I Look Like A Goblin

Overnight a huge amount of hair has fallen out and is all over the bedding, even though it's only a half inch or so long it's still made really awful mess.

And I look absolutely dreadful, half a head covering of hair and a massive bald patch.  How on earth did I ever think this wouldn't upset me?

I can't bear to look in the mirror and have had to cover my head with one of the stupid scarf-hats which just screams CANCER PATIENT.  Ian has taken Mum shopping because I don't want to go out - I just want to hide away and cry 😭😭😭😭😭 

We're going to borrow some hair clippers later today and shave it even closer - hope it might look a little better if it's all the same length.

It's probably just as well I have the second FEC infusion today - I HAVE to go out and of course at the unit I will look relatively normal!

Update:   Clippers borrowed and shaved - Ian looks so pleased with himself 👏

FEC Cycle 1 - Days 15-21

We seem to have spent most of this week back and forth to the hospital for one reason or another

Monday/Day 18 

Follow up meeting with Onco this afternoon to check on side effects etc.   We saw her Registrar first, she was very pleasant but couldn’t really answer our questions about the “bizarre” HER2 positive results (actually she’d not even read the notes so floundered a bit).  Anyway she rightly went off to get Onco to speak to us but left her computer screen on so we were able to write down the exact findings the lab had reported.  It seems I have rather unusual chromosone 17 signal patterns which are difficult to interpret but the report concluded by saying there was clear evidence of amplification.  We then double checked with Onco that she was satisfied with the report and that the chemotherapy et al is indeed necessary - b*gg*r it is 👹

Just a quick side note on what a small world it is (I won’t bore you with the whole story) someone I knew as a child through my Dad being a church organist, has been friends with Onco and her husband for years and played the organ at their wedding.

Tuesday/Day 19

Back to the unit for 09:00 to have a PICC line fitted.  Given the amount of times a needle will need to be poked in my arm, either to give chemo or take blood, Onco recommended that I have a peripherally inserted central catheter.  Finding suitable veins is always a problem plus the chemo drugs actually damage the smaller veins over time but this method means the toxins are delivered straight into a larger, more central vein and pumped round the body quicker.   It all seems to make sense but nonetheless I wasn’t looking forward to the procedure which involves a thin tube (catheter) being inserted into a vein in my upper arm and then threaded through the vein to somewhere near my heart 💔

Actually stuck up on the wall in the treatment room, is a step-by-step guide to fitting a PICC line 😁

The procedure was marked on my Schedule as “senior nurse led” - no doubt a euphemism for “letting a trainee loose” so during the preliminary chat I explained what had happened with the wire insertion before the operation and the rummaging that had gone on. 

After searching for ages without success, senior nurse finally found a suitable vein, except it was very close to an artery and even trainee looked scared 😱😱😱😱😱 Really glad I’d voiced my nervousness as it was quickly decided that senior nurse would actually stick the needle in and then let trainee do the rest - excellent plan.

It wasn’t painful as I’d had a local, but once again I could sense something being poked around within my arm.  I didn't watch too much in case it made me feel feint so I concentrated on the Where's Wally poster stuck to the ceiling.

They say a picture speaks a thousand words so with permission from staff each time Ian has now been tasked with taking some snaps along the way as my arms aren’t long enough for selfies (no I will not be getting a selfie stick 💩)

We’ve been given all sorts of dire warnings about leakages and infections plus I’m not allowed to get it wet!

When we came out we bumped into a lady we've seen on just about every other visit and she was in for her PICC line to be fitted and wanted to know what happened.  I confirmed it wasn't at all painful and told her there was a picture on the ceiling to look at.  This lady is West Indian and probably mid-70s so I was somewhat amused when she immediately asked "oh good, is it a nude?"

Wednesday/Day 20

Showering involved wrapping my upper arm in cling film and to a degree it was successful (only slightly damp) but we’ve decided that with the amount of cling film I’ll get though in 15 weeks of showering (min 105 showers) I might as well buy a specially designed cover.  Also I won’t have to wait for Ian to be home to wrap me up!

Back to hospital at 12:30 for the PICC line to be flushed and bloods taken, only a half hour slot but the unit was really busy so we were ages.

Thursday/Day 21

The Limbo PICC cover is a great success, fairly easy to put on and totally waterproof.

A rare day off from all things medical, except .......... I’ve been having tooth problems and because of the complications the bisphosphonates can cause have decided I better see my dentist.  Also if I do have an abscess then with a low immune system, any infection could spread rapidly (not exaggerating just heeding the warnings of neutropenia sepsis we’ve been given as my next FEC is due tomorrow).

Typically Pumba was on holiday but another lovely dentist saw me and she’d been through chemo herself a couple of years ago so totally understood my concerns.  Anyway, after a lot of poking and prodding, she decided there was definitely no signs of infection but probably the tooth nerve was slowly dieing off and if it started to give me too much problem she thought it could be successfully treated without suspending the bisphosphonates - obviously we’d need to get Onco’s agreement.

Much relieved I headed off to catch up with Ian and walk a golf course watching our gorgeous granddaughter play for Kent (she won her match but Kent lost overall). With my hair still coming out in clumps I have some quite bald areas at the front, so not wanting to scare anyone I kept my “Baker Boy” hat on all day which was OK but rather itchy after a few hours.

And then tomorrow (Friday) we’re back to hospital for the second FEC - really, really, hoping the side effects are the same (or better) however I am of course PFTWHFTB 🙏🏻

Dealing With The Fallout

I've thought all along that this particular side effect would probably merit a post all of its own and in advance have been trying to think of titles for this post ............  The Shed ............ Hair Today - Gone Tomorrow ........... Brave the Shave (grossly overused already)  ........... Hairdryer For Sale

Thursday/Day 14

Just before bed I absentmindedly ran my hands through my hair and looked down to find a dozen or so strands in my hand ............ 

............ yep the fallout has started 😭😭😭

Day 14 is for many when the hair starts to come out (although for some it hangs on until after the second infusion) so it'd been in my mind all week and I've been waiting for it - but surely auto suggestion can't apply to hair follicles!!

The top of my head felt quite sore to the touch, as though I've whacked it on something or like I haven’t washed my hair for weeks - you know, that tight, pulling feeling on the scalp.

I didn't sleep really that night, I kept imaging my hair falling out in great clumps and waking to find myself almost buried in hair - of course that didn't happen, there weren't even many on the pillow.  So at the moment it's really just when I touch my head, they fall (I can hear Ian saying - well don't touch it!)

Of course it was only a matter of time as very few people on FEC escape it, but once again I'd pooh poohed it as unimportant (let's face it, I’m not known for my stylish hairdo 🧑🏼 - in fact many times over the years I've said I'd prefer to be bald - be careful what you wish for 😬😬😬) and I didn't realise how it would bring home to me what's happening - it's made me very sad.

Chemo drugs attack rapidly dividing cells (which is what cancers are) but unfortunately they can't differentiate between good cells and bad cells so they all get killed off and this includes hair follicles.

For years I've zealously avoided having my photo taken and now all of a sudden I really wish I had more pictures to look back at.  Since January I've lost 1 1/2 stone and with my new short haircut I've actually been feeling OK about how I look ............  but now that's so temporary.

Just what is this blasted chemo going to do to my body?  Will I bloat up with all the steriods and lack of exercise?   Will I end up scrawny because I can't eat due to mouth sores and no taste buds?  How will my hair eventually grow back (assuming it does as for 6% hairloss is permanent)?  What about changes to my skin/teeth/nails?   Will any side effects just be temporary or will I end up with long term problems like tinnitus or neuropathy.  So many things COULD happen, I get very scared.

Now the hair loss has started, I think I really want it over and done with quickly so should I just shave my head and move on ............ or do I want to hang on for as long as possible.

Friday/Day 15

No change on the head front, just a few hairs coming away when I touch it.  


Saturday/Day 16

We had a lovely day out with friends in the glorious Autumn sunshine and mostly I forgot about my hair, except for a little tug every now and then - don't know why I think it might  suddenly manage to re-attach itself.

Sunday/Day 17

Ouch my head is really, really sore now - I could barely rub the shampoo on it this morning.  .................. and it's coming out in large quantities

The time has come so a quick text to my lovely hairdresser and she's coming Monday morning.


Monday/Day 18

Once again Chloe made it so easy for me, she just got on with it.  I've had a No.4 and it feels great, my scalp is less sore already.  I could have gone shorter but this looks good and conceals the places where the hair has thinned more (probably where I've be pulling it out 😈😈😈😈😈)

Luckily I'm fairly proficient with Photoshop so teeth whitened and a few wrinkles removed 😆

Of course it'll continue to fall out but at 1/2" long will be much easier to deal with.

FEC Cycle 1 - Days 8-14

This week has just sped by and physically I've felt fantastic every day.  In fact I'm beginning to wonder if there were actually any drugs in those syringes - or was it just coloured water 😀

I feel so grateful that I've had minimal side effects even at the beginning 🙏 (I've read what some poor souls have suffered) and that I've been able to continue life as normal; gardening, walking, housework, looking after Mum, meeting up with friends.  I've even started to get a couple of hours sleep some nights    😴

Feeling so well I often forget what's actually happening and then suddenly bang! it all comes flooding back - I still think I'm in shock/denial/not really fully appreciating the seriousness of it all.

FEC Cycle 1 - Days 4-7

Monday/Day 4

I was totally wiped out but really pleased that Ian could go off and play golf in the morning. Most nights I’m not sleeping more than 2 hours and then tend to nod off about 06:00 so I just stayed asleep til mid morning 😴😴😴

All I managed was a very short walk to the postbox and a quick 10 mins in the garden dead-heading dahlias.  But mostly I vegged out on the chaise.

Appetite still good.

Tuesday/Day 5 

Today started off feeling like a bit of a challenge, emotionally rather than physically.

We pretty much know for sure I will loose all my hair (both on my head and in other places, although s*d’s law not from where I’d actually like 😡).  Yes, there may be the very lucky one or two that don’t have complete hair loss but everyone we’ve spoken to and all we’ve read says it’ll all go - usually somewhere between 14 days after the first treatment to shortly after the second dose.

So how do I deal with it?  I’ve read that waking up to find tufts all over the pillow is both extremely distressing and also very messy, so I decided to get it cut really short now and get used to not having a fringe to hide my frown behind.

Chloe, my lovely hairdresser for the last 14 years, kindly came to the house and bless her she's done many such preparatory cuts before so, instead of me having to make any decisions, she just got on with it.  A fantastic cut, I really like it - Ian reckons I like look like Servilan (remember Blake's 7) although obviously without the fantastic cheek bones, tidy arched brows and superb make up - more like Servilan's granny 👵

The next hurdle was self injecting.  Part of my hospital goodie bag on Friday included these 

A 'sharps box' plus 5 days of injections.  Onco had told us that sometimes injections are necessary mid way through the treatment as chemo can lower the blood count and reduce the body's ability to fight infection.  Seems I've started off with a low white blood cell count - how worried should I be? 😟

The chemo nurse had explained what to do, but it's like all procedures - minor when you're familiar with doing it!  For some reason I thought the skin on my stomach was the thickness of a rhino and it'd be really hard to get the needle in - visions of Ian taking a run at it from the other side of the room - but in actual fact the needle was super thin and slid in really easily.

Ha - feeling mightily pleased with self .

Wednesday/Day 6

Such a beautiful, sunny day we went out to a National Trust property for a wander around the gardens and a light lunch, during which I realised my taste buds have done a runner, the food taste like lard and my mouth felt really furry.  When we got home one quick look at my tongue confirmed my fears - oral thrush - particularly annoying as I knew it was a likelihood and from the start have religiously been rinsing my mouth with a bicarbonate and salt solution as recommended.  Off to the chemist and hopefully the Daktarin gel will help.

Unfortunately it all went downhill from there and shortly after dinner I had dreadful stomach cramps, sweats, diarrhoea, and sickness 🤢🤢🤢🤢🤢 and poor Ian had to miss choir practice, just in case something worse was to develop.  It's the fear of the unknown which we're both struggling with a bit, we know what could/might happen but will it/won't it????

Suppose I got off lightly the first few days 😌

Thursday/Day 7 

No more stomach problems and I managed a few hours broken sleep.  I woke feeling fine - so Ian could go for a game of golf ⛳ without worrying.

Today has been a good day, the sun shone, oral thrush a little better, a few taste buds working and I felt great - oh, and I bought a wig! 😊

FEC Cycle 1 - Sunday/Day 3

I forgot to mention on Friday, not surprising I hadn’t slept all night, so at 06:30 I went out for a 5 mile walk - thought I’d put some credits in the exercise bank while I still could and it was a beautiful sunrise.  

I was sent home from hospital on Friday with a little bag of goodies

Dexamethasone (steroids)  - 3 a day first x days )

Ondanestron                       - 2 a day first 3 days ) to prevent/counteract nausea/sickness

Metroclopramide                - upto 3 a day as required )

Plus daily Fultium-D to prevent vitamin D deficiency.

Having already been given anti sickness meds in a drip, plus 4 steroid tables, again to counteract nausea/sickness I was more than a little alarmed to be given this lot too - obviously a dose of  PFTWHFTB was needed🤮🤢🤮🤢

Luckily it seems I’ve got off lightly, Friday afternoon I had a couple of brief waves of nausea so took one of “as required” tablets and that seemed to do the trick.  Then a bad headache but I’m cleared to take paracetamol as long as I check my temperature first (paracetamol lowers temp and can mask a fever).

On Saturday I walked down to my Mum’s flat, only a mile and all downhill, but I was pleased with that.  Then Ian met me in the car and we did a few bits of shopping,  By Saturday afternoon the headache had gone and I definitely had an appetite.  Other than being a little tired (afternoon nap) and rather “bunged up” to put it delicately that’s my side effects for now.

I’d say that for me, this time, I just felt like I’ve had a massive two day hangover.

Today, Sunday, I helped Ian in the garden for 3 hours shredding shrub prunings, then did a tip run with the rubbish.  Hour's sleep and whacked out now with another headache but all in all not to bad.

Although I am aware of all the probable and possible side effects, I have decided not to write about any of them unless I actually suffer from them - no chance of auto-suggestion creeping in then 👹

Not Quite So Brave Now - FEC Cycle 1

As usual we got to the Unit way before our 10:30 appointment and of course they were running late (they always do apparently, the schedules are just too tight)

I managed to stay fairly calm in the waiting room but when it was finally my turn, I did have a lot of tears 😪 and can’t really say why - I think just the reality of it all is hitting me and what hurdles we might have to face over the next 18 weeks.  

Sarah my nurse was an angel 👼(she’d noticed my upset on Wednesday and that was just being there for pre treatment “obs”) so managed to find me a quiet area with no one looking on - I know we're all in the same boat but there are old hands there who might have forgotten the trauma they first went through and maybe unsympathetic towards the newbie.

Sarah told me it was absolutely OK to cry and be upset, she would simply carry on with what she needed to do - fabulous way of dealing with the situation and it helped me get over the tears far quicker than someone telling me to pull myself together.

I don't think I made it clear yesterday but FEC is actually 3 different drugs which work together to stop the cancer cells dividing and multiplying and each drug attacks the cells at a different phase of their growth - hence why they are given jointly.

First I had a needle inserted into a vein in my arm and luckily she got a good vein at the second attempt (the first one wasn't suitable), otherwise apparently she had to work from my wrist up to my elbow trying to find one - ouch!  Then a bag of anti-nausea fluid was dripped through followed by a bag of saline to flush the line.  

Sarah talked nineteen to the dozen making us laugh a lot, she also gave us lots of useful info and tips to help mitigate some of the side effects.

Then in her words she got out the "3 evil ones" and these she administered with a hand syringe slowly and steadily pushing the plunger - the first one 'F' looks just like a nice rosé wine and indeed my first few wees were very red (preferred the nuclear blue on Op. Day) - they were no problem, a little cold sensation under the skin but OK.   Each one was then flushed through the line and finally a dose of Zolendronic Acid which is the bisphosphonate to help prevent bone problems.

The session lasted three hours rather than the scheduled two (and I was given a delicious Salmon Sandwich) and whole experience was made very easy by Sarah's attitude and I am incredibly grateful to her.  Also a big hug for Ian who stayed by my side throughout and even accompanied me to the loo to wheel the drip stand - true love 💖💖💖

First FEC down - 2 to go 😥

Starting Treatment

Yesterday we spent quite a few hours at the Galton Unit for my "induction".  This involved firstly basic height/weight measuring, blood pressure and blood sampling plus a short health questionnaire (erm cancer?).  Then, and it rather reminded me of joining a new company, a small group of us went into a conference room and watched a 20 minute video on chemo, how it's administered and its likely side effects - most of which Ian and I had already read many, many times.

After that we had private sessions with a nurse to discuss the specifics of my treatment but there was a degree of confusion with the regimen detailed on my consent form and of course I hadn't been asked to sign it previously.  So, as all I'd had was a phone call from an admin person telling me that I was to start treatment tomorrow, it was decided we should meet with Onco's deputy today so that he could give us the actual HER2 results and check I'm happy to go ahead with the proposed treatment.

My results were described by the lab as "bizarre" and therefore they have no alternative but to classify me as positive.

So my boob is "unremarkable" and now I'm "bizarre" - the NHS certainly chooses it's words.

Tomorrow I start my first of 3 x 21 day cycles of drugs called FEC, this will be followed by 3 x 21 day cycles of T.

Additionally I will have 9 x 6 week cycles of Bisphosphonates and 18 x 3 week cycles of Trastuzumab - which will be given concurrently to one of the two above.

When the chemo (FEC-T) is finished I then need 3 x 5 day cycles of radiotherapy to the boob and finally 5 years of hormone treatment (probably Letrozole).

And just a little word to my lovely, positive, well-meaning friends who tell me not everyone gets side effects with chemo - yes this is absolutely true, but my reading/research has been restricted to the specific drugs I'm to get and their side effects, some of which are indeed rare but others, sadly, are very, very common.

So once again, I PFTWHFTB 😱😱😱😱😱😱

PFTWHFTB

Well, I really thought I had it sussed - PFTWHFTB - but no matter how much I thought I'd prepared myself it just wasn't enough.

Sitting in the GP surgery waiting for my flu jab yesterday afternoon my phone rang so I quickly dashed outside.

"Hello Jennifer, we'd like you to come into the Galton (Cancer) Unit tomorrow afternoon.  I know it's short notice but we need to start your chemotherapy this week"

My legs just turned to jelly and the tears instantly started to flow.  The young lady on the phone was terribly sweet and let me ramble on about being prepared, Ian away, hoped the result would be negative etc etc

I went back into the doctors and badly needed a tissue so asked one of the Dragons on reception and when they'd finished chatting amongst themselves, they were actually very sweet.  One came out and hugged me and said she'd just been through it and had coped.

So that's it, we're off now to find out the ins and outs of chemo 😢