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!