Rosie, Still Standing

A further update from friend Rosie who records the final part of her treatment for breast cancer with her usual keen observational eye, wit and self deprecating humour.

"Shattered and Battered...but still standing

I wanted to start this, the final update, with some amusingly clever quotation ("Friends, Romans, countrymen... lend me your breasts...") or embed a mechanism into the text that includes the soundtrack "I'm Still Standing" by Elton John playing relentlessly in the background to celebrate the completion of what has to be the world's most challenging medical triathlon. Unfortunately I couldn't come up with the necessary witty rejoinder and neither can I code.... but finally... (drum roll) after 10 months, I am DONE.  'Death by Microwave' finished just over 2 weeks ago.

Big cancer machine thingy

Radiotherapy - whilst being the easiest leg to endure - is probably the most relentlessly boring as it required my presence every day, Monday to Friday, for 4-and-a-half weeks.  It is also the most 'scientifically scary' in terms of equipment and noise, so basically like being on the set of "Alien" (in radiology no-one can hear you scream...) The Linear Accelerator is the most impressive piece of kit I have ever seen : it is huge - consisting of a massive, rotating laser gantry, sizeable retractable panels and a very uncomfortable narrow base unit to lie on complete with complicated arm rest to lock your arms over your head. To compliment the whole 'Sci-Fi' theme, the entire suite is bathed in an ethereal blue glow. 

Positioning is key and before I even got close to being zapped, I spent a happy morning being digitally scanned, drawn all over with felt tip again... and the most painful of all.... being tattooed. Yes - I have "tats" (as opposed to "tits") - a tiny blue freckle under each arm pit and bang slap in the middle of my sternum. All this to ensure I was lying in exactly the same position each time (accurate to within a millimetre apparently).  By comparison, the actual treatment takes but a moment... 45 seconds max.... Once 'aligned', a loud siren sounds and everybody sprints out of the room because, guess what, these rays cause cancer.....  Usually, at this point, feeling very small and vulnerable and staring down the barrel of what is essentially a huge cartoon laser gun firing photons and electrons, my imagination runs completely riot and I envisage ALF bursting forth from my boob à la Alien and sprinting out of the room after them......

Compared to chemo, side effects are minimal : fatigue and what can only be described as sun burn.  Perhaps this is why 'pink' features so prominently as a marketing theme for breast cancer? Pink ribbons, pink cuddly toys, pink T-shirts, pink literature, you name it.  Please don't get me wrong, I am eternally and supremely grateful for each and every organisation working tirelessly to eradicate this vile disease, but quite how breast cancer has come to have such cutesy, almost sexual connotations is completely beyond me?  It is actually a long, brutal, down-and-dirty mud wrestle of nightmarish proportions.  You don't see prostate cancer messing about with a tiny pair of pale blue fluffy pom-poms.... their advertising features a bloody great sledgehammer... Just sayin'.....

So what now? After exhaustive meetings with Supreme Being (aka surgeon) and Oncologist and acknowledging that there are scant options available medically for post Triple Negative Breast Cancer, I have agreed to go on a course of Bisphosphonates - 1 dose every 6 months for the next 3 years administered via IV. Recent extensive trials have been seriously encouraging in helping prevent relapse - specifically in 'dem bones - and has the added benefit of protection against osteoporosis.  I have also considered oral chemotherapy, but I have to confess, the idea of moving the goal posts quite so comprehensively is not appealing. Although not as ghastly as IV chemo, it would mean another 8 cycles / 6 months of feeling shit just when I am feeling bloody brilliant for the first time in living memory. The treatment is very new for this specific application, the trials thus far very small and no guarantees despite the numbers looking encouraging.  Mark and I have been in an agony of indecision, but I think on balance, probably leave it. My lovely Oncologist is of a similar opinion and even went as far as saying he is "cautiously optimistic" about my future. Fingers crossed he's right.....

And so my friends, all that remains for me to say is a massive 'thank you'. I really couldn't have done this without all your support, love and encouragement.  Writing ALF has been most cathartic..... by allowing me to recount the horror and terror and take the piss out of it, somehow makes it so much smaller and manageable .... and there is a lot to manage.  I have been blown away by your emails, letters, flowers, telephone calls, texts and visits.... as I think I mentioned in the very first ALF, when things get really bad, to be able wrap myself in this 'duvet' of support by reading all your responses is brilliant - thank you so much. 

I leave you with the good - my hair is growing at a rate of knots....
The bad - it is so curly it resembles a sheep's fleece....
But I am relieved to inform you I am looking less ugly...! 

With much love xxx"

Rosie; Will The Fun Never End?

It's been a bit of a driecht and dreary winter with Spring struggling to make itself felt with temperatures cooling off again today. So lets cheer ourselves up as we head into the weekend with some Happy Friday news and it comes from friend Rosie with her latest update in her fight against the unforgiving bastard that is Breast Cancer. If perhaps you feel you've had a bit of an ordinary week or month then look to Rosie for inspiration for she has endured an absolute sod of a time these past eight months. The quiet courage with which she has taken on the enemy with her fantastic wit and self deprecating humour has certainly lifted my spirit. In fact, I've found it quite humbling. While there are no absolutes in these matters, it does appear that a more favourable wind is blowing and the outlook is now one of shall we say, cautious optimism. Breast Cancer awareness groups do emphasis the importance of touching and feeling breasts to aid early detection. I'm going to step forward here and state quite clearly that I am enthusiastically committed to this strategy and would encourage other husbands to adopt the self same approach. It is very important to empathise without shame or fear of embarrassment. In this regard, I shall lead from the front. You may incidentally, read Rosie's other posts here, here here here here and here.

Over to Rosie,

Previously on ALF..... 

Diagnosed with Grade 3, Stage 2 Triple Negative breast cancer... Adhering to the recommended 'poison-slash-burn' policy, our heroine has completed 8 cycles of chemotherapy... and - as of 3 weeks ago - breast surgery.  She returns to this blog after an unprecedented 2 month absence.....

Last missive I was anxiously awaiting a date with the MRI and hoping for no signs of life from ALF....sadly not quite to be.... and following what the medical profession euphemistically referred to as my "modest" response to chemo, it was decided to upgrade my surgery to therapeutic lateral mammoplasty and axillary node clearance instead of a lumpectomy and sentinel node biopsy.  Both are as terrifying as each other but essentially, as with most things in life, you get more bang for your buck with an upgrade.... 

I was also rather disappointed to discover that my bionic accessory, the Portacath, had to be removed before surgery. Here was I thinking "marvellous - no cannula for me, they can deliver general anaesthetic like a lightening bolt straight to the chest", but apparently not.  So it was back to see the lovely Dr. Lopez again - all snake-hips, skinny black jeans and pointy shoes for some more Rohypnol and another afternoon away with the fairies. 

Thus prepped and primed, I arrived at the hospital for surgery, but just when you think things can't get any worse... I was presented with the non-fastenable hospital gown, some quite extraordinary paper knickers and a fetching pair of white embolism socks.... not forgetting, of course, that those of us who have been through chemo will already be sporting some kind of natty headgear - in my case, a pale blue beanie.  As fashions go, it's definitely an acquired taste.....  Mark failed miserably to contain his mirth and so in revenge, I dispatched him to M&S to buy some front-fastening sports bras for my post-operative needs. 

Meanwhile my surgeon (aka Supreme Being) arrives armed with felt tips, a measuring tape and a camera and proceeds to draw carefully measured lines all over my right boob with black and red markers, elegantly depicting ALF as a large, black blob.  He then stands me against the wall and takes endless pictures whilst I feebly attempt to protect my dignity with the hospital gown tied precariously around my waist.  It's at this point that Mark returns from his impromptu shopping trip brandishing foundation garments and wanting to know if they fit.  Struggling hopelessly to do the wretched thing up myself (and avoid covering pristine underwear in felt tip pen), both husband and surgeon take over and before I can say 'B cup', my gown has slipped and dressed only in knee-high socks, paper knickers and a beanie, I am stuck helplessly whilst the pair of them wrestle to do up said sports bra with "innovative front zipper".  Discretion being the better part of valour, my surgeon gives up first, claiming he wasn't taught this sort of thing at medical school so Mark wins by default, 3 falls to a submission.  Dignity quietly leaves the room.....

The operation has been hugely successful... or in the words of Supreme Being : "everything went as anticipated".  Obviously I have dropped quite a few cup sizes, but essentially a work of art and even the furniture put back in the right place...   My armpit a slightly different matter and it feels as though I am hosting a particularly large and prickly holly bush under there. This sadly is part and parcel of lymph node clearance as inevitably a lot of nerve endings get badly damaged..... I also acquired a brand new fashion accessory: the medical drain.  A complete nightmare and I wanted to rip it out at every available opportunity (indeed, I nearly did....by accident on odd door handles and the like), but managed to stay the course... 

 

it's everyone's fight

Waiting for the pathology results was horrific...before the statutory week wait was up, I had descended into "angry, bald dwarf" mode (again) and writing my own eulogy at 4 o'clock in the morning (again).... however, I am delighted to announce that for the first time in a long time, I have some seriously good news.  The final pathology showed ALF to be a riddle wrapped in a mystery inside an enigma... as in a residual 13mm invasive b*****d, surrounded by potentially invasive crap over a total dimension of 21mm..... inside a mix of fibrosis and calcified degenerative tumour cells......wait for it....CONSISTENT WITH RESPONSE TO CHEMOTHERAPY.  1 out of 17 lymph nodes contained metastatic breast cancer and that 1 node was the marker node we already knew about.  Margins were clear.....  The histology is excellent.  Cue tears, relief, general drama....

Two weeks on, I appreciate I am not totally out of the woods, but it has become a heck of a lot sunnier in here.  The odd cloud.... I have developed something called 'cording' under my arm which is an irritating form of scar tissue which impedes arm movement.... I fear I might not be able to play my wild card at the Wimbledon Lawn Tennis Championships this year... and I still have a holly bush under my arm. Relentless exercises and physio the way forward so I can get my arm above my head in time for radiotherapy which starts after Easter...  will the fun never end...?  I am stonkingly tired all the time, but I guess that is to be expected.

Next update from the radiology department... until then, I leave you with a shameless plug for my niece, Melissa, who is running the Paris Marathon on 3rd April in aid of Breast Cancer Now. Any contribution graciously accepted...

 

 

 

Go Rosie!

1 in 8 women in the UK will develop breast cancer in their lifetime

We welcome an update from friend Rosie who has come to the end of her chemo treatment for breast cancer; surgery next. Cancer, especially breast cancer, is as random as it is insidious. A nasty bloody thing that strikes without warning, and is completely agnostic it seems to me, as to lifestyle, background, age or fitness. Sooner we get this licked the better. Anyway, well done girl and good luck.

157572992

ALF : Cycle 7 & 8

Forgive the delay : With Cycle 7 occurring in the 'no-man's land' between Christmas and New Year and Cycle 8 being so much more exciting plus a flurry of meetings with the "team"... a major 'Ta-dah' moment worth waiting for : After 5 months and 2 weeks, I have finished 8 cycles of chemotherapy. What seemed an eternity back in August last year as I sat quivering in the padded Chemo Chair of Doom, has finally become a reality. Cannot quite believe it. Whilst half of me is obviously dancing up and down with glee, the other half feels strangely discombobulated… but I can’t quite put my finger on why?

Of course I am ecstatic that I can kiss goodbye to the multitude of drugs that have been flooding my system on a 3-weekly basis : over 10 different flavours at the last count. From the high-powered cancer-busting chemo itself to steroids; anti-sickness to self-administered injections to encourage white cell growth; numerous pain relief and not forgetting every laxative known to man…. I could write a thesis on laxatives… 

Even better, no more chemo equals infinitely less side effects, although to be honest I think I have been reasonably lucky in this department - it was like a bad hangover that lasted for a week or so after each session. Actually, I guess that’s exactly what it is - but replacing lovely wine with poisonous chemicals - or to put it another way, the hangover without the preceding fun. Thanks to the anti-emetics I was never sick, but did feel queasy, headachey, tired, fuzzy and emotional and have I mentioned laxatives...? Luckily escaped the ravages of mouth ulcers, weight gain and permanent insomnia, but did fall foul of losing my sense of taste, spectacular skin rashes on my hands and feet and a nasty brush with Shingles.

I certainly won't miss the steroids given to prevent allergic reactions and nausea that have such an interesting effect : each chemo session was accompanied by a constantly scarlet face and a manic ‘steroid-high’ followed by a dramatic crash into the depths of despair and weeping for 24 hours non-stop - only to awaken the next day feeling OK again. “Stroppy Saturday” has long been a regular fixture in the household after "Chemo Wednesday" and close family quickly learned to run for cover accordingly. 

The scariest side effect of all has to be the hair loss... everywhere. On a good day I can cope with being bald and looking like Bruce Willis "in da house". On a bad day I just feel plain revolting and deeply unwomanly, freaking out when I look in the mirror and see Gollum staring back at me (Good morning, my Precious…..) The no nasal hair is a bit of bummer as well. Come back, all is forgiven! Everyday it looks like I have a bigger coke problem than Daniella Westbrook - sniff, sniff! To me, nasal hair is now as precious as Saffron…

Unfortunately, not all the side effects with chemo stop with the final treatment. Naively, before starting chemo I thought it was all about vomiting and hair loss, but alas this is not the case. As previously mentioned, I am really struggling with chemo brain. I used to be a reasonably intelligent, efficient, multitasking individual with an awesome memory (though I do say so myself). I am now so forgetful it’s not funny. I have zero concentration and multitasking is a thing of the past. It is confusing, inconvenient and bloody frustrating, but at least a well-known fact and not to be confused with early onset dementia or brain secondaries. All I can do is wait for my little grey cells to start behaving again. I am also struggling with eyesight, severe fatigue and fitness levels… so I guess this goes some way to explaining the “I’ve Finished Chemo, But I Still Feel Rubbish Scenario…”

As for the rest of the way..? Having been plotting my escape from the Oncology Unit ever since my arrival over 5 months ago, I was completely taken aback by the deep rush of emotion when I was officially allowed to leave. Instead of the imagined triumphal sprint down the corridor shouting "byeee ... and thanks for all the drugs", Mark had to practically prise my finger tips from the door frame trying to exit to the car park... I am probably suffering from Stockholm Syndrome, but there is no doubt the protective bubble of the Oncology Unit whilst enduring chemo focuses the mind to the exclusion of everything else. The nurses are amazing (I had to hug them all - twice), you are looked after so beautifully and supported by a group of women going through exactly the same horrific nightmare. It's only when you leave that you realise you're on your own again and actually have to face up to the question of "has it worked?" Annoyingly ALF is still very much a "presence" and although the powers-that-be have warned me not to get too fixated on this, I am hoping it is a ghostly one and as dead as the proverbial door nail. I won't know the definitive answer until after surgery, but I hope to have a clue on Monday after spending most of the day in the MRI... Watch this space. 

As ever, I leave you with the good : chemo is officially over.... Onwards and upwards.

The better : my head hair continues to grow... very slowly, 50 shades of grey and I won't be plaiting it any time soon... but still making a comeback!

The best : logistically, things are moving forward at warp factor 9.... Surgery booked for Monday 22nd February. ALF will finally be excised..... Next update from the OR and beyond.


xxx

Rosie Update; "Tired. Teary. And feeling a little sorry for myself."

Another update from  Rosie who has been in the trenches with Cycle 5 of her breast cancer treatment. Tough couple of weeks; tough girl.

 

"Tired.  Teary.  And feeling a little sorry for myself.  

Cycle 4 certainly had a sting in the tail... All on the same day had to say 'goodbye' to my Uncle who died recently.  Goodbye to Daughter No. 1...... gone to a wonderful party in Val d'Isere for 6 months....  and... Goodbye to Husband.... to SE Asia for the week (to work I was assured... no parties).  Then the plan was to spend time with my Ma and return home refreshed and invigorated and ready to face everything Cycle 5 could throw at me.  

All went tits up when first the tank in the loft at Buzzers let go and water cascaded down the cavity wall and into to the kitchen ceiling space.... closely followed by collapse of kitchen ceiling.   Then the outrageously itchy rash that also ached, which I assumed was all part and parcel of the wonderful world of 'chemo side effects' turned out to be..... Shingles....  So I arrived in the chair for Cycle 5 feeling "A Bit Cross" as opposed to merely "Miffed". 

Compared to Epirubicin,  Docetaxel supposed to be a breeze (anaphylactic shock aside) but I have to confess, woke up on Saturday feeling as though I had been trampled on by a herd of elephants.  Everything hurt...  So full of steroids and medication I physically rattled... And a vile mood to boot.  Poor Mark spent the entire weekend being shouted at by a bald, angry dwarf.  

Which reminds me - I am obsessing with hair again.  This is because like rats leaving a sinking ship, my eyebrows and eyelashes have deserted me (traitorous b*****ds).       A little light research on the subject reveals the punishment of shaving a woman's head has biblical origins (why am I not surprised?)  In Europe the practice dates back to the Dark Ages with the Visigoths. During the Middle Ages, this "mark of shame" - denuding a woman of what was supposed to be her most seductive feature - was a common punishment for adultery.  Goes a long way to explaining why the practice enjoyed a remarkable comeback during the 20th century for women accused of "collaboration horizontale"...... No wonder I feel a prat... I'm up against oceans of history.

Had huge fun back in the recording studio - was heaven to be doing something "normal" as opposed to "abnormal" and you will be relieved to hear that the Guinea Wig remained firmly in place.  My secret is safe.   In other good news...  The necessity of blood transfusion receding... all blood levels on the up...

The bad... Mark reluctant to purchase Lynches-Bages to maintain this upward trend...

The Ugly... I look like a boiled egg...

xxx

Rosie: 'ALF is Smaller, Softer & Suffering'

Another update from friend Rosie who is now halfway through her chemo treatment for Breast Cancer, (you can find the others here and here). Before we get to that I thought I would share a conversation between another friend, who has been through and beaten Breast Cancer, and her son when she told him of the initial diagnosis.  She had the difficult talk with her boy who would have been 10 or 11 at the time. He paused for reflection and his mother nervously waited for the response. This is how it went,

Son:    'So Mum, you have to see a doctor?'

Mum:   'Yes, I've been to see him a few times. He's very nice and kind.'

Son:     'and Mum, he touches your breasts?'

Mum:   'Yes, he touches my breasts.'

Son:     'and you don't mind?'

Mum:   'no, I don't mind. He's a doctor and he has to do that to make them better.'

Son:     'and Dad doesn't mind?'

Mum:    'no, Daddy doesn't mind because the doctor is doing his job and is going to make me better.'

Son:     'That's OK then. I think I want to be that kind of doctor when I grow up.'

Over to Rosie, let's see what she's been up to.......

Reasons to be cheerful part 3...... 

Apologies for update delay, but much excitement celebrating precisely half way through the horror and terror that is chemotherapy and the final instalment of hideous pink Epirubicin and Cyclophosphamide.  For the next 4 Cycles, Docetaxel is the way forward. Naturally, Docetaxel comes complete with new and exciting side effects, but I am told on the whole, it is easier to assimilate than Epirubicin and doesn't leave one feeling quite so revolting..... Instead fatigue is the main issue I gather...but as I permanently feel as though I am the dormouse at The Mad Hatter's Tea Party these days, no change there then...

Secondly, also had an appointment with my Oncologist just before being chemically coshed by Cycle 4 and felt it was worth waiting for that meeting and recovering from the immediate side effects to bring maximum news : (Drum roll and Ta-Dahl! moment...)  At the half way point Ladies and Gentlemen ... it's definitely working and Alf is a little smaller, softer and suffering.  Longing to swap the word "little" for a "lot" and if I could get my foot up there to stamp on it myself to speed things up, I would.... but I'm told all is well and progressing as expected and I must be patient. The patient patient.....

The only teensy piece of bad news is that my haemoglobin levels are in free-fall and if they get much lower, a blood transfusion might be required. Whilst this sounds alarming, I have been told that the results are spectacular and rather like a vampire after a particularly good night out, I shall feel fantastic with hitherto unknown energy levels, so I am now thinking quite possibly the only way to deal with Christmas efficiently anyway. Until that time, I am chomping my way through as much kale, spinach, steak and red wine I can muster.... although sadly I don't think Lynches-Bages is available on the NHS yet.  

Meanwhile I am mourning the loss of what was left of my brain. During my meticulous research on Google at the start of this fiasco (because Google is always a measured and utterly believable resource in health situations) I was reconciled to chemo being responsible for losing my hair, my breakfast, my sense of taste and my boob, but I wasn't prepared for losing my mind. I think I might have mentioned this before, but because I can't really remember, I can't be sure... so I have to keep repeating myself incessantly just in case.... This is excruciatingly boring for all concerned and confirms my belief that I am actually turning into my mother.  If I don’t write absolutely everything down (tattooed on a daughter’s forehead or something) I forget it completely within seconds, however earth-shatteringly important… and what was a mildly annoying habit of leaving sentences hanging mid-flow BC (Before Chemo) has developed into a serious conversational issue AC (After Chemo) : half way through a sentence I will just stop speaking as I have totally forgotten the point I was attempting to make.  Can't even claim to "lose my train of thought" as I can't remember which station the train left from in the first place. I am like a goldfish with a particularly short attention span....except this is probably unfair to goldfish (though to be fair we both respond to shiny things and the promise of food).

So until next time, I leave you with the Good......  I endeavour to return to work in a real studio (despite handicap above)

The Bad.... Pray I can remember how to read...

The Ugly.... What happens if I remove my headphones and inadvertently remove my wig at the same time?

xxxx

Rosie Digs Deep

Time for another update from dear and brave friend Rosie who is currently knee deep in the trenches in her fight against breast cancer. Cue Rosie and action...................!

'Chemo is vile. I appreciate the fact it's supposed to suck the life out of cancer... but I wish it didn't have to suck the life out of me.  It’s like being drowned 1 week in every 3… or the medical equivalent of being wrapped in loft insulation material whilst simultaneously being hit over the head with a steel-plated breeze block.  This is the sad, mad week when I sleep a lot… cry a lot… and swear a lot.  The total antithesis of brave.  It has even spawned a new type of irritating telephone call; forget “Drink and Dial”, try the “Phone and Moan”…

A lot of moaning this cycle… I am now officially bald.  24 hours before our Silver Wedding Anniversary, my hair exited stage left (and right and centre).  Deeply distressing as plans for our Silver celebrations had already been seriously compromised and downgraded, so the prospect of having to commemorate 25 years of wedded bliss without any hair was the final insult.  I didn’t feel very pretty…. or as L’Oreal would have me believe: “Worth it”. 

Praise be for the ‘Guinea Wig’ as it is now affectionately known; together we sashayed into Godalming’s finest Italian and I think we just about got away with it… 

I have a few wispy strands left… my Mother (who does a fine sideline in hairdressing) came to my rescue and cut what is left very short. Amazingly, despite being shorn, what remains is still trying to curl - defiant to the last.  I look like a dandelion puff…  On the bright side - I can no longer have a “bad hair day” as the Guinea Wig is always perfect and I have definitely shaved my legs for the last time this side of Christmas.  Say what you like about side effects, there is no denying that chemotherapy offers the ultimate in chemical depilatory systems.  So much more efficient than Immac….

And what of the eponymous villain of the piece? Essentially "under surveillance" ...  I have had baseline MRI's, ultrasound and tiny titanium markers inserted to monitor every movement.  In my wild and vivid imagination, Alf is a rather hideous cartoon criminal lying on a deckchair sipping a cocktail thinking all is safe and sound on Costa del Breast.  Right now we have just got to the part where Alf realises the cocktail is spiked, has dropped the glass and is rolling around underneath said deckchair clutching its throat.... Keep choking Alf, keep choking...

Cycle 3 looms tomorrow ... but in the meantime with breast cancer all over the media this cycle, I leave you with : -

The Good : -  More people today are beating cancer than ever before.....

The Bad : - but RIP Jackie Collins - glamorous to the last....and

The Ugly : - ....However fabulous the performances, I don't think "Missing You Already" is a film the we need to see any time soon....'

As a complete aside, (this is me now not Rosie), on the memorable 2011 'Ken & Barbie' Haslemere Rugby Club under 16's tour to Gloucestershire we stopped off at a service station on the M4. When we were walking back to the coach an old dear stepped forward and said, 'It's so nice all your boys are wearing pink and supporting breast cancer.' Absolutely Madam, absolutely.