Week 13: Cycle 1, Week 2 - taking stock...

Week 13: Thursday 16 - Wednesday 22 February 2017

So... just to avoid jumping straight into continuing where I left off last week, like any good soap opera, I have decided to take this episode off on a parallel storyline 😀.

I have realised it's been a few weeks (actually 5 😮) since I did a stock take of my current status of pains and ailments, so here goes.... done in my own imitable style lol... you have been warned 😋.

In terms of where I am pain wise / other updates this week...

1. Boob is still blue.  Even after surgery 8 weeks ago.  And despite continual daily washing in the shower lol.  I am now just disappointed that it is not luminous.  Would save excessively bright lighting to read at night if I could have used it as a torch... (just joking 🤡🤡🤡)
2. Both scars healed completely and I am now discovering the wonders of Bio-oil... if you believe the hype, it will make my scars magically 'disappear' 😀.
3. My lymph node scar actually does show a 'divot' out of my sideways profile under my arm.  It doesn't bother me - if I lose weight, maybe the rest of my skin / size will shrink to match.... and if I don't, then it will be one of those badges of honour I will wear with pride of my survival 😀😀😀.
4. My left arm (lymph node one) had been feeling slightly better, but it appears that the chemo may now be attacking the healthy repair of nerve endings... so actually it is more tingly than before, and to actually touch it can hurt sometimes... it's a bit like if I run my hand down whole arm, the whole thing is like getting mini electrical shocks... so the quick answer is for me NOT to run my hand down my arm lol...
5. Still having issues unscrewing some jar lids with my left hand as it requires too much effort. 
6. Because of the nerve damage, I am having some issues fully raising my arm above my head just now, and weirdly, sometimes my elbow doesn't want to straighten out either... am hoping that all these effects are temporary, as otherwise I am going to start looking like some kind of weird Quasimodo creature!
7. Have a constant runny nose, which is more just an annoyance than anything else.
8. I have discovered that my skin is drying out quite quickly as a result of the night sweats, and the chemo itself.  For the first time ever, I am now actually regularly moisturising my skin all over - I should really have made more of an effort before I got to this age 😜.  On the upside, the moisturiser is working in the main - but I have been offered 'cow udder' cream when things start getting worse.  (Not a word of a lie btw - it was discovered by vets massaging cows udders... and it's quite expensive supposedly!!!)
9. Had to cut my lovely long nails down short... it feels random to say this, but even my long nails touching anything or texting actually sent little flashes of pain up my fingers - this is neutropenia - nerve pain.
10. Started to have on/off back pain.  Having asked the support groups, this is quite common as it's the cells in my bone marrow trying to replenish themselves after the chemo attack of last week.  I will of course have this verified when I go back to oncology for chemo next week... just to have the facts lol.
11. Clearly last week's blog documented the various side effects of the chemo plus viral infection, but generally I am now keeping in good health, although I have discovered that if I go too long without food, my body physically starts shaking. It's not a good look.  And I think I might get cranky too lol. 🤔
12. Sleeping patterns are varying - if I get between 4 and 6 hrs sleep a night that's good... but if I get really tired through the day, I tend to have 15 minute power naps without much warning lol.
13. Have started having much changed taste buds, and my mouth starting to dry out and feel quite sore.  Discovered that trying to eat something with chillies in it, really not a good idea 😢.  Normal mouthwash and mint imperials were also too strong for me, and gave an unfortunate burning sensation, so I will speak to hospital when I go there next week, but in the meantime I have ordered special mouthwash and toothpaste via Amazon, at to be honest, quite eye watering prices - £10 for a small bottle of gentle mouthwash for people undergoing chemo and £7 for the associated toothpaste!!!
14. Perversely, since my head shave, noticeable fuzz had already grown back in the 9 days before I had chemo.  I can't decide if my non chemo hair is almost blonde nowadays (I was mousy brown), or if it is actually coming back grey (silver highlights) naturally... but all this has shown me is how little hair I actually do have physically growing out of my scalp pre- chemo!
15. My eyes are starting to get quite dry and crusty at times, and a few eyebrow hairs are now starting to come away when I cleanse my face or if I itch them (they are quite itchy - am guessing this is the beginning of the hair follicles disintegrating).
16. My arms are starting to wear lovely shades of bruising at different intervals and spacing up both arms... the rest of this blog will explain why later lol.  But in essence, I don't think I will be wearing vest t-shirts by choice anytime soon 😜.

I think that's covered everything... after discovering the joys of lactulose solution (better than laxido or fybrogel in terms of taste, quantity required and quality of product, I can now give an independent review lol), there are no issues with bowel, bladder or stomach thankfully 😀😀😀.

My appetite is to do little and often - so think I am ok in that arena too now.

So.... returning to the big drama that was the tail end of last week... the thing to remember as you read this - I am absolutely fine now, and can actually look back and laugh. 👌😜❤️

Thursday was not a great day.  And that may even be a slight understatement.
(Yip, sometimes even a drama queen like me can be understated lol 😜.)

After a horrendous night, and literally feeling like I could quite happily roll over and die with the head and back pain, sheer exhaustion, not being able to keep anything down, the dry retching, the whole body and muscle pain from being sick, the chills and the fevers, the swollen stomach, the bloody snot clots from my nose....  I phoned the cancer treatment hotline. I also managed to stand on my scales to note that I had lost 5lbs in 3 days... I was pleasantly pleased for my diet, but clearly that was not what the hotline wanted to hear.

They slightly misrepresented my symptoms to the hospital, as I had explained my urine was still pink from the red chemo....that translated in their message as being blood in my urine, but aside from that, the service worked fast, and I was asked to attend the Acute Medical Unit at St Johns, preferably within the hour in case I needed emergency treatment.... keep that phrase in mind, when I then explain what actually happened in reality... 😜.

First off, the unit is located on the far side of the hospital, on the second floor.  I had to stop for a rest half way there as I was quite knackered.  Following the signs in the hospital, the name of the unit changed twice as we progressed along the corridor, and then there was no signage apart from Ward numbers once we actually got onto the second floor.

Once we worked out where we actually supposed to be, we got buzzed in and asked for my referral letter.  Twice.  Despite me saying that it had been via the cancer hotline just an hour previously.

They also asked I was there for EMA or PPA unit.... at which point I think I maybe wanted just to stab someone... 🤐😢😫. I mean wtf is with all the changing acronyms for someone who really just wants some kind of magic pill to make her feel better???

Then I got ushered to a bed, and what began as a very long day of testing and chatting began.

First off, after about 20 mins, I was seen by my key nurse.  So I explained all my symptoms which I had explained on the phone, and then got my blood pressure, temperature and weight checked.

(At this point I sent Dave home - I had an impending spidey-sense that I was not going to be getting out in under an hour... and there was nothing for him to do other than pace the hospital waiting for me.)

After about another 20 mins, then the doctor arrived and asked me to tell her all my symptoms.  At which point she took more notes, did the listening to my heart, chest, liver, kidneys, and did that hollow tap thing on various parts of my body.  She then did the feeling and prodding all over my lower torso, and actually it transpired I had a really tender area over my gall bladder.  Discovered that when I nearly hit the roof with the pain of her prodding her fingers in deep, whilst asking me to breathe in....

Anyway... after this she said that she wanted to send me for chest x ray, possibly an ultrasound, do a urine sample, do a mouth swab and get me fluids, anti sickness and painkillers, but the immediate thing was to get blood tests done asap.

So with her lovely Irish brogue, she then proceeded to butcher my arm.  🔪🔪🔪😰😰😰

She took 3 attempts (and about 20 minutes) at getting the cannula in, and it was so painful, that literally I sobbed in pain, and my whole body was convulsing.  I tried to tell her that it didn't feel right - even through my fear of needles, I know when the cannulas are in, as I have had quite a few in my time.  However, she kept stroking my arm, and apologising for hurting me, to the point where I think she was upset herself... so I then apologised to her for being so bad at getting needles in my arm... it was a vicious cycle.

However, when she then broke the news to me that she couldn't get blood out of the arm she had just knackered, and that was only going to be good for putting things into my arm, she then asked if it was ok to take blood from the other arm, but this time with a smaller needle... at which point I was really quite anxious... which maybe didn't help of course.  But genuinely, so far in all this process and having surgery, I have never had any issues with anyone getting blood out of me, but this poor woman took yet another 15 minutes and 2 different locations to get blood out of my left arm... and physically drawing the blood was for the first time excruciatingly sore.

With the benefit of clear thinking now I am better, I am guessing that me being dehydrated and having chemo in my veins, as well as nerve ending pain will have contributed to all of this drama... but genuinely I don't think I have ever cried so loudly, and been in so much distress ever before. 😢

Anyway, once the torture was over, the curtains remained closed around my bed as they had decided I needed some privacy to calm down.  My cell inmates were an interesting and nosy bunch...

I should point out at this stage, I was knackered from no sleep, really splitting headache, and I had some sensitivity to light.  And I was dead dead grumpy.  So having noisy and tactless fellow patients did really not improve my humour.  And there was rubbish playing loudly on the tv too.  As I said... really 😡 lol.

Then... after about another 25 mins, the senior doctor came in.  She also asked me to give her a rundown on my symptoms.  Turns out there was some concern I may have gall stones, so I had to go through more prodding and poking in the tender area... and yes, it was still sore 😢.

Anyway, she also went onto explain they were very worried about me not being able to keep anything down, so she needed to get the fluids into me, and I would have to be able to eat food and demonstrate I was not going to be sick before I could even think about going home.  She also couldn't prescribe any drugs until they blood test results came back 😢.

So I offered to try tea and digestive biscuits.... but just in case, I also asked for a sick bowl...

Anyway, I have to say, that things started moving rapidly at that point - the senior registrar came in to see me, as did the on-call Oncologist and the pharmacist - all separately.  At each point, I had to reiterate my symptoms, what drugs I had been taking (none for 2 days by that point) and which point I had practiced it to perfection and could cover it off in 5 key bullet points.

Basically they all agreed I needed anti sickness meds ASAP, and that going forward my chemo treatment needed to include longer course of steroids to help sustain my body, permanent anti sickness tablets through 4 months of chemo, and possible pain relief that would not interact with the other stuff.  Oh, and the lactulose solution as all these tablets together have the added bonus of causing constipation. And we can't have that now, can we? 😜

Anyhow, I was finally allowed some drugs.  Oral tablets, as well as through the cannula... 😢.

The tablets were fine, but I knew as soon as the drugs were going into my arm, there was something wrong - it was really painful going in.  Like liquid fire.  I did mention this to the nurse, who asked if the doctor had got the cannula in first time... so I had to say no...

Anyway, she said she would keep an eye on it, and actually put an extra bandage over it so I didn't have to worry about keeping my arm rigid.

So...  next thing was that I was whisked off in a wheelchair for my X-ray (speedy jump the queue service if you are brought from a ward 😀).

Unfortunately I had missed lunch by this point, but Dave had swung by with rescue sandwich and lucozade for me... but interesting that I was supposed to eat before I got to leave and I didn't even get hospital lunch to test the theory!!

Good thing was that I managed to keep the sandwich down, but that wasn't quite enough to prove me well.  The senior doctor came back and said that although absolutely the best place was for me to go home to avoid any extra infections from hospital, I just needed to persevere and get iv fluids in me... so that took a wee bit longer to arrange....

In the meantime,the ECG technician came and ran a trace on me, and the on duty senior doctor had changed over, so he also came by to ask about my symptoms and tell me what the next steps were.

On good news front, my bloods were fine, although my lymphocytes were a bit low and they thought I also had a viral infection.

Anyway, he then asked if I had any questions, and I said to him that my arm was really sore with the cannula in... at which point he looked at my arm and exclaimed that the iv fluids had to stop immediately (they had been running for over an hour by this point...).  Turns out my cannula was not in right, and all of the iv fluid had gone into my tissue as opposed to my vein, and my upper arm had literally doubled in size without anyone noticing.  I mean, I don't normally like to be petty and say "I told you so", but in this case I really felt I merited the right! 🤒

Anyway, the offending article was then quickly removed, and the relief was immediate. Happy days!!! ❤️❤️❤️

The only downside is that I then needed to lie flat with my arm elevated for a few hours until the liquid could start draining away and they could check for any adverse reactions.... so... realised at that point I would be staying for dinner....

After a few hours, I was feeling great.  😊

All the drugs had actually kicked in, I no longer looked grey, I felt I could even smile at my fellow inmates... right before I put my headphones on, put my skull cap over my eyes and listened to my audio book lol.

The only downside is that I found it really difficult to use my phone as my right arm was elevated and had to stay still, and it takes ages to text anything with just my left hand... I feel this may be something I need to develop given that anything they need to do to me will generally be on my right side due to dodgy lymph glands on other side...

I ended up having 3 course dinner in hospital, and it was quite tasty - I avoided the tapioca and semolina though.  Reminded me too much of what I had seen in previous 24hrs!

As soon as I saw the magic green bag with my drugs I knew I was on the home stretch.  The senior doctor came and gave me a hard look and asked if I was sure I was not going to be sick... and I basically I lied and said yes.  To be truthful I think 3 courses had been a tad over adventurous given I had not eaten properly for a week, but there was no way I was planning on staying the night.  I mean the staff are all lovely, but I just wanted to go home....

Anyway, finally got home at 8pm, 11hrs after arriving at the hospital for emergency treatment required within an hour lol.

Come Friday - I was a brand new woman.  Felt like I could wear my pants outside my trousers, and maybe don a small cape. 👩🏻‍🎤😀. Oh the miracle of drugs 😀😀😀.

I was up and dressed by 8am, having had a great sleep for 6 solid hours, had breakfast, went a wee walk with the dogs (with a few breaks for energy levels), and kept all my food down, and then played catch up with all the messages I had received and basically ignored over the course of the previous week.

Saturday and Sunday were the same!  Coffee and cake out with the neighbours one day, and then lunch out the next...

The only hiccup was that the completely amazing anti sickness meds can cause insomnia.  And they have given them to me, a serial insomniac at the best of times. Oops.

Oh well, I am pretty sure we can get a concoction where everything will balance out eventually...  😀😀😀.

Rest of this week was excellent as I got my work laptop kick started, got back into the swing of things and even made it into the office to report for duty.  Happy days... all's well that ends well this week.

There were a couple of other stories to share, but will save them for next week - have just realised that I am writing a novel here... but hey, this was started as my therapy activity and record of events... if no-one reads this far, then I am cool with that lol.

Just need to keep reminding myself... I can get through this.

And I most definitely will.

Super Linz 👩🏻‍🎤 - special power: humour, sarcasm and resilience lol x

Week 12: Cycle 1, Week 1... it's been a rollercoaster...

Week 12: Thursday 09 - Wednesday 15 February 2017

Start of this week was great - having prepared for all possible side effects, the first day post chemo was a breeze 😀😀😀😀😀.

I made sure to try eat little and often (mainly cheese and crackers, pringles and rice pudding lol), drank lots of water, took my steroids all before lunchtime to try avoid sleep deprivation, chilled out, watched tv, took dogs for a wee strolls, napped and everything was great.

Most of what I felt was just a bit dizzy, but could live with that.  Indeed on the Thursday I had to nip back to the hospital to pick up my insurance form, that I even had a craving for McDonalds, and my lovely friend and neighbour Nic drove me like a regular girls' lunch out!

What did happen, was that about 6pm my body just slumped.  Like my batteries had ran out.  Couldn't lift my head off the pillow.  Wasn't a bad thing, just a really weird sensation.
So... I went with my body and just slept... see, I can follow doctors orders lol 😀😀😜.

However, that night the real hot and cold sweats began.  But weirdly my core temperature did not vary much between 36.8 and 37.2 degrees.  My skin temperature on the other hand... well let's just say I didn't realise your skin could be polar opposite temperatures at the same point in time! 🤔😜😷.
(I do like my gadget thermometer though lol.)

What this meant though was that I did not get a good night sleep as I was so uncomfortable.  Just as well I slept alone as even the dogs didn't want to be beside me that night!  What I didn't realise though, was that this was going to the pattern for all week.... and broken sleep means harder to recover.... 😢.

Friday and Saturday I just felt hot and a bit queasy - thoughts of food were ok, but I didn't actually manage to eat that much.  On upside, sure this will have done wonders for my diet... but with hindsight, I should have realised I should have logged stuff better.

Saturday and Sunday I also felt really grumpy - mainly due to lack of sleep, but again, hindsight tells me I was getting really dehydrated as I had developed a pounding headache, and you are not supposed to take paracetamol or ibuprofen with chemo in case it masks a fever... so had to keep double checking my temperature as I then desperately took 2 paracetamol for the headache....

Rolling around like a moaning zombie in bed for a couple of days is never going to be good for anyone, but I just felt really quite miserable.

Sunday was the day I got told that I may be emotional as a come down from the steroids, so was trying to be uber careful not to over-vex myself or fall out with my husband... not sure I really succeeded on that front, but didn't get teary until Sunday night, when basically for the first time I didn't think I could do this.

I was so distressed about the pain levels, and taking this medication which makes me feel sick voluntarily, where my whole body aches... I genuinely thought about quitting and not going back for the rest of the treatment.  I mean... surgery got it all out, right?

However, after about half an hour of my own pity party, I washed my face and pulled myself together.  I always knew it was going to be tough, and actually, how naive had I been to think that preparing for being ill, and actually being ill are two completely separate things???

Now I know I am probably being harsh on myself, but I genuinely expected more from myself.  But maybe that's half my problem, but also half my strength.  I do push myself, not because I am a glutton for punishment, but because I am focussing on the end goal 😀.

Anyway, come Monday I went for yet another bath to ease my bones (doesn't work btw lol), and I basically had yet another day stuck in bed.  Didn't have any energy to get up apart from to go to the toilet, but the problem was that my body was weak, but my mind was racing.  So tried to read, but couldn't concentrate on words, so listened to John Cleese on audible instead.

Food had progressed to ice lollies, frozen grapes, and still with cheese and crackers... but I have now completely gone off scrambled egg and all my green teas.... which is tragic 😫.

Tuesday I stayed in bed and listened to Carrie Fisher - actually didn't really enjoy that one.  Maybe because I kept drifting off, I am judging it too harshly.  Had a lovely surprise delivery from my 2 neighbourhood girls.... flowers and a teddy bear to cheer me up... in what was actually a really crap day, that really cheered me up 😀😀😀.

Wednesday still not having had enough sleep, I decided to go back to audible Harry Potter... and can I just say that although I had had difficulty in getting out of bed for several days due to fatigue... OMG I learned how fast I can move when the vomiting showed up.  Genuinely never thought I would be seeing that beast again, as I had escaped all week and was impressed with the anti sickness drugs.

The issue was that I was told to take them for 5 days and stop.... I didn't take on board the fact that actually I could have just kept taking them...doh! 😫😫😫

Additionally, new pains were starting to develop, including that old wives favourite "a chill in my kidneys", and blowing my nose gave me light nose bleeds.

Anyway, although I am cutting into next week's blog, basically overnight on the Wednesday, myself and the toilet bowl became close friends once again, and early hours of morning I tried to eat crackers in case that would help settle stomach.  It didn't.  So I phoned the cancer treatment hotline and got referred to hospital for assessment.  Without spoiling next week's content... ultimately I turned out to be fine. 😀😀😀

Anyway... lessons to be learned from all things this week... I know what to expect from chemo going forwards, I know the general balance of how my moods will be, and I need to make sure I record food and drink I am taking in to make sure it's enough.

On a slightly different tangent, the online groups are good at making jokes at our own expense.... although I started to worry when one lady wrote, "Sometimes a fart is not just a fart ladies....".  This started a whole new level of paranoia in me.  I mean, I am a lady.  I don't do that at any point in time... and to think it may be more....???

That will be a bit crap then... (yip, ALL poo puns are intended lol).

To be fair, I have not been afflicted that way, but makes me think that maybe i should start investing in Tena Ladies or something?  Or maybe invest in a butt plug?  Or gastric hose?

Oh well, on all of those bum notes, I leave this blog, and leave the hospital trip tale till next week...

But be assured I am fine, back in good humour and hoping that this upcoming week will be better.

I have no immune system this week coming, and my hair should fall out... so will document with interest and share all next week lol. 😀 x

Week 11(b): Chemo and gene testing...

End of Week 11: Wednesday 08 February 2017

Well this was the big chemo and gene testing day...  I was both curious and nervous at the same time.  I was also actually upbeat, but quite calm within myself.  Go figure lol.

Mum and I headed across to Howden Centre early, to grab a cup of tea and to complete the genetics questionnaire.  Trying to work out everyone on both sides of my extended family who may ever have had any type of cancer, how old they were when they were diagnosed, where they were treated and if / when they died was really quite taxing - especially when it went back to my great grandparents generation if possible!!!

Anyway, form duly completed (got to love a good bit of paperwork!), we headed to the genetics appointment.  Randomly it was being held within the maternity unit at the hospital.  I guess like most places of work, trying to book meeting / consultation rooms is at a premium, but I am definitely getting to see more departments of the hospital each time I visit 😀.

We were met by a Genetics Counsellor and trainee.  They asked me what I understood of the referral, and were pleasantly surprised that I seemed to know so much.

(As an aside, why do people ask you what you know before they just explain stuff?  Is it a test?  Is it to save time? Is it a comfort factor for them to see how much they have to / are able to tell you?  As another aside... they clearly don't know me, my research and 'need to know' everything tendencies lol.)

So we ran through the whole scenario, and what the whole process was for.   Basically, given my type of cancer, and my age, I meet the criteria for being tested for specific genes.  Compiled with my family history, they may look for additional genes with the whole purpose of establishing if there is any genetic mutation or distortion.

The reasons for doing so are many.  First off, it may give a definitive reason as to why I developed my type of cancer.  Supposedly I am too young to be have been in receipt of any potential environmental factors to have built up in my body to cause cancer, and they already know it is not hormonal.  However, equally the tests may come back that getting cancer was just one of those random 'luck of the draw' things that happen in life.

Secondly, if anything does come back from the test, then it may impact on my cancer treatment plan.  Thirdly, it may have potential implications for my family members.

Of course, the testing itself may come back as negative for anything.  The counsellor was quite clear in saying that they only find a positive result in about 15% of cases.  Most of the time the results are a distinct negative for any mutations, and in some cases they are inconclusive.  What that means is that sometimes they can find altered genes, but don't actually know what is altered, or why, or what it does.   If that turns out to be the case, they do not make any medical recommendations on my treatment plan.

The counsellor then asked how I would feel about certain aspects... effectively what they are going to be looking for is the BRCA 1, BRCA2 and RAD51 gene.  These are genes which may show a pre-disposition to both breast and ovarian cancers.

I was quite upfront and said I had already researched the various possibilities, and aside from potentially ending up with a barbie-like body, I would opt for elective surgery to remove everything.  This is on the basis that I never want to have to go through chemo again, I want to minimise the possibility of ever getting any other cancer, and I want to be able to live the rest of my life worried about the possibility of recurrence, or secondary cancers.

I was also honest and said that I was very pragmatic about these things, but in life as I am at work, I take a risk based approach to these types of thing.  That means that if I ended up having any additional surgery, I was still hoping to be sliced, diced and sorted within the next 12 months.

Although mum did point out that clearly the results may still be negative, and the counsellor did agree that we were talking hypothetically, the counsellor also did say it was good to walk through all the possibilities now when I am well, of sound mind, and not having to make snap judgements when I am potentially under the sick feeling of chemo.

Don't get me wrong.  I also know perfectly well she was also assessing if I was potentially loony, just after free body morphing operations free on the NHS, attention seeking, or indeed going to crumble at the first sign of trouble.  Hopefully I am none of them.  But who knows what she wrote on my notes afterwards...

Anyway... after all of this, we then did a family tree - which she drew out long hand on graph paper with various symbols - really fascinating to watch actually.... although throughout it I had to practically force her to take my completed questionnaire as she is clearly a visual person, rather that a form person lol 😜.
(I can swing both ways in that regards, so actually I am easy either way lol.)

The whole session was absolutely fascinating... aside from the fact I also learned my mum had been stabbed as a child!  Will definitely return to THAT story at a later date!!!

After all of this chat, I was then formally asked if I wanted to proceed with the gene testing.  Although I couldn't actually work out who wouldn't proceed at this point, I gave both my formal consent and a small vial of blood.

Interestingly, they have explained that looking for mutations is a bit like looking for a spelling mistake in the entire Bible, so I am not quite sure how this is all going to work out, but I guess she was trying to manage my expectations.  Results will take up to 12 weeks and she will phone me directly with the results.  (I am impatient and I don't want letters going astray in the post lol.). She then laughed and said if she had not contacted me by then, I should phone to chase her... but she just had a feeling I had already mentally scheduled the call in diary anyhow... see... she was getting to know me 😀😀😀.

After this session it was a quick bite to eat before chemo session - supposedly it's good to eat and drink before hand, partly in case you are sick, partly to help things circulate faster, and also fluid and warmth keeps your veins plump and easy to access 🤔.

Anyway, entering the chemo unit, I clearly caused confusion by shaving my head.  They didn't recognise me lol.  However after 5 mins, my lovely nurse came out to get me and take mum and I through to the lounge area.

It was actually really busy - more than the planned 5 in for treatment, so it was a bit of a squash.  Once I got settled, I took iPad, colouring book, mints, water and tissues out, and mum sat beside me as my blood pressure, temp and weight were all checked. I got to reiterate my name, date of birth and address on multiple occasions, but that's because each drug has to be dispensed and cross checked - hats off to the NHS for the thoroughness though!

I have to say, the worst part was actually getting the cannula into my arm. I cried 😢.
My veins were really good and plump, but the cannula going into the vein over the boney part of my wrist was REALLY sore.  There was no brave Linz at that point.

However, once it was in and taped into place, I calmed down and even got mum to take a picture to mark the big occasion.  At this point after 10 mins I was already roasting hot, so the skull cap had to come off to let my temperature cool a little - the baldness thing really good for when I overheat!!!
(With hindsight my temperature had gone up with the whole fear / pain of cannula thing... but I will try get over that next time.)

Then my nurse came back with a tray full of LOTS of syringes.  And I mean LOADS...

First off was a flush through for my veins ~ 5 mins
Second one was the steroids ~ 10 mins
Third one was anti sickness ~ 10 mins
Fourth one was chemo drug 1 - fluorouracil ~ 15 mins
Fifth one was chemo drug 2 - epirubicin ~ 25 mins
Sixth one was chemo drug 3 - cyclophosphamide ~ 20 mins
Seventh one was another flush through ~ 5 mins

Now in between these times, my nurse also had to deal with a couple of other patients who were having either trouble finding veins, or dealing with one poor man whose nose would not stop bleeding...  but I have to say the whole nursing team are fantastic.

Also, between my mum sitting playing cards with me (I think she let me win a lot lol), getting a foot massage, chatting to the nurses and the lady next to me, actually the whole experience went by quite quickly.  I do think I *may* have been the loudest patient they have had in that day, but I think I can say that everyone was kept amused with various shared jokes and anecdotes.  (It was not that I ended up doing a stand up comedy act btw, even despite my theatrical leanings 😀😀😀.)

The chemo itself was not painful.  Just weird sensations. My nurse was really good at taking me through each one as she was injecting it, and telling me what to expect.

So the chemo 1 drug made me go a bit flushed in the face initially but that passed after about a minute, the chemo 2 drug made me feel slightly dizzy and like I wanted to go to the toilet (it irritates the bladder and turns pee pink!), and the chemo 3 drug runs cold, and produces a horrible medically, metallic taste at the back of my nose / throat - quite unlike anything I have tasted / experienced before.  But that's where the bags of mints came in handy 😀👌.

After the treatment had finished, I did the first thing everyone does... went to the loo. And yip, it was bright pink 😜.

I got a goodie bag of drug to take home with me - steroids and two types of anti sickness drugs, as well as a large box of laxative solution... it's a sexy combination, but hey, it's all going to be worth it in the end.

I actually felt great, so went off at a jaunty pace back to the car after wishing everyone a merry goodbye and thank you... indeed felt so good, I even persuaded mum to go via Marks and Sparks for some tasty food for me...

Into the evening, I also felt completely wired... that will be the steroid effect... but did mean I got to see many episodes of the Gilmore Girls.... aside from that... nothing much more to add from my first chemo experience... it wasn't as bad as I had prepared for, so long may that continue!

First one down... only 5 more to go 😀😀😀😀😀.  Till next week peeps x

Week 11: Preparing for chemo - 'take two'...

Week 11: Thursday 02 - Wednesday 08 February 2017

OMG... having re-read last week's blog I promised myself that I would not be a raging banshee this week lol. 😜

So will be light, breezy, and observationally interesting (well, that's my aim anyhow lol).

Covering the last week, Thursday I managed to get myself out of bed, as I had got a phone call to say my new wig was ready... so went in to choose between shades 19 and 20... and basically I went for a slight barbie-doll look 😀😀😀.  It's long, it's highlighted and it looks ok whilst wearing my glasses lol. (An important requirement if I can't wear contact lenses and may end up like Mr Magoo!)

This was actually the first day that Dave had been vertical too - basically we had drawn up barriers in the house and it was the equivalent of wearing hazmat suits, whilst living in separate sides of the house.  The poor puppies had such divided loyalties about which one of us they wanted to be beside (but I think I won more of the attention though lol!).

The effort of a day trip out fairly took its toll though, and by Thursday afternoon I was lying back on the sofa, groaning like a zombie - headaches, shivers, mood all over the place - the whole thing was just ridiculous.  However in an effort to keep busy and awake, I have managed to get through another audible book this week - woo hoo for book club homework lol. 🤓

Friday we went over to see my mother in law as it was her 70th birthday.  Had great fun holding my new baby niece -  it was even funnier when she pooped on Dave - through her babygro - who knew there could be super poo????
(Perversely that just made me laugh - but clearly I was in desperate need of a good laugh - bad Linz lol 😈.)

Didn't feel very well on Friday afternoon - ended up realising that whilst I am probably  over the sickness bug, I am now suffering from a double whammy of withdrawal symptoms from coming off the contraceptive pill.  😫

To set the context of why I include this here, is that because I am about to start chemo, I was advised to stop taking any hormone-linked medication... well that all seemed a good precaution, even though my cancer is not hiormone related... so I did as the surgeon and oncologist had recommended.

What they failed to tell me what a depressed, manic, upset, headachey, bloated, anxious and generally sick person I would suddenly become!

I can laugh with hindsight now that I know WHY I was feeling like that... but at the time, I could not understand why I was so teary!  I thought I was dealing ok with my diagnosis and treatment plan, but all it ended up it was 'just' the worse case of PMS ever 😨😨😨.

(Without making anyone blush or be ill - basically the pills I have been taking for a long long time meant I never really had mood swings or anything else to do with having periods - only weight gain about 10 years ago - I thought they were wonderful!!!)

Anyway, once I understood that, I actually felt ok.  It's not cancer stress.  Just me being hormonal.  But oh, what deep joy for when chemo brings on the menopause... I can now possibly understand talk about women flying into murderous rages.... wonder if that counts as mitigating circumstances in a court of law?  Hmmm best not find out I suppose lol. 😜

Saturday saw me home alone and going into deep cleaning mode again.  This was partly to clean the house of the sick bugs, but also because one of my poor pups had also been ill.  Very ill.  Very messy.  🤔💩🤢.

So I spent 6 hrs (yes 6hrs!) cleaning my carpets.  And then another couple of hours changing the bedding in all rooms.  And disinfecting all door handles and bannisters.  And double checking that the cooker was still clean from week previous, and re-cleaning all the bathrooms.   I do think I suffer from / enjoy OCD when it comes to my levels of clean lol.  Made me absolutely knackered, but it was good therapy for the soul, and quietened my mind.

It also gave me some down time to catch up with various support groups online - there are some really interesting articles out there - there are now real discussions taking place about the big data issues emerging out of breast cancer research, and actually there is now a big piece of work linking those who have cancer ending up with quite significant mental health issues.

(That's not me getting my excuses in early by the way - I do find the whole topic absolutely fascinating!  Linking 'cancer' and 'mental health' in any google search brings up a myriad of results, but underpinned by medical advice available on Macmillan, Cancer Research and the Breast Cancer Care websites.)

The support groups are really good for allowing me to speak to women who have actually been through, or are currently going through the exact same diagnosis and treatment plan as me.   There are still elements of the unknown which I am scared about, and there are certainly a whole spectrum of side effects and reactions - but I guess I just have to wait and see what lucky mix I will get... however I am still planning on being a model patient and breezing through this with a positive attitude and a smile on my face.... (ok - sometimes it may be a little like a rictus grin, but I will rock it either way lol.)

One of the best articles I read though, was the inspirational one about celebrities who have had breast cancer and lived to tell the tale... special hats off to Dame Maggie Smith who continued to film Harry Potter whilst getting chemo!!!
(Supposedly being bald made getting her wig and make up on so much easier ❤️)

http://www.huffingtonpost.co.uk/2014/09/16/celebrity-breast-cancer-survivors_n_5803146.html?ncid=engmodushpmg00000006

Sunday was a great day out with Mum and my niece... knew I was maybe going to be a little nervous before bloods and big head shave, so was just lovely to have a good laugh, inappropriate conversations and lots of cuddles with Codie.  As for making the craft sock / fake coconut teddies... well, those will be moments of laughter which will stick with me for a long time.  Along with Codie's face when we dug out the DVD of my dad's 50th... Codie would have been 3, and we had captured the outtakes of her singing "happy birthday"...

As they say, for most things there is MasterCard, but then there was Codie's face... priceless 😀❤️😀.

Monday was a trip to see my new BFF - the phlebotomy nurse at the GP surgery.  She was surprised to see me so soon, but after I explained the whole sickness thing, she empathised and then whisked a tourniquet on opposite arm from last week whilst she did her vampire-esque role on me.

All was going so well, and I thought she said she was finished... so I turned my head back round and then gasped as I saw the needle was still half sticking out my arm... I am not ashamed to admit that my stomach did somersaults and I felt a bit grey!!!  Thankfully I did not pass out and make a scene though, and after a minute or two managed to compose myself to say I look forward to seeing her in 3 weeks time - I applaud myself on the professional recovery, without fainting lol. 😇

Got home in time to get ready for my big head shave... my friend Fiona came across to keep me company (without me knowing that she had a real fear about watching it!!!), and then Karyn arrived with the big clippers...

Honestly, what a hoot we all had.  What could very well have been a traumatic episode with tears and snotters, instead was filled with laughter as I was styled with a Mohican, and then property scalped... although I now know that when my hair grows back, I could so do many things with it 😀😀😀.

The level of conversation ranged from what would happen with all my hair and was it ALL going to fall out (yes), and did I need the off cuts to make wigs for other parts of my body... (the answer was "errrr, no thanks" lol).

It also made me wonder... what do I do with make up / foundation?  I mean, I don't wear a lot of makeup that often, but with a bald head, where do I start and stop?  Do I take it all over my scalp? Or stop and leave a tide mark??? See the serious issues I will now need to consider!!! (Once I stop laughing...)

We also had a serious debate about what shampoo to use.  In the shower on Monday morning, I became acutely aware that I will no longer require hair thickening shampoo... or will I?  See, then it might just give me a thick scalp... and I can't even picture what that would look like!!!

Although, having now 'braved the shave', I can actually make jokes about myself looking like Uncle Fester from the Addams Family.  (That analogy was actually borrowed from one of my new support group buddies, but is so funny I had to apply to myself too!)

I did decide to post my pictures on a closed group on Facebook, as I wanted everybody to know that I was not scared of what I was going through, and that whilst it would never have been my first choice, cancer does not have to be doom and gloom... my funky pink wig is testament to that.   😀😀😀

I also think that it's great that my nearest and dearest can see fit to tease me already about my baldness.... my mum offered to wax and polish it, along with one of my friends, and after telling my husband that it felt like a Brillo pad, he disputed it and then said it was more akin to a cleaning head brush for cleaning DVD's and subsequent got out one of Xbox games and polished it against my fuzzy head 😜😋😀.

(Random aside... I actually thought my scalp would be completely smooth.  It's not!  Instead it's a little prickly, and when I rub my scalp it feels like rubbing velvet material in the wrong direction?  It's the best description I can come up with just now lol.  Also, I hadn't appreciated how chilly my scalp gets, even sitting in the house... I feel all drafts!!!  Thank goodness for my chemo skull caps lol.)

The other thing I was perversely pleased at, is the fact that I actually have quite a good looking scalp. (Professional hairdressing opinion by Karyn too 😀.)  It turns out that it is completely smooth and round, no scars, bumps or blemishes, and I don't have big sticky out ears either... so on the whole... I stand by a previous comment that I could make the perfect snooker ball now  🎱.

Tuesday was supposed to be a day of chilling, instead I went out with a very dear friend who basically allowed me to indulge in a lunch of everything which I am now going to be banned from eating for the next 6 months 😀.

Oh yeah... that's another buggeration factor.  When I got all the chemo prep information, I also got a list of things I can't eat.  Basically I have to avoid raw meat, runny eggs, pate, soft or blue cheeses, probiotic yoghurts and anything like chorizo and salami.  Oh, and takeaways... and re-heating any kind of food.

I am guessing this is all because of risk of infection / unpasteurised/ risk of bad hygiene if food not prepared fresh by my own fair hands... but jeez... who knew it was going to be so limiting!!!  (To be fair I don't eat any of those things in any quantity at the best of times, but now I know they will be banned, I want them all, at once, now!!  So I did... 😋)

The other buggeration factor appears that most people on the support network have confirmed that they put on weight with this particular type of chemo treatment.  Between 1 and 3 stones to be exact.  So whilst that's not exactly music to my ears, I am not going to stress about it, and I may just live in my poncho for the next wee while.

However I did take heart when one lady told me that her oncologist had said it was not the chemo making her stuff cakes into her mouth.... (clearly that's a tough love type lol).

To be fair, I think the thing is that the steroids can cause fluid retention, and the fatigue maybe means that usual physical activity is hard to continue.   There is also the whole appetite thing... steroids make you really hungry, but the mouth ulcers may make you not want to eat... so then it's a balancing act with protein shakes, and getting enough calories to re-build your cells after they have been killed off by the chemo.  Then there is the thing about your tastebuds changing and everything tasting metallic, and the medical team also saying that eat whatever you fancy whenever you are able to compensate for the days you might not eat at all...

So basically folks... I may become an blimp.  Or I may become waif like.  Or I might just stay the same.  Any of those options I will deal with.  Just don't judge me if I eat like a pig from a trough one day, and then abandon all food for several days... it is not an eating disorder... just chemo lol. 🤒😷🤐

Slightly off at a tangent, but there have been a few things I have considered this week - it was World Cancer Day on Saturday... and I bought some wrist bands... but I then didn't want to participate in it.  Maybe because sometimes it's easier being a supporter when you are on the outside looking in?  Or maybe it's because this is all still new to me, and I don't feel like part of a club?  Who knows... but actually, it just made me a bit uncomfortable.

Normally I am great joiner-in-er, but I couldn't this week.  Then I had feelings of guilt as I didn't want to join in, and I didn't shave my head to raise funds for cancer research either... which I know is completely irrational.  However, am not going to worry about it, I just find it intriguing that I am clearly benefiting from advances in research for my illness... but not quite ready to help contribute to that yet.  Who knew?

However, I also had my spirits lifted with the many gifts and cards I continue to receive from everyone... flowers to brighten my rooms and lift my mood, the wonderful and multiple bags of mint sweeties to get me through the tough tasting times ahead, and my gorgeous 'journey bag*' which has all the supplies a girl could want to see me through the next 6 months....

(* Journey bag was so well researched!!  Mini wine bottles to celebrate my milestones, Vaseline for my dry lips, red lipstick for the days I need some colour, antiseptic wipes to keep my OCD at bay, colouring book and pencils to keep me busy, chocolate for emergencies, bonjela for the mouth ulcers, hankies in case I want to cry, some fancy soap to treat my skin, a green smoothie as I am currently obsessed with them, and some amazing books to keep me chuckling throughout the next 6 months!)

Anyway... I ended this week on a high.  Chemo day deserves its own blog entry, and I write this at 2am on Wednesday morning anyhow.

I have had so many lovely messages wishing me well for tomorrow (as well as many messages from weirdo friends and family telling me I am beautiful bald - am sure that qualifies for some kind of fetish club somewhere lol)... but sincerely I feel like the luckiest girl alive. 👌👌👌

I really would not be able to get through this without everyone's love and support.  And everyone is bearing with me when I have my drama queen and hissy fit moments too.
(Well most of people are - other people just tell me to calm down and chill the feck out lol)

I really do have the best friends and family.  ❤️❤️❤️

Random final fact of the day, I treated myself earlier, so I also have another new digital thermometer -  not a rectal one, in case anyone queries btw.  It's a fancy in the ear one, with disposable caps.  I think I am going to become obsessed with taking my own temperature...  (currently 36.8 degrees 😀).  Maybe I will save up and get blood pressure cuff and other medical gadgets too.... oh I could learn to play doctors and nurses... oh wait... that has different connotations.... pmsl....

Well... on that very graphic note... time to leave this blog I think!!

Week 10: Preparing for chemo... that never happened 😢...

Week 10: Thursday 26 January - Wednesday 01 February 2017

Well, I write this on the day I was supposed to start my chemo.  But I haven't. 😢

Feel like this is such a body blow as I was so psyched up to get my treatment started, I had had my bloods taken and I had spring cleaned my house to be fully prepared  for chemo sickness.

And then I got a vomiting bug from my husband.  Know it's not really his fault, but I am so annoyed. It really is times like this I think I should live alone in a wee bubble and cut myself off from the world.   I am sore from vomiting, my bones properly ache and it hurts to move anything.  On top of that, hubby keeps implying that he has had the bug worse than me as he has had it for longer.  (To be fair, when I came home on Sunday morning I just thought he had a hangover.)

However, what I want to scream at him is along the lines of "wtf?... you are having a laugh.  You have jeopardised me getting treatment because you got a bug and didn't just keep it to yourself!!!"

I know that's me being unreasonable, but I genuinely can't help it.  Sometimes I am only just coping with having cancer and facing treatment, and to know it's postponed is gut wrenching. Anybody that knows me, knows I am a great organiser.  So I had already plotted out my good weeks, and scheduled counselling, friends visits and various activities for my 'good weeks'.... and now they all have to be shuffled.

I realise in the grand scheme of things that this really is nothing, and that during chemo itself I may very well have set backs and further postponements, but to get one before I even start just made me furious 😡😡😡.

(Sorry, don't mean to come across as some kind of angry banshee, but better writing it down and getting it out of my system.)

I suppose on the upside, one of my worst fears of getting chemo treatment was how I was going to deal with potential sickness / nausea / vomiting.... well I now have practise.  Turns out that kneeling too long on cold tiles is a real pain, but if I sit on a towel and just do a sideways roll when I am actually going to be sick, that seems to work best...

Turns out being sick with whatever I currently have has also given me additional practise with headaches, joint pain, hot and cold shivers, and general loss of appetite.  I do feel like a bit of a hypochondriac though as I have lain in bed all day and just groaned like some kind of alien zombie. 😨

I have also discovered that true bone and joint pain means I have had to literally crawl back to bed from the toilet as it hurts too much to push myself up to my feet like I can't support my own weight.  And lifting my arms is too much effort.

Whatever this bug is, it is nasty.  But I do have great friends and family - they have all messaged me to ask if they can get me anything, and to give Dave credit, he did brave the elements yesterday to go buy me ice lollies despite the fact he is still not well himself.  I also now feel bad for basically abandoning him when he was being ill!

Anyway... aside from being quite ill tempered about this, the rest of the week had actually gone ok... (ish) 😀.

I had finished up work, as although I am covered by a sick note, I had wanted to continue with normal life as much as possible. But then I was advised that I should take some time to basically learn to wind down, and start mentally preparing for what lay ahead. So I tried to do this with a week's run in of small activities and house cleaning... therapy for my busy mind.

My Irish best friend arrived on Wednesday, in time to go to a Whisky Society Burns Night... unfortunately, my mother in law's dog did not take a shine to her and decided to bite her leg, and both Sue and I ended up with potential food poisoning after the meal.  It was a dramatic night. 😜

The following day, Sue was decidedly grey but rallied herself to come with me to my wig appointment.  There were actually lots of laughs there, and clearly with most people, natural hair is what they are looking for.  So the NHS does not do long, curly, fiery red hair wigs where I could have looked some kind of female super hero... they do however, do some hideous wigs which made me look like a very unfetching Thelma from Scooby Do!!!

Anyhow... it was a great session, and I got lots of hints and advice, and decided on a long blonde-ish wig which should arrive in about a fortnight...

Friday was a lovely de-stress day where Sue and I went to local shopping centre, did some mindless shopping, some cake eating and went to get our nails done.  She was so lovely and sneaked out and paid for my manicure and pedicure before I had even realised!  So I now have sparkly pink nails for the next wee while to keep me cheered up every time I look at them 😀😀😀.

That evening my parents and my neighbours popped round and we had a really good laugh at playing an alternative quiz and grabbing takeaway... basically I recognise that these are all activities I am doing to see people before I start my treatment, get sick, and go bald... (I am not naive or a psychologist - just know myself lol.)

However, as I do keep pointing out... I am not planning on dying... it's just that it's nice to have some last fun as being 'normal and fit' Linz 😀.

Saturday was a night out with some other friends as a last swan song too... a cheeky night out in Glasgow... mostly fun, but maybe didn't go quite as planned... I think the impending chemo got to me and I had a little bit of a meltdown as I was coming home earlier than planned on Sunday morning.  There were tears and a general feeling of feeling sorry for myself... made worse when I got home to find hubby being sick with what I thought was just a hangover....

Anyway... I sat on sofa and tried to pull myself together, so decided to start my pre-chemo housework.  With loud music, singing and hoovering (I am a horrible wife - as I said, I thought Dave had a hangover and I am never sympathetic to hangovers...!), I was on a mission to cleanse and bleach everything.

My brother and sister in law popped over with my gorgeous new niece, and I got baby cuddles as she was sleeping so beautifully... bad auntie Linz gave her back when she started crying though - am definitely not good with tears lol.

This cleaning continued into Monday, even though I also managed to slip on the ice whilst de-icing the car (bruised and swollen knee) - I am indeed a klutz!

My bloods appointment went well, supposedly I have great veins, and they managed to get all the blood required without using a tourniquet 😀😀😀.

Another friend popped over for lunch, and hubby made an appearance even though he was still grey looking... turns out he really was not well... and this was possibly the point he shared his germs with me, as this was longest period of time we had spent in same room!!!

Monday evening I caught up with one of my team, and I even managed to persuade her to talk about work... so overall I was feeling good.. had planned to come home and wash the carpets and spend the Tuesday chilling, dog walking and looking out my  minty treat presents and iPad for going for chemo on Wednesday....

But from 8.30pm on Monday.... that all changed.  Let's just say that lasagne is now ruined for me. And I dislike being sick.

Tuesday and Wednesday were complete write off days and I can't remember last time I  literally just stayed in bed.  I don't like it, and it doesn't bode well 😨.

Anyway, I am going with the medical advice - I know it's better to postpone treatment and be fitter for it, than to go into it with weakened defence system and feel even crappier.  Also, I would be gutted if I passed this bug onto anyone else at the chemo unit.

So all my appointments are now re-arranged, MORE bloods have to be taken fresh next Monday, and I get to deep clean the house again at the weekend - this time to get rid of MY bugs ahead of chemo lol.

It's interesting, as I suppose this does give me an extra week to think about things... lots of people on the breast cancer forums are now sharing their experience of hair loss.  Supposedly it is actually quite painful - it's like hot pins and needles, and even the hair blowing on your scalp can be painful.  It also feels like your scalp is permanently bruised.

So I think I have some decisions to make as to when I get my hair shaved.  It will be a 'when' as opposed to an 'if' though - if this is the only thing I can have a little bit of control over, then I am going to grasp it with both hands.  And I do have enough wigs and scarves now 😀😀😀.

The other thing which popped up on Facebook this week was the following link to a BBC3 programme - which appears to have caused both celebration and outrage in equal measure on the cancer forums!!!

https://www.facebook.com/bbcthree/videos/10154470854155787/

Basically, it appears that some people have said that if people do not want to be spoken to, they should hide themselves away, others have said that they don't like superficial words of sympathy, and other people are left unsure of what to say at all!!

I say... say whatever you like, as long as you say it from the heart.  Cancer effects everyone - nobody knows what to say for the best, and to be honest, depending on the mood of the recipient, they don't know how or react - and that can change on an hourly basis!

Anyway... new week ahead, I am going to get over the bug, get fresh perspective and start over.  Will start with house cleaning.  Very therapeutic!

Onwards and upwards... till next week peeps 😀 x