All Change at Piccadilly

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This time yesterday I was doing a yoga class on Zoom and today I am desperately trying to finish a blog post in bed before the kids wake up. Why the keenness? At 9am my laptop gets seconded to ‘home school’ and I don’t see it until later in the day. Normally when I’m doing after school snacks and prepping dinner. I then have to log the kids on to their Zoom calls with their class mates! Which I think are great as the lack of peer social contact is having quite a negative effect on both my kids. Yesterday I took the opportunity to go for a walk (with my son) while my daughter was ensconced on a slightly crazy seven way Zoom call with a handful of the 8 year old girls in her year group. It was a joy to see all their happy little faces, yet I wasn’t sorry to leave the squealing behind. Earlier that day (P.S I’ve learnt yesterday that that is a fronted adverbial!!), I’d joked on a WhatsApp that Zoom was the new babysitter. However, I cringed when my husband informed me that one of our friends (another of the 8 year old’s Mum) had called him because our daughter had managed to turn her camera off or something similar and was having a meltdown on the call. I had asked him to keep an ear out for her, but I was slightly amused at this digital to human hands on work around my daughter had triggered.

Anyway I digress (as usual).

Those who follow me on Insta will know this, but for those that don’t: it is with huge relief that I can confirm that my bloods came back up the Friday before last. My neutrophils went from 0.4 to 18.8 in less than 3 days. The extreme back pain from the GCSF injections was worth it. I got my Day 1 treatment. And again by the skin of my teeth (neutrophils came in at 1.1) I got my Day 8 treatment. It was a bit odd in London that first Friday, but nothing like the Friday just gone.

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My brother on the apocalyptic Millennium Bridge Friday 20th March at lunchtime

That day was more than eerie. Whilst a week or so ago there were less people (the Millennium Bridge had not even a handful of people on it) and less traffic, on this latest Friday the shops and cafes were dark, chairs stacked on tables in the middle of the day, all the shutters down in Hatton Garden, some pubs and shops in the city were already boarded up, presumably to avoid vandalism, looting or squatting.

Today, I was with my brother. We spent a lot of our childhood Sunday’s driving up to London and seeing the sights from the car before parking up and going to a museum or a favourite haunt of my Dad’s The Tower Hotel Carvery (it was the late 70s/early 80s and it made a change from a Berni Inn, plus they had free parking for patrons).

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Throw back logo

One of my many memories of these Sunday jaunts was quiet roads and pavements, and closed shops. Resturants and museums being your only available open establishment. But last Friday it was deserted. We had a green light pretty much from Hammersmith to the Holborn Viaduct. We sauntered round Piccadilly Circus in my brother’s van, taking pictures as we went. A journey that had been taking 3.5hrs we did in 1hr 10mins. We arrived so early we had to wait in my brother’s van before queuing to get into the hospital. This is no hardship as he has a kettle and an enviable array of herbal teas, coffees, soups and hot chocolates. I’m loving hanging out in this van with my little bro (he looks after me like he’s older, but he’s actually my second youngest sibling). I’ve spent a lot of my life sitting next to my Dad or my brother in a van or lorry. I even learnt to drive in a little van!

My brother carried my bags to the hospital building queue, but left me there. It was 8.15am and the queue (2m apart) was already long to get inside the hospital. Once in the lobby security made sure I sanitised my hands and then I completed a Covid-19 questionnaire/checklist with a nurse who then signed the form that allowed me in the hospital. I then made my way to the place to have bloods. There were 2m tape makers to queue for the lifts, but no queue. There was only me and about 5 other people in the entire ground floor of this central London hospital. You could hear a pin drop while waiting for that lift. The lift itself was divided into 4 spaces (not strictly 2m apart, but they were trying). Today, for the first time ever, I was the only person in this lift.

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Social distancing attempts in a lift

Once on the chemo floor, it was busy. We had to wait to go in to the bloods and chemo waiting room. No one allowed in without having their temp. tested.

Last week this had been quite jovial. We had all had our one guest/relative with us and a chemo patient from a couple of generations above me started singing Vera Lynn Songs. We all joined in. We felt united, cancer patients, facing chemo yet again with Coronavirus just another challenge to overcome. It had an ‘in it together’ spirit that I had felt many times on a chemo ward or on a TNBC forum, but this time it had bells on – we were singing Dame Vera Lynn FFS.

A week later the wait outside the waiting room had a somewhat sombre atmosphere. People were on their own. Relatives left outside the hospital. Everyone was jostling to keep 2m apart, yet not lose their place in the queue and all the while dodging the new patients arriving gingerly from the 3 lifts. Lifts that opened straight into this unspoken, eerie, seemingly haphazard, yet strategically placed ‘queue’. It was weird. Once in reception patients chose their seats to keep as far away as possible from the people already seated. It was a bit like picking your spot on a beach that is filling fast. I even had a towel, blanket, packed lunch and a cool bag. It gets cold having your head and hair follicles frozen for 3hrs. On the advice of a friend, I also take a big bag of frozen gel packs that I wear on my feet and hands with special foot sleeves and a pair of my husband’s old socks (on my hands). Alledgedly, this will help prevent nerve damage and the chemo getting right down to your outer extremities (in your capillaries). I have had a lot of peripheral neuropathy and am still dealing with a lot of numbness and nerve damage in my right hand. I can’t feel or use my pinkie or my ring finger properly. This pain is indicative of damage to my ulnar nerve. My physio, pain relief therapist and lympodema nurses were making a big difference to this and other pains. The movement has been improving in my whole right arm, but it’s impossible to receive hands-on physio, deep trigger point or lymphatic massage over the phone or internet. So, whilst struggling to carry my cold blocks and to put them on myself, I do it because it just might make a difference to my comfort levels, use of my limbs and my quality of life.

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This was me looking like a sea lion with my ice blocks in place a few weeks ago. No photos from other people this time.
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This time was a far more sombre affair. 3hrs of this and limited use of my club hands.

The atmosphere in the chemo bay is one of caution, suspicion and the unknown. Almost no chit chat amongst the staff or the patients. Each one dancing between politeness and wondering if they/you are the person that will unknowingly pass Corona on to them. At home I am waiting two days to open post and touch envelopes or grocery packaging, but here I have a chemo nurse right under my chin attempting to access my port.

I can feel her breath.

This doesn’t feel like social distancing, but what bloody choice do I have? Stay at home for 12 weeks plus and let this aggressive cancer take hold again. Cancer cells growing in my pleura causing me to feel like I am drowning in my own lungs. Cancer cells blocking my blood vessels and lymphatics so my arm blows up to over 3 times the size and weight of the other. Cancer cells growing in the nodes under my arm so I can’t lift it and pushing on my nerves causing deep crackling pain. Cancer cells growing in the skin on my chest and mastectomy scars, so it is so tight it restricts movement and eventually the skin breaks and God only knows what breaks out of my chest wall and will not heal over.

No thanks, I’ll take my chance with Corona.

Obviously I don’t fancy getting it or being the one who might bring it home to my family, but given the choice between the certainty of the cancer taking over or the chance of getting Corona (even with complications) I know which I will continue to chose. I’ve spent nearly two years on treatment that has not really worked and now after 13 months of teeth gritted determination I have finally got a drug combo that seems to be working. I’m not giving up on that lightly. Not on your Nelly.

Once I have had my chemo I head out of the hospital in silence, alone, with all my bags and a heavy heart. I have had over 3hrs to think about this hand of cards I have been dealt and have tried to play as doggedly and as positively as I can for nearly two years. I am tired and overwhelmed by sadness. Sometimes, it is just too much to bare emotionally, never mind physically.

I pop out the hospital grounds and see my trusty, solid (no offence) brother in his familiar, safe van and I burst into tears. We abandon social distancing and he gives me a bear hug.

Time to get the van kettle on and sail home through the baron and still streets of London.

Chemo & Immuno on 20th and 27th March 2020 finished on the 31st March 2020

Finally the hoop jumping paid off

I want to write a long post about this and maybe later I will or maybe this will turn into one. After all it took a bloody long time to get here. Twenty-one months of fighting cancer and 13 months fighting the medical system for the one immunotherapy drug in trial that ‘may’ have some hope for metastatic triple negative breast cancer.

Breast cancer is still one of the leading causes of death in women (despite it being and I quote an acquaintance ‘one of the best cancers to get’!!!) and despite many more people surviving breast cancer, there are still too many lives taken. Just this week another young mum in my support forum was taken too soon. Leaving 3 young children (below 5) and a husband in the wake and destruction of TNBC. A disease with no cure or targeted therapy to control it.

Due to this lack of treatment, finding a cure or even a treatment to control spread could be big bucks for big pharma. Only 15% of breast cancers are triple negative, but it’s still a decent segment for big pharma to make money from. As a result of this there are lots of different clinical trials for triple negative patients. On the surface this is good, but the reality is finding them, working out how to get on them and passing the eligibility criteria are complex tasks even for the most tenacious and energetic terminal cancer patients. Almost an oxymoron in itself. It’s a wonder anyone meets the trial equivalent of an algorithm. All this searching and hoop jumping just to be a lab rat for future triple negative patients and possibly buy yourself a few more months in the process.

The first trial I found was perfect and gave me immunotherapy as a given as it was the combo they were trialing. Partnerships were with old chemos or additional triple negative targeted therapies. Everyone got immunotherapy, Atezolizumab. An attempt to find Atezo’s killer combo (or survivor’s combo). Unfortunately this immunotherapy trial wasn’t available to me as my reoccurrence/secondary cancer had been discovered in less than 12 months after my primary diagnosis. In short my proactive nature which had insisted on the scan that found the tumour was 4 months too early to be eligible.

Other trials I found I wasn’t eligible for because my tumour wasn’t big enough yet! Frustrating doesn’t even cover it. Eventually I found a trial that I was eligible for by 1mm of tumour measurement. This trial involved months of travelling to the research hospital only to get disease progression and find out I was on the placebo.

The second clinical trial was another mission to get on. Loyal followers of this blog will remember that. This trial yielded another 4hr round journey to get the standard or care drug I could have got on my doorstep. A journey worth it for the chance of getting Atezolizumab. A money can’t buy drug. Those of you playing attention know that that time I was rewarded with the control. Atezolizumab missed again. I was the last person to get on this trial globally. There was a part 2 to this drug and if I met certain eligibility criteria the second part could be open to me. It was beginning to sound like the bonus schemes most of the consultancies I’ve worked for offered. Unlike those, stage 2 finally paid out. All the hard work, hoop jumping and waiting had delivered.

Today I am proud and frankly astounded to report that I have Atezolizumab running through my veins. Hopefully playing with it’s wingman chemo Eribulin to finally have some impact on this aggressive and relentless cancer. Let’s hope it buys me some more time and doesn’t make my quality of life too grim with the toxicity.

All glamour in my cold cap, but happy to finally be giving immuno a chance to work.

Who thought I’d be celebrating getting my 8th chemo agent and an off label drug. Funny where life takes you.

Bit like this journey, the post didn’t end up being short either. However, did beat Brexit to a different post.

30th January 2020

Seriously?

I started writing this on Tuesday morning. A lot can change in a matter of days. Emotional roller coaster feels like a hackneyed and over-used metaphor, one that doesn’t feel adequate to describe the last 48hrs. 

I want to be true to what I felt and wrote a day or so ago, so the tense might jump around in this piece – for any grammar pedants out there, you’ve had your warning. 

In the run up to being on the trial I am looking for signs of hope or good luck. Originally they were sending my eligibility and radomisation request on my birthday. That seemed like a good omen. The very fact that I got the place offered to me after it had previously been allocated, that seemed pretty serendipitous too.

I’d lost the diamond out of my 40th Birthday ring that signifies 4 decades and 4 family members. It was my birthday, the stone was missing, this didn’t seem like a great sign. However, in the dark of the theatre I found the rock lying on the floor. I had found it again, almost instantly. Surely I’d get through elligibility?

I have jumped through every hoop I have been asked to, I’ve anticipated hoops and removed them before we got to them. I’ve organised my own scans with the help of proactive and kind teams in other hospitals.  I have collected my own pathology reports from hospitals in person, scanned them and sent them to other hospitals. I have checked on the nurses screen that ECGs have actually been whizzed on internal systems.  I have been ‘on it’ in the most full on way possible – even for me.

Yet we are still waiting…
I was told I’d have the go ahead and details of which arm I’m on, on Friday…
Monday at the latest…
Yet it’s Tuesday and no news.  

I am sitting in the clinic waiting to see an oncologist for what is supposed to be Day 0 of a new clinical trial. I’m due to start tomorrow, yet I do not know if I am eligible for this trial (I’ve checked myself, but I don’t get to decide) or which arm I will get.   I feel physically sick with anxiety, hope, excitement and panic. An uneasy compound of conflicting emotions. I am emotionally and physically exhausted. 

I feel like I’m at the finish line, but there is no one here. No cheer.  No accolade. I am wondering if anyone knows I’ve sprinted this race?

So I am literally waiting to hear if I get immunotherapy. I’m in a windowless side area of a hospital lobby. Amidst the juxtaposition of hospital buzz and sedentary cancer patients (and their loved ones), standing and sitting in lines. All of us facing the screen waiting for our name, our fate and our next step.  Slowly people are called in.

My husband and I aren’t talking. Not because we are in a grump with each other, but because there is nothing to say or do until we know. Everything else is suspended in time. As a couple with young children you long for one to one time. This is not the vintage of time or location we need right now.

We are biding our time, until it’s time.

Just over an hour after our apt we are called. Not bad. 

From my research as someone at the second line treatment phase (second attempt at a drug or drug combo to control the growth and spread of a secondary cancer and/or local reoccurrence), this trial is the only way I can get immunotherapy in Europe (and possibly The World) at the moment. That is  without robbing a bank, changing the genetic make up of my tumour or bribing a lab technician in a large pharma company. 

I’ve been at this stage before for my first line treatment. I got the placebo.

This time It’s an open label trial so I will know at the start of the trial.  This is because it’s a much earlier phase trial and I’m guessing because the control is a tablet and the arm open is an intravenous Atezolizumab and a tablet of an AKT inhibitor called Ipaterstrib. Still struggling with the pronunciation of the latter. Atezolizumab is now a word my 10 year old can pronounce. I don’t believe in dumbing things down for kids.  After all, ‘immunotherapy’ isn’t much easier to say.  

As yet another aside, when I first talked about immunotherapy with the kids, at the beginning of the year, they were fascinated to hear how that worked.  My son, who fancies himself as a future zoologist said, “Mummy, but how did they find out that Emu’s could help people with cancer?”. Oh how I laughed.

I like the idea of emunotherapy. Frankly I’d try anything right now. 

BING! I’m called in to meet another new oncologist, who works with the one I saw just under three weeks ago. To my relief, I have been accepted to the trial. Phew! It literally was the last place as it has closed globally for review. We’d secured it. However they still didn’t have the go ahead to randomise me (drug lottery). So I was on, but we still didn’t know which drugs I would get. 

Adrenalin was switching on and off like a strobe light. I wasn’t sure I could take much more. I’d already experienced a kind of primeval emotional outpouring on Sunday night. A kind of release that I hadn’t really experienced since being diagnosed in May ‘18.  I was a bit freaked out by my reaction, but it was probably proportional and I felt a lot calmer the next day!

After  another blood test and another 2hr wait in a hospital chair – I was free to go. To go and wait somewhere else. My husband had taken the day off work, but we still didn’t know if I would get immunotherapy, I was provisionally booked for the next day.  

Right now I could do nothing more but go home and wait for the drug sponsor based in a different time zone to get into work and process our randomisation request. 

The way this trial works is you either get the control, or one of 8 other drug combinations.  Capecitabine (a tablet form chemo) is the control, then the other 8 combos are like a cocktail menu with Atezolizumab as the gin or vodka base and the other drugs they combine with it are mixers or other little spirits to pep up the Atezo.  I guess the drug companies aim is to see if they can give Atezo without chemo for it to be effective. What they are seeing right now is that the Atezo works in some PDL-1 positive patients when combined with a taxane based chemo called Abraxane. FDA have approved it in the USA for first line. I wouldn’t be eligible though. NiCE have yet to approve beyond expanded early access programme, due to cost and narrowness of the indications (conditions/disease areas it can be applied to).

OK, this post is starting to feel as drawn out as the real thing was and I’m not sure I can go over it again, so I’ll cut to the chase.  The oncologist called me twice that same Tuesday evening to advise of changes to the trial structure, ratios etc.  We didn’t want to wait any longer for treatment to begin again, so even at a 50/50 chance of Atezolizumab we pushed the button on the lotto machine (it is literally a computer programme).  

I got the chemo.  

8th October 2019 (finished on 10th October when I could bear to write about it again).

Here we go again (Poem 15)

Here we go again

I have paused.
I feel calm for a moment.
The train is taking me,
I am not driving it.
Momentum is someone else’s

En route to do one final test,
Timely hoop jumping will surely bring eligibility?
The adrenalin and cortisol are slowing for a rest,
They are exhausting friends of mine who fuel my agility.

Looking out across the fields, pondering the probability,
Only days before the open label I will see and know,
Recalling the last manic journey to only get placebo,
Some feel deceived;
I felt relieved,
A reason for disease progression,
A known price for future science to learn the lesson.

Whilst mostly strong, I’m aware of my growing fragility,
The cancer has had time to take hold.
I’m tired, aching and a little uncomfortable; affecting my ability,
The cumulative chemo effects, I’m told.

Once again I feel like I’m in a race,
Obstacles to go around, this time for the last space,
When I reach the finish line, it will once again begin,
New hospital, new journey, new side effects within.

I want to be hopeful, but can’t escape the reality of Triple Negative morbidity
Is giving over my body and life for a bigger cause the ultimate act of humility?

2nd October 2019

Honour and Accept (Poem 13)

Aching from deep within. My outer shell maimed,
Cancer popping up here and there, treatment effects becoming evident inside,
Emotional and physiological damage emerging as short term side effects subside,
Honouring my body’s journey rather than the future cancer has claimed.


Internal chemical warfare, breast amputation and nuclear burning,
Uncovering bad news and medical options is a skill I’m learning,
Despite the collateral damage, my body’s response is worth respecting,
But in order to move forward my mind needs to be accepting.

17th August 2019

Glorious Times

365 days ago today I’d been in hospital for a three night emergency stint with febrile neutropenia (low neutrophils, which are the white blood cells that fight infection and high temp), but managed to persuade my oncologist to let me go to Ladies’ Day at Glorious Goodwood.

I’m not quite sure how I persuaded him, my family were a bit sceptical, the nurses were dead set against it, but he saw the person not the disease and its risks. He understood that the mental attitude and determination of a patient was a key part in getting through the cancer treatment. He didn’t want to thwart that. I loved him for that. So off I went with a large copy of my file, a thermometer, blood pressure machine, my wig and my hat. And an equally ‘up for it’ sister.

It was so liberating. I’d done three cycles of FEC chemo and I had another three cycles of Docetaxel (Taxotere) to go. It gave me the energy and verve to get through the remaining nine weeks. Boy did I need it.

This year I planned a repeat – of the racing not the emergency or the chemo.  

As you know I was in the purple chemo chair late last night, but I managed to put my determined hat on, one foot in front of the other and catch the train to the coast for the sunset. A far cry from cytotoxic IV drugs. Today I was back on the racecourse again enjoying the beautiful south downs, lunch, bubbles (shh don’t tell the new oncologist) and afternoon tea. All in the company of one of my wonderful siblings. 

We didn’t have much luck with the racing – in fact I think it is the first time I haven’t had any winners or places – but my previous scans are showing that I’m coming up neck and neck with my disease, so I’ll take that racing form instead. 

Some people think I’m crazy cramming stuff around treatment, others a ‘legend’. I’m not sure either are right. I simply believe that in order to get through very difficult, uncertain physically and emotionally draining times you need to have something to look forward to. Little things and bigger things.

I seek experiences and events that shift your head from dreading another round of chemo to working out how to carry a case and a hat box to hospital and then the coast on a commuter train! It could be seen as displacement activity, but I’d far rather be chatting to fellow patients about horse racing and the beach than the damaging effects of chemo or prognosis.  I like to choose my own narrative and walk my own path.

As I have said before, the last 14 months have seen me face into some of the scariest fears and actual experiences.  The thought of leaving my children, possibly before they finish primary school, the thought of my parents having to attend my funeral. Triple Negative is an aggressive breast cancer with no targeted treatments (yet), so making the most of everyday and planning milestones of genuine quality time with the special people in my life is an essential part of surviving the gruelling and seemingly never ending journey of cancer treatment. 

I look back at the last year or so with fond, special, treasured memories. These give colour and brightness to the dark days and the uncertain grey ones. We all need a few glorious, splendid days and today was one of them. Full of striking beauty and colour.

Whatever you are facing in life, pockets of good simple times should be scheduled into the short and long term plan.  

‘Last’ chemo

So today is my ‘last’ chemo and I haven’t even written about chemo properly. I think that might have to wait. It’s just a bit too grim for today.

Suffice to say that not all chemo is the same and everyone’s reaction is very different. That’s why you have an oncologist who specialises in this dark art of managing the tight rope between efficacy and toxicity (think this is a polite way of saying killing the cancer or killer your organs/you). We haven’t killed all the cancer yet, but on the plus side we haven’t killed me either, so all good. Told you it was all about perspective. 

I put inverted commas around ‘last’ because when you have metastatic cancer (cancer that has spread from its original site) your know that your last chemo is unlikely to be your last. In fact it’s often the only treatment option to keep your disease controlled, so chemo kind of becomes your friend. Developing chemo resistance or running out of chemo options is actually a bad thing as it means your disease is out manoeuvring the possible treatment. You then move into palliative options that make your life more comfortable while the disease does its thing. Let’s not go there yet.

Back to today. Today is my last chemo for a while. That feels good. I have 18 weeks of four types of chemo last summer into early Autumn (which depressingly didn’t really work).  This Spring/Summer I had another 18 weeks. Still six cycles of the cytotoxic stuff, but this time I had two types (Gemcitabine and Carboplatin or GemCarbo to its friends) two weeks out of every three. I’m on a clinical trial so I might be getting immunotherapy too. Alternatively I might be getting water (placebo), which is frustrating, but a reality.  Even though GemCarbo is an older chemo combo I knew it was getting results with triple negative breast cancer based on my obsessive google reading. It was therefore worth the travel to a research hospital and the gamble of getting Atezolizmubab, which is also getting great results (more on that later). After today I will still have cycles of immunotherapy every three weeks. 

I feel very mixed about today because so far we think this chemo is working. It’s shrinking or should I say shrunk my secondary tumour. I worry that stopping it will mean it pops up somewhere else or starts growing again. Or it reoccurs in my chest wall, skin or sternum from the original site.

I think of metastatic cancer as mould spores. You know how they lurk unseen on bread, barely visible as tiny white specks, then BOOM, you’ve got patches of mould all over the side of the loaf. Leave it lurking at the bottom of the bread bin and before you know it, it has turned into an unrecognisable bag of dust. 

I don’t want that to happen to me. I think we’ll leave the brown bread and toast analogies right there. 

So we are on the hunt for those mould spores. Actually you know what, that’s rubbish you can’t even see them on the most sophisticated scan (A PET), so we can’t really hunt for them.  I prefer to accept that they are definitely there, we just need to be ready and waiting like ninjas for when they pop up. This is a more proactive and realistic way to view the approach to metastatic cancer. 

Between the blood tests and chemo, I’m having a CT Scan today too. I have them every 8 weeks to check for disease progression, or large patches of mould!  I have so many scans I even have a scan outfit (winter and summer).  It’s an outfit I have perfected that manages to be metal free and not look like pjs, whilst still allowing access to my port-a-cath. It allows you to complete you scan without the need to get dressed and undressed.  A time saving decision, plus it also saves the faff of trying to fit and re-fit my prosthesis or being exposed with one boob in a corridor.   

I won’t get the scan results for two weeks, but last time the treatment was working. Maybe I’m getting the immunotherapy or maybe the GemCarbo has worked.  

This constant cycle of treatment and scans can get a bit wearing.  I tend to approach it by making treatment options based on the worst case scenario and life decisions on the best case scenario.  I find this helps you make the best of each day whilst hoping that you are creating more days.

I was here this morning for bloods at 9am, but I won’t get chemo until much later as they have to do a lot of tests to make sure my body can handle the dose, then they have to order the drugs from pharmacy.  It is now gone 3pm and still no sign of a seat in a purple chair.  This means steroids after 4pm and no chance of sleep tonight.  Another thing to accept and roll with.

They are calling me in. Let’s do this one more time.