The Main Event

Well it’s done but not over.

When I left you last, I said I’d see you on the other side of the brutal bit…. I can’t honestly describe it as brutal – mostly feeling quite okay for most of the time with a couple of shabby  moments; though those that love me said I went a rather ashen shade for while. (a gentle grey – perhaps that may have looked good on a bathroom wall rather than a face.)

Let’s start at the beginning of this bit……………

First day of treatment is called Day minus 5 for reasons that should become apparent as we progress.

Day minus 5

I am introduced to Baxter who is in charge of pumping the many, many, many litres of fluids, poisonous fluids and helpful meds into me for the duration of my stay. 

Baxter and I have had an up and down sort of relationship but he’s a good guy and on standby quietly in the corner for when he’s next required.  (he can be very loud) though only today a lovely nurse who is looking after me showed me he has a “temporary silence alert” button.  She is my new BFF!)

First dose of chemo is administered along with lots of supportive meds, most of whom have proved to be highly trained professionals.

Because one of the supporting meds for chemo is to ensure the chemo doesn’t destroy your bladder lining, litres of the stuff pour into you around the clock.  What this means is that Baxter has to be attached, pumping away into the PICC line day and night.  Now dear readers, the many, many litres coursing into you have to go somewhere…..  That means countless trips to the bathroom, but this requires unplugging Baxter and taking him with you, bringing him back, unravelling the not so endearing way he would wrap the cord around the lines and plugging him back again. (he may well be planning a second career in knitting or crochet).  By the time you’ve done this it’s time to start the process again.  My TripAdvisor review for the Weston Ward is a comfy chair to sleep in, in the bathroom, could raise the star level.

Day minus 4

More chemo, supporting meds and the addition of the potion r-ATG which comes with very poor press.  The “r” stands for rabbit from which it is derived – it’s a T cell antibody and as the theory is the MS bit where things go wrong is in the T-cell, it’s a major player –T leukocytes are obliterated.  The HSCT community refer to it as the “evil bunny”.  So, we’re adding more litres here folks….  And the bunny juice runs in over 8 hours, I think it was 1 am when bunny left the room.

Prior to the start of this you are provided with a no holds barred list of the unpleasant side effects that may happen with the disclaimer - “everyone is different in their reactions.”.  Side effects from the bunny include “rigours, pain, shivering, nausea, vomiting, itchy rashes, flu like symptoms, raised heart rate. (more on that later)

Well perhaps it was my lifelong love of small furry animals but the bunny wasn’t beastly at all. (Not even in a Monty Python Killer kind of a way).

The day only included one little chemo heave (probably TMI), and a quick jab of some anti sick super hero headed off any further nausea.  The bunny pre med (steroids and antihistamines) make you feel a bit snoozy – apparently this was the point that those who love me didn’t think ash was my best colour – but I sent them off – they have other things to do.  An uneventful night followed  though many trips to the bathroom with Baxter– the bunny had only made me a bit achy – have felt worse with the flu!

Day minus 3

Started with a bit of a bang – literally.  On a trip to the bathroom Baxter tripped over his wheels falling flat on his face…..  the major concern of course for the nurses was had this pulled on my PICC line? (it hadn’t).  I couldn’t assist poor Baxter as I was having a wobbly moment having spiked a fever overnight.  Whether this was the bunny being a little tetchy or an infection with sinister intentions, we don’t know.  You’ll be pleased to know Baxter is none the worse for wear, he was carrying too much weight on the top end – his centre of gravity was a bit unstable.  Now I’m not one to body shame about where someone is carrying their weight – um pot, kettle, black but this was a safety issue. A quick adjustment by a couple of the most fabulous nurses and he is back on form – though a little shorter.

Baxter was ready and willing to help with some superhero antibiotics and some professional grade paracetamol do their magic; and I was back to feeling quite chipper for the rest of the day.

Day minus 2

All the same meds – not a lot to report – feeling the “brutal” word may have been over selling.

A visit though from a Cardiologist .  My heart rate has been a bit high but I do have a rare heart condition – one of the nurses when looking it up found I am apparently one in 20 million!!  Special that’s me!  There wasn’t too much concern, rather just an excited Cardiologist who was running off to show the Senior Cardiology Consultant with a copy of my “very interesting” ECG.  The Doc that diagnosed me 14 years ago was very excited as I was his first ever one.  We knew about this ahead of the treatment but it’s unlikely to cause us any grief – just some excitement in the Cardiology staff room.

Day minus 1

All the same meds with no nasty effects – feeling good all day.

A visit from a lovely lady whose husband was elsewhere in the hospital having had his stem cells harvested – he’ll be doing this in the next few weeks.

The pesky fever returned in the evening – but was overthrown by paracetamol but felt a bit shabby. 

The beautiful part of this day, is that at the end of the chemo support meds, I was released from having to sleep attached to Baxter – his bathroom voyeur days may be numbered.  He can watch me sleep instead.

Day 0 – Stem cell transplant day  (My official stem cell birthday)

Woke up with the shabby, “I bet have another fever”  thought – duly confirmed, paracetamol deployed and an alternate superhero antibiotic ordered; we’re unsure whether it’s bunny or bug but it’s belt and braces here in the iso ward.  The arrival of the stem cells was announced for 11:00am………….

All quite a production, the first to appear was Grant – he appeared to be a cheffy looking water bath.

I pondered whether to ask him for some poached eggs but just prior to this point, the “this patient is now neutropenic” sign appeared on the door – people can come in but alas I am now imprisoned.

I’ve explained what neutropenic means in previous posts. Though if you’re just joining in now, this means I have no ability to fight any bacteria – runny eggs are off the menu for some time so no off menu orders for Grant.

Then a cryo cylinder appeared (I didn’t catch his name – seemed a bit cold and quiet), all we know about him is he has been working since 1977 and he's American.  He should plan a holiday somewhere warm; I recommend Maui.

Stem cells were duly defrosted – my nurse has a third-year placement nurse shadowing (as an L & D professional I love to see good training in action), and when she asked her “what could happen if the temp is too high?”  My response from my corner of the room was (maybe sternly) “do not cook my stem cells” I have too much planned for the rest of the year to start this process again!

Then the kind of non-event but big event happens.  Pre-med with antihistamines and steroids administered. My body will welcome back my stem cells – after all those infants were taken from us 6 weeks ago.  However the freezing process involves preservatives that some people react to.

Baxter then steps up to the mark to administer fluids and the stem cells are hung up and infused into the PICC the old fashioned dripping in way.  I waited for the reaction – none!
A chest x-ray brought to the bed as standard for neutropenic folk, a visit from a lovely friend and a quiet evening feeling just fine and time to write this blog.

This process comes with the disclaimer that it can turn to disaster without notice but for now I think I’ve rocked it –  there could be many chemo related effects to come that are much more serious than the loss of my hardly any left hair, it's a risky procedure ..... so please don’t quote me on the rocking it bit later later…………………..

We now count to days 12-14 when it should be safe to let me out – you’ll hear from me before then.  Thanks for all the social media love.

Lou x