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Neuroendocrine Cancer Community

That Fraudulent Feeling …

The last time I put pen to paper was November 2021 when I wrote a blog about my decision to take early retirement from a job I loved – because of a cancer I certainly didn’t.

Two and a half years later, this is an update on my thoughts now. ‘Am I a fraud?’ Let me explain…

The fact is, I’m ok.

Well, as far as having a cancer goes anyway. Scans, bloods, and appointments still come and go. But I’m ok. I still have cancer and I can still be unwell on some days, but I’m ok.

My blood tests and scans are conducted annually, at the Queen Elizabeth Hospital in Birmingham (an ENETs Centre of Excellence)- much the same as before Covid. I still wear a mask and sanitise my hands when entering the hospital (personal choice).

During Covid my appointments moved to telephone conversations, like I’m guessing many others did too. Today, my appointments are still conducted by telephone. Yes, these are different from face to face, but I was travelling 50 miles in each direction before, so it does speed the process up and costs me less. The appointments also don’t last as long (and I’m assuming this is also part of the NHS trying to be more ‘efficient’). I know I find it even more important to make sure I write down my topics of conversation now.

Results from scans and bloods are discussed on the phone and then sent to me in writing. So far, the news from those are: “Stable, no change.” As far as I’m concerned that’s the best news I can ever hear, accompanied by: “See you in 12 months”.  So, as I said I’m ok.

I attend many of the Neuroendocrine Cancer UK Natters (patient support groups)  and I help facilitate my local Face to Face Natter in Stoke-on-Trent. I attend some other charities networking groups as well. When at these events, I count myself lucky and, dare I say it … feel a fraud.

I’m four years into this journey or 54 injections in, however you like to measure the time. To date, I’ve only had one procedure and to be fair, it was a walk in the park (partial parathyroidectomy) compared to many. Three days in hospital, no issues, no issues from the GA and a simple recovery. I hear many of your stories and so far, count myself lucky. I also feel a bit of a fraud when I think back to having a few bad days after my monthly (SSA) injection and feeling sorry for myself. But I get over it and move on.

Much of that is obviously physical. But emotionally and mentally I’m also ok. I’ll confess to getting cross about having cancer and thinking why me? But mostly, I’m ok with it.

The rushes of anger, sadness, fear, blame, and guilt come and go. I’ve discovered I’m mentally quite strong (still not cried) and take things in my stride. I’ve also learnt that you can’t control when those feelings will arrive, but you can learn to control how you react to them. I wish I could stop them arriving, but there are limitations to one’s own powers.

I used to try to control the feelings with my ‘comfort blanket’ – my blue A4 Medical Ringbinder. I took it everywhere. It contained, and still does, all my medical paperwork in date order. I held it in front of me at appointments and Natters, as if it was a bat I could swing and hit everything away with. Over time, and as my anxiety lessened, I just stopped taking it, and now I don’t take it anywhere. It still exists, and it still contains all my paperwork in date order, but I’m ok, so I don’t need to take my bat anymore. For now.

Like I said I feel a fraud. But should I?

Is it ok, to be ok, and to be ok with having cancer? I think so, and why shouldn’t we feel ok about it? Yes, we are unwell, very unwell. But I also believe it’s ok, to be ok.

Further proof: I’m off to pack today for a 6-day trip to New York City with my wife, without the children, for our joint 40th birthday gift to each other.

Creon and a whole host of other meds to pack will be spread across two cases in case one goes AWOL. Blue badge at the ready to skip through security (minor perk to having a cancer). But I’m ok with all that, and since I’m ok, I’m certainly going to enjoy myself and have new experiences.

How much I pay for it when I return home, we’ll see. But it’s a risk I’m definitely willing to take because … I’m ok!

Hope this helps and raises a small smile.

Simon Walsh, NCUK Ambassador.

February 2023