The New Day One

Where to start? Chemo is over. 

What a thing to be able to say.

My first chemo session was on Wednesday 13th October. That both feels like the mere blink of an eye and a complete lifetime ago.

Today is day 155. Five months and five days.

My rough estimation is 800x tablets so far. 

I've had a 42cm line in my arm pumping litre after litre of chemicals direct in to my chest turning my pee red within minutes, making me feel like a zombie and destroying my taste and stomach for days.

I've gone from being fairly utterly riddled with bad, most terrifying shit in my neck and chest to being told I'm in complete metabolic remission. Clear. 

It has been one hell of a ride. 

It's something that I don't think I will ever truly be able to communicate properly, but the masses (ha!) are expecting a grand, last chemo blog so I'm going to give it a good go!

Before we get to the final week, I had some fun with the final District Nurse visit last week. Now, I've had 11 visits from the Nurse on alternate weeks to my treatment day to clean and flush my PICC line. Whilst never fun (you'd be AMAZED how quickly you can taste the saline flush - it's literally the instant it hits your bloodstream), it usually passes without drama since I got a grip on the whole not looking = not fainting thing. Well this time, the words 'the line is blocked' and 'blood clots' were thrown about with gay abandon. Cue ALARM BELLS. Obviously, my mind snapped immediately to the worst case scenario and I felt phantom pains in my chest (blood clot, obvs) throughout the night and a close second in the ultimate fear stakes - the prospect of having a new line put in. 

Thankfully, the nurses in the Combined Day Unit did a Minor at Hogwarts in their medical training and are all actual wizards, and sorted it with relative ease the next morning. Just a kink in the line pal, I'll sort that out for you no problem. 

Praise thee. Five points to Gryffindor. 

I remember being pretty vehemently against having the PICC line put in - and don't get me wrong, it has been annoying and responsible for the biggest bruise I've ever had when they cocked up the first attempt - but seeing people struggle to have a cannula fit in to their veins (if you've got small veins, all the best), nevermind the damage it does to said veins AND the time it takes (my treatment would have taken six hours rather than two)... it was the right choice. 

ANYWAY, the final week.

I spent most of Monday in to Tuesday fretting that my bloods would inexplicably choose now to throw a spanner in the works, or my FOURTH covid jab on Sunday would render me incapable of taking on the chemo-lols, but despite my white blood cells taking a bit of a dive, I was all good and approved for treatment.

Small side note - I was quite looking forward to seeing Dr Lala or even Dr Addada, but unfortunately had a consultant I hadn't seen before who, if I'm being honest felt a bit more keen to get me out the door in time for lunch than having much of a conversation. Indeed, I had to query the next steps more than I maybe should have but there we go. So what is next?

• PET scan in four weeks - 12th April
• Follow up appointment - two weeks later

If this goes well then that should be me signed off for a year until the next check up scan. I'm not going to lie, the prospect of this scan/follow up combo is shit scary. Finishing this week has probably been the biggest few days of my life and has allowed me, Evie, my family and friends to ride the crest of a wave but until the next hurdle is jumped - it isn't over. 

There is no logical reason for it to come back - it was obliterated after four rounds and I've had a further eight since to make sure it doesn't come back, but I defy anyone not to have a lingering sense of paranoid doubt sitting on their shoulder, the ultimate devil following me.

As you know, one way I've found to help me get through this is to countdown the rounds, the days, everything. When I woke up on Thursday after treatment on Wednesday, it was the start of a new count. Day One. The first day of the rest of my life. 

I refuse to give the paranoia devil the time of day to delay such a milestone but I will respect it from a far. But life can slowly begin again. I still need to take tablets for the foreseeable - though I need to check in with the Lymphomaniacs how long this actually needs to be after a token answer from the sandwich-hungry consultant. When I asked how long it would take my immune system to recover she said up to six months. Again, I'm no doctor but I am taking this with a pinch of salt. It felt like an average stock response no matter the age, cancer or treatment. 

It will be interesting to see my bloods before the follow up appointment in six weeks - that will be the true marker. All I can do is continue to be safe, sensible and listen to my body. It's got me this far.

I appreciate I am jumping all over the place here but it's been one of those weeks! The chemo session itself went fine - despite being an hour late for the first time in the programme. I had one of my favourite nurses administer the chemo which was a nice way to end and my boxes of Heroes and Celebrations were very greatly received by CDU heroes. 

Arguably the biggest moment during the session was the removal of the PICC line. I had to convince the ward sister that I had been told it was ok by the consultant (the sandwich clearly got in the way of putting it in my notes) and had to take responsibility that it was my decision to come out. You're damn right it's coming out.

Now you would think pulling a 42 cm tube out of your vein would be a pretty miserable experience but here's thing - you don't have any nerve endings IN your veins... so I didn't feel a thing. What I did feel was pulling the wee metal bugger out. Those angled things sit under the skin to anchor it all in which I suppose is a pretty integral element of the set up. They were pushed together so it wasn't quite as wide for extraction. One, two, three! YOWWWWCH. The only thing I can describe it like is having the MOTHER of all hairs being plucked out. Over in a second but oh wow, stinger. 

But who cares, the PICC line is OUT! And incredibly considering it has been lodged in a vein for months, not a trace of blood on removal. 

I've no idea either.

I've had a plaster on it for the last few days but took it off this morning to let it breathe. And whilst it has a fun plaster pattern on it, and the underside of my arm is in pretty desperate need of some water and moisturiser... it is looking pretty bloody good if I do say so myself all things considered.

Continuing the theme of today, it is now time to flip back to Wednesday and the moment I had been thinking about since the moment I was diagnosed in September. 

Ringing the bell. 

I'm sure it is very deliberate but the bell is placed on the way through to the treatment bays. To my knowledge you can't get to the bays or leave the CDU without passing the bell. It's one hell of a motivator. Even when it feels like the furthest thing away in the universe - literal Mars had nothing on the distance the bell felt away until pretty recently. 

As you can imagine, I've had a lot of time to think about ringing it - it is a monumentally sentimental moment and a reminder of what you've achieved. Beating cancer. But as much as you might want to ring it off the wall and let off a confetti cannon with a marching band serenading your every move... I was also only too aware of the dozens of people having treatment throughout the many treatment bays. On Wednesday alone I saw three or four people having their first treatment, allowed their only companion for their entire treatment programme with it being their first. Whilst I had earned my ringing the bell moment (and it was an indescribably big moment for me), I didn't want to invade anyone's treatment space.

That said, the amazing nurses all stopped what they were doing and came out to applaud me. What an incredible group of people. Another group of amazing people, Evie and my family (Rosie in spirit on the morning itself from Cambridge!) were also able to join and share the moment. I couldn't have done all this without them.

What I will say, not an easy bell to ring! Felt like I was getting Punk'd for a minute. THERE ISN'T EVEN A BELL YOU IDIOT HAHAHAA. But we got there in the end. I even gave the stone of life a touch too. Anything positive yes please.

Thank you to everyone who has reached out with cards, gifts and messages over the last few days - this whole experience has been so very humbling and the support I have had will stick with me for the rest of my life. I truly hope that no one who has been reading this throughout the journey has to go through anything similar, but if you do - I hope there are things you can take from this. Being open, honest and talking about what I've gone through has helped me immeasurably. I sometimes wonder how this would have gone if I had kept it bottled up - I'm almost certain it would have been significantly harder, and who knows, maybe have provided a different outcome.

There is a stigma around cancer, be it naivety or just sheer not wanting to know because it is scary as hell, but I'm so pleased I've been able to share this experience. I'm pretty sure it has helped the people around me too. What more can you ask for?

So, apart from the scan and follow up appointment, what's next for me? Once I've shaken off the side effects of round 12 I am sure as hell getting my running trainers on and going out for a wee jog round the block! I am intrigued to see what I have/if anything in the tank. I've put on about 5kg during this process (probably a fair bit of steroid-inspired water retention combined with not running since 5th October) but I am keen to shift that as soon (and safely, I know) as possible. 

I've also got 205 days to go until the Chicago Marathon so... LFG.

I am also hoping to get back out on the golf course asap - especially as it is shaping up to be a sunny few weeks! 

And then, realistically, I'm looking at post-Easter to getting back in to the office and seeing actual people. Teams has been a godsend in allowing me to keep working and staying in the game - another thing that would have made this whole thing so much harder if I was limited to sitting on the sofa and waiting for the next round to begin.

Most importantly though, I need my bloody eyebrows to come back.  I don't look a million miles away from Voldemort at the moment, bar a more impressive nose. The 'brows did well for like nine rounds then checked out - we've had enough mate, see you in a bit. So I'll give them the usual two week cycle to what would normally be the next round with no pressure, but then I want to see signs of improvement. I'd really prefer not to draw them on but if that is a threat I need to throw at them I'm not afraid to do so!

(FYI, I will never draw eyebrows on - it's just an idle threat to my eyebrows as I'm pretty sure they can't read).

So there we go. Chemo completed. Totally wouldn't recommend it but you do what you've got to do!

Don't forget to book your tickets for the charity do/party of the year on Saturday 10th September. We've sold 30x tickets so far which is amazing considering I haven't turned in to a BOOK YOUR TICKETS nightmare yet and it's still six months out. Just drop me a line on any form of social or lymphomacharitynight@gmail.com. We've also secured our first sponsor(!) for the night in the form of the wonderful people at Solesmith which is the best news. Please shout if this would be of interest to you/your business too - be it sponsorship or auction prizes. Anything and everything is amazing and hugely appreciated by all of us and the charity too.

I will continue to blog, perhaps at a slower pace all being well, as I recover and get up to marathon speed which is my next big challenge. 

I don't think it will ever be possible for me to sufficiently thank everyone who has supported me along the way but I will do my best over the coming months and years.

But there is only way to finish this whole thing - THANK YOU!