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.