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.