I look well but you should see my insides

insides
Perceptions

I’m sat next to patients waiting on their chemotherapy treatment – the “Chemo Ward” sign above the door gives it away.  I’m here for my 28-day cycle injection of Lanreotide which will hopefully keep my Neuroendocrine Tumours at bay. I look all around, the temporary beds and the waiting room are full and all I can see is people who don’t look as well as I do.  Some have hats or bandanas partly disguising the loss of hair. I feel for them.

No matter how many visits I make, I can’t help feeling out of place on a Cancer ward. I’m not sure why I feel like this; after all, I’ve had some very scary surgery and I’m still being treated after 7 years. However, this thought doesn’t seem to balance it out – some of these people may also have had surgery and are now having adjuvant (follow on) chemotherapy to get rid of remaining cells. Others could be heading for surgery after their neoadjuvant chemotherapy treatment reduces the tumour bulk.

But isn’t that the same as me having 2 months of somatostatin analogue treatment plus a liver embolization in preparation for my surgery?  Perhaps the same principle but somehow this still doesn’t seem to balance out as some of these guys may have been undergoing palliative treatment just to extend life.  But shouldn’t administration of somatostatin analogues be considered palliative in the brave new world of ‘incurable but treatable’?  Or indeed biological therapies such as Everolimus (Afinitor) or Sunitinib (Sutent) or even radionuclide therapies such as PRRT?

I guess there’s just something conspicuous about chemotherapy and its side effects that aligns with most people’s view of a standard cancer treatment regime.  People automatically assume you get chemo for any cancer and I have been asked by one or two people why I’m not getting it!  I must be doing OK as I’ve not had it! 

I think the perceptions of cancer patients can be somewhat stereotyped and people generally expect to see ill and poorly people when they see people with cancer – both at the point of diagnosis and during treatment. That said, some cancers can be as invisible after the treatment as they were before diagnosis.  I have metastatic and incurable Neuroendocrine Cancer but I looked well at diagnosis and I look well today.  That said, I wish all those people I saw today well and hope they all get through their chemo treatment and beyond.

I actually don’t get too upset when someone, having found out I have incurable cancer, says “you look really well”. I’m glad I look well, I mean, who wants to look unwell? That said, I’d rather look less well than have cancer.  Just don’t tell me I have a ‘good’ cancer!

I guess most people are just being kind despite any obvious awkwardness.  So I just smile and say thank you. If I’m feeling mischievous (always!), I wink and say “yes, I may look well but you should see my insides“. Sometimes they ask about that which then presents another awareness opportunity.

You may also like my blog “Things not to say to a cancer patient”

EDIT – Please note since writing this article, I now get my injections at home for free via the Ipsen sponsored “Homezone Plus” service.  For details click here.

The nurse always says I look well and I always reply with “Yes but you should see my insides” 🙂

Thanks for reading

You may also enjoy these similarly related articles:

Shame on you! – click here

I look well but you should see my insides – click here

Things are not always how they seem – click here

Not every illness is visible – click here

You must be doing OK, you’ve not had Chemotherapy – click here

Not the stereotypical picture of sick – click here

An Ode to Invisible Illness – click here

Poker Face or Cancer Card – click here

Thanks for reading