Got my grades back

This time it’s good news, but let’s rewind a bit first…

“You have cancer”

Those words are simply the beginning of the journey.

From that moment, you are bought into the arms of consultants, surgeons, doctors, nurses and healthcare workers and trust them with your life. What you need to know is your TNM grading without even realising what that is.

Not just me the patient, but also Mr J, parents, brother, family… We all wanted to know what was happening but one must need to embrace patience in this scenario.

Each journey is different, I can only share mine. I’ve had two, cos I’m greedy like that, but I’m focusing on my most recent journey.

Before even hearing those words my consultant was pre empting. As soon as he found something suspicious he got my bloods tested and a CT Scan done, on the same day. Bearing in mind I was slightly off my face on concious sedation the day was a bit of a blur, which in hindsight isn’t a bad thing.

The CT suite team bore witness to my first snotty breakdown, I think I knew at that point it was going to be a rough ride. On the upside though it did get me posh biscuits and a (proper not vending machine) lovely cup of tea, with one of the team sat on the bed with me calming me down, talking about dogs for 10mins. Who doesn’t like to brag about their pet?! Oh. Just me….?

Following more off my face drugs and the failed EMR surgery, with subsequent 2nd histology diagnosis (please note, I can’t say this enough, I developed cancer from high grade dysplasia in just 4 weeks. Time is imperative with cancer and treatment plans) we were invited to my GP surgery to discuss how they could help me moving forwards.

Another appointment with Mr B (consultant) we were told that my CT did not show any large masses, but we still needed histology. The bad news at this stage was being told that the next steps were the panproctocolectomy, total hysterectomy and bilateral salpingo oophorectomy. Try saying that after a few large vinos!

I was bought into the pain clinic in the hospital for an “accelerated recovery scheme” personalised fitness assessment. I was monitored up (heart, oxygen levels, blood pressure and breathing output) and rode a bike at a constant speed for 10mins.

Picture this, I’m peddling away like almighty, sweaty and verging on emo, but able to listen to very loud motivational music of my choice knowing Mr J was outside the room rolling his eyes! Don’t judge me, I chose Bonnie Tyler, Journey and Angry Anderson-what made me feel a little old was that the young nurse in the room had no idea who Scott and Charlene were!

Anyhoo, the output from this activity helped us measure my health levels, let’s the anaesthetic team tailor their plans around “me”, gave us some stats on survival (always helpful to be told that it’s more likely that an aeroplane would smash into the operating room than dying on the table), exercise plans for the run up to and post surgery, and a very good chat about mental wellbeing.

This was the bit I was probably most impressed with. Mediation techniques, calming deep breathing exercises, visualisation and happy places (if you’ve ever visited Casa Ward in Menorca you will recognise the image on the stone. If you haven’t, well it’s on Air BnB #shamelessplug ), positive affirmations etc. Really tailoring everything to “Debs”.

The outcome of this meant I did atleast 30mins of high intensity work out every day before surgery, (OK some of it was on a machine indoors whilst watching Coronation Street and Mr J challenging me whilst the dog was looking at me like I was nuts…) getting my body as prepared as possible, whilst also working on my mind and my thought processes making sure I was mentally prepared. I even did a 5km canicross with Carol and Kim cheering me on when ridiculously hungover following the plum vodka/gin evening, (thanks Mr J!) because I had to.

I was the only one who could prepare my body and mind

Preparation appointments with the stoma nurses, phone calls and as many appointments with my consultant that we needed, all designed to help me feel in control.

Mr J has been to every single appointment. I think if you happen to be on a similar journey it’s helpful that your nearest can do this. It helps when you can’t remember what is said, but mainly it helps them. They cannot control anything that is happening to someone they love, but being involved can help them understand and input to your treatment plans. I wouldn’t have wanted it any other way. Even when I have asked questions about intimate things, (not sure a public forum is the right place for that funny story!) I want my husband there holding my hand, but I want to be holding his hand too. I’m his wife and it’s my job to look after him.

All through this though is the thoughts of “how bad is the bowel cancer exactly, is there anything lurking in my ovaries and womb as well that I should worry about, is it anywhere else…”

What I needed was my TNM, which is what tells you the stage of cancer by looking at its size, where it is and if there is any spread. To do this I had to wait til after surgery for full histology on all my organs.

Long winded post to get to this point but these images below, from Bowel Cancer UK, help explain it.

This image is also helpful:

Last week we met my consultant and he was positively beaming. This was a VERY GOOD sign before I’d even sat down.

This time I was T1, N0, M0. Contained no lymph or blood involvement, no cancer in my other organs.

They found 2 other areas of my bowel that would’ve turned into bowel cancer down the line, cysts on the ovaries and fibroids on the womb, so the drastic steps we took because of Lynch Syndrome were the right ones.

This time we couldn’t go to the pub and get smashed due to my pain meds, but the champagne will be chilling for Christmas Day!

So hopefully this helps you understand the grading a little more. It follows suit for othe cancers too. Don’t be too scared by it, I was T3 on round one, and following surgery and chemotherapy managed full recovery (this bowel cancer was not linked to the original).

With 1 in 2 of us getting cancer in our lifetimes the more we share understanding of journeys and terminology, the less likely we are to feel quite so scared of the unknown.