The Personal Blog Of Steffi Lewis

Founder & creator of YourPCM ...


Cancer: The Last Word

The end of my journey, for now ...

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It's been an interesting six months in my world. To go from my initial diagnosis of Cancer two days after my birthday back in June, to sitting in Costa coffee on a sunny, but crisp December lunchtime, drinking Latte and scoffing a sandwich? Well, there's been a few ups and downs in between ...

When my ENT specialist poked a camera up my nose all those months ago, I had no idea the sort of tortuous journey I was about to undertake. You hear about Chemotherapy and Radiotherapy and the different effects they have on the human body, but until it happens to you, you just can't get it.

A few days later, when my Oncology specialist stuck another camera up my nose and told me that without treatment I'd "be dead by Christmas", well that just about brought the truth crashing down around me.

I remember squeaking something like "Me? Christmas?" and watching my beautiful friend Kirsty burst into tears and squeeze my hand. It's a moment I shall never, ever forget and the sad faces of the medical professionals in the room are etched in my mind.

"And so began three rounds of Chemotherapy!"

I soon discovered that in cases like mine, Chemo wasn't the cure, it was a way of stopping the tumour from growing any further and spreading to other parts of my body. Although it would reduce the tumour size considerably as well as kill any other micro tumours forming elsewhere, it was only a holding measure whilst they worked up a Radiotherapy plan to kill it.

A few days after my first Chemotherapy session, the powerful combination of chemicals hit the tumour and it reacted badly, putting me in the hospital with blinding headaches. This knocked me for six as I thought one of my aneurysm coilings had failed.

It was late at night, my thermostat had gone kaput and I was lying naked in a hospital bed surrounded by nurses drenched in perspiration and in massive amounts of pain. I really thought I was about to check out - so did Kirsty for a while - but it was the first time I got to experience 'morphine on demand' so I just made the most of it and slept until the tumour had finished complaining and accepted it was supposed to shrink, not swell up!

Chemo sessions 2 and 3 were a lot better although I did feel incredibly ill for at least a week after each infusion. The thing to remember is that I was borderline Stage 3/4 so they had to hit the cancer with the most powerful toxins available and I was getting the maximum legally allowable dosage of three different chemicals. No wonder I felt so tired and ill all of the time.

In the end, Chemotherapy was a complete success and it shrank the tumour by 2/3 and stopped it from spreading elsewhere in my body (which it would have done if it had reached Stage 4). Yes, it had sent tendrils outwards to my Pituitary Gland and down my neck to the top of my chest, but the Chemo had killed them and Radiotherapy was going to mop up any remaining cancer cells.

"I felt all fired up and positive about Radiotherapy!"

After a visit to Leicester to see the Radiotherapy specialist, I found myself being fitted for a mask so that my head wouldn't move around during treatment. Quite an easy process really where they drape a sheet of soft plastic mesh over you and let it set in shape. It's a little unnerving, but not at all painful. The mask was used for every single Radiotherapy session I had in those amazing photonic linear accelerators. Wonderful machines!

And in total, I had 30 sessions. Spread over 6 working weeks with a couple of days off each weekend. Looking back now, the treatment itself was pretty easy. Lie on a bed. Put the mask on, lie still while they shoot beams of photons into you for 20 minutes then go home. The most difficult thing about going every single day was co-ordinating friends to take me. Kirsty put her PA hat on and came through, organising a group of friends to a schedule, ensuring I got there each day.

I was breezing through Radiotherapy until week five when my neck finally started to get crispy and burn. Remember that although my tumour was located in my nasal cavity, it had sent tendrils down my neck. This is why they were shooting photon beams down my neck and all hell broke lose from that point in time forward.

"This was the point I got really ill. It was sunburn from the inside out!"

External burns means internal burns in my throat too. I'd already lost my sense of taste after two weeks of Radiotherapy, I now had razorblades in my throat, could hardly swallow thanks to the swelling and ended up in hospital once more under the expert care of the Oncology nurses.

Although I'd had a PEGG line fitted in my tummy some weeks earlier, I'd refused to use it to feed myself, but had to admit that it was the only way to stay alive as I'd lost around 10kg in a month. I finally accepted that I was wasting away and everyone was worried about me. The nurses started feeding me through the PEGG line and I just kept on accepting the morphine and sleeping the entire time I was in hospital.

Once I'd gotten into a routine for my medications and feeding - and the burns on my neck were on the road to recovery - I was allowed home on the condition I was looked after and two amazing friends, Kirsty and Julie spent the next couple of weeks taking it in turn to play nursie and make sure I got my meds and feeds on time every day.

"After two weeks, I was ready to go it alone!"

I really needed to get back to work for my clients. I'd already had a month off and I did lose a couple of clients during that time. I didn't want to lose any more or my business would become unviable. It was time to get back in the big chair, suck it up and get on with it.

But it's been a very difficult struggle to keep going. My throat is, even now, not 100% right and things I used to love - like bread, pastry and chocolate - all get claggy in my throat and not only don't taste right, they don't feel right either. Sandwiches are off the menu at the moment. I'm even having issues with the texture of Chicken so don't get me started on that! My favourite meat and it doesn't feel right in my mouth anymore. It is slowly improving though. Slowly ...

However, the pain in my throat has gone now and it's simply a case of 'Keep Buggering On' for the time being. I'd say my tastebuds are at around 80% now though I do occasionally get a surprise when I eat something and still get a blank on my tongue where a favourite taste used to be.

And I'm still just so tired all the time! That's the bugger of it all. I have bursts of energy that allow me to head out food shopping or drop into CMK for a coffee and some writing or business planning, but then I'll get home thinking "I'll go do some business implementing now" and I can feel that deep down tiredness in my core that stops me in my tracks.

"Do I curl up on the sofa or go lie down in bed for a while?"

I get a CT scan in February and they'll tell me if the tumour has been killed and if I'm cancer free or not. That'll be the next time I write about my cancer journey, but for now I want to summarise my treatment into one word: Brutal.

I certainly never want to experience anything like it ever again, but I have a lot to be thankful for and I want to say a few thank yous to my friends. So thanks Steve Axtell, Pam Mannell and Yvette Lamidey for being part of Team Steffi and getting me to Northampton General Hospital each day for my Radiotherapy sessions.

A huge thanks to Julie Pope for giving up her time and playing nursie for me when I needed it and the biggest thanks in the entire world to my best friend Kirsty Parris who, I've decided, is actually a real-life angel.

A couple of years ago, I experienced the worst humanity had to offer and never thought I'd be able to trust people again. The whole episode nearly killed me. But Kirsty has proven to me that there are people out there who do care, who do genuinely want the best for you and don't have their own agenda when it comes to the reasons they give you their friendship.

"So thank you Kirsty, thanks Julie, Steve, Pam and Yvette!"

And thank you to everyone who has supported me on this journey, sent me their best wishes, offered tea, sympathy and kind words, or even included me in their prayer networks ... it's made a huge difference.

And now we wait and see if my 'curative' treatment has worked. I can 'feel' that it has, but I do want to hear it officially from my specialists so that I 'know' it as well. More in February folks!

Love, light and logic ...


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More about Steffi Lewis ...

Foodie, sci-fi nut, cat lover, brain aneurysm & cancer survivor, countryside dweller, SaaS entrepreneur, developer and networker.

Published my first website in 1993 for the Open University and am highly experienced with Windows Servers, SQL Server, HTML, Classic ASP, JavaScript, and CSS.

I've also worked as a professional photographer in Los Angeles, USA and been a vision mixer and producer for live television in my time.

I live in a village north of Milton Keynes with my two cats, Baggins and Gimley, and a large planted aquarium full of unruly tropical fish.


01908 875991