How did I get here??? – The Diagnosis.

I’ve been thinking about all the gaps in my journey that I haven’t written about, and there’s one in particular that keeps coming to mind…

How did I come to be diagnosed with cancer?

I thought there might be some merit in sharing this particular aspect of my situation with others, so I’m beginning this tale at a point where I was somewhat embarrassed and hesitant, and concerned that I was wasting everyone’s time, trying to explain away a numbness and a very minor ache in my face. Just so we’re clear, this story covers a four month timeline, from early October 2018 until early February 2019.  

Like most other males I know, I hate shaving. Don’t really know why. I think over the years maybe I’ve just talked myself into not liking it, so I only do it every three or four days. I’ve got a full beard – I’ve had it since I worked in New Guinea in the ‘70s – but I still have to shave around the cheeks and neck area. It’s kinda the only time I stare at myself in the mirror and lately I’ve been noticing my right lower eyelid drooping more and more. It’s also drying out and giving me a bit of grief. I’ve also noticed that the razor feels strange against my right cheek. You know when you’ve been to the dentist and had novocaine - it’s wearing off you feel a numbness in your lips and the surrounding area. That’s what it feels like.

The eyelid drooping started after I had a BCC removed from the eyelid in 2014. I can still remember the surgeon at the time commenting on it and telling me he wouldn’t do anything about it ‘cause he didn’t think it would be a problem. He was right – for a couple of years. But I kept telling myself: it’s not going to get any better. Time to do something about it. So, after about six months of telling myself to sort it out, off I go to my GP.

When he checks me over, he decides it’s worth a referral. But, because it just needs a bit of tightening, he doesn’t think the Medical Team at the DHB will give it a very high priority. He tells me I might be waiting awhile. I’m not too bothered about that and I wander off back into my everyday life.

About a week later I get a letter from the hospital, telling me they’ve assessed my situation and have classified my procedure as Class 4 (non-urgent) and I will be scheduled for corrective surgery within the next three months.

Cool…

Feeling relaxed.

What the…??? About two weeks after the letter the Booking Clerk at the hospital’s chasing me, telling me he has an appointment date and time for me to see an Eye Specialist.

(No complaints about the Public Health Service from this little chipmunk.).

A few days later and I’m sitting in front of the Specialist waffling on about my eyelid issues, then I started whingeing about pain under my eye. The Specialist wasn’t happy about all the noise I was making so she suggested she take a couple of biopsies from around my eye while she’s sorting out the eyelid. Yep, says I. Sounds like a plan.

Skipping right along… less than two weeks after the appointment and I’m booked in for a Day Surgery procedure that fixed me right up. Two weeks after that and I’m back in the Eye Surgeon’s Clinic for a follow-up. The Specialist looks over her handiwork; she congratulates me on my superhuman healing properties; I congratulate her on her needlepoint, and then we start to talk about the biopsies.

All clear; No problems; Everything’s fine, and she tells me in a few other distracted ways that the biopsies have come out clean. But she’s frowning at me. She’s not happy. She tells me she thinks something’s going on and wants to refer me back to the Maxiofacial Surgeon that did some rust removal and panel beating on my nose back in 2013. Wonderful, we thought. He’ll sort me out. A few weeks later and I’ve had an MRI and a CT scan, all arranged by Dr G and his remarkably talented sidekick, “Ann the Clinic Nurse”.

Now, here’s where things get a bit tricky. I want to tell you how things went a bit pear shaped but I don’t want to appear to be a prat, or ungrateful, or an arse. At the end of the day, I think we can just attribute the next little interlude to a clash of personalities.

I had one and she didn’t.

Instead of being referred back to Dr. G, I was referred to Dr. B (a locum). From the first meeting with her Denise and I weren’t happy – to such a degree that the wonderful, amazing “Ann the clinic nurse” picked up on it and tried to smooth the waters and got smacked down (in front of us) for her trouble. Anyway, Dr B fumbled her way through the consult during which time it became very clear that she had no knowledge of the pathway I had followed to date, no clue as to which tests I’d had and hadn’t really looked at any scans, nor read any recommendations.

She started off by giving us a very condescending smile and then telling us my eye was fine and the biopsies didn’t show any problems. (Talk about deja vu!!) She then went on to show us a CT scan and pointed out a growth under my right eye. We were told of a plan where the removal would be done through my mouth – a concept I still can’t comprehend. We asked a few questions and received vague and confusing replies, but by then we’d pretty much lost interest in continuing the conversation.

Now, I’m not entirely sure how things progressed from then on. All I know is that we came away with the impression that the growth would be a “schwannomas” tumor – which are almost always benign but, would still have to be removed – through my mouth.

Anyway, a week or so later and again I’m on the phone to my new best friend, the Booking Clerk at the Hospital. He tells me I have another appointment, this time with Dr G. Well… that put a spring in my step and when I told Denise she immediately got her Mojo back. So, the next week finds us fronting up to Dr G.

After the conventional meet and greet he explains to us that he wants to do a biopsy. He goes on to say the reason is that he doesn’t agree with the diagnosis. He thinks it’s Squamous Cell Carcinoma - the same thing I had in 2013. A biopsy will give us a definitive answer and we can then plan the way forward. I think we surprised him a little then, with our quick agreement and nods and smiles all round.

Tuesday 8^th. January - I’m all gowned up and ready for Surgery.

Wednesday 9^th. January – I’m dressed and waiting in the ward after a relaxing overnight stay.

Dr G wants to see me before I go, so off we go to Villa 3. We have a chat so he can explain the way forward, presuming it’s SCC. This includes a trip to Auckland to meet with the Multi-Disciplinary Team, most likely followed by surgery and radiotherapy in Auckland.

“Ann the Clinic Nurse” is already five steps ahead and tells us her part of the plan. She’s going to arrange another full CT scan for the MDT, accommodation for Denise and I in Auckland and a fistful of fuel vouchers for the road trip. She then tells us she’s not going to “pull the trigger” until they get the biopsy results, but she’ll ring us as soon as she has them. Sounds good.

Two days later – Thursday - and Denise and I are at home when I receive an email from “Manage My Health”. This is the Patient Portal that connects me with my GP. The email tells me I have new records from Manage My Health, so I login to have a look. It’s the biopsy results. It’s confirmed. The lump is Squamous Cell Carcinoma.

So, there it is.

Since the diagnosis I’ve been asking myself: “What are you going to take away from all this?”

In the middle of lots of good things happening, there was one sour note. I guess I could focus on that and think about my path if we had progressed with Dr B. I imagine it would have resulted in having the lump removed while everyone assumed it was benign. Most likely finding out it’s malignant after the surgery and possible then needing another surgery to dig out any bits left behind. Who knows? But whatever… that’s negative thinking so it stops right here.

Now, I’ve also thought thought about this question a lot...

What was the difference between the two surgeons that made me feel uncomfortable with one and not the other?

I’m pretty sure it was the difference between a “question and answer session” and a “conversation”. With Dr B I thought the information offered, whether instigated by her or as a result of questions, was superficial and generic. With Dr G, it was a conversation – a real back-and-forth - where his credibility and knowledge was on display for all to see.

So, I think I learned two things from this…

If you’re not satisfied with the information you’re getting, don’t settle.

And…

If you understand the message, no matter how life-altering you think it might be, try to find the positive, and when you do, hold on to it… tightly.

Remember... no act of kindness, however small, is ever wasted.