The Last Post (Hopefully)

The meeting end July with Onco went very well, my latest ECG results showed a slight improvement with the LVEF up to 52% (from 51%) so Onco was happy that I was OK to continue on Herceptin with another ECG/review booked for 3 months time.

August was quite a busy time, being the anniversary of diagnosis and treatment.  First on the list was a Mammogram - quite a big moment as it was solely by this method that the tumour was found in the first place.  I realise the chance of anything untoward still lurking in my breast is highly unlikely given the vast amount of poisons 💉💉💉💉💉 I'd had this last year - but of course my emotions will always overtake logic 😢

It was done at the Breast Care Unit and the radiographer (mammographer) was very sweet and said that most women find their post cancer checks an emotional time and that tends to continue down the years.  It was over very quickly and fortunately not nearly as painful as the last ones.

I wasn't really sure how I'd get the results as I wasn't due to see God (the surgeon) until mid September and nearly 6 weeks seemed a jolly long time to wait.  So after a week I telephoned and the Breast Care Unit confirmed the results would be sent to God as he'd requested the mammogram.  But when I spoke to his secretary she told me that the Breast Care Unit would automatically get in touch should anything show up on the scans but, if I'd like an earlier appointment with God, she had a cancellation two weeks before.  I nearly bit her hand off.

As I've mentioned before, not being free to travel has been hard for me and as far as I was aware it would be difficult to get insurance until I had been cancer free for 2 years.  But as our bank now wanted to charge more for Ian (70+) last week we thought we'd give Barclays a try as they offer cover upto 80yo and we were prepared to accept exclusions on anything cancer related.

I went through the medical screening questions first and then Ian and she quickly told Ian that he would be fully covered for all his, mostly minor, ailments and could he put me back on the phone.  Wait for it "I'm sorry but .........................." but no, she told me I can be fully covered for everything and she'll write to confirm, and gave me a reference number and result code FC = FULLY COVERED 😁😁😁😁😁  So once we get the final clear from Onco later in the year, there will be nothing to stop us doing long haul travel.

Today was the appointment with God and the queue for the carpark was massive when we got to the Medway so I left Ian to park and went in.  I eventually managed to use the computerised check-in (system on a go slow) and was told to go to Area 8 as the Outpatient Depts had moved.   One of the volunteer guides kindly gave me directions and I set off to the other side of the hospital but couldn't find the Lift 12 he was talking about.  Luckily I spied one of the Breast Care Nurses I'd seen last year so asked her and she was heading for the same area, but the lift was out of order so we'd have to use the stairs - no problem.  Except when I finally got up there and I went to book in (again) I was told I should be in Area 5 which was right back near where I'd started.  Apparently the system is programmed to send all patients to Area 8 even though it's incorrect - how ridiculous.  By now it was past my appointment time and I didn't know where Ian was or how he'd find me (as per usual his mobile was safely tucked up at home) and I got a little upset 😢 (stupid really, we're pretty convinced everything will be ok but ..........).  Anyway they kindly said they'd phone through and say I was on my way and also leave a message at reception for Ian but when I eventually got back to the right place, Ian was already waiting having simply asked where God's clinic was held and been told Area 5 from the start and the receptionist there updated him when he got the message through I was on my way.  All's well that ends well and as usual the clinics were running late so I had time to compose myself.

God was having a day off and so we saw one of his team (demi-god ?) - no problem, very pleasant chap - who confirmed the mammogram showed nothing in my left breast and -incredibly importantly - no evidence of disease in my right breast - so I am officially a NEDDIE 🦓🦓🦓🦓🦓 (no donkey emojis but zebras are pretty close).  There followed a quick physical examination and so neat is the scar he actually had to ask where it was.

Apparently before I started on the Oestrogen blocker Letrozole back in February, I should have had a bone density scan so they have a reference point to measure any deterioration against, as restricting the body's take up of oestrogen can cause osteoporosis.  I'd read about people having them and had idly wondered why I wasn't, but just presumed it was not my Health Trust's policy.  Anyway, one is now being arranged and if this is the only "omission" that's been made with my care/treatment then I'm not going to fuss.  Update: reading back over letters from Onco, she didn't arrange for regular dexascan as I'm already having Zolendronic Acid anyway.

So now, although I have a few months left of Herceptin, years of Letrozole and follow up appointments etc, I feel it's time to close the door on this chapter and change my mantra.  This will hopefully be my Last Post 📯📯📯📯📯 and hereinafter I shall just try to HFTB - Hope For The Best (and stop continually preparing for the worst)

Thanks everyone for being there.

🎈🍾🎈🍾🎈🍾🎈🍾🎈🍾🎈

One Year On

July has brought with it lots of emotion as the memories of last year come flooding back.  This time last year I'd just had the biopsy and had a 10 day wait to find out the results - I was PFTWHFTB and Ian was being his usual optimistic self.  

BANG the diagnosis: Grade 3 23mm invasive ductal carcinoma

Unfortunately for me, despite the successful surgery, after numerous retests my cancer was diagnosed borderline HER2 positive (it had an over expression of the human epidermal growth factor) and so I then had to have 18 weeks of chemotherapy in order that I could also have trastuzumab (Herceptin) which is every 3 weeks by injection for 1 year.  Herceptin sticks to the HER2 protein and prevents the epidermal growth factor from entering cancer cells and therefore hopefully preventing the breast cancer cells from growing in a way that the body cannot control.  However, the downside to Herceptin is that it can also decrease the heart's pumping ability, although this is supposedly reversible once off the drug.

My body has coped incredibly with all the poisons that it’s been subjected to and I waltzed through radiotherapy virtually without any effects.  So I was pretty sure Herceptin would be a breeze too and certainly I felt pretty good until the palpitations started and I put these down to stress, but ..........

Regular ECGs are done to monitor my heart and apparently the last one I had end May showed that the LVEF (left ventricle ejection function) had dropped to 51% – which is below  the 55-70% "normal" range.  So another ECG next week and then a meeting with Onco the following week.  According to the nurse who did last Friday's injection, Herceptin is stopped if you go down to 50% (the Galton Unit nurses are normally very careful what they say - apart from the student who stated I was on Herceptin because my cancer was incurable 😈😈😈😈😈- and I don't think she realised what my last scan was otherwise she probably would have kept that nugget to herself.

So we’ll have to see what Onco says although I’m pretty sure if it was a serious problem she wouldn’t have left it 2 months for a repeat ECG.  And if Herceptin does have to be stopped early then at least I’ve had 6+ months worth and actually there are trials being done which suggest that is as effective as 12 months.  Anyway, I can do nothing but wait and trust in Onco - as always.

I'm due to see God the Surgeon mid September and knew that he would be arranging a mammogram sometime before then.  Whilst I was at the Medway last Friday, I popped into the Breast Care Unit to find out if it would be done there; I know all mammographers are well trained but somehow I would prefer the first one to be done in a specialist environment, rather than a portacabin in a car park somewhere.  They confirmed it should be done at the Unit and surely enough the following day the appointment came through for early August, so not too long to wait.  It’s so stupid as there is no reason for me to worry and having had all the drugs over the last year, my odds should be better than anyone’s. 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻

There has been a lot going on in our lives for the last year; diagnosis, treatment, dreadful events for family and friends to cope with, my Mum going into residential care and now selling her flat and I seem to be in a constant state of anxiety.  The tiniest things get totally blown out of proportion in my mind and I spend days, and often nights, with my stomach knotted up with worry and the tears flow easily 😢

I really am so lucky my lump was found and so grateful for all that has been done so that a year on I am still here (sadly I know of those that didn't make this milestone) but there remains this constant nagging worry I’m never going to get off the treatment wheel, be it cancer or now heart related.

A Quick Update

It's been a long time since I last posted so I thought it was time for a little catch up, although there really isn't much to tell.

If you'd told me 4 or 5 months ago that I could actually go several days without thinking about cancer and/or treatment, I just wouldn't have believed it - but it's true, cancer no longer dominates my thoughts, although to be fair I have had an awful lot of other things on my mind (Mum in hospital, then going into care made the last 6 weeks rather traumatic).

Anyway, firstly on the hair front - it's growing quite well, although still very soft and fluffy.  I may even ask Chloe my hairdresser to give it a little tidy up when she cuts Ian's this week.

There are still very few hairs under my arms (yessssss!), about 50% on my lower legs and very random growth in other areas 😉

My fingernails however are in a pretty poor state, the ridges I showed a picture of back in March have now almost grown out and the nails are very soft and squidgy and they just crumble away and mash up at the slightest touch.  The ends of my fingers feel very rough and at times can be quite sore.  Interestingly my toenails don't seem to have been similarly affected.

Tinnitus remains another annoying side effect, particularly in the evenings/night, whether it's worse when I'm tired I don't know or maybe just more noticeable when there is less background noise.

And I still have sores up my nose, which come and go and seem to flare up when I get stressed (most of the time at the moment)

But ................................ it's all very minor and all very manageable.

We had a routine meeting with Onco a few weeks ago and she was absolutely delighted with the "remarkable recovery" (her words) I've made from the chemo and the way I breezed through the radiotherapy 🦸🦸🦸🦸🦸

This Friday I reach another mini milestone - halfway through my Herceptin injections!!

Isolation

When Ian had his prostate cancer 10 years ago it was a relatively quick process - diagnosis then operation, job done.  Luckily he didn't need any adjuvant treatment and apart from the regular check-ups, which he still has, that was that and we simply carried on with life.

So I never imagined what an isolating experience it would be and, along with the hair loss, this has probably been the most difficult aspect to deal with (but isn't that so often the case - what you think will be hard is easy and things you never thought would bother you - or didn't even think about full stop - would be hard)

Since mid July last year my thoughts (both waking and in dreams its seemed) have been about cancer and practically nothing else ... will it be cancer ... what will the treatment be ... will the operation be successful ...   the dreadful chemo wait ... what side effects will I have ... and so on.  And probably Ian and I have talked of very little else too.

It has been impossible to make firm plans because of treatments or the worry that side effects might affect plans, so we've lived in a kind of limbo state for nearly 8 months.

Because I've had nothing else in my mind and no other topic of conversation, often I've not felt able to instigate contact so I waited for family and friends to contact me - so, to anyone who felt “it’s her turn to get in touch” then I’m really, really sorry but I simply couldn’t.  And a huge “thank you” to everyone who persisted with me without getting much in return.

A few days away this week proved to me that I can put cancer to the back of my mind for a brief while and now I’m home I must make a conscious effort to do so.  Of course the thought that dominates now is .... will it come back

But I’ve only just finished radiotherapy and maybe I'm expecting too much of myself too quickly - time is a great healer (so “they” say)

Last Injection

Wednesday saw another milestone pass - the last of my injections whoop whoop 🎉🎉🎉

I had a quick tot up and all in all I had 143 of the little b*gg*rs and all self administered 😇

•   36 of the immune boosting drugs post chemo injections
• 107 anti coagulents because of the DVTs

I can honestly say I felt each and every one of them; the immune boosting ones were nice with very thin needles but the Fragmin were chunky things.  One box of 5 in particular were really, really difficult and I had to force them through my skin ouch!!!.  Ian reckons the machine making them must get blunt at some point and need sharpening or replacing and this lot were probably the last ones off the production line before that was done.

Strangely the very last injection really hurt too and it gave me this little reminder - just so I don't forget too quickly.

PS.  Chose to forget about the ongoing Herceptin injections 🤪

Radiotherapy All Finished

Wow, these last 3 weeks have absolutely flown by and today I had the last of my 15 blasts of radiotherapy.

I didn’t blog last week as apart from "went to hospital and had R/T" there really wasn’t much to say.  My hair is continuing to grow (or sprout - Mrs Potato Head ) and my fingernails are a bit weird, some look like they're stained with nicotine and others, especially my thumbs, have deep ridges on them (not very attractive digits at the best of times).

My taste is more or less back to normal, but my mouth is still quite sore at times - like I’ve been chewing on a particularly crispy baguette 🥖🥖🥖🥖🥖

Having to go to Maidstone Hospital has meant spending a lot of time in the car and it’s been a minimum 2 hour round trip each time - considerably longer some nights when the traffic has been bad.  Ian, bless him, has driven me every time bar one and that was only because he took my Mum to the doctor.

On Tuesday, as well as the usual zapping, we also had a review meeting with a Macmillan Radiographer who was a lovely lady.  She wanted to hear all about the side effects I'd experienced and any concerns I had, so it was a very, very short meeting - no side effects and no concerns - qué será será 🤗🤗 🤗

I am of course aware that the side effects can continue to manifest in the weeks after treatment (skin reaction akin to sunburn) and, in the case of fatigue, for months afterwards and obviously I PFTWHFTB.  She was clearly delighted with my positive approach to the whole experience and I came away feeling quite proud (if that's not a dirty word) as to how well I have coped, particularly as I'm not usually a "glass half full" person.

As I mentioned before, Maidstone Oncology Centre is vast (sneaky photo on our way out as no one there)

and the patient call system is automated so you sit around in a large waiting area until your name is called in a very oriental sounding voice - we became adept at listening out for "Jenfer Klook to LA6".  There are 6 machines (linear accelerators) delivering the radio beams, each in their own large suite and in blocks of three.  For the first week I was always in LA6, which was right at the end of the corridor and had its own little sub-waiting area to sit once you'd changed into the gown (you're called about 10-15 mins in advance; it only takes me a minute or so to change but I guess some older folk need considerably more time).  The next couple of weeks I alternated more or less daily between LA6 and LA3 and the waiting area for LA3 is very open and cold (floor to ceiling windows) also they seem to do more men in LAs1-3 so often you will hear someone being asked in a very loud voice "Is your bladder full yet Mr X" or "Can you hold on a bit longer Mr Y" - which I feel is really embarrassing for all parties.

There is a bell to ring here too (although we’ve not heard it rung in the previous 14 visits we’ve made) and the receptionist asked if I was going to ring it.  But no, somehow it seems wrong to: a) done it once after chemo and b) it’s so large and impersonal.  That said as I was waiting for my last zapping, someone rang it!!!

For me, the end of radiotherapy is another huge milestone in the treatment and the end of "invasive" treatment.  I'm just left with the injection every 3 weeks until mid-December (had No.5 at Medway this morning)  and 5 years of hormone tablets which, unless I start to suffer the horrendous joint pains reported by some, will be a breeze.

My blogs will be a bit less frequent from now on (I can't make it up if there's nothing to write about) but if there is anything of interest to report I will surely post so please do check in from time to time.

Meanwhile it's time for a few “thank yous” (looks odd I know, but I can't bear an inappropriately placed apostrophe 😛)

• to all the staff at both Medway and Maidstone cancer units for your incredible kindness

• to all of you who have helped keep my spirits up over some testing times (some very special people especially who I won't embarrass by naming but I know you'll know who you are)

• last, and by no means least, to my Darling Husband

 You let me stay silent back at the beginning when I just couldn't speak

You let me talk, sometimes endlessly, often both day and night

You held me when I was frightened and let me cry and cry and cry

You let me sleep in late when I needed to but always made sure I was up if I had to be

You took on Mum when I couldn't face her

You took on the household chores without a single moan or grumble

You cooked me delicious meals never really knowing if I'd eat them after your efforts

You drove me around and took me for walks both long and short

You came to every single appointment

You've been my shadow, quietly there, checking that I'm OK and coping

You didn't agree with my PFTWHFTB approach but you understood it was my way 

I remember how I scoffed when you said right back at the start that you'd be with me every step of the way - how could that help, it was ME who would be going through it.

But I simply couldn't have got through it without you - and words cannot express my love and thanks for all you have done and, I know, will continue to do.

💜💛💚💙💜💛💚💙💜💛💚💙

And as I sit here typing this and enjoying a glass of delicious champagne 🍾🍾🍾 (thank you Sis) I feel it's also now time for our lives to start moving forward, little by little, step by step.

I love you all 💕💕💕

First Week of Radiotherapy

As well as starting radiotherapy this week, I have also started the hormone therapy - Letrozole - which decreases the amount of oestrogen the body makes (my tumour had an 8/8 score ie. a strongly oestrogen receptor positive cancer).  Along with all the other forms of treatment, this comes with loads of dire warnings of side effects and indeed my step-mother was on it a few years ago and stopped taking it as she suffered so badly.  But as before, I'm not going to dwell on what might be and just take it as it comes - PFTWHFTB 

Although I knew roughly what to expect after the planning session, I was still a little apprehensive when we arrived at Maidstone Oncology Centre Monday afternoon 😟😟😟  The receptionist couldn't have been sweeter (in contrast to our last visit) and told me where to wait and that as it was my first time someone would come and collect me - "but by Tuesday you'll be an old hand" she said.  

A male (again!)  trainee came to collect me and gave me a plastic bag (for my clothes) and a pair of non slip socks - Health & Safety requirement apparently - then told me to change into one of the button-through tops and wait to be called.  The tops are colour coded for size and this was the smallest!!

The room is quite huge for just one machine but I'm guessing that's because it gets quite warm.

As in the planning session, the tattoos had to line up exactly and as they aren't easy to see when the lights are down, I was drawn on with a marker pen.  The two female radiographers (hurrah!!) were lovely and pulled me around until I was lying exactly where they wanted, whereupon the couch is raised up towards the ceiling and nearer to the machine.

The girls then leave the room and the machine moves itself around me and delivers it's dose from two angles.  There is a TV screen on the ceiling showing generally badly taken pictures, I've seen three sets so far; animals (mostly over exposed), flowers (all taken from above - bad angle) and landscapes (probably the best set).  But it keeps you entertained.

It's over in a few minutes, in fact it takes longer to get on the bed and in position than anything else.  I'm lucky in that it's my right breast as those receiving treatment to the left have to hold their breath to protect against damage to the heart (when you take a deep breath, your lungs fill up and your heart moves away from your chest).

Each time you go, you have to double check the time of the next day's appointment as they often seem to tweak the timings by the old half hour.   Mine are mostly late afternoon and it's very quiet so I often get done a little early.

Today, Friday, was quite exciting as the small gowns were a different colour.

They also had Velcro fixings instead of poppers which was fine until after my treatment when I managed to attach the front to the shoulder and leave my boobs completely exposed 😵😵😵😵😵

Also I seem to be the only person wearing the non slip socks -  maybe they were meant as a joke.

As far as side effects go, I have a slight "smarting/itchy" feeling around the lymph node scar but that's all.  As recommended I'm moisturising with E45 cream twice daily and keeping my fingers crossed.

It's quite unbelievable how quickly this week has flown by - already I've had 5 out of the 15 zappings and whilst I know it does absolutely no good to think this way, my God (the real one) how I wish this was the only treatment I'd needed after surgery.

Docetaxel Side Effects

As I'm now 4 weeks past my last infusion, I thought it was a good time to reflect on the side effects of this particular drug - known as The Big Daddy as I was helpfully told at the beginning.

Once again, it would seem I've been incredibly lucky as I really can't say I've "suffered" too badly at all.  OK, there have been a few things to endure along the way, as I mentioned in my posts at the time, but all in all it wasn't too bad.

Radiotherapy Planning Session

My rearranged radiotherapy planning session took place at Maidstone Hospital (no facilities for R/T at Medway) and we had to allow at least an hour for traffic and parking which is a nightmare.  I was asked if I'd prefer any particular time of day for the appointments and I chose afternoon so we didn't have to get up too early and/or battle rush hour traffic, but in actual fact they're mostly quite late in the afternoon so I think we’ll get stuck in the evening traffic.  Never mind, working folk have to fit it in around their jobs but we're lucky and have lots of time to spare.

As I mentioned before this Cancer Unit is huge and impersonal, but we found our way to the R/T reception which unfortunately seemed to be manned by someone in their very first day of work (despite looking mid 50s!).  I gave my name and appointment time and without even looking up at me she uttered the dreaded words

- "The computer system is down so I don't know where you have to go"

- "Well I've never been here before, so I don't know either" I batted back.  

- "What's your name?"  I repeated it  "You're not on my list"  

I explained about the rearranged appointment

- "What's your name?" This third time she actually wrote it down

Luckily a colleague with a brain turned up then and took over, told me to take a seat in the waiting area and phoned though to the relevant person to say I'd arrived.

A youngish, male, radiographer came out to collect me and asked me to take all my top half clothing off and put on a button through shirt, but NOT to undo the shoulder poppers as this causes no end of problems - intriguing!

I was then taken into a fairly large room with a couch and CT scanner and the chap asked what treatment I was expecting as well as the usual name and DOB.  Fortunately we both agreed it was for radiotherapy to the right breast.  I was then introduced to another radiographer (male and very, very young).  I don't mind who treats me and I was aware it might be males but when the third bloke appeared I did feel a little bit outnumbered especially as I knew I was going to end up topless on a couch with my arms in rests behind my head!!!!  Luckily the 4th one to join us was female and a Jenny.

The couch is exactly the same as the one I'll be on for the R/T and has a wedge halfway down to stop your butt sliding down and removable underknee rests and arm rests.  (I forgot to take my phone in with me but it looked a little like this and was placed on top of the couch)

With my arms in the overhead rests I then had to shuffle up and down and measurements were taken to ensure I was in the correct position.  Then the purpose of the poppers was clear, once in position the radiographers could simply unpop the top of the shirt and pull it down.  I was drawn on, each side below the armpits and also on the centre of my chest, and then had to get off and on the couch again to make sure I would be back in exactly the same position.  

Once all 4 of them were happy that the marks were in the correct places, they all left the room and I was told to stay very still while the CT scan was done - the scanner looks like a large polo mint to me. 

They all came back into the room, warned me of sharp scratches and there I was tattooed - uurrgghhh (no offence to anyone who has tattoos or likes them, it's just I don't!!).  Not being able to see what was being done, I imagined the tattoos to be huge but actually they're fairly difficult to spot - more like freckles, except blue.

So that's that all sorted and the first session is 18 February.

Catching Up

Sorry I've not blogged for couple of weeks but there hasn't been anything new to report - really just more of the same old side effects.

Although I’ve had my last chemo session, of course it’s still going to take a while for the effects to wear off (as it has done throughout) so why I’m expecting to feel totally normal is beyond me - just goes to show how stupid I am.

The first few days weren’t so bad really but I just seem to burst into tears at the slightest possible thing (even thought) but since then I’ve been plagued with the sore mouth, nose sores and the most dreadful taste in my mouth.

Thursday early hours brought violent sickness and diarrhoea - hospitals really, really don't want you if you're likely to be infectious so ask that you wait 48 hours after any such incident.  So that meant my radiotherapy planning session had to be cancelled and rearranged for the following Monday.

But the biggest one of all is the fatigue which has hit me like a 10 ton truck a few days after the infusion - every afternoon saw me dozing off the sofa.

Fast forward to the end of the second week and my energy levels have recovered slightly but any prolonged activity still leaves me wiped out.  My mouth is a lot better but still a general soreness most of the time, especially when I'm eating or drinking.  

On the hair front, it continues to grow but so slowly.  I'm finding the look of regrowth quite difficult to deal with (much the same as when it was falling out) - I didn't mind too much being completely bald but just having a patchy, thin covering of hair I don't like.  

I will try and continue to show photos, as it's part of what's happened to me and I can't pretend otherwise, but I think it'll be a long, long time before I feel comfortable to go without a head covering of some sort.

My Last Chemo Session

The side effects for the last week have been so minimal they really don't warrant a post of their own, so I'll keep it brief

• eyebrow/eyelash loss continues
• no tastebuds
• sores up my nose
• toothache
• mild neuropathy (numb fingers/toes)
• mild tinnitus
• no sleep for a couple of nights (steroid induced pre last chemo infusion)

but on the plus side the fluffy white baby hair on my head continues to increase, albeit very slowly and probably barely visible to anyone but me and Ian who know every inch of my bald head.

So on to the main event - MY LAST CHEMO SESSION - I really can't believe how the time has flown since 4 October and just remembering back now to the sheer terror I felt going in for the first session has me crying as I type this.  If only I had known then what I know now - it was do-able - not always pleasant, but certainly not the horrendous experience I'd imagined.

Knowing it was the last one, I was very impatient to get going and typically the Pharmacy Dept. hadn't sent all the necessary drugs down to the Galton Unit so my poor nurse (the lovely Suzie) spent ages chasing them down.  In the end I had the chemo infusion before the Herceptin subcutaneous jab - but it didn't matter which way round really. 

I know it's not the end of my treatment by any means as I'll still have to have

• 15 more Herceptin injections (every 3 weeks which takes me to mid-Dec)
• 15 daily radiotherapy sessions (due to start 18 February)
• 5 years of daily tablets of Letrozole (starting 18 February)

and of course I'm still injecting daily with the anti coagulant until 6 weeks after the PICC line is removed which will hopefully be next Wednesday (so that takes me to mid-March)

But somehow it is a huge milestone as once I get over this latest session I won't be having anything else quite as nasty 🤞🤞🤞 OK I know radiotherapy can produce it's own side effects, as can the Letrozole (oestrogen hormone blocker) but with these I will just have to revert back to my mantra - PFTWHFTB - which let's face it has done me pretty well so far.

So with the weekly visits reducing to once every 3 weeks, I thought it would be a nice time to take in cakes and a few Thank You cards for the wonderful nurses, receptionists and the tea/coffee volunteers who, each in their own different ways, have all made this whole experience so pleasurable (strange word to use probably, but it really was a pleasure to make friends and interact with these lovely people).

Tradition in the Galton Unit is to ring the bell 3 times when you've had your last chemo and so I did

Ring this bell

three times well

its toll to clearly say

my treatment's done

this course is run

and I'm on my way!

And it was incredibly emotional, everyone sitting there having their treatments clapped and cheered and the nurses gave me hugs - we were all in tears 😭😭😭.  I felt a bit daft saying "see you next week"

So, apart from the next 4 or 5 days when I'll probably feel a little bit rubbish, I'm done with chemotherapy and please God (the real one, because I truly believe Surgeon God did his job well) let that be forevermore 🙏🙏🙏🙏🙏

T Cycle 2 - Days 8-14

Another quiet week side effect wise - the only thing really of note is the sore mouth which has persisted.  The Difflam mouth wash prescribed by Onco is good; I don't think it helps the sores heal but it does numb the mouth which gives me some relief.

We saw Onco on Monday and discussed the random toothache.  I had a printout from my dentist which suggests it's a slowly dying root and nothing to worry about in terms of the bisphosphonates but Onco decided to be on the safe side and sent me off for a full jaw x-ray which should show up any real problems.

I'm beginning to see a light at the end of the tunnel with my treatment - the 6th and final chemo session is next Friday and although I know I'll go down for a while after that, at least once I start to recover a bit I should continue in an upward direction.

I also have the dates for the radiotherapy - a planning meeting at the end of January and the actual zapping starts mid February.  I also have my prescription for the hormone therapy which I'm to start in conjunction with rads.

Now for a couple of candid photos 😲😲😲😲😲

My hair is beginning to grow back and I'm starting to look a little like Mrs Potato Head.  As expected the hair is very, very fine and mostly white - it'll be interesting to see how it develops - I'm quite keen on ginger and curly for a change 😄 

But as one lot grows, another lot vanishes - the eyebrows and lashes are thinning almost by the hour

A quick update on Ian's Indigestion-Heart Attack - he was given a thorough examination at the Rapid Heart Clinic on Tuesday and everything is absolutely fine.  The Nurse was very keen to tell me that I did exactly the right thing in calling 111 and how they wished more people would!

T Cycle 2 - Days 1-7

Back at the hospital last Friday (4/Jan) for the second chemo infusion of Docetaxol plus the next injection of the Herceptin the Wonderdrug (no.2 out of 18).

As usual, before giving the doses the nurse went through various questions to ensure I was fit and well (this is in addition to the telephone call the day before), and despite me having mentioned my very sporadic toothache on several occasions over the last few months, she decided it wasn't safe for me to have the Zoldendronic Acid (bisphosphonates - bone strengthening and helps prevent cancer spreading to the bones) in case it was a sign of osteonecrosis of the jaw and especially as Onco was away.

I was unfortunate enough to be sitting in the "cold cap" seat which was being prepared for the next occupant.  I can't remember if I've mentioned cold capping before, anyway it's a method of attempting to not loose your hair by wearing an ice helmet 🥶🥶🥶 whilst you have your chemo infusions - I knew without any shadow of a doubt that this was not something I would ever consider doing and, having had to sit by the machine whilst it got to the correct temperature, I know I made the right decision ❄️❄️❄️  plus it doesn't work for everyone 😞

Despite being one infusion down, everything seemed to take forever and although we only had to wait for 2 hours monitoring after the Herceptin (in case of allergic reaction) by the time the Docetaxel was being infused I was practically falling asleep and then it kept bubbling as before so the hour drip through took nearer two.  Never mind though, home for a sleep😴😴😴

Another 7 days supply of bone marrow boosting injections 💉💉💉and beautiful Creme de Menthe coloured mouthwash were included in my take home Goody Bag this time.

As per last time, I have the horrid metallic taste and no food tastes remotely like it should - even water feels incredibly slimy; more like wallpaper paste - yuk!  My mouth is also very sore although the prescribed mouthwash is very effective and does relieve this.  Apart from tiredness which I've grown used to, I'm really not suffering from too much else at the moment.

Wow - if I'd been told at the start this is all I'd have to write about I just wouldn't have believed it!!!

But what we did get to experience last week was a whole different side to the wonderful treatment/service we've had at the Galton Unit.

On Monday Ian came home from golf complaining of a tightness across his chest which, although he thought was just wind 🌪️🌪️🌪️, hadn't improved with various over-the-counter medicines.  By the evening I was really quite concerned and as a regular watcher of Casualty for many years I am usually quite good at diagnosing a wide variety of complaints, so I seriously began to consider he could be having a mild heart attack (often mistaken for indigestion).  So I checked the NHS Website and, as he was showing other symptoms; tingling arm, dizziness, followed their advice

If you suspect the symptoms of a heart attack, dial 999 immediately and ask for an ambulance - don't worry if you have doubts. Paramedics would rather be called out to find an honest mistake has been made than be too late to save a person's life.

Except I didn't call 999 (probably overkill 😀) but 111 and explained I was probably overreacting, emotional time etc etc.  The operator went though various questions with Ian (the answer to the majority of which was "no") and promptly announced she was sending an emergency paramedic.

The ambulance 🚑 arrived within about 15 mins and Ian was checked over, lots more questions and an ECG done which they said looked perfectly normal but showing a potassium peak so he really should have a full blood test which would show up anything and everything going on.  We presumed they meant the following day via our GP, but no "we would recommend we take you in now!"

I followed by car and we sat and waited - of all the places to be when you're having chemo is NOT a medical waiting room (far too many germs and infections flying around) so I sat there with my cap pulled down low and a scarf over my nose and mouth.

It really was a most fascinating and enlightening wait, observing the comings and goings of many of life's unfortunates, most of whom knew each other and were obviously very regular visitors - clearly ED on a Monday night is where the party is 🎉🎉🎉

After about an hour we saw the triage nurse who re-ECGd Ian and sent the results off to be seen by a doctor.  By this time it was about 00:30 and the news came back quite quickly that the ECG was fine but would Ian please go next door to be seen by a doctor (MEDOCC a kind of non emergency GP dept within the hospital).  We were told there would be a 4 hour wait although there only seemed to be a 6 or so people in front of us.  Ian asked again about seeing his GP the next day but having been brought in by ambulance the receptionist was very keen for him to stay.  So we sat and waited huddled in the furthest corner away from possible germs.  Very little seemed to happen other than staff clocking off and going home and when Ian checked progress after a couple of hours, we were still 6th in the queue and there was now only 1 doctor working and a further 4 hours before we'd be seen.   Bit naughty really but then we played the Chemo Card and explained that I was desperate for sleep (true) and we really couldn't wait any longer (also true) - with that the receptionist agreed best to go the GP the next day and she'd photocopy the notes for us.

So whilst I receive the utmost care and attention whenever I visit the hospital - clearly other areas of it are really not fit for purpose.

Ian did see his GP and again expected the event to be dismissed but no, he has been referred to The Rapid Heart Dept - but as the wait is about 2 weeks Ian thinks he might have misheard!

T Cycle 1 - Days 15-21

Well I’ve been a little tardy with this post, but to be perfectly honest there hasn’t been a great deal to write about.

We were able to celebrate Ian's birthday with the usual family gathering, maybe a little less riotous than in previous years but then again our granddaughters are getting older too.

My energy levels have recovered nicely; the 2 mile walk down and back to check on Mum has been quite manageable and on Tuesday Ian and I did a long, 2 hour walk from our house across to the top of the North Downs which was fantastic although I was pretty shattered when we got home. 😴😴😴😴😴

And most of the other side effects mentioned in the last post have either gone or lessened so not of bother.

So far for me this drug doesn’t seem to be living up to its reputation 👹👹👹 - "Big Daddy", "The Batterer" etc - and long may that continue 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻

Just one visit to the Galton Unit for a line flush and bloods in preparation for T Cycle 2 - let's hope the idea of starting me on the immune boosting injections immediately and for longer did the trick and I'll be considered ready for another poisoning.  It was a bit busy as they were still playing catch up from the Christmas/New Year closures but all in all we didn't have to wait too long.  

I can't believe on Friday I'll be having my (hopefully) penultimate dose of chemo - the time has flown by.

Playing Around

Ever since all this kicked off I've hardly picked up a camera and have had no enthusiasm or inspiration for editing.

But I feel the need to record, purely for me, the most obvious effect of my treatment - hair loss - but don’t panic, no full frontals 🤭🤩🤭🤪🤭 - I’m only going to deal with my head.  This morning I had a play around and quite like these four images and after all I'm writing this blog for me 😛😛😛😛😛

Cracked ..............  But Not Yet Broken

Facing My Future Head On

I Don't Recognise Myself Anymore

Chemo Brain