A Most Unwelcome Guest - FEC Cycle 3 - Days 8-14

Firstly, I'm feeling lots better; my energy levels have pretty much recovered and so has my mood - my chemo brain still does random things but I'm learning to cope with that and get Ian to double check anything important.  So sorry for the rather miserable last post 🎺and thank you everyone who got in touch.

For the last 7-10 days (Ian thinks longer) I’ve been aware of a strange feeling in my left forearm.  I wouldn’t have said it was painful as such, it felt more like a restriction in a tendon/muscle when I straightened my arm but nothing worth mentioning to the nurses.

However yesterday (Tuesday/Day 12) when I woke my arm was rather swollen, red and very painful.  We know there is an increased risk of a DVT, both though chemo and having a PICC line but of course DVTs are more common in the leg.  Anyway, what to do ?  I hate making a fuss and as I was due back today anyway for the weekly PICC line flush, I was tempted to wait and to mention it then. But we chatted it through and decided best to ring up for advice and this is where the reception staff differ so much from your usual GP surgery dragons - my line flush was immediately brought forward to yesterday afternoon.

Now you may remember last week when I saw my GP with my butt cheek rash he arranged an urgent blood test and, although he’d assured me I would hear immediately should anything untoward show up, as I was in collecting a prescription for Ian, I thought I’d double check all was OK.  I must admit I was rather surprised (read cross/horrified 👿👿👿) to learn that the results from this URGENT test were “waiting for the Dr who will be in on Thursday”

Anyway back to the Galton Unit in the afternoon where the first nurse who examined my arm wasn’t overly concerned and as she’d never seen an arm DVT before was inclined to rule that out.  However, as I hadn’t been bitten or bashed myself, there was no other likely explanation so she referred me to the Lead Sister who thought likely DVT (or SVT) so I was sent off to have an ultrasound.   I have a "superficial" clot in my forearm but also, and considerably more worrying, a further one in my upper arm in the same vein as the PICC line - a most unwelcome guest!

Obviously I’d mentioned the totally unconnected butt cheek rash and the bloods and was reassured to know that the results were accessible by the Galton Unit.  Whereas I’d been concerned about the low white blood cell count, what has now flagged up is the platelet count which had fallen from 159 (of whatever unit of measurement is used) pre 3rd FEC infusion to 89 last Friday.  Platelets are essential in the clotting of blood (normal range is 140-400) and therefore having a low count and a clot at the same time doesn’t make much sense to me (neither to the nurses I think but they are very experienced and professional and  never show their concerns in front of the patients).  Apparently transfusions (WTF how did that word creep in😱😱😱) aren’t given until the count is below 50 and as I’m now 12 days into cycle 3 it’s assumed my count will have recovered a bit.  The treatment for the clot is Fragmin which is an anticoagulant and administered by injection so I have a prescription for 28 preloaded needles 💉 to collect BUT before I can start more bloods were taken (from the hand as the PICC line can’t be used) and she'd phone me around 18:00 with the results.

Meantime the line flush didn’t happen and they now have to wait 3 days because of the DVT/ Fragmin complication so that needs to be rescheduled for Friday.

(Frustrating side issue - on the dark and rainy drive home some b*st*rd clipped our wing mirror and the rear casing fell off - we drove back to try and find it but no luck- I guess it was crushed pretty much instantly by other traffic.  Just what you can do without)

The Sister duly rang and the platelet count is down further to 77 - she’d spoken to a haematologist who said to go ahead with the Fragmin injection but they now want to monitor the bloods daily until the count recovers.

So back to hospital this morning for a blood test and then wait for a phone call before injecting again (I’m so pleased it isn’t a problem for me, can you imagine the logistical nightmare if I needed a district nurse to do it)

Meanwhile the “superficial” lump in my arm has got bigger and hurts more 🤕🤕🤕

Update:   Platelet count on its way back up (86 PM Wed/Day 13) so OK to inject 😁😁😁

FEC Cycle 3 - Days 1-7

Friday/Day 1

It was fairly quiet in the Galton Unit this morning

My nurse for today's infusion was Will and, although he was "just" an agency nurse, his knowledge bank and experience were superb so I felt in good hands, but I was a bit apprehensive 😟 from the start knowing that some of my blood results were only just within guidelines (sneaked a quick photo and as you can see quite a few of concern - defo becoming a hypochondriac )

But all went well and we were home by late morning.  

Saturday/Day 2

We’ve read from the beginning that some side effects are cumulative, although by having 3 weeks between each cycle the body is supposed to recover to some extent.  And - wow - the tiredness has certainly hit me full on this time and pretty much instantly.  I didn’t even manage to get dressed today, I got up and showered but somehow never got further than that and just lolled around either in bed or on the sofa.

Sunday/Day 3

Still very tired but looking forward to a visit from my lovely number twos - step and granddaughter - so something to make an effort for.

Monday/Day 4

Today I felt very emotional and nothing seemed to go right.  Ian was golfing and I had just a few simple tasks to do, either on the phone or the computer but it was just disastrous.  Inanimate objects conspired against me and by the time Ian came home I was just a sobbing mess.

Really glad that BFF called in for a cuppa as that really cheered me up and I even managed to cook dinner afterwards (well fishcakes and salad so not exactly slaving over a hot stove but it gave Ian a break)

Tuesday/Day 5

Feeling a little better today, both energy and emotion wise.  I've noticed that the darker patches on my head have gone so I guess there's been another significant fall out, although I'm still velvety to the touch.

Wednesday/Day 6

Nothing much today, except the weekly PICC line flush.  Instead of the usual chocolates/biscuits for the nurses, today I took in a box of oranges 🍊🍊🍊🍊🍊 which went down particularly well with one of our favourites as it turns out she's diabetic.

Thursday/Day 7

A new gift from chemo arrived today 🎁 an angry looking rash between my butt cheeks.  I managed to pull rank at my GP's and got a telephone appointment and then Dr agreed to see me at the end of surgery.  He doesn't know what the rash is and it doesn't look like he thought it was going to (erm ?) but has prescribed antibiotics and some cream - he's also concerned re the low blood levels so tomorrow I have to have another blood test just to make sure.

All in all its been quite a rubbish week, but I'm hoping it's over for this cycle and I can look forward to a couple of "up" weeks.  And maybe the sunshine will come back ☀️☀️☀️

FEC Cycle 2 - Days 8-21

Well, it's been a very quiet couple of weeks, no major side effects and nothing else much going on (apart from Mum chucking a few spanners in the works 😤😤😤).

Although I do seem to have lost my nasal hairs which is annoying as I keep sniffing, especially when I'm in the open air.  Oh, and I think my eyebrows are thinning a little.

My hair hasn't regrown (no surprise really as I'm still killing off hair follicles) but neither has much more fallen out - so I still have a velvety feel to my head, rather like antlers 🦌

Mood wise I think I've been OK and we've got out and about whenever we could - the weather really has been wonderful for November.

The only hospital visits have been for the weekly line flush and today I had a telephone assessment as Cycle 3 is due tomorrow (my last FEC and half-way through the chemo 😀).  No contra indications to report from my end but the results from Wednesday's blood test showed my white blood count is very low and the Sister I was speaking to was waiting for confirmation as to whether the infusion could actually go ahead tomorrow.  Whilst we were still talking she heard back that my levels were "within the guidelines" so it's all systems go, but she warned that my immune system is likely to be compromised sooner than the normal 7-10 days after and for longer 😨😨😨

So, as there really isn't too much to report, I thought I model a few of the head coverings I've bought:

Left-Right/Top-Bottom

• known as "Condom Cap" I wear this most nights as my head gets jolly cold
• badly made and makes me look like I have long, floppy ears so not worn much - also screams "cancer patient" (I think)
• "Nepalese Peasants Hat" nice and warm and feels quite secure
• "Baker Boy" cap and, as you can guess from the smile, my favourite as it hides me well

Medway Hospital outsources it's wig supplies to a local shop which is run by a lovely West Indian lady and although at the time I wasn't sure I actually wanted a wig, as the NHS were kindly contributing £60, I thought I might as well get one just in case I ever feel the need to look "acceptable" anywhere.  

We had the consultation a few weeks ago, before my hair started coming out and back then I didn't think losing my hair would upset me, and with Desiree's help selected a suitable wig just in case.  Meet Veronica

So far though I've only worn it out a couple of times, on a flying visit to the local supermarket and then last week to an Indian restaurant.   It's been alright, although at times I feel if I wrinkle my forehead it'll just go ping and fly off - I do have some wig tape and pins (courtesy of lovely niece who is in the theatre) which I can use to anchor it better.  Yesterday in a National Trust tearoom I actually took off my hat and ate lunch bare headed as I was really hot - I felt very self conscious but I don't think anyone took much notice.

With the infusion due tomorrow I'm glugging water like a fish - 3 litres today - which I'm convinced helps to keep some of the side effects bay - fingers crossed I'll get off lightly once more (🤞🤞🤞🤞🤞 but of course PFTWHFTB)

The Point Of It All Is .............

The other day when I was feeling fatigued and miserable, I wondered what the point of it all was.  It's quite difficult when you're fit and healthy to undertake a course of treatment like chemotherapy which is specifically designed to put the body under stress and highly likely to make you feel unwell.

But the whole point of it all is ................ to extend my LIFE expectancy and I must never forget that !!!!!!!!!!

Onco describes my treatment plan as the Gold Standard 🌟🌟🌟🌟🌟

• surgery to wholly excise the tumour 🌟
• chemotherapy with both 2nd and 3rd generation drugs to kill off any remaining cancerous cells which are still lurking around and undetectable 🌟
• trastuzumab targeted treatment (Herceptin) to specifically kill the HER2 positive gene cancerous cells 🌟
• bisphosphonates to prevent osteoporosis and to lessen the chance of cancer spreading to my bones 🌟
• hormone therapy (probably Letrozole) for 5 years to block oestrogen which can "feed" any remaining/recurring cancer cells 🌟

That’s a lot of drugs over a long period of time and there are two ways to think about it

• I'm unlucky because I’m at a higher risk of recurrence 

or

• I'm lucky because being higher risk means everything possible is being done to prevent recurrence

Of course whilst the drug regime is tailored to me to certain degree, at the end of the day it’s all based on statistics.  There is a NHS algorithm called Predict which will crunch the numbers and tell you, statistically, what benefit the chemo could be for you:-

So putting up with this for the next few months (or years for some drugs) increases my chances of not dying from cancer in the next 15 years from 55% to 76% - I think that's worth it.  Of course the whole thing is based on statistics so we will actually never know if my cancer doesn’t return whether or not the chemo et al had anything to do with it 😕

But I am so grateful to our wonderful NHS for finding the tumour, removing it and now doing their damnedest to make sure it never comes back 🙏🙏🙏  

FEC Cycle 2 - Days 1-7

Friday/Day 1

After the morning trauma of hairgate, the next hurdle was my second infusion due in the afternoon.

I’m pleased to say that a completely different woman walked into the treatment room this time - no tears, no shakes and I was able to take my seat amongst the others.

Although I did consider having a mini wobble when I was told there was no anti-sickness meds available by drip (none in the whole hospital 😰😰😰😰😰) but as I was given a few extra in tablet form, I just had to hope they'd be enough PFTWHFTB

So no anti-sickness meds meant one drip less and also with no bisphosphonates this time (they are only every 6 weeks) we got through the saline flushes and 3 manually injected toxins in record time.

My nurse was exceptionally sweet and, I felt, really interested in me - she asked loads of questions - certainly I didn’t feel just like a number.

Armed with another goodie bag of tablets and injections we were home for dinner and only very, very mild nausea.

Saturday/Day 2

Feeling good and with two lovely friends visiting, Ian was able to go off and play golf without any worries.  A brief visit down to Mum when he got home and that was all I did.

Sunday/Day 3

Another visit from my eldest step-daughter who entertained us well for a couple of hours - I am so very grateful for all the visits and little messages, they really do buck me up.  With hindsight I probably did too much the first cycle so, as it was a grey, miserable day, we just lazed around for the rest of the day.

Monday/Day 4

We should have been flying out to Australia today to meet our new grandson (and of course have a long overdue catch-up with his Dad and Mum), so it was always going to be a bit of a sad day.

But a visit from our niece and her 2 1/2 year old was a wonderful diversion, especially as our gorgeous granddaughters were still off school and could join us for lunch.

Tuesday/Day 5

Fatigue Day - one day later than last cycle but maybe that was because I wasn't quite as active.  We managed to get Mum to a hairdresser to tame her wild white locks but that was about all I could do.

Started the Filgrastim injections again today (5 days).  For some people they seem to cause inbearable joint pain but once again I seem to be lucky and feel no effects 🍀

Of course having plenty of flesh around my middle makes it easier to inject too😁

Wednesday/Day 6

Dawned bright so we decided a trip to the seaside would do us both good, but it turned out I was having another Fatigue Day.  I managed a walk along the seafront but when it came to getting back to the car all my energy had vanished, so I sat in a clifftop bus shelter and waited for Ian to get the car.  Starving hungry we stopped for fish and chips and then as soon as we got home I just had to go to bed.  

Unfortunately we had to go out again to the Unit for the weekly PICC line flush at 19:00 and the traffic was hideous - good job Ian’s choir practice had already been cancelled as I really wasn’t capable of driving.

Thursday/Day 7

Really low,  both in energy and mood.  I think I’m having a “what's the point of it all” day. 

And my head looks so ugly today

The hair that hasn’t actually fallen out is now growing so I have a darker fuzz in places and it looks menacing somehow - I’m petrified I shouldn’t have shaved it off and that I’ll have damaged it for good.

On the plus side -  my armpits and legs have never been so smooth 😉

Overall, I've had less severe side effects this cycle - definitely more fatigue but no bad headache, no oral thrush, constipation less, taste better - so I must be grateful and hope tomorrow will be a brighter day 🌞🌞🌞

2 down, 4 to go = 1/3rd way through - come on January 25th

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 🙏🏻