I look well but you should see my insides

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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’ve been having treatment since 2010. 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 the 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 align 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 the 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.

And my new response to anyone who says I must be sick or a sufferer because of my condition – I’m not sick, I just have cancer.  I tested it out, it seems to work!

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  a smile and a wink “Yes but you should see my insides” 


You may also enjoy these similar and related articles:

Things not to say to a cancer patient – click here

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

Not the stereotypical picture of sick – click here

An Ode to Invisible Illness – click here

Poker Face or Cancer Card – click here

I don’t look sick, sorry not sorry – click here

Dear Doctors – there’s no such thing as a good cancer – click here

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

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Ronny

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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27 thoughts on “I look well but you should see my insides

  • VICKI VALENCIANO KUBAL

    I was diagnosed 2016. My first NETS surgery was February 2017 and they removed my ilium, that housed my original NEUROENDOCRINE TUMOR. SUFFERED with the syndrome symptoms until November 2018 when they went in for 5 additional NEUROENDOCRINE tumors, “they came out with 8” …3 additional tumors were embedded in my liver. They found them by ultra sounding my organs while I was opened up during surgery.

  • Diane F.

    I recently had lunch with a friend who is a cancer survivor. She lost her hair from years of various chemo treatments. Today her hair, as she like to remind me, is down to her behind. She posts on FB being 5 years plus, cancer free. Her LIKES hit record numbers. She said after lunch where I tried to explain my SiNETS cancer, “how long does your shot take at the clinic?” Really! I thought to myself. As if the quickness of my treatment means Ive got life easy. I will never be cancer free! This cancer is SO hard to explain and because we look so well, it can be a lonely place to live. I am grateful to you all for sharing your experiences so candidly. We need each other in our living with cancer lives, especially at the treatment center.

  • This is perhaps my favorite of all your blogs….diagnosed 12 years ago…symptoms years before…I have learned to ignore the unkind comments and savor the good. Age 77 means many other illnesses….this being the worst…….People love to judge ….my oncology nurses long ago told me how my attitude gave them strength to keep going on bad days and they often asked me to speak with those who needed a boost…..This is the toughest thing we have gone through…Many cancer friends are not and have never been as sick as me and my many NET friends…..


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    • as this is just a comments page on my blogsite, you’re unlikely to get any joy. Here’s my top tips for starting to work out fatigue issues. Firstly get your vitamin levels checked mainly D and B12 as these will be contributing. NETs and treatment will cause deficiencies, particularly pancreatic, stomach or intestinal surgery Try to get 8 hours sleep a night. Exercise regularly even if you don’t feel like it. All of these things have made a real difference for me. Also reduce stress as far as you can and be ruthless when doing it (e.g. reading too many forums will cause you worry and keep you awake, leave them if they cause you worry). Easy to say and I wont kid you it isn’t difficult or that it’s an overnight job. I have several blogs on the nutrition side – let me know if you need pointers Caroline

  • If you have read my blog, you know I am not well – not one bit. However, it doesn’t stop me from sitting through hours of pheo attacks in order to keep my ‘fab’ because i’ll be dead before my disease takes that away from me. LOL My pain doctor had to pre-warn the other doctor taking over my case “Don’t let her appearance fool you, she’s in A LOT of pain, she just smiles a lot and is really pleasant – it’s very deceiving!” <3 Great post, as usual. xo

  • Caroline jenkins

    I have lung metastases etc from a bilateral carotid paraganglinoma which has reached my skull base NET and made a mess of all my nerves and parasympathetic system which every doctor I have seen explains how rare this is I have had long surgeries radiotherapy chemo all of which my body reacted too and rejected the chemo as a last resort I’m still here day by day coping with the flushing sweating breathlessness etc fighting my through each day with a smile and my makeup with my heap of pills and potions firmly by my side to get through..But as you explained my insides are a jumbled up mess my head is determined but I do feel such a Freud and freak when people say “but you look so well” so thank you Ronny my new mantra is ‘ yes thank you, but you should my insides!’ Keep blogging and giving us all a giggle and a smile. For that I’m grateful xxx

    • Oh dear Caroline, you’ve been in the wars. However, it’s good that you are not pitying yourself and getting on with it. Giggling and smiling is good too because it’s medicine. 😁

  • I know what you mean, Ronny. I sometimes feel almost guilty walking through the cancer clinic because I look and probably feel so much better than most of the other patients. My NETS was diagnosed almost two years ago.

  • yolonda outlaw

    Most days I feel so exhauste and short of breath. I’ve had surgery and NET has been removed but the after affects and the long term teatment is so depressing. Most days I’m in tears when no one is around. I put up an awesome front because people judge how my health is based on my outward appearance. I too help others and it makes me feel healthier.

    • sorry to hear that Yolonda. I don’t know how long it is since you’ve had surgery but things should improve otherwise you need to go seek help. It’s important to find a new normal for you but it needs to be a positive normal too. You need to do more of the things that make you feel better. It might also be useful to join a support group (even online) and meet others in a similar situation. Talking helps.

      Ronny

    • Yolanda

      Yolanda,
      I know what you are going through. Just completed second surgery.It took some time before things got better.After second it got better much quicker for me.I Will pray for quicker recovery and feeling well.You will be in my prayers.

  • Dorothy knight

    Hi Ronny, My reply to but you look so good is, thank you but don’t look under the bonnet. Keep well, we all enjoy your information and encouragement.
    Dorothy K

  • Greg Siner

    Ronny,
    I feel the same as you do. I have lung cancer with no symptoms other than a chronic cough. I look good and feel pretty good even after my third week of chemo and radiation. But I can’t help but feel for the others I see with cancer that look bad. I always encourage them with a smile or kind word. It seems to make their day. God Bless Ronny and good luck with your treatments.
    Greg

  • You know, I understand exactly what you mean. It’s crazy but people look at your outward appearance and make quick judgements. It’s not right but it’s how people are.

    Here’s my trick to feeling more comfortable in that situation. I PRETEND that I’m healthy. It sounds crazy but it helps. I pretend that I’m healthy and look for opportunities to help others through an encouraging word, advice, a smile, picking up something they may have dropped. Things like that. It does wonders for you mentally AND sometimes you get to actually help somebody and THAT will put you on cloud nine!

    Stay Strong,
    Ed

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