Weeks 21 - 25: Gargantuan update...

Weeks 21 - 25: Thursday 13 April - Wednesday 17 May 2017

Ok... first off, apologies... this is a mammoth update as it covers the last five (yes five!) weeks of my treatment.

I will start off by saying I am still alive (always a bonus), but the reason I have not written for the last 5 weeks is because I have had a fairly rotten time of it, and I didn't want to write when I was feeling crappy - otherwise I am pretty sure some people may have thought I should be carted off to the nearest soft padded cell!

I write this a few days before my next and final chemo - so that will be subject to next week's update - but great news is that I am awake, alert, positive and looking forward to going down to stay at my sister's for some beach weather and chilling out in 2 weeks time 😀😀😀. (Wearing the pre-requisite cover up shirt, floppy hat and Factor 50!!!)

So where to start?  Well, 6 weeks ago I had my chemo changed as per the original plan.  So that was a switch to the chemo known as doxataxel.  However, given the medical team now know I have the BRCA 1 mutation, they also decided to add in carboplatin. This is a chemo drug which is also used to treat ovarian cancer, so I am guessing this really is belt and braces approach at the moment.  (I now know more than I did when I wrote my last blog lol!)

Anyway... thought all was going well - I got through the chemo with no allergic reaction whilst 3 other people on the unit each took an allergic turn and had to get emergency antihistamines... I was feeling quite smug...

Got home and basically slept for a few days, and thought all was going to be clear for the Easter weekend.  How naive of me lol 😱😱😱.

Easter Sunday I started vomiting, and it did not stop for days... to the point where mum had come to visit on the Tuesday and immediately took me to hospital.  With hindsight I perhaps should have phoned the chemo hotline sooner - but I genuinely thought it was going to pass, and I really didn't want to make a fuss 😱.

Taking me to hospital, poor mum was really quite worried - I could hardly walk or stand up for being so weak, and she ended up having to get me a wheelchair to take me from the hospital entrance to the emergency medical admissions unit up on the second floor.  (On a side note - who puts an emergency medical admissions unit on second floor at back end of hospital, which takes ages to actually get to?!?!)

Anyway... to cut a very long story short... I was dangerously dehydrated, and it turns out that the chemo had also done nasty things to my heart and my liver.  So I had to go on various drips for 24hrs including magnesium and potassium.  Which, just for the record, are exceptionally sore going in through my arm!!

Also, despite them giving me three different anti sickness medications, I was still being sick through them... as there was no bed immediately available when I first went in, I had to lie on a narrow gurney for about 6hrs before being formally admitted... and I went through an awful lot of sick bowls in that time 🤢.

Once admitted, I was trying to persuade my mum that she should really go and get some lunch, not actually appreciating that she might not fancy anything after watching me throw up all day... oops 😜.

I had seen various doctors over this period, and it turns out that my heart was slightly misfiring and basically was skipping heart beats for a little while, partly due to the lack of essential salts in my body I believe.  And my liver was inflamed, as were the rest of my internal organs, basically due to me being sick so much.

So... ultimately I got a bed on a ward.... and then I got shifted again at 10pm that night to another ward due to an influx of people coming in via A&E.  To be fair, I just kind of got pushed around in a daze so it didn't bother me much at all.

I also got sent for various scans at this time, because as they said to me, it would be a bit unfortunate if they overlooked something simple like gall bladder issues whilst they just focused on cancer-related stuff!  (Thankfully ALL of this is actually just chemo related... my body just really does not like it 😱.)

The nursing staff during this period were definitely mixed.  There were some really lovely nurses who really took time to check in on me and then there was another one who said there was no point in knowing my name as she was not going to be on shift for days after that day...  the inmates on this ward this time were another interesting bunch too.  Especially the woman who had 10 visitors to her bed at each visiting session!!!

Unfortunately that was too much for the nursing staff to bear and had actually asked some of the visitors to leave... and they didn't.  So of course, it really didn't help when I needed to go to the toilet and the visitors had blocked the passage to the ward toilet.  

I actually did the decent thing and just asked if I could use another toilet on that floor.... but the staff nurse was incensed with indignant rage by that point, so she marched up to the extended family visiting and pointed to me and said that they were stopping an ill patient from going to the toilet and they had to leave immediately as it was only allowed two to a bed for these kind of reasons.  Cue the mortified patient btw.  I would really rather the ground had opened up and swallowed me at that point 😱😱😱.

Anyway... I eventually got out out of hospital later that evening.... having then managed to forget my drugs.  So that required Dave to go back to hospital the following day to collect them - bloody chemo brain!!!

The following weekend, Irish Sue came across, and she was a great tonic to my crappy week.  It was definitely a much quieter weekend than we would normally have had, but she really cheered me up when things were getting on top of me.

Unfortunately, this was also the weekend where Dave had a bit of a drunken blowout at the football... and it was linked to him not coping with me having cancer.  This actually led to many weeks of angst for both of us, as I knew he was not coping but equally, I could not cope with him as I had my own sickness and rollercoaster of emotions to deal with.  

Anyway... he went to speak to a counsellor at Maggie's Centre who are experts in helping carers deal with their concerns, and it was the best thing he could have done.  For instance, he got told it's ok to feel resentful to the world about how things are unfair.  It's also ok for him to be pissed off at me when I am grumpy or treat him like crap.  (On a funny note, this may give me license to be really grumpy now lol 😀.). I also now realise that he and mum are the only ones that see me at my sickest and lowest ebb... everyone else I generally make sure I am upbeat and positive - as I generally am... but I don't make that effort when I am home alone with Dave - because I am basically knackered.

Please know - I only include this info here as I know other people who are dealing with cancer may be facing similar situations with their partners / family / carers.  Basically Dave has had many offers of support and chats and help from loads of people... he just kept saying he was fine, but I knew he was not.  (Of course, I did feel kind of sanctimonious when I told him that "I told him so", but I will try not to gloat.)

Basically being a carer is hard.  And I do get that.  And for any other people going through this, it is an unenviable task...  just to give you a flavour of home life...

Literally, at my weakest moments I can't do anything.  I can't currently even walk my dogs for more than 10 mins as I am absolutely shattered and end up having to sit down in a crumpled heap.  I also can't do any housework as I can't lift anything more than a bag of sugar, and I also can't be exposed to a multitude of germs, dirt or bleach.  I also take it in turns to sleep in all 4 different beds we have in the house depending if I am too hot, too cold, too sweaty, sore bones, sensitivity to light or noise.... and that subsequently means there is a lot of laundry that needs done every other day from the night sweats.  Then there is the whole cleaning of the bathrooms after every time I am sick too... so, as I say, being a carer is not easy.

I don't actually think I have been that demanding a patient, and I certainly have tried not to be stroppy.  But this past 5 weeks have been particularly difficult as I have had no real good days, as opposed to the first 12 weeks, where actually I was only sick for 4 days out of each 3 week cycle.

Also, this chemo - my taste buds are definitely all over the place... everything tastes like cardboard, my mouth was sore and I couldn't eat anything dry or sharp, and to be honest, most of the time I have been living on ice cream and lollies in order to get calories into me and soothe my throat.  It can make me seem somewhat ungrateful when I reject plates of prepared food made with the best of intentions... 😔.  Also, I really do suffer from unexplainable and irrational chemo rage - about anyone that may annoy me (or that I perceive annoys me - see references to paranoia and hallucinations!).  And this comes with NO way of rationalising it or de-escalating it.  Those are the days I put my head under the covers, turn off all technology and refuse to speak to anyone like a toddler in a massive tantrum.

Anyway... the following weekend from Sue's trip over, Dave and his mum went on a pre-planned trip to Rome, which was booked at my insistence the month previous.  The reason for this, to be quite blunt, was despite the fact that we are married, I can't stand being around Dave for 24hrs a day, and I am sure the feeling is mutual, and I knew that he needed a break - as did I lol.

However, given that I was still a bit 'wabbit', my mum and dad moved in for 4 days to babysit me.  And to be honest, I am eternally grateful that they did.   I actually ended up doing nothing but sleep for 2.5 days, with interjections from my parents bringing me up food and drink.  On the 3rd day I was less shaky and got up and we went a drive to go and have a Diet Coke at a local pub, to sit out and get some fresh air in the beer garden.  I still got tired easily, but it was definitely of benefit to actually get out and see daylight 😀😀😀.

Unfortunately being in hospital had delayed my consultation with the breast surgeon, so that took place the following week... and it was fairly momentous.  I had done loads of research before I had gone in (even the squeamish inducing technical details of surgery 😱), and the surgeon was great.  Calm, confident, matter of fact and asked me if I had had enough information and had I come to any conclusions.  So no time wasting or dumbing down of things.

Basically I have opted for double mastectomy with immediate reconstruction.

I need to have further meeting with the plastic surgeons, and then they are hoping to get me in for actual surgery after my chemo recovery period - maybe 3 or 4 months time depending on surgical team availability.

It's going to be a big operation (nothing to do with size of my current chest!), and will take 2 plastic surgeons as well as the breast surgeon to do the surgery, and they need an operating theatre booked out all day.  The surgery itself may take anything between 8 and 12 hours I believe.

(The technical detail around micro vascular surgery is fascinating btw!)

On the upside I will get a free tummy tuck, although recovery period might be anything from 3 months plus. But at the end of the day, it look like I get to choose what I want my final body shape to be!  (Angelina Jolie perhaps lol!!! 😀😀😀)

There still needs to be lots of in-depth discussions about nipple placement (!) and the need to create a new belly button for me, and it's not just going to be the one operation... but the good news is that these type of operations are done all the time, with great success.

So... overall I am happy with the decision, confident in the surgical teams and probably keen to get moving asap - but I also recognise I am still under the influence of chemo, and I also have second surgical consult at beginning of June to discuss removing my ovaries and tubes too...  that 'should' be keyhole procedure, done and out in a day, with about 3 weeks recovery, so here's hoping...

At the the end of this, as long as I don't look like Frankenstein's bride, that will be a bonus! 😄😄

Also during this period, I was supposed to be going back to physio to check progress on my arm cording and my sore hips.  Unfortunately, when I turned up, the chemo had really wracked my body and I had bone pain all over, so the physio could not tell if the exercises were working as everything hurt and everything was out of alignment... so basically I now have an open door to go back when I finish chemo whenever I want and we can start afresh once chemo is out of my system.

The other thing about this chemo which I not properly taken on board, is that it seems to have a cumulative effect...  so whilst I am being blasted with really aggressive doses of chemo, I am never quite getting back up to healthy levels each time I go back... so I start with a lower threshold at each session.

Which in turn, probably makes sense as I am pretty sure I now see the potential side effects as just a checklist of things I now get all the time...

So... like a pop-pickers top 10, here is a list of everything I have had over the last 5 weeks...

1. Fatigue - moving about feels like wading through treacle
2. Sickness
3. Bone pain where it feels like bones change from being bruised to feeling crushed
4. Cloudy eyesight on occasion
5. Dizziness and blackout
6. Shaking / trembly hands where I can physically spill drinks
7. Numbness of fingers
8. Toileting issues of all extremes
9. Bleeding from various bits of my body
10. Infected eyelash ducts from eyelashes falling out
11. Nearly complete loss of my eyebrows
12. Veins in arms hardening and bruising due to amount of injections 
13. Chills and sweats
14. Disorientation and hallucinations
15. Complete brain fog and forget what I am speaking about
16. Lack of appetite or thirst
17. Tastebuds completely gone
18. Dry mouth and difficulty in swallowing
19. Headaches
20. Sensitivity to light and noise
21. And in the last week - postules (mini boils) erupted on my face as part of chemo rash.  I looked like a Shakespearean witch!  And it was really painful...

However... that list looks huge, but I certainly don't think I have suffered as badly as some others have, so I am adamant I am remaining positive.  The key buggeration factor in the last 5 weeks is that I have not been able to get out and about as much as I have done previously, and I really think that that also impacted on my mental health.

I have really struggled at times to put a smile on things, as I was permanently in pain, and pissed off that I was too ill to do anything.  And then it becomes a viscous cycle.

I also have moments of wobble when I think ahead to all the surgery I am going out have, effectively on a voluntary basis.  Whilst rationally, it's a no-brainer when it reduces my cancer risk to 2% for both breast and ovarian cancers, I am by no means a robot, and the thought of going under the knife and associated pain afterwards scares the bejesus out of me.  I also don't know, what I don't know, and I am not sure what type of person I am going to turn out to be yet.  Sometimes running away and having lots of holidays seems so much more fun than dealing with pain, responsibility and risks.... but I know that's me being at a low ebb... and I can still pull myself out of these pity moments relatively quickly. 😀😀😀

The counsellors are right - chemo pushes the body, mind and mental health to the limits, and I find it difficult to deal with self doubt and paranoia.  But, I am getting help through that, and it's really good speaking to people who have been through the exact same thing as I am going through... because to be honest, people who have not gone through this don't really understand, and neither do they need to.

I am really conscious that I don't want to become a cancer bore, and I know this consumes my life at the moment, but there is definitely something about facing real mortality issues that really makes you look at things differently.

Thankfully I do have wonderful friends and family who keep me updated with their gossip, stories and joys which means I don't ever become too self absorbed hopefully 😀.  And so many lovely people have given me so many thoughtful presents too... completely unexpected, but each one really does bring wee rays of sunshine - I probably don't express my gratitude enough, but once I am fully better I really think a big party for all of my supporters is in order!!

There was some good news over this period though, and my mum's gene testing has come back negative.  So dad now going for his test to see if he is the gene carrier, or whether I am patient zero.  But unlike horror films like '28 days later', if I am patient zero, I don't have anything contagious which I can pass on lol 😀😀😀.

Also, I have been able to see a few people over the last 5 weeks, which have been true god sends - they may have been constrained to an hour maximum before I had to go for a sleep, but I even managed to try my hand at painting in my brother's bathroom.... again I lasted about an hour before needing a sleep, so my mum and sister-in-law soldiered on without me as I sat and ate a pie pmsl.  I make a great supervisor!!!

I will end this blog with an interesting observation... I was asked recently if I saw myself as cancer victim, sufferer or patient.... I promptly replied that I was a cancer fighter, and proud to be so... and I genuinely mean that 😀.

It's been a tough gig... but I am alive and getting through it.  My last chemo is this week, and I then have a recovery period for chemo to exit my system, however long that takes.  That will complete another stage in the cancer fight. ❤️

1. I had the tumour removed cleanly, with no need to go back - 🕴🏻✅ success.
2. I am about to complete 18 weeks of chemo - ✅ success (despite the crappy side effects lol).
3. I am now in discussion stages about risks reducing surgery -  ↗️ in progress.
4. Completion of new body, new me -  long term goal 🏆🏆🏆.

So, all's well that ends well with this monumental blog.  I am grateful for what I have, the people I love and value, and my two puppies who are my constant companions.  

I am a fighter.  And I will win (but that possibly says more about my competitive streak and stubbornness than anything else!!)

Thanks to everyone for sticking with me... till next week's instalment... ciao for now! Xx

Week 20: Cycle 3, Week 3 - lots of appointments and new chemo...

Week 20: Thursday 06 - Wednesday 12 April 2017

So a bit of a mixed week this week... after telling everyone my bombshell news last week, I then wrote my blog and actually explained how I had had 2 weeks to process stuff on my own so I genuinely was ok... but realise this came as a shock to everyone else.

But genuinely I know it's all for the best, and I know everyone just worries about me.  All the messages of support have been lovely, and work mates are now embarking on massive fundraising drive for the charities I have benefitted from... that's just an amazing thing to do... and this is on top of my 2 fantastic neighbours who are doing 5k run in my name for Cancer Research at end of June!

Been a busy but mainly good week this past week... with hindsight yes I may have done too much lol... Thursday I managed to go and see my friends Lou and Michelle briefly and got to see 2 gorgeous babies followed by my family over for dinner... but no karaoke... 😥. (My chemo tiredness / grumpiness kicked in and actually I could not face singing by me or the kids... bad auntie!!!). Mum and dad took kids away after dinner, and I effectively then slept for 20 hours straight ... so maybe I don't feel so bad lol 😀.

Once awake, Friday night I got to see long term bestie Phil and caught up on a gazillion things whilst stuffing my face with Italian food - salad option was definitely good choice to battle against the few pounds I have put on!

I lasted a couple of hours again before coming home to bed to sleep for a bit... but woke up on Saturday with bundles of energy again 😄😄😄.  (Must have been the spinach in that salad lol!)

Saturday my parents came over for impromptu BBQ and arranging the family sweepstake on grand national.  Despite dad teaching me how to read racing form week previous, I had absolutely no success, and instead I just got slated for reading racing guide for 30 mins! 😆😆😆

Either way though, it was just lovely to sit out in back garden, wear my shorts and children's factor 50 sunscreen and sun hat, and generally just enjoy peace and quiet 😘.

Sunday was new day, back at sister's new place for BBQ and gardening... made mistake of wearing shorts again but it turned out to be freezing down in Gala, so ended up wearing brother in laws trackies instead...

However, despite my best intentions, the pesky fatigue took over so I basically did my usual and took over one of the beds upstairs whilst everybody else slaved their guts out!!  I even slept through sawing, drilling and barking puppies!

Pesky hip pain also returned with vengeance that night... realised at that point it was maybe time to see GP!  (I knew it was really bad when I couldn't get off couch, red hot poker feeling and I couldn't put weight on my leg at all.... 😱)

So.... that meant that Monday I ended up practically living at doctors surgery... 3 appointments!!!  First was chemo bloods - in and out in 5 mins. 😀

Then an initial phone consultation with GP, who asked me to return asap for physical exam of hip.... ("given my history...!")

I had only just reached Morrisons to get the weekly shop... so turned back and got all kinds of exam and pressure points tested instead...

Good news is that it is def not bone pain so no fear of cancer spread... and she is going to refer me to physio as well as prescribing different anti inflammatories and omeprezole to protect my stomach... probably bursitis - inflammation of fluid sack around hip joint.

She also checked how I was doing generally, commiserated with all the side effects and also congratulated me on decision to have the future surgery... she was quite interested in what I did for a living, but I am not naive to think this is general chit chat... I know this is part of the assessment of my cognitive ability and ability to make life changing decisions... which is good, as it does show that I am of firm mind and am doing what's best for me 😄😄😄.

Third appointment of the day was physio... originally recommended by chemo unit without me knowing... last chemo I couldn't straighten my arm due to cording... basically my veins and nerves going into flight mode lol.  Anyway, my lovely GP had managed to let him know about my hip, so we discussed that too ... for arm pain I have gentle pressure stretch... but for my hip, turns out it might be either my back or my hip causing the pain!

So initially stretches for my back... tightened muscles possibly caused by sitting too long when I am tired in a slightly slouched position with my knees curled up... who knew???

He did point out that this is only affecting me as I have no resilience at the moment, and as I am more sedentary my muscles are not getting enough correct movements ...

Anyway... feel a bit like a hypochondriac as this is clearly self induced... but he thinks it will be simple fixes 😄😄😄. And if it's not my back, he will change to hip exercises when I see him in a fortnight.

Of course, small downside with chemo brain is that by time I got home I had forgotten the exercises... but remembered them through overnight insomnia lol.😄

Tuesday was another trip to oncology at St. John's hospital.

Basically it appears that following my case conference, my surgical team were split on benefits of changing planned chemo.  So it then became my choice!  (Scary biscuits as what do I know about cancer drugs???)

Anyway, I signed up for extra chemo drug which is experimental in my condition, alongside a slightly lesser dose of the harsh doxataxel.  Both have side effects of lowering white blood cell count, but the tummy jag I have to do on Thursday should counteract all that.

Other side effects... much more fatigue, potential loss of feeling in fingers and toes (which may or may not become permanent), and greater joint and bone pain.  Oh and possibly severe allergic reaction...

But on the upside... NO VOMITING! 😄😄😄😄😄

Mum asked some really good questions about success rates and how long new drug being proposed had been around... it's been used successfully in other cancers for 30 years, and for in some cases of my cancer for about 3 years.... basically it's been proven to work on reducing tumour sizes prior to surgery so there is a belief that it makes chemo more effective... so although I have had my tumour removed, given my mutant status, there is a belief and 'some' empirical evidence that it may be added belt and braces approach for me.  (Later research by me also explained it is good for targeting ovarian cancer - which links to my genetic mutation... real belt and braces approach!)

He then also asked about my hip pain (as I had spoken to breast cancer nurse week previous, who referred me to GP).  He did say that as long as pain got better in next few weeks then that was fine, but I was to let them know if it continued or got worse... I was offered a bone scan to put my mind at ease if I wanted one, but to be honest if it's not bone pain I am not going to worry before I give physio a try out!

He then asked me about clinical trials to which I said I would be keen... and then breast nurse asked if I wanted to delay my appointment with the breast surgeon planned for following week ... to which I said no.

I gently pointed out that given I assess risks and take hard decisions all my life at work, I would rather have that initial chat, see what's possible and get things over and done with as soon as possible.  I only want one period of sickness and get back to work as soon as possible and re-start all areas of my life.

(Again this is all assessing my rationale and behaviour... breast nurse was lovely... but also taking copious notes lol.)

So that was all fine.... oh and I finally remembered to ask what type of cancer I have.  So I already knew it was grade 3 (aggressive), stage 2 and triple negative tumour... but I didn't actually know where in breast it was actually located... So I just asked.

For info, I had 'Invasive ductal carcinoma (IDC)', also known as infiltrating ductal carcinoma, which is cancer that began growing in the milk duct and has invaded the fatty tissue of the breast outside of the duct... so there you have it 😄.

On my way out, had to stop in for a new ECG reading... they need to know how the old ticking heart standing up to chemo!  (It's still there and working thankfully 😜😉.)

The clinician there was asking how I was doing and applauded me on taking decision to have risk reducing surgery... she works a lot with oncology team and knows people who have done same thing as I am doing with great success.

So... good that everyone is interested and has positive opinion... and agrees with me lol 😄.  (Don't get me wrong... I am still bricking it, thinking about going under knife... but it's still a no brainer!)

Mum and I then popped for quick tea and scone for energy boost before mum dropped me off and I headed out for lovely lunch with some special peeps, who always have the ability to make me laugh... even if I do get told I look good but tired... 😜.  (Knew I should have worn that special make up lol!)

Only downside on Tuesday was coming back to house to find puppy poo literally everywhere in lounge and hall... not sure what had happened but mum and I had a lot of cleaning up to do... just as well I love my pooches, but one of them definitely had upset tummy 🤢.  Maybe it's a sympathy thing for me lol.

Tuesday evening got to have an amazing night with my sister.. out for Italian (lots of small bundles of food today... but have to build up stamina prior to chemo... honest!)... although technically 3 courses tonight... what an oinker I am lol!!!

Had lots of serious and funny chat before coming back to chill with gin (Angie) and flavoured water (me) lol.

Wednesday I was anxious... proven by having about max of 3hrs sleep overnight.  Although with hindsight I had forgotten I had taken evening steroids in advance of chemo... no wonder I was as bright as a button!!!

New chemo, I really don't like going into the unexpected health wise... which is a bit ridiculous given that in all the rest of my life I rush in where angels fear to tread FFS!

Need to remember to paint nails in a dark colour varnish to stop chemo oxidising through nail beds, resulting in potential loss of nails 😱😱😱.  (My sister was quite disgusted at thought of touching my feet... but genuinely I hardly have pigs trotters... on a good day I even think my feet could be deemed quite attractive 😄😄😄)

Anyway... that brings us on to today and chemo day... we started off by going to McDonalds for a calorie laden breakfast as I am supposed to eat before chemo... then into the hospital in plenty time to get car parking space.

Chemo session started with me cooking my arm in hot water to open up my veins and getting a vein flush... it then took the pharmacy almost 2hrs to deliver my actual drugs!!!  My big sis was not impressed at the inefficiency...

However we did play cards, read side effects of new drug and she also did my pedicure and manicure (delicious dark purple colour!)... which was really funny as the look on her face dealing with my trotter feet was just too hilarious... all the other patients and their companions on the ward were watching with interest, but all companions were busy shaking their heads and said they would not be doing that for their friends / significant others lol 😄😄😄.

The chemo went surprisingly well... after the nurse hovering about to make sure I wasn't going to have any nasty reactions, I then had a wee snooze because the room was really really overwhelmingly hot... and my arm was wrapped up in a heat pad too!!!  It was only time I felt partially queasy and it wasn't even chemo related 🤔.

The other thing about chemo today is that it was full of alcohol... so no driving for me today lol...

Before I left, the nurse came up to ask me to get my bloods checked at the GP's weekly from now on... the 2 chemo drugs combined really quite likely to deplete my white blood cell count, leaving me at greater risk of sepsis... however the oncologist had actually removed my tummy jag from the prescription!  But she wasn't happy with that either so I have to pop in to the chemo unit tomorrow for jag just to be on safe side given my hospitalisation for sepsis 8 weeks ago... 😱... (upside is I don't have to do it myself with one eye closed and staring squint eyes at my tummy fat lol 😉.)

Came home and more or less went straight to bed... lack of sleep last night and the come down from adrenaline hit... so had a few hours before getting up and having dinner and watching a kids movie to chill out.  Just about to head back to bed despite the additional insomnia-inducing steroids I have had to take.

Hope my runaway and overthinking brain doesn't go into overdrive tonight... but equally I have come across a few things and a few people who seem to be bull shitting me... so currently trying not to overreact and it may just be time for me to reassess what I am going to believe and who I remain in contact with... I may have cancer and facing multiple changes in my life... but I am still not a mug to be taken for a ride! 😉
(Rod of steel does occasionally come out lol!!!)

So this next week will be mainly dealing with any fatigue issues (sleeping!) and then the big surgery consult next Wednesday...

Hopefully all goes smoothly and I can see more of my sister's family prior to them going back to Cornwall on Tuesday... oh and must remember to do physio exercises... and more shaking my hips to Shakira... 😜

Till next week... have a good one everybody 😄😄😄 x

Weeks 17, 18 and 19: Genetics results, clinical trials and gallivanting...

Weeks 17, 18 and 19: Thursday 16 March - Wednesday 05 April 2017

Ok... I am just going to apologise in advance that this is probably going to be a long, long blog entry.  I have not written for 3 weeks, as to be quite blunt, there has been a lot going on, and I needed time to process stuff, and equally, I didn't want to make public announcements until I had told specific stuff to my family.

I write this on a Saturday morning, whilst hubby is sleeping off what will be sure to be a momentous hangover in the the other room. Before anyone judges him unkindly... I have actively encouraged him to maintain his social life whilst I am off sick... I am not an invalid, and actually for the last couple of weeks I have ended up staying quite a lot at my parents.... out gallivanting, social days and generally getting spoiled 😀.

I also write this whilst currently feeling like my right hip is on fire.  I don't think this is is chemo or cancer related, but just another random thing which has come along at an inopportune time... indeed I think it may be a flare up of bursitis again... basically inflammation of the fluid sac around the hip joint.  However, I am not supposed to take ibuprofen or paracetamol whilst on chemo in case it masks a temperature, but the codeine that I am taking does not seem to touch the pain very much....

Anyway... cue a potential visit to my gp this week 😜.  (I had phoned my breast cancer nurse last week when it flared up for 2 days initially - she doesn't think it is cancer related, (even when I wondered if it was possible for the cancer to have spread!), so I was just to go to my gp.... I phoned the medical practice to be told to phone back the next day... and I didn't.  I don't really like making a fuss, and it had reduced in pain after a couple of days...

So... the biggest news over the last 3 weeks is that I have tested positive for what is known as the BRCA1 gene... which means that is what has caused my cancer.
(Think Angelina Jolie!)

It basically means I have a much higher risk of both future breast and ovarian cancers.... like up to an 80% chance, given I already had cancer once.

I actually got told by phone call, the day before my last chemo... unfortunately as I had just woken up from one of my afternoon power naps... groggy Linz does not take in very much!

To be fair, I had asked to be told immediately by phone as soon as the results were available, and the genetic counsellor was very nice and then asked me to come in to see her to discuss options in more detail in a fortnight's time.

The first thing I did was phone my mum and have a little cry.  Even though I had researched this as a possibility, and had had a really strong premonition that this was going to be the case, it's really hard to hear it actually confirmed. As I had already done the research prior to being tested and knew what the options were, none of them were particularly pleasant.

However, at that point in time, I decided not to tell rest of my family, as my sister was due to go off on a lovely spa weekend, and didn't want her stressing either for me, or indeed for any tests she herself will be offered in the future.

So... I pulled myself together, and reverted back to practical Linz.  To be fair, in the face of any adversity, I am always better concentrating on the practical aspects, and then coming up with positive silver linings... if I didn't, then I would probably go stir crazy and sink into an impossible depression... and I just am not (and don't want to be) that type of person.

That night, I ended up doing a lot of research on the various Macmillan and Breast Cancer Care websites about the gene mutation, and went as far as looking at the surgical options and what they may mean for me.

Effectively I have three choices:

1. I could go for screening every 6 months for rest of my life, basically until if and when they find more tumours - but first of all, I don't want to have to go through chemo ever again.  Whilst I have coped ok with it, there are some really shitty days to get through, and also, there is no effective screening programme for ovarian cancer yet.  Generally they only find that type of cancer when its really far advanced and terminal.

2. Or, I could take Tamoxifen for the next 5 years. However, for my type of cancer, there is only minimal research that it makes any difference to chances of recurrence, and it does have some nasty side effects - like being menopausal for the 5 years.... and I don't want to become a murderous narky cow!

3. Or, I can have what is called risk-reducing surgery.  This reduces my risk of both of breast and ovarian cancers to less than 5%.

To me, this becomes a no-brainer.  I don't want to be constantly worrying about every lump, bump, illness... and I don't want to be on drugs for the rest of my life.

Don't get me wrong, the thought of going under the knife for 2 operations, with potential additional procedures is not an easy choice.  There are risks associated with surgery, there will be a significant amount of pain to get through from each surgery, and there is the whole thing about recovery times and not being able to drive for a bit, and a degree of loss of independence for a while... but my chances of survival for a longer life are much better this way.  It's quite a stark reality to have to face, but then I see this as no different to weighing up options and risk at work, and taking decisions based on the best information available to me 😀.

I will bore people with surgical details in later blogs, but effectively I know I don't want plastic boobs, but it turns out they can take my own muscle and fat from different parts of my body, and reconstruct boobs into a size of my choosing... 😜.

But given I got this news a fortnight ago, I then decided to have as many nice days out as possible to distract myself until I had the formal appointment... so that's what I did 😀😀😀... "let them eat cake" lol.

However, lack of sleep and worry did mean that when I went in for my chemo review and actual chemo the following day, I was not in good form.

Seeing the oncologist for my planned mid-term review was a bit strange as they did not know yet about my BRCA results... after me telling them, he said that that may influence my next type of chemo... they may add things to it, change the dosage or change the frequency... this was not what I wanted to hear, as all of these things may actually prolong my treatment!!!  Anyway, they now need to have a case review, and I now have a follow up appointment on Tuesday of this week coming to see what they have decided...

Whilst in that appointment, there was a clinical researcher also sitting in on my appointment... effectively they asked me if I wanted to take part in some clinical trials given the rare type of cancer I have, and now especially because of the BRCA mutation.  In theory I would be glad to assist in these trials, as if this helps discover things which helps future diagnosis and treatment, then again, I think this is a no brainer.  I have benefitted from other people helping to get cancer research to this stage, so it would be good if I could do likewise.

So, after a few questions (like does this limit my options for surgery etc.... the answer is no!), I got given the details of 2 trials which I may wish to consider, which in effect mean taking either a placebo or a drug for a couple of years with up to 10 years follow up.  On the upside, I see this as even more extra screening for whatever I have, and means that any new symptom or pain can be explored and examined tout suite... and I can opt out at any time.  However, the oncologist was quick to reassure me that I have to consider doing everything I want to do to fully recover from my cancer first (I.e. Surgery vs other options) before even contemplating clinical trials... and there is absolutely no rush for me to decide on clinical trials right away as they are all for drugs to prevent reoccurrence of cancer.  (As opposed to treating a current cancer.)

After this appointment, I was shattered, so went home literally for a quick half hour snooze before going back for chemo... and I just felt queasy and unwell that day.  The chemo was sore going in to my arm, I was really clammy and my chemo nurse was concerned in case I was coming down with something... however, we got through the chemo and I explained about the BRCA stuff... and got a bit emotional again... I don't think I am good when people are too kind and sympathetic as it was all still a bit raw... and with hindsight, I think being upset about it, meant that the chemo hit me harder this time...

Anyway... I had a few days of being really quite sick, and some other awful toileting side effects, but managed to get vertical by the Saturday this time around.... still couldn't eat very much, but managed a drive to South Queensferry to get ice cream on a sunny day 😀😀😀.

On the Monday, I went for a health fitness assessment with a cancer fitness specialist - this is a guy who runs fitness classes for people with cancer, and I was keen to join in order to build up fitness and resilience levels.

Well... despite my best efforts, I am technically too ill at present to join in.  I have no recovery capacity at the moment, so what Mike is going to do is give me 2 x 30 min sessions on a 1:1 basis to give me some baby exercises to build up slowly.... but as I am still going through active treatment (and facing potential surgery) what I need to focus on is daily goals of getting up, eating and keeping it down, and gentle movements just to be active around the house.  (Which is good news as that is what I am doing anyhow 😀.)

He actually said I could live on McDonald's and cake every day at the moment and it not being an issue, as I am not taking in enough calories to help my body repair itself from the chemo... what a diagnosis!!!

Unfortunately I was in the appointment longer than I anticipated (and what I had told mum to wait for me), so I didn't realise that so much time had passed until mum rang the buzzer looking for me - she was worried in case I had been spirited away by some kind of axe murderer... (I had missed 3 calls and a few texts from her 😱).  In actual fact I had been walking on a treadmill with various monitors attached to me after a lot of talking lol... (I did manage to get his entire life history from him, as well as his plans for future charity fundraising activities .... what can I say, people talk to me 😀😀😀).

After coming out of that appointment, I was decidedly wobbly, so we went across to Greggs to have a pie and a doughnut... all without even getting a red face lol.

Other things of note over the last 3 weeks, is that I experienced true chemo / menopause rage. 😡😡😡

I genuinely thought I would try get through all of this as evenly balanced as possible, and although I was warned about the menopausal type symptoms, I thought to some degree that they were being overstated.  OMG they weren't.

It was such a small thing, I had taken my niece out to the cinema, and we had offered to pick up Chinese takeaway for our friends who were also staying over with us that night... please note pick up rather than delivery as the delivery time was going to be over an hour.  So I placed my order as we left the cinema, we nipped into get extra nibbles from the supermarket and then I went to pick up takeaway at the appointed time... well, it wasn't ready at the appointed time, and I had to wait 20 mins in the shop for it... (whilst being told "just coming in 5 mins" on 3 separate occasions!!!).

So I was already slightly irritated by the time I got home (I should also point out I had been constipated for 5 days by that point, and that may have also contributed to my grumpiness - but genuinely I had had a great trip to see Beauty and the Beast with my niece!).  Anyhow, Dave was dishing out the food when it was discovered that the only meal which had not been included was mine.  Well... to say I was absolutely grumpy as hell does not cover it.   I phoned the takeaway and spoke in polite but clipped tones... they said they would deliver it asap.  They took an hour.  During which time I had dark thoughts, and drummed my fingers.  And sighed.  And huffed.  A lot.

My poor niece and friends were trying not to laugh at me, and I knew in myself I was being ridiculous, but I just could not stop being grumpy!!!

Thankfully I have not had any other episodes like that, but jeez... I can laugh about it now, but I did have to apologise to everyone after I had calmed down.  The worst thing was by the time the food actually arrived I didn't even want it by then 🤔.

Did turn out to be a great night with friends though - the boys stayed downstairs getting drunk and playing FIFA, whilst Nat and I escaped upstairs to chat and put the world to rights... we were chatting until 4.30am! 😀😀😀

Managed a day into work over the past couple of weeks too... given my change to diagnosis, I thought it would be prudent to go in and explain to my boss that it might be a wee bit longer for me to come back to work depending on what happens with surgical timescales etc.  I also had really good chat with my HR colleague about process and what happens next... the great thing about everyone is that there is no pressure to come back to work, and that they reinforce that I need to concentrate on me getting better first and foremost.  I still feel like I should be doing more with work than I actually am... that's partly as I know I used to be a workaholic, but it's also because I care about everyone and what's going on.

I also have fears of when I go on to half pay, but whatever happens will happen... to some extent I can't think about money at the moment, as there are too many other things to think about.  I also know that there are many people who have offered to help if I do ever get stuck, so not going to stress.

It was really good being back in the office, but it does tire me out... I think it's just the need to be awake and concentrate for more than the 5 hours I am normally awake for before I need a nap... but again, I am trying to build up strength and resilience a little bit more each day, so it is a bit of a juggling act, but it is so lovely to see everyone and get a catch up  - also to reinforce that I am not an invalid or victim 😀😀😀.

I have also lived life to the max with a good number of days out gallivanting - mum and I went to experience what an auction house felt like (we managed to refrain from bidding as it was our first time!)... really interesting and LOTS of material for my Mrs Mac Trials blog... then we had a day at Kelso races... not quite Ascot, but we came away £100 of winnings which we subsequently blew on a slap up meal 😋.

I also went to a 'Look Good, Feel Good' course where volunteers come and show people who have gone through chemo how to apply makeup, especially relevant for how to draw on eyebrows and give depth to eyes if you lose eyelashes.... it was a great course and we came away with a goodie bag which must contain literally about £250 worth of free goodies!!!

Mum and I have also been out a few random shopping days with cake and coffee, and we had a big family day out at my sister's new pad, doing some gardening and generally helping getting their new house into a state of readiness for them all fully moving up in June.

Other random stuff... I am also becoming an eBay seller of retro furniture (from sister's new house) - but after seeing how cheap things go for at auction, the chance of selling stuff on eBay may be sadly reduced I fear....

Have also managed to persuade Dave that he needs a wee break. Both from me and everything going on at the moment.  He has maintained that he is fine throughout all of my treatment,  but I am not underestimating that it's a lot to deal with. So he is going to Rome with his mum for a few days at the end of the month - it will be good for both of them, especially as we never got to celebrate his mum's 70th due to my treatment too.  So happy days all round for everyone.

I am also making plans to go down for a final trip to Cornwall with my mum before my sister's family make final move up at end of June - so fingers crossed all goes as planned with chemo treatment 😀😀😀.

The last day of this blog covers my formal appointment with the genetics counsellor.  She more or less explained everything which I outlined above, and I spoke about my research and my decision making process.  Don't get me wrong, part of her job is to assess whether I am mentally sound to be making these decisions at the moment, and equally to see if I understand risks and all the options.

I explained that I already have an appointment to see my breast surgeon which was kicked off by the formal notification from the genetics team, and I understood that first appointment is really to talk through surgical options, risks and benefits.  That's due to take place in a fortnight.

We then discussed about the ovarian options, and she asked if I wanted to wait and see about kids, delay it until I had thought further, but I said no, it is easier for me to grasp and deal with if I could get everything done in one block of time, as I don't want these things being dragged out, or for me to be like a yo-yo at work.
(And whilst I do love being an auntie, I was absolutely certain I did not want kids of my own.)

It was really fascinating actually, as if I did want kids, they can extract my eggs and take out the mutated gene so I would not pass this deficiency on... how amazing is that???

Anyway, I have asked for a referral to the gynaecology team to have the preventative surgery... that is likely to take much longer as they have a very long waiting list, given that they deal with cancers, pregnancy, other issues... which just reinforced my belief that it's better to get on their waiting list now rather than delay any further as well.

So overall, whilst it had been a lot to take in over the last 3 weeks, I am happy with how it has turned out - and I am a lot clearer in my mind about the way forward.

1. It looks like I am going to be able to choose my barbie-like body, and get a head start on my weight loss programme 😄😄😄.

2. I no longer have to go through potentially painful radiotherapy 😜😄.

3. Hubby getting a holiday with his mum to get a well deserved break.

4. I am getting to spend a lot of quality time with my parents, sister and brother plus kids.

5. Whilst taking time to write this, my banned ibuprofen has kicked in and my hip feels ok now lol.

At this rate, life really will start anew by the time I get to my 40th birthday in 18 months time!

Coming up in the next week I have another oncology appointment and I have new type of chemo... they promise no vomiting with this one!  But first ... the weekend of BBQ's and more DIY at my sister's - have a good one peeps xx

Week 16: Cycle 2, Week 2 - new friends and freebies...

Week 16: Thursday 09 March - Wednesday 15 March 2017

Started writing this blog over the weekend so I can actually play catch up and try stick to my planned publication schedule... I have been a bit busy over the last few weeks and have ended up publishing at weekends rather than the Thursday/ Friday I originally planned... absolutely of no relevance or interest to anyone other than me, but I am trying to maintain a little bit of self discipline even through the chemo fog and the dramas in order to keep me on track with my mini goals lol. 😀😀😀

So much has already happened by the time I got to Sunday of this week, that it is good to have time to take stock and reflect on what has been a really great, but full on couple of days.  (I write this at 3am in the morning after waking up after 4hrs of good sleep but actually feeling fine lol.)

Thursday (after checking to see that the summer house had survived the night - it had lol), Mum took me over to St John's where I was scheduled to have my Headstrong appointment.  This was a one to one service which saw two ladies actually take me through how to care for my balding scalp, to offer counselling on the different changes that were happening in me, and also to give me tips on how to wear different types of head gear.  It was a really excellent session actually, with helpful tips about using a baby hairbrush to stimulate my scalp and keep my hair follicles clear, to using aloe gel to smooth my scalp when it gets a bit dry.  We also discussed what happens with finger and toe nails with particular chemos, and I can now laugh at last week's worry that my nails were off... whilst that IS likely to happen further down the line, last week's occurrence was actually nothing more than my shellac manicure just peeling away naturally 😀😀😀.

When it came to trying on headgear, I wasn't sure how I would feel about it... the only kind of breakdown I have had during the whole cancer experience was when I was trying to learn to tie a scarf after xmas.  I think that's because a wig can be fun and playful, baldness is almost a badge of honour, and my skull caps are just light and convenient. So, actually I was a bit nervous about trying on stuff... but in reality it was a bit of a laugh, and it was also fascinating what you can do with different bits of material!

... It turns out that hat wise, I actually look quite cool in the crochet / woollen caps with the flowers attached to the side, but I don't look so good like a Russian-esque spy with a fur cloche...

... I laughed myself silly with the detachable fringes... but they did make me look different... maybe if I ever pretend to be a secret detective they will be good for a disguise 🕵🏻‍♀️...

... the stiff cotton scarves, whilst great for scalp coverage for the sun and soaking up sweat, are probably a bit big and bulky for my head to carry off comfortably...

... the silk and chiffon scarves are amazing - I was getting taught how to colour up my life, and turn scarves into flowers using head bands and scrunches 🌺 ...

... and my favourite overall, a jersey material one which is a bit like an elongated skull cap, but comes with matching scrunchie and looks a bit trendy 😛.

And actually I got given some to take away for free!  Completely unexpectedly, but this counselling service and gift pack are funded by Bosom Buds of Scotland, and there was so much in my pack, I continue to be overwhelmed with how much support, help and gifts are out there. I really do want to be able to give something back to all the charities when I am finished my treatment, as each wee extra bit is just such a great boost to me as I get along each day...

Honestly, my stash of goodies included 2 scarves, aloe gel for my scalp, aloe lip balm, factor 50 sun cream, hand sanitiser, a ruby quartz bracelet, a nail file, a spa treatment voucher for after chemo / radiotherapy, and so many helpful leaflets that can signpost me to things I might need, contact numbers for people who can help, and also just reminders that I am still alive and not some robot going through a medical process 😀😀😀.

Thursday night I stayed over at mum and dad's, as mornings can still be a bit wobbly for me first thing, and I expected that after a two day seminar, I might be a bit drained on Saturday... so mum's taxi came into being yet again lol.

The joys of staying over is I get spoiled with every need and desire, and I also get to see new types of tv programme that I might not pick up at home, so I got exposed to 'Code Black' and 'Prime Suspect:1973'... more shows I need to put on my watch list lol.

Friday I was all set and packed ready to go, when I was struck with sudden vomiting.  No warning, and just water, but I don't know if this was some form of anxiety about going away for a few days, or if it's just chemo.  I have also had some extra new side effects again so far this week... can I just say at this point that haemorrhoids are no laughing matter...?  Well, technically they ARE the butt of many jokes, but it's a right bugger to spell correctly... 😜😜😜.

Anyway... continued on into attending the seminar, a bit weak kneed, but determined to go regardless.... and I was so glad that I did, on so many levels.  (Mum was kind enough to say I could phone at any point if I needed rescued, got bored, got ill... and that she would be my getaway car... but thankfully I did stay the whole course 😀.)

If I start by making the humorous observation that there are always distinct types of conference-goer, and over time, I think I have played each of these characters depending on my mood and maturity on the day and depending on the subject matter... maybe this makes it sound less sarcastic and judgemental lol.... 😀 (or maybe not...)

1. The swot.  The one person on the room who has researched everything and every one, and is a bit like Hermione Granger from Harry Potter.  Puts up her hand and pronounces things before anyone else even knows there has been a question.
2. The know-it-all.  The person on the room who knows more than the expert speaker.
3. The disbeliever.  The person who actively disagrees with the expert in the room.
4. The eye-roller.  The person where it doesn't matter who is speaking, on what topic, but they breathe heavily and do dramatic eye rolling as if everything is beneath them...
5. The 'all-about-me'. The person who makes every question or subject about themselves, even down to the most personal, confidential or intimate detail.
6. The heckler.  The person that shouts out and disrupts just for the fun of it... even (and maybe especially) if they have nothing actually to say.
7. The rude talkers.  The people who have side conversations over the main speaker so the audience is distracted and can't actually hear properly.
8. The tutters.  The people who tut disapprovingly at the rude talkers, but maybe don't realise they add to the noise pollution.
9. The "excuse-me" brigade.  The people who actually try to shush other people politely by asking them to quieten down... this can go one of only two ways.... lol.
10. The bored.  The people who stare longingly at clocks, fidget, read their phones... harder to get away with in a small group btw lol.

And of course then there are the genuinely sick people who may just have piles.... 😜 (That would be me on this occasion lol...)

The content of the seminar was truly amazing, inspirational and a complete emotional rollercoaster.  Apart from learning about other girls' experiences of this life changing diagnosis, we had the most up to date medical facts, professional dietician and exercise advice, as well as master classes in dealing with menopausal symptoms, laughter as a medicine, dealing with reconstruction and also a sexual therapy class.
(That particular session started with quite an explosive beginning, that I am pretty sure we all felt like giggling and blushing teenagers again 😀😀😀!)

The whole event was full of coping mechanisms, hints and practical tips, and also about being able to challenge my own self prejudices and perceptions...ultimately what came through is that I am NEVER going to the the same person that I was.  But that is not a bad thing. 🤗

It does refer to being different on the physical level in relation to current and potential future body scars, but it is also about who I am as a person on an emotional and mental level too.  In effect, I have had a brush with my own mortality, and it does make me think about my priorities in life, what is important, what I am prepared to tolerate in my life, and equally what I am not.

Don't get me wrong, I am not going to be making any life changing decisions as I go through active treatment - aside from the fact I have chemo brain at the moment, there is no doubt that I am not able to think completely cogently about stuff, so there will be things to consider after treatment when any chemical or surgical induced changes are complete.  You never know, I may become a naked hitchhiker and commune with nature this time next year 😜❤️😀...

Going through the conference itself, I also overcome other wee barriers... I so did not want to present a 'sick' picture of myself... but after an hour sitting overheating and feeling queasy in the conference hall... I allowed myself the luxury of taking my headscarf off and just sitting on the floor against the wall... it was a lot cooler down there, and I stopped feeling dizzy and stopped worrying about what it would look like, and meant I could stop stressing about falling off my chair with a dramatic crash... 😀.

I also just 'went bald' for the entire duration of the 2 days.  Now that was clearly fine when I was with the other gorgeous ladies who had been through that themselves... but I was conscious at lunch and dinner that a few members of the public were glancing curiously at me, and there were a few whispered conversations... but actually... if they were either nosy or pitying me... actually I was ok with it, because it's not me that has an issue with being bald 😀.

It also turns out that I was the newest cancer newbie in attendance.  I think one lady was still getting radiotherapy, but most people had stopped active treatment and had gone onto the long term drug phase.... but everyone was so lovely to me, and kept checking if I was feeling ok, and making sure I had water and snacks to keep me going throughout the day 😀😀.

The venue was also amazing, but I heartily laughed when I was discovered that I had been put into Room 101... it's like they knew me so well already... 😀😀😀.

Other stories from the course involved a complaint from a gentleman who's bedroom was near the breakout room where we had been talking about the menopause... supposedly we were too noisy for him!!!!

(As an aside, I do wonder if he had known the topic, if he would have dared to come in and complain with a group of 15 menopausal women face to face... hahahahaahahah 😀😀😀😀😀.)

Interestingly, in ways of dealing with the menopause, there are the practical suggestions about cool bedding, layers of clothes, water sprays etc... and it can also be chemically controlled through drugs... but there is also a new thing out about wearing a special magnet in your pants!   Some ladies swear by them, so when I get to that stage, you never know... I might be attracting loose change and cutlery as I pass by dinner tables 😱
(The downside is that these magnets are so strong that they can wipe iPads and laptops if they are too close to your tummy... am not sure I fancy trying to explain that to work on a regular basis!!!)

On another note, I was also laughing when one of the ladies had suggested that we could collectively be seen like the Angelica Houston-led witches in the Ronald Dahl film.... you know... the one that has the line... "Put on your vvvvigs" in a strong Bavarian accent... (it is indeed the small things that make me laugh ❤️)

Coming home on Saturday night, I was exhausted.  Despite having a couple of snoozes, the two days had been the longest I had been physically been awake for in a long time, and it was emotionally draining.... and still wouldn't have changed it for the world.

Sunday was mainly a chill day - managed a quick coffee catch up for about 90 minutes with my friend Delina, but literally the rest of the day was just a pj and snooze day... having now read the spoon theory it really does make sense.... basically everyone has a set amount of spoons that equate to energy levels each day.  Sometimes you can save spoons up to have busy days, but sometimes if you use too many spoons, you don't have enough to keep going the next day.  Great analogy... and this is where I need to learn to pace myself ... and I am 😀😀😀.  Plus... the feeling of motion sickness was quite prevalent that day, so trying to remain as quiet and still as possible was definitely the order of the day!

Monday was a great day, as mum and I went back down to the new house, and helped my brother in law out by stripping wall paper.  I took the smallest room in the house, on the basis I could sit on the toilet seat and not exert myself... (that's a horrible mental picture in itself by the way, so apologies for that!), and mum took the gigantic huge drop hall way... she had finished ALL of that in the time it took me to clear a third of the w.c.... was not impressed with myself.  In my defence, it was the type of waterproof plastic paper that only came off in one inch squares top layer only, and then I had to clear the underlining paper... but talk about frustrating and literally getting under my finger nails!!  (And not that I am competitive at all about finishing stuff... lol!)

Monday night was an excellent meal out with mum, auntie and cousin - lots of girl talk and laughter, and I felt so exhilarated and awake 😀😀😀, same for Tuesday when I went across to see my book club besties, where Michelle is due to give imminent birth to baby number two, whilst baby number one just took her first steps as we were watching her... amazing day to have fun around friends and babies ❤️❤️❤️.  I also managed a fantastic catch up with the lovely Elaine too... I truly am lucky to have great friends 🤗.

Today (Wednesday), back off to the new house to do some mindfulness training (wallpaper stripping), and hopefully that means the entire house will be ready for quick sand down by Geo before he and Angie start painting it over the Easter holidays 🐣😀.

So... another week to look forward to next week... am going for a specialised personal fitness assessment which is appropriate to my stage of going through chemo, planning on a brief visit to work on Friday to catch up with my teams, I have family and friends coming over to stay at different points in the weekend, and then I have bloods on Monday and my next chemo next Wednesday too... so... as ever, onwards and upwards... have fun everyone! Xxx

Week 15: Cycle 2, Week 1 - new discoveries and busy week...

Week 15: Thursday 02 March - Wednesday 08 March 2017

Starting this week's blog I thought I would recap on some of the stories I have missed over the last few weeks due to sickness....

The best one is when I told my niece I had cancer (and my sister was telling her 2 kids at the same time as they have a funny way of texting stuff when you don't want them finding out stuff lol)...

After reminding Codie I had talked about shaving my head a few weeks previous for a laugh, she did the whole "no... you didn't....", and I did the " yes... I did" discussion, I persuaded her to lift my pink wig off my head....

She approached with dramatic trepidation, and then when she lifted my wig off, I pounced on her laughing...

I then took her through the fact that my 'spotty boob' surgery at xmas time was actually cancer, but it was all removed now, but I was going to get some medicine that would make me feel a little bit sick on some days, but longer term was to make sure everything was completely safe in my body.  Indeed... I had already had one treatment, and I had shaved my head in advance of my hair falling out as I really wanted to wear some of my new wigs.  I told her I wanted to be honest with her, hence why I was telling her now, and it was ok if she had questions about anything.  I then pointed out that I was sitting before her and I was fine, laughing and clearly still a "gorgeous drama queen 👸", to which she agreed... I did explain there would be days where I might not be able to see her, but that was normal, and we would all focus on a big family holiday maybe late summer.

Anyway, she basically told me that she loved me but she wasn't shaving her head in sympathy, but how cool were my wigs, and now I could spy on her... Kelsey and Kaleb were similarly impressed with the wigs too lol. 😜😋😛.

Mum went on to say that Codie would never have to worry about passing on any head lice now as there was nowhere for them to go on me, at which point we all had a good laugh and she asked if she could call me Captain Blue Boob... to which my mum said "no, you can call her Auntie Linz"...  but actually the kids were dead cool about it and we can now make lots of inappropriate jokes, but they also know they can ask questions about anything now... much better this way 😀😀😀.

In fact, Codie asked if I could come to her school event with her the following week, as she was proud to show me off, and I could wear whatever wig, or scarf or be bald if I wanted as she was so proud of me, and my other niece Kelsey had posted on Facebook about how much she loved me and was proud of me too.  Talk about tears in the eye moment, but in such a good way ❤️❤️❤️.  But then it was like a watershed moment, and then I felt able to change my Facebook picture to a bald pic, and everything just felt right and natural. (2 words which I would never have used in relation to a bald pic of me 4 months ago though!!!)

Then there were the stories of my fellow inmates on the wards... having been in two weeks running I can now do a neat compare and contrast 😱.  Basically I think I am just a grumpy and antisocial person now.  Or maybe I just expect other patients to deal with nursing staff with a little bit better respect. 😡😡😡

Both times I seemed to be in with people who lived life to complain, had no sense of privacy or indeed diplomacy, and made nursing staff lives miserable.  There seemed to be unrelenting demands for fresh water, orange juice, yoghurt, biscuits, toast, medication, checking of times, ringing of alarms because they want company...and being all types of incontinent and not owning up to it - in multiple common spaces (! 😭💩)... they then talked loudly to their visitors about how rubbish the staff were, and generally I was quite appalled.

Aside from the doctor that butchered my arm the first occasion (whilst apologising, to be fair), absolutely everyone was so lovely to me, and bent over backwards to make sure I had anything I needed or wanted at any time of day and night, so I just can't understand why people were so rude.  Hats off to all the staff who remained professional and polite, as I think even I had images of stabbing some people!

There was one woman who had OCPD and complained about why she couldn't get an oxygen cylinder at home.  The fact that she was heavy smoker and it would present a fire risk to have oxygen at home she just would not accept.  Then, when the smoking cessation advisor came up, she was given short shrift for just wasting the woman's time because she had got to 75 without people interfering in HER life....

Then there was the woman who refused to eat any of the hospital food, and then told her family that the hospital were starving her...

Then there was the collective group of women who were in with me the first time round when I was in distress and crying... they gathered in a group of chairs immediately outside my curtains and proceeded to have a debate about what was wrong with me, could I not be quiet, and I must be either 'hoighty toighty' if I wasn't willing to have my curtains open to join in with them, or I was about to die...

Then there was the woman who was loudly discussing about having her lumbar puncture in the bed next to me, which although not her fault, really made me queasy with the whole needle thing.... she needed multiple attempts at having the lumbar puncture done whilst IN THE BED BESIDE ME, and the gauge of the needle and running commentary really were like something out of a horror film 😔.

But it wasn't all bad... there was the 91 year old who was a fount of all knowledge, the poor lady with dementia who couldn't remember that she had fallen and why she was in hospital, the 87 year old opera singer who regaled the ward with tales of the unexpected, and the lady who was on the ventilator who sounded like Darth Vader... and then there was the phantom poo-er 😷🤢😱.  (I know I have chemo fog at present, but I know enough to know that that was definitely not me lol.)

The key thing I suppose is that they all insisted on watching crap tv at blaring volume on the communal TVs... but then proceeded to talk over the tv, and there was never any down time / peace.  It's funny for me to say that as normally I am a great talker, joiner-in, and really diplomatic... but I just wanted peace to sleep... oh well... who says hospitals are feel-good places? Lol...

Finally, the biggest and greatest news this week is that mum has decided to take a sabbatical from her work to come and help care for me...  and to give my husband a well deserved break... and also to give her an excuse to go on shopping sprees with me 😀.

All joking aside, I know she was completely stressed when I got hospitalised and could not be there immediately, she has dad's and her own health to think about too, and I was genuinely concerned about the weight of burden on Dave who is trying to do the work of 3 people as I lay lying about like a moaning zombie.  I genuinely am blessed to have offers of help from family, friends, neighbours, colleagues ... and trust me I will suck you all dry as I know the only way to get through this is to rely on all offers of help and accept them all gratefully 😀. Sometimes my husband just has to realise that too...!

Anyway... this week been a bit rough on the old body - as I had expected it to be to be honest.

Thursday I was in bed all day and did nothing other than watch my work on TV, and then watch all the twitter and news feeds fill up my alerts... I have mixed feeling about watching work things when I don't know everything that's going on... but I get the funny feeling this is going to have to be a situation I will have to get used to over the next 4 months... I don't have my finger on the pulse, and any media coverage only ever presents one side of the issue and is never in full possession of all of the facts.  I worry about my teams, their morale, what's happening, what I am going to go back to, if there is anything I can do to help... and the short answer is... there isn't.

I am not indispensable, the world does not revolve around me, but I just wish there was something more I could do at the moment. 🤔😱

Anyway... that had been Thursday's challenge up to the point where I had to give myself the tummy injection... I thought I had better read the instructions that came with it, despite my lovely nurse just saying "stick it in and plunge down"... and OMG what a feardie beastie I became!!!  It's like the opening of a Robert Burns poem 'Tae a Moose"... there definitely WAS a panic in my breastie!!!

Anyway, after getting past the point of needle in my skin and thinking I was going to pass out, I did the needful and it all retracted as expected and I got it into the sharps bin.  Even if the box does remind me of the minions, I don't think that doing this another 4 times after chemo ever really going to be my 'thing'. 😱😱😱

Thursday night, Friday and Saturday I effectively stayed in bed and didn't move much... had some quite bad vomiting again (although less than before), but was actually drinking water and juice so was keeping hydrated - the greater number of anti sickness tablets have kept actual vomit down, but queasiness and dizziness factors are up.

Other lovely side effects this time around have included feelings that some of my toe nails and nails are a bit loose, some very attractive rectal bleeding, and starting of more ulcers in my mouth.  The ongoing snot blood clots in my nose are ever present, my eyes crust over, and this time it appears my eyesight is a bit blurry first thing in the morning.  And my skin is going horrible scaly like. 🐲

Oh, and the medication tastes absolutely foul.  It was bad before, but the extra ones I am on are supposed to be dissolved in my top lip and not swallowed.  Well, they have a unique barf-like quality all in themselves, and then I have dissolvable steroids which don't dissolve, and antibiotics which tasted like I can only liken to feet!  (And no, I don't have any kind of weird feet fetish in my past which I can compare to... just before anyone asks... 👹 weirdos lol.)

Also... my sense of smell is so acute that the smell of things when I open fridge door is enough to make me feel sick, and even when friends send pictures of food, sometimes I can go a little green around the gills... it is just rubbish.

Then I also have to decide if I can take my lactulose solution or not, as if no solid food in my stomach, that would then cause stomach cramps and excess acid, wind, reflux... omg the list is endless... I now wonder if it's just easier to sleep through all of this... and this is technically voluntary!!!

Poor mum and Codie visited Saturday afternoon bearing more gifts from multiple people and cuddles galore... but I think I just looked grey and could hardly speak.  Combined with my clumpy baldness I felt terrible about the image I was presenting to Codie, but I spoke to mum afterwards and she is ok with it.... but still feel bad that she saw me like that - at least in hospital I was perky and awake!

Most of Sunday was in bed, but actually managed to get up and be vertical for food on Sunday evening which was first night I actually felt at least a little alive. 😀

Monday was a great day... felt I had completely turned a corner, and mum phoned me to ask if I was up for a wee day trip out... so I jumped at the chance 😀😀😀.

Managed to be driven to tram, get tram into town, went for coffee and a trip to bravissimo where I got a new jacket... and then I managed to (slow) walk the entire length of Princes Street, before long lunch and then back on tram direct to car.  It felt like such an amazing achievement, and it was such a lovely looking spring day, that I was just so chuffed with myself... that's the most I have managed in 5 days 👩🏻‍🎤🤗😀.

Mum was very careful and kept making sure I had rests, and when I came back I basically sat on the couch and snoozed for a couple of hours, but I was so chuffed.  I need wee milestones like this to make sure I keep active, as otherwise I am pretty sure it would be easy to sleep all day, every day.  And I refuse to do that lol.

Tuesday was a great day, as mum and I went to visit my brother in law in the new family house, and actually managed to strip some wall paper for a few hours.  My perspective on life has quite radically changed, as my sense of achievement of stripping wallpaper was probably disproportionate to the task... but I was awake, vertical, active, and felt like I was being useful.

When mum dropped me home I had planned to go for a bath, but instead just went straight up to bed at 7.30pm and slept right through until about 8am... so it was good to be active and have good solid night's sleep actually 😴.

Wednesday started off as uneventful... quick run to IKEA with Maureen as I had a notion for meatballs, and then did some errands on way back like picking up parcels from Post Office... all was going fine till I got home, and realised I needed to get something from summer house...

To cut a very long story short, the door was open, the stormy weather caught the door, and literally wrenched the door off its hinges, and I was half way up the garden when the door landed beside me, battered, bruised and properly torn 😱😱😱😱😱.

Rather than panic, I phoned mum who was due to come across anyway, thinking that if we could get tarpaulin and nails, we could make the door watertight as a temp fix overnight until weather better and something more permanent could be done.

Well, my family are like super heroes.  Both my parents came across, as well as my brother and his family, and things were going swimmingly, with Danny also putting up my new washing line and spot lights in the rain and the dark whilst he was waiting for the glue to cure as it was clamped.... when the wind caught the door again, and this time the internal pane of glass cracked... talk about comedy farce 😜.

But... in the scale of things, it was actually all sealed back up and everything is secure, but it just doesn't look pretty at the moment.  So long term I will get a new door, but Dave had a different view of the situation, whereas I think by that point, I just found it almost funny - I mean you just can't write the script for these kinds of things 😜.

Anyway it turned into a pizza party, which was then when I discovered that my sense of smell was so overcome that I had to go lock myself in the bathroom for a while, and let's just say that the end of this day was not necessarily one I wish to remember lol...

But positive notes... I had so many mini days out where I accomplished stuff, my family are great at swinging into action when there are mini emergencies, and it's an ever evolving voyage of discovery with new and weird side effects on a daily basis...

I am looking forward to next week, as I actually have my Headstrong counselling appointment, and I am lucky enough to be going to a Younger Women Together seminar at the weekend...  so much writing to do for next week's blog....

Onwards and upwards... I just keep reminding myself that a sense of humour is everything 😋🤗😁 x

Week 14: Cycle 1, Week 3 - back in hospital...

Week 14: Thursday 23 February - Wednesday 01 March 2017

Dah dah dah....

Drum roll please...

Clearly I am a jinx to myself 😜😜😜.

Literally 30 mins after I posted last week's blog, I went to bed early, thinking I was a bit cold and tired.  Literally was shaking with chills, and could not get warm at all despite fleecy pjs, fleecy socks and fleecy dressing gown.  Cut to an hour later, checking my temperature, I had exceeded the danger mark of 38 degrees celsius.  Husband and I debated the merits of ear vs oral thermometers, but either way I phoned the cancer hotline again, and got told to report to A&E immediately... 🤒.

Unfortunately, as Dave had had a dram or two whilst watching the football, it was good that my neighbour was able to come to the rescue, and the unlikely band of 3 pitched up to A&E at 10.30pm...

Despite being referred there by the cancer hotline, they didn't know I was coming.  I then got told there was a 4hr waiting time, at which point I explained that I had to be seen within the hour due to the chemo alert card...

So after 20 mins, I saw the triage nurse, who explained that she was still putting me at high risk, but may take up to 2 hrs to be seen... at which point I did mention the 1hr necessity, and then she took my obs... and whisked me through the back pronto...

Basically my heart rate had escalated to 140 (normal is between 60 and 80?), and my temperature was 38.9 degrees Celsius.  Both are danger signs for any healthy person, but for someone going through chemo, turns out to be classified as life threatening. 😱

Anyway, got seen by a very dishy nurse, whose main redeeming quality was his ability to get a cannula in my arm without hurting me, and taking literally only seconds to do it.  (Who knew a little prick with such swiftness could give such joy... ? Lol 😜🤗)

After that, bloods were taken and doctor came to see me - basically even before the blood tests came back, they were following the protocol for neutropenia sepsis.

By this point, I sent both Dave and Nic home, as I just knew I was never going to get home that night... just as well I had brought in my pre-packed hospital bag that all chemo patients are told to prepare. (Once a scout... lol)

So... just for the uninitiated, this is what I had.

I have taken the explanation from a cancer website, as I would rather people know the truth, rather than think I am either over playing it, or being a drama queen.  I list this, as to be honest I think I had gone the other way in my own mind, as I certainly did not feel near death!  (And just to clarify - I wasn't near death as it was all caught and treated early enough!!! 😀)

"What is ‘neutropenic sepsis’?
You may see or hear the term ‘neutropenic sepsis’ (also called ‘febrile neutropenia’). Sepsis is a whole-body reaction triggered by an infection. Neutropenic sepsis is a serious condition, which can be life-threatening so it must be treated urgently.
Your medical team will diagnose neutropenic sepsis if you have both of the following:
* a temperature above 38°C.
* a neutrophil count that is below 0.5.
It is also possible to have neutropenic sepsis without having a high temperature. This is more likely if your chemotherapy regime includes steroids as these can reduce fevers and hide infection. For this reason, your doctors may also carry out other checks. They might measure your heart rate, blood pressure, breathing rate, and kidney and liver function."  (I got all these done lol)

So... what happened, was that I was put on broad spectrum antibiotics and then transferred to a private room in the High Dependency Unit.  I don't necessarily think I needed the High Dependency bit, but what I didn't understand was that I did need infection control and could not be exposed to anybody else....

A good range of neutrophils (mentioned in above article) is greater than 2.0.  It turns out that my neutrophil level was 0.03.  Yup, you read that correctly: 0.03. 😱😱😱

What this meant was that I wasn't even allowed to use the communal toilet in case I picked up any residual bugs from anyone else... so I got my own personal potty in the shape of a very undignified commode... well, there has to be a first time for everything I suppose, and I am quickly learning again, that there is no personal dignity when you are sick.

Have to say though, having my own room was a complete luxury as it was uber peaceful and there was only 2 of us on the entire floor, so the nursing staff for the first 2 nights treated me like I was in a 5 star hotel!

I did have to undergo a barrage of tests, and basically there was no source of infection other than my body's own inability to produce white blood cells to deal with the chemo killing everything off.  So this illness wasn't anything to do with my eating habits, or contact with other people, or even being sociable or going to work which caused any of this, in essence, my body is not used to being sick, and didn't know how to cope.
(Even if my sister does refuse to believe that lol!)

Indeed, I felt like a complete fraud, as aside from having a high temperature (which perversely made me feel chilled), I actually felt fine.  Well, maybe apart from an ongoing issue with low blood pressure.  But I didn't really feel that, and I was lucid, I was eating, I was bored... that was until they gave me medication.

Unfortunately, although the antibiotics were fine to treat the immediate signs of my body going into a form of shut down, the root of the problem was actually my lack of white blood cells. So they gave me an injection into my tummy to stimulate cell production.  A little weird sensation but felt ok in immediate aftermath... but OMG... a few hours later I was curled up on my knees, and felt like howling at the moon.  What they had not prepared me for, was spasms at the bottom of my spine... this was the drugs actually working, but the pain was so incredible that they gave me two lots of diazepam, and then progressed to giving me oral morphine...

I literally can't find the word to describe the pain, and to be honest, if childbirth is anything like this, then I am really glad I never had kids.  I think I must be a real woose!

I think they were quite concerned about the back pain - basically I had to go get more X-rays done - there were some concerns that either I had damaged it with all the movement, or indeed, checking to see if any cancer had spread.  (Thankfully neither of these turned out to be the case - it's just a known side of effect of the tummy jag!!!!!)

So the rest of Wednesday night and Thursday nights were spent in my own room, and I had the joys of a non-working tv that I was convinced had some kind of weird poltergeist in it - it would randomly turn itself on, and then go through channels and turn itself up.... with no one touching the remote control... which is why it possibly had no aerial lead connected... it was just weird and I am glad I had my audible book app on my phone lol... it doesn't pay to overthink these things. 👹😈🎃🤖👽

The only crappy thing that happened after my back pain subsided and I was dreaming on a morphine cloud, was they had to give me another tummy jag, this time as a blood thinner seeing as I was in hospital and not very active.... and OMG that was so painful.  Indeed, having had to get 2 lots of these jags during my stay there, I now have 2 lovely bruises on my tummy from the warfarin injections only.   All I will say is that my needle phobia is really being tested, and I think I am just going to be one big bruise after a while - they are going to have to go searching for non-bruised areas of skin for new needle pricks!!!

It was great when mum, dad and hubby came to visit - having been on my own all day, I did actually feel a bit lonely.  But even they expressed surprise about how big and roomy my room was... and being a private space, I could make all the dodgy jokes, and give all the personal gross details of my stuff I liked without fear of offending anyone in the vicinity lol. (Didn't even manage to make my dad embarrassed or squeamish - hats off to him lol 😀😀😀.)

On the Friday, I had great hopes of getting home, as they had talked about moving me.... the doctor and oncologist had been up to see me and changed me from iv antibiotics 4 times a day, to oral tablets 3 times a day, and my anti sickness medication changed again to include one type which I just took once a day and left to dissolve under my gum... this was progress and I thought the end was in sight...

Alas, this was not meant to be.  Instead I got transferred to a communal ward on the ground floor, as whilst I was out of the woods for infection control, I still needed medical supervision 😢.

As soon as I got taken into the communal ward, my heart sank.  It was like a repeat of the week before... bad tv; loud and nosy old women; topped off by the staff warning me about one woman in particular who would drive me demented and I was just to ignore her... aaaaaaaaahhhhhhhhhhhhhhhhh!!!!!

Anyway... my lovely mother in law crossed all kinds of weird bus routes to come and spend the afternoon with me, and we had a great time chewing the fat, and then in the evening, my mum, my niece and hubby all came to see me too. Codie as ever had me in stitches with her stories and laughter... and this was the first time she had spent with me without me wearing a wig... so she was sitting on my bed with me and offered to 'share' her long hair with me... so she proceeded to drape her hair over my head as we took some silly selfies together 😀😀😀.

Overnight was another night of no sleep - a communal ward means lots of beeping machines, moaning zombies, and some random police presence due to a particularly volatile patient who had smuggled in bottles of vodka and was going ape... all pleasant aspects when trying to get some shut eye 😨.  Also, I was still on regular observations through the night, 'just in case'. (It really is quite hard to sleep when the blood pressure cuff squeezes your arm, and the thermometer gets shoved in your ear lol!)

Saturday morning I asked if there was any chance of getting released that day... the repeated cries of "wait and see" were starting to chafe slightly.  I mean, I felt great.  I offered to help make the beds up, go to for the very last shower so I could get straight into my day clothes, and even when the Bed Manager was looking for spare beds on three occasions I offered to leave!!!

They kept me waiting ALL day.... mum and Codie had been for the 3-5pm shift and I was still chasing the staff nurse to ask if I could leave.  I was by this point in my day clothes (unfortunately my fleecy sweater and no t-shirt - note to self for next time!), and I was hot and sweaty sitting about - although playing cards and dominoes for a few hours was good fun 😀.  My bags were packed (x 3 by this point with all the extra goodies brought in), when finally the nurse came up with the great beacon of a green medical bag.....

... supposedly I had been given the all clear, BUT that pharmacy was closed, BUT if she could get enough drugs to get me over the night then I could go home.... success!!!

Anyway, long story short, got the drugs, I looked like some kind of addict and we stopped at the calorie laden McDonalds on the way home as I sucked in fresh air from the car window... I probably really did look like some kind of weirdo, but being stuck in hermetically sealed hospital definitely addles your brain! 👹

Unsurprisingly, I slept on Saturday night... and Sunday I felt so great I decided to do a quick run into the office to drop off laptop for further surgical work on it by IT.  It does not make for easy remote working when things stop letting me dialling in - am sure it's like a conspiracy lol 👀.  All was fine and I know I have that impetus to always be doing something... but I was free!!!  I also went shopping for comfortable chemo clothes.  Basically big Bridget Jones pants for when tummy bloats during week 1 with the drugs, and comfy trackies to wear when lounging.  Any sense of style, panache or  sense now going out the window as I now just want to be comfortable.... OMG I am descending into middle age already 😱😱😱😱.  (I jest - I am fine with it all. Perspective rapidly changing these days lol... and Asda sells clothes for much cheapness!)

Monday morning was my planned pre-chemo blood with my favourite phlebotomist... she was exclaiming over the sad state of my arms so I had to give the 2 minute run down of doctor butchery and nursing saviours 😀.  Thankfully these bloods got taken just fine, and I said goodbye in my usual cheery fashion - honestly, the whole process takes less than 5 mins in and out including making the next appointment!

Monday rest of day was quiet - fair bit of catching up on sleeping, although also had time to help neighbour with interview prep... as well as catching up with my brother and sister... my mind does need to be kept busy 😀😀😀.

As a point of note - since starting these shenanigans with surgery before xmas, I have now listened to all of the 7 unabridged Harry Potters... in some places multiple times if I have drifted off lol.

Tuesday was a quiet day - perversely I felt shattered - but I think this was the usual apprehension in preparing for chemo.  I mean... Cycle 1 hadn't gone too well, had it?  Although alas - hospital food previous week had made me put on 2lbs??? That clearly goes against the recent articles saying the hospital food terrible and non plentiful - I have never eaten so well ever.... and that's even with the article saying that St John's had one of the lowest cost bases!!!

Also... today was the day my head really really hurt with hair falling out.  Proper pain when even placing my head on a pillow... I really do look the dying pheonix from Harry Potter (right before it re-spawns btw, not being gloomy lol).  It's just really coming out in patches now, and I am definitely moulting more than my dogs ever do, and when I went for a bath, I hadn't realised that I had left hair from previous bath still in it!!!
(Sorry that seems really minging, but I don't generally leave tide marks when I go for baths, but it was from where I had leant my head on the edge of the bath, it's like being at the hairdressers and seeing all the fuzz on the floor and on the nape of your neck... there was just a lot of it...!)

Anyway... early to bed, as Wednesday was round 2.... and I think I was definitely in the mood for fighting with anyone and everyone who would have said a cross word to me... sometimes it pays to switch off technology, pull the duvet over your head and not speak lol 🥊

And... it all went fine.  Cannula went in fine, drugs were mostly fine, and LOTS of preventative drugs through the IV system.  Had to bathe my arm in warm water to help fluff up the veins, but they came up a peach and it was all over in 2 hours.
2 bags of drugs to take home with me this time... as well as my own sharps bucket.  The only thing that is likely to induce me to vomit with fear.  The jag I had to have in hospital I need to do 24 hrs after chemo exactly... and I have to give it to myself.  Really... the whole phobia definitely being tested to its limits, but will grit my teeth.   Or maybe pass out.

Got some photos of my chemo drugs - my word there ARE a lot of syringes that go into me.... no wonder I always need to pee after treatment lol.

Came home and slept for a bit - adrenaline only goes so far these days... made rookie mistake and took a steroid before bed so woke up in the small hours... but touch wood... so far so good.

Still trying to see the positives... tomorrow I get to learn to inject myself.  Either way... going to be a learning day.

Loads more stories even from last week - but will save them till next week... I always think I write too much lol.

Till then peeps... 😀 x