underside of my left breast.  Seemed to be about the size of a pea. Kind of in my breast but almost on the cusp of my rib cage.

Lump felt hard, but could be pushed around a bit.  Not squashy but relatively near surface - just above where the band of my bra sits.

Breast was sore on a daily basis.  (Breasts had been tender for a few weeks prior to me going to the doctor initially, where I joked with friends that if this was hormonal, I would rather have cancer than be pregnant.... how I laugh now with the irony!!!)

Lump did feel warm to the touch - but I have big boobs which ALWAYS feel warm to the touch.

I was having excessive sweating, especially at nights.  And even when I was cold.  But that could be pre-menopausal, or hypochondriacs anxiety!  It could also be attributable to the fact that my 2 yorkies sleep beside me in bed and cuddle up one either side of me lol.

I had lost 4lbs in a few days.  Normally this would be music to my ears.... and to be honest I had sweated loads... so I ate lots of cake and put the weight back on... 😀


Other than those things I didn't have any symptoms of ill health.  I had the occasional headache, and also, maybe my driving concentration not great because of the breast pain (I refuse to take painkillers unless I feel like I am dying!), but otherwise I was generally ok.


All the websites that I read basically said that pain is "not normally" associated with cancer.  Which I think actually does not help.  I get the fact that most people will find lumps with no pain and would not think to get them checked because they are not sore... but actually those with pain then may think that they are in the clear because pain is good???  Or at least I kind of did... or maybe that was just wishful thinking.


Anyway, my google history for this past week probably makes me look like a real morbid fucker.  I am not really - I just plan for the worse and hope for the best.


Tomorrow is diagnosis day either way.


Mum and husband coming with me.  I want my mum because she is my mum.  She has also lived with dad through his cancer, and is also a trained nurse.


My husband doesn't get that.  He thinks it should just be him.
Apart from the fact that I hate his driving, if I do get bad news, don't think he will cope very well.  And to be honest, I can't carry his emotional baggage as well as my own.  That might actually be a bit harsh on him - we have never gone through anything like this before.


Trying to be big, brave and strong.  Just as well I am a good actress. But looking on the upside - it's just something else to get through.  There will be a good end goal.


On a random side issue - my breast this week after the biopsy has gone some interesting colours!  I had not appreciated that they would not take the biopsy from the top down, over the previously marked up circle... instead i have track marks in a whole line across my breast leading to the lump kind of on a sideways trajectory.  From an observational basis - it's quite interesting.  Breast is still sore but not from the biopsy I think.  Just the same pain as before, but this time I am taking painkillers to dull it a bit.

Under my arms also now feel sore, so of course I am thinking that whatever is in me may be growing like an alien baby.  But realistically I know that when I am stressed, tired, run down or fighting infections, all of my glands swell up everywhere.  I look like a hamster.  It's a very fetching look.

Anyway... let's see what tomorrow brings.



Wednesday 30 November 2016

Week 1: Finding the lump...

So... where do I start?

I am writing this so that I can have a safe space to write all my thoughts down, both good and bad, so that when I have insomnia I can literally do a brain dump and then I can sleep.

There will be stuff that I post which I will never really want to share with friends and loved ones, because to be quite blunt, I am not sure they could cope with my dark humour or indeed some of my darker moments.


Maybe in the future I may be brave enough to compile this into an actual book, or maybe it will lie here as a semi-private blog for my own use only.  Either way, I just think this exercise will be good for me.


So... today is just tipping into Monday 12 December 2016... and the last 24 days have been both the longest days of hell, as well as passing by in a blur.

I will chunk this blog into individual weeks rather than days - I am not sure I am disciplined enough to write daily, and equally I may have nothing to say for long periods of time!

So.... this covers Week 0. (Thursday 24 - Wednesday 30 November 2016)


Overnight on Thursday 24th November, I was staying at a friend's house when I turned over and felt a sharp pain in my left breast.  Upon pressing it, I felt a pea sized hard lump at the bottom curve of my boob, kind of pressing against my rib cage. Without going into overdrive, I was initially thinking that the cough and chest / sinus infection I had had for the previous 6 weeks had maybe escalated or maybe I had a hernia.  (I had been prescribed antibiotics 2 weeks prior, so although I was still a little phlegmy and coughed, I was feeling a whole lot better than I had!!!)


However, it didn't stop me googling - although I stuck to the NHS website.  The advice was that any lump should be checked out, but that generally painful lumps were nothing to worry about.  It didn't stop me being slightly concerned though, and I then spent most of the night poking and prodding the lump to see if it moved easily like fluid, or if it felt hard and immovable.


Anyway... went to work the next morning, as my experience with my GP surgery had been when you phone up for an appointment, the next one is normally abut 3 weeks waiting time.  It took me 2 hours to get through to the receptionist, and I just explained that I had found a lump and asked if there was a well woman clinic that I could attend in the near future.  The receptionist was actually very calm but sympathetic, and said that there was an appointment with a female GP that day at 11.50am, and could I make it in.  (I was actually the other side of Glasgow and my home town is near Edinburgh, but I said yes regardless lol.)

So I jumped in my car and drove home.  I actually cried all the way to the doctors, partly as I was in pain, but also in shock that the doctor could see me that day.  In my head that meant it was something serious.  Which with hindsight I know it was irrational, as literally it could have been anything, although with happy hindsight I am really glad that the NHS are good at dealing with high risk areas of business!

Anyway, the doctor examined me and actually sounded surprised when she said that my lump was definitely present, but if she was a betting woman she was convinced that it was just a wee cyst.  In the olden days she would just have drained it, and I would have had immediate relief.  However... nowadays all cases had to be referred to the hospital to allow mammograms and other tests to be taken.  All I can say with hindsight is.... thank fuck I was referred!  That's nothing against the GP, but I am conscious about what could have went wrong if things hadn't turned out the way they did.

Anyway, she was very nice and said she would refer me to the one-stop breast clinic at St John's Hospital, and I would likely get an appointment before Christmas.  She went on to say that I could expect to be there for about an hour and a half, and I would get a mammogram and ultrasound, possibly a drain, or maybe a wee biopsy.

All good.  So then I drove all the way back to Glasgow as I had meetings, and I had another little blub in the car.  Not for any reason, other than I thought the referral to hospital sounded a little scary, even though I knew in my rational brain that this is all standard process.  Clearly logic does not always chime with how you actually feel!

Anyway, I decided to not overreact and to wait and see what happened.  In the intervening period, I had actually got an email on the Saturday asking if I was free to attend an interview down in Burton Upon Trent on the Tuesday, to which I cheerfully accepted.

So... went to the interview, and by the time I got home on the Tuesday night, I had an email saying I had been successful and could I participate in some psychometric testing in next 2 days, with a second interview scheduled for the following Wednesday... well I was absolutely thrilled as you can imagine, as that was the first job I had applied for in quite some time - and I had only applied thinking it would be good practise!

Anyway, come the Wednesday morning, I thought I better let my boss know I may have to go into hospital for tests sometime before Christmas.  So a quick email, and slightly uncomfortable face to face chat, and then back to my desk. To a missed call from the hospital, asking me to attend the next day.  6 days after I had seen the doctor.

Now again, rationally this was a good thing, quick to be seen, sooner for things to be discounted.  Instead I went to the toilets and burst into tears.

To be fair, I went to see my boss who insisted I took the afternoon off to go do something nice and distracting, so I arranged to go and see one of my friends close by for coffee - partly as I didn't think I could drive with wobbly legs.  She was great though and told me all about her experiences with multiple cysts, so again I was brought back down into calmness and had resigned myself to the worst thing that could happen would be that I had to get my boob drained of horrible yucky stuff.

Getting home that night, my mother in law was staying over, and she had offered to come with me the following day.  I had mixed feelings about that as I am quite independent and I also thought I would be in and out in a jiffy, as well as not wanting to be a burden to anyone... anyway it was a kind offer so I accepted and went to bed - I suffer from insomnia at the best of times but that night was worse this normal - mainly because I have a real phobia about needles and the thought of having something drained out of me was not exactly appealing.  So of course I did what most people do and spent my awakened time googling cancer - just in case.

The stupid thing was, is that the symptoms I had were a mix of everything - so in the end about 4am I gave up and decided not to be a drama queen and just wait and see what happened at the hospital....

With hindsight, this WAS still the best approach to take, even though clearly as my next blog shows... I didn't react so well on the day.... 😂





Tuesday 29 November 2016

Week 0: Introduction and context - PLEASE READ

Getting perspective... the random musings of a bolshy cancer fighter 😀

These are my own personal experiences, opinions and thoughts as I go through this journey.

Although I am a positive person, I also have my own dark sense of humour and I am aware that not everybody will either understand or appreciate that.  That's ok.  I write this diary for me, and me alone.  If it helps others along the way on their journey, or indeed to understand me and what I am going through... all good.  If it offends people, then I apologise but all I can suggest is that you switch off and don't read any further.

I am not naive to think that this what I am about to go through is going to be a walk in the park - to be frank, some of it going to be absolutely terrible to live through, write about and also to read about.  But I promise to be truthful to myself and cover the whole warts and all experience... (all puns intended lol).

This may take 6 months of my life, or it may take years... but I am seeing the whole thing as a new adventure to experience, and along the way, maybe take stock and reassess my priorities in life.

I may end up talking absolute random crap in the diary - but then I don't claim to be an acclaimed novelist with great editing skills.  Part of the rationale of writing this is to allow random thoughts an escape route from my insomniac brain, and also to give me an activity to focus on when I may otherwise may be a bit stressed.

So if you are still reading this... happy reading.  It's going to be a rollercoaster 😀.