T Cycle 1 - Days 8-14

We had a meeting with Onco last Monday and for once she was running early.  She was very pleased I didn't have any severe side effects to report and will arrange for some mouthwash to be prescribed for the next infusion to help with the sore mouth (she did offer it there and then but at the time it wasn't too bad - got worse again after we'd seen her! 😢).  Low platelets, low WBC and increased liver function were all to be expected and nothing to worry about and with regard to the lack of taste/horrid taste - sorry nothing she can do.

We raised the subject of holidays, minor in the big scheme of things I know but although I've been PFTWHFTB we felt we needed to know where we stood.  Have the blood clots put the kibosh on long haul flying for good?  Thankfully the answer was "No" they are a known PICC line related issue and once that's gone I should be OK.  She confirmed that the anti coagulant injections must continue for 6 weeks after the line is removed. 💉💉💉. 

(Quick rant about my GP - Onco wrote updating him on the blood clots and asking him to take over issuing prescriptions until mid March.  So the first one I collected, on Christmas Eve, was for just 10 syringes - not sure how he thinks that's sufficient.  Repeat request immediately put in - no wonder GPs say they're overworked, mine creates his own, he could easily have done 28 days worth!!!)

So that was fantastic news about the blood clots and then I asked about holidaying whilst on Herceptin (injections continue every 3 weeks throughout 2019) and I think she must have read my mind as her reply was "well, probably alright as long as it's not to Timbuktu".  No, said I, only Kenya 🦁🐘🐒 🐘🦒

Unfortunately she has said we need to stay within Europe as medical facilities are considered better.  I'm really sad about that, but at least we can still travel and there are loads of places on our map still to scratch off.  That's of course assuming I can get travel insurance at an affordable cost and, if not, Scotland and Wales here we come 

Otherwise, this week has continued much the same as the last one; a few minor niggles to add

• occasionally numb toes
• fingers wizened like they've been in water for ages
• red, flaky cheeks (chemo rash)
• unbelievable flatulence 😲😲😲😲😲
• vertigo - this first presented on Christmas Eve and got steadily worse.  On 27/12 (Ian's Birthday) I headed out shopping but quickly realised I shouldn't be driving.  It comes and goes and seems to wear off as the day progresses
• a sudden increase in freckles - I've always had the large mole but the freckles are new

I've know I've already talked about hair loss but here's a new twist.  Although I was aware the effects of chemo would be on most/all hair (it doesn't discriminate!) I wasn't prepared for one particular knock-on effect and actually I thought I was imaging it at first.  Then I read someone else's blog on the subject and realised it wasn't just me - I really wish I could find that blog again and quote from it as the author described the problem far more delicately than I'm about to - you have been warned! 

OK here goes - red face with embarrassment 😳😳😳😳😳 - when you have a completely bald undercarriage, weeing is a bit of a hit and miss affair.  I never realised that pubic hair serves a purpose in directioning wee and without any the wee goes where ever it likes, including butt cheeks and (if you're like me and won't sit on public toilets) down your legs.  Once you realise this happens, its easily dealt with but for a short while I'd happily re-dress as normal and wonder why I felt "damp" in unusual places.

There I've said it - and I'm still embarrassed 😳😳😳😳😳 but I promised to be truthful and I pray to God (the real one) you'll never be in the situation but ................... at least you'd know 😜

T Cycle 1 - Days 1-7

As anticipated, last week was fairly quiet.

Straight after the double dose of poisons (Herceptin and Docetaxel) I felt really good and we were able to enjoy a lovely evening with friends.  Then a few side effects kicked in; 

• fatigue
• mild diarrhoea
• bloating
• stomach cramps
• sore mouth

Also my taste buds have done a complete runner again (FEC Cycle 1 was the last time so can’t really complain) and my mouth just feels slimy (thankfully not oral thrush this time though).

It’s difficult to find things to eat - I’m tempted to go for something highly flavoured but then it ‘burns’ - I think I want something and then as soon as I try to eat it YUK!!!! At the moment my favourite food is salad as it’s nice a cooling on the mouth and also pears.  Still it’s doing wonders for my waistline.

I mentioned before about the now daily injections - actually two injections for the last 7 days - and it’s interesting 💤💤💤 😜that they are so different.

The immune boosting one is a super fine needle (A) that slides into my flab really easily, then the needle retracts back into the syringe and provided I've remembered to take it out of the fridge 1/2 hour beforehand it doesn't hurts at all.  The other one (anti coagulant) is a thicker needle (B) and sometimes hurts like hell when I stick it in (and it doesn’t retract).

The spent needles certainly mount up quickly 💉💉💉 time for a new 'sharps box'

The one thing that seems to fluctuate quite wildly is my emotional state - sometimes I find it really easy to cope with everything (not just cancer/chemo related stuff, but life in general - including Mum 👿) but equally I can burst into tears for the silliest of things.

Quite a while back, just after I'd first started chemo, I heard about Look Good Feel Better workshops which are put on by a charity and arranged under the MacMillan umbrella.  Without finding out much about it, I signed up for one at Maidstone Hospital for next February but I got a last minute call to say a vacancy had come up on last Monday's workshop, so I went.   Maidstone Hospital is massive and parking is a nightmare -  I drove in and out of 4 car parks before I found a space - I'm dreading it when I have to go for daily radiotherapy.  Whereas my lovely Galton Unit is small and friendly, the Kent Oncology Centre is vast and impersonal and the waiting area is more like a railway station concourse.  Of course I was ridiculously early and had to hang around for ages avoiding the coughs and sneezes 🤧🤧🤧of everyone around.  Eventually someone called for those on the workshop and we went into a very small room which had been set up with "work stations" each consisting of a chair, vanity mirror and a make up bag.  My heart sank, it was just all about make-up which you'll know from how I look really isn't my thing.  But everyone around seemed very nice and friendly and I felt confident enough to take my Baker Boy cap off and show the "real me" - I was so glad I did, another lady wearing a wig said she couldn't as she looked - her words - like a baby orangutan.   But after encouragement from me and another bald lady, she did and was so chuffed with herself.    The other 9 had full heads of hair!!!

The "goodies"

The ladies running the session were all professional make-up people and volunteer their time to help us and the huge bags of goodies are donated by various cosmetic companies (not everyone has the same brand).  And they demonstrated a routine from removal to application - and this is where I began to struggle.  I can't explain why, but me and make up just don't go well together plus of course it is nigh on impossible to put stuff on your eyes when you're blind without glasses.  Anyway to cut a long story short, I looked around me at one point and everyone looked quite lovely with their newly applied slap and then I looked at myself and I just looked dreadful - the tears slowly started to fall and I had to leave the room.  I did go back in and try to continue and one of the lovely girls tried to fix my eyes but then she put some hideous bright orange lipstick on me and that was it - I had to go.  Someone kindly got my handbag for me, they removed the slap and I left the place in tears.

The whole experience had the complete opposite effect of what was intended - a confidence booster - I'd walked in full of confidence,feeling slim, nicely dressed, and able to help someone else brave their bare head - and I left a snivelling wreck - confidence shattered.

Lesson learnt  - just because it's free, doesn't mean it's for me (research needed in future!)

(This isn't meant in anyway to denigrate the Look Good Feel Better workshops or the lovely people who generously give their time and expertise and the cosmetics giants who support the charity - I did try to pay for my bag but they wouldn't hear of it)

New Drugs and Turning Into A Pin Cushion

Well, despite a long, 6 1/2 hour, day at the Galton Unit on Thursday, I'm delighted to report absolutely no side effects from the Herceptin.  The helpful Macmillan and Breast Cancer Care leaflets told me the first two of these 18 doses would be by drip and, provided no adverse reaction, the remainder would be by subcutaneously into the thigh but in actual fact this first one was jabbed straight into the leg - I don't mind that at all, in fact I prefer it as it's over and done with quicker.

Well that was the interesting bit, thereafter we just had to sit around having temperature, and blood pressure etc monitored every 1/2 hour - and we weren't even allowed to leave the Unit for a walk about which got a little bit boring and uncomfortable 😴  Next time the monitoring is only for 2 hours and then after No.2, provided no problems, just a half hour wait each time.

My supply of daily anti coagulant syringes finishes on 24/December so we thought we'd better check if that was that finished with or whether I needed to continue.  Lead Nurse checked with Onco and unfortunately confirmed that she had already written to my GP asking him to issue repeats up to the the middle of March - eeeek! 😱😱😱😱😱😱

Because I had to start the steroids on Thursday morning in preparation for the "nasty" Docetaxel (that's the banded name - generically Taxotare hence FEC-T) on Friday, they gave me a rather poor night's sleep with very restless legs so I wasn't on best form when we got to the hospital on Friday for our 11:00 and they were running late.  Changing to this new drug was nearly as scary as starting with the first FEC back at the beginning of October - this now seems like a lifetime ago and FEC became my friend by only producing minor side effects for the first week or so.  Obviously I'm choosing here to forget the complete hair loss and blood clots which are of course ongoing 🤣🤣🤣🤣🤣

But despite everyone being really, really busy, my nurse was as lovely as ever and even when the machines kept flashing up "air lock" an "occlusion" (which did cause Ian a few worries) she calmly explained it was something that Docetaxel was "bubbly" and therefore prone to causing bother and we shouldn't worry.  In the end she just turned the monitoring machine off and let the solution drip through until an alarm on her phone went off - technology eh?  

Then came the next bit of pin cushion news - because my bloods and platelets went so low last time, I now have to start the immune boosting jabs on Day 2 (today) for 7 days instead of Day 5 for 5 days.  But because I'm already injecting daily in my stomach these ones will have to go into my thighs - but not really a problem as there's plenty of flesh around them.

We were all done by about 13:30 and as soon as I was home I went straight to bed for a nice 4 hour sleep.

Today (Saturday) I feel as right as rain, no nausea, headache or anything really - except a slight touch of the 💩💩💩  (makes a change from the usual FEC constipation).

So hopefully I'll have nothing much further to report in the coming week.  We have a week's respite from hospital visits and not back til 24/December for Onco and Line Flush.

Feeling relieved 😌😌😌😌😌😌😌😌😌😌

Facing A Change Of Drug & FEC Side Effects

This coming Thursday I have my first of 18 injections of Herceptin - these are given every 3 weeks so that's 52 weeks, a whole year - the thought of that is almost as scary as the thought of the chemo was and depending on what you read (as per usual) the side effects are either minimal or horrendous 😱😱😱😱😱   But for my particular HER2+ cancer, Herceptin is the wonder drug - before it was licensed for early stage breast cancer in 2006 the prognosis for HER2+ cancers was the worst around.

Herceptin is an immune targeted therapy, it works by attaching itself to the HER2 receptors on the surface of breast cancer cells and blocking them from receiving growth signals.

One of the major side effects is irreversible damage to the heart, so I'll be having regular ECGs to check how mine is coping (I've had 2 already just to check my heart's OK to even start on it).

It's all rather daunting and I have read that some people choose not to continue with Herceptin as they suffer so much - but as this drug is the sole reason I've had to have the f*cking chemo in the first place (Herceptin isn't given on it's own), I'm jolly well going to do my damnedest to put up with whatever it throws at me 👸 (wonderwoman)

Thursday will be rather a long day as we have to hang around at the hospital for 6 hours whilst I'm monitored, as in rare cases an allergic reaction can happen.  The other usual side effects are possible and, as before, I'm aware of them but don't intend to dwell on them 😟😟😟

Then on Friday I have Docetaxel (taxotare) the "big daddy" of chemo - as the nurse giving my first FEC infusion described it as she was injecting with me the "mummy and babies".  No, she absolutely should not have said that, but she did and I can't get it from my mind 👿👿👿👿👿👿  Also Onco sanctioned a week's delay in giving me this so that I wouldn't risk missing an important event - her take on Docetaxel (T) is that people who have done well on FEC tend to feel worse on T - well that's me b*ggered then 😭😭😭

So instead of getting myself more and more wound up with the side effects I might get, I've decided to look back and remind myself how well I've actually done (compared to what I feared) with the probable/possible ones for FEC (as listed in the Breast Cancer Care FEC Booklet plus a couple of my own which may or may not be FEC related) .  

So, all in all, FEC hasn't been too bad for me 🤗🤗🤗🤗🤗

FEC Cycle 3 - Days 15-21

Well I’m pleased to say that after 4 days of blood tests my platelet count had increased sufficiently and the daily visits to the hospital stopped.  The “superficial” clot in my forearm eventually started to shrink and is now just a small hard lump which is not painful at all.  I’m just keeping my fingers crossed that the real clot in the PICC line vein is also doing what it should 🤞🤞🤞

I still have to self inject with the anti coagulant daily until 24/12 and unfortunately it’s beginning to be a bit of a problem as it’s getting quite painful - both actually sticking the needle in and also when the fluid goes in - so I’m trying to do it a bit slower to see if that helps.  I mentioned it to the nurse doing my line flush this week but all she said was that the chemo affects all parts of the body including the skin so it’s bound to become more sensitive - great.  I’m just keeping my fingers crossed that the injections stop after the 28 days as I have read (and one of the nurses said) they are sometimes necessary for 6 months - OUCH!!!

My biggest fear with the DVTs is that it will stop us holidaying - sometimes when I'm really down, all I can think about is how long until I can book a holiday (OK, maybe insignificant in the big scheme of things but something we love to do).  Our lovely No.2 (step)daughter bought us a scratch off map a couple of years ago and we've been doing quite well to date

Of course Australia should have been "done" last month but we'd been debating whether 3 nights in Hong Kong meant China could be rubbed off too - irrelevant now 😞😞😞😞😞

At the weekend I went down with a cold 🤒but, despite all the dire warnings I’ve been given/read, it didn’t kill me or put me in hospital so that was good.  In fact I seemed to get over it quicker than normal.

Other than that it’s been a quiet week, Tuesday was a lovely sunny day so Ian took me for a long walk in the woods (makes me sound like a dog 🐶) - the first for a few weeks and I was surprised how much slower I had to walk than normal but it was lovely to be out.

I mentioned previously about inanimate objects causing me problems - this is a prime example

On Wednesday evening I sat on the sofa all evening with my “condom” hat on but when it was time for bed it had mysteriously disappeared.  We searched high and low and it was nowhere to be found, so eventually we gave up and I wore the Nepalese Peasant Hat instead.  Thursday morning I glanced at my slippers by the bed and there, nestled inside my right slipper, was the flipping hat 

- how on earth did it get there and how could I have walked around and not noticed a screwed up hat competing for space with my foot.

This kind of thing happens all the time - things just disappear!

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 ☀️☀️☀️