5th Anniversary of Living with Neuroendocrine Cancer

Saturday 20th June is the 5th anniversary of my Neuroendocrine Cancer diagnosis, and I am very thankful that I am still here very much alive and kicking; if somewhat a bit quiet of late.  I am shocked to discover that I have not written anything for 6 months, but I just couldn’t bring myself to put pen to paper.  Or should that now be rephrased as fingers to keyboard… What I can tell you is that I am more than happy to still be here, and on the whole enjoying life.

Christmas and New Year was a busy time with the usual round of parties and socialising, and a vast improvement on last years holiday season health wise.  In the last 6 months there has been lots to celebrate, such as the lovely Christmas Wedding of my best friends daughter in the Lake District, and some major disappointments including our oldest sons wedding having to be put on hold just 3 days before the event. Although we did manage a small celebration on what should have been the day.  The Ramblings Potters also did the 2.6 Challenge in isolation together on the 26th April raising £780 in support of Neuroendocrine Cancer UK charity, thank you everyone who sponsored.  Like the rest of you though we have all been trying to deal with the current situation we find ourselves in as best we can; especially missing seeing family and friends and sticking to the rules, it can be hard somedays as you have very little control.

Over the last few days I have been thinking about how to approach this, and in the end decided that there was no right or wrong way to do this.  As such, with such a long break I thought that I would publish the notes from the presentation that I did with my fellow Neuroendocrine UK Ambassadors at the beginning of December 2019 at the UKiNETS conference In Birmingham.

Each of us dealt with a particular area of how this disease has affected us from a personal rather than medical perspective, presenting to the medical professionals that keep us going on a daily basis.  Mine concentrated on my emotional journey.

I have edited it slightly to make it easier to read, as it was in note form to prompt me as we only had 10 minutes each.  I have left it with the presentation headings at the start of each section, and parts I am sure you will recognize if you have read any of my previous blogs.  I hope it has some meaning for you too, and maybe helps in these uncertain times.

  • Diagnosed June 2015, a long and frustrating road to get there

Told that I had probably been living with this for 7-10 years prior to diagnosis which seems to be a common theme.  When you are diagnosed you expect them to try and take it out, but my tumours are in places they would rather not go unless my body gives them no choice, and surgery will not cure me, so I am stuck with this as part of my everyday life.  Therefore I am classed as a watch and wait, which is a whole other ball game, cancer is a lot to take in without that.  My only treatment options are my monthly injections supplemented by various other medications to help keep the side effects of this under control, including a course of  PRRT. But as you know this is not just about the physical as it plays with your head big time.

 

  • You cannot prepare for a cancer diagnoses

Nothing prepares you for a cancer diagnosis, especially when nobody you know seems to have heard of this type of cancer including your GP, it is a massive shock to the system.  I may have been living with my symptom’s for a long time, but the emotions its evoke are off the scale.  In one respect I was relieved, I wasn’t going mad, I wasn’t a hypochondriac, I really was ill (think Spike Milligan!!).  As a comparison; when you have your first child you get lots of advice beforehand, however it does not prepare you for the reality, the tiredness, the fear of being responsible for a small human and worrying about doing it right.  The reality of cancer is similar, there is plenty of advice  and information about the cancer itself, and the medical treatments involved and the side effects, but what about me the person, what do I do now? Life will never be the same again.

 

  • I am a ‘Watch & Wait’ –this is an emotional time bomb

Trying to explain why you don’t conform to the standard path of radiotherapy or chemotherapy, whilst trying to understand it yourself is not easy.  There are so many versions of this cancer, it is not organ specific, you can get it anywhere in your body which only adds to the confusing fog you are trying to navigate through.  Then whilst trying to process your own feelings and come to terms with what has happened, you also have to manage others expectations too, including dealing with the stereotypical picture of a cancer patient that so many expect you to become, and the old comment of “but you look so well?”.  So on the good days (and some of the bad), you slap on your smile (and maybe some make-up)and carry on as usual, as though everything is fine.  For example I suffer with pain everyday, but I do not admit that to everyone I come into contact with, you just can’t.  Having a strong support network is vital, not just family, friends and professionals, but people in the same boat as you so as you can talk openly and honestly, compare notes feel normal. I have also found that speaking to people with different types of cancer helps also, as we all seem to experience a similar emotional journey.

  • Guilt, Strength & Acceptance

As well as getting your head around you diagnosis, you are trying to understand the complexities of neuroendocrine,  trying not to dwell on the fact that things can change at any time, you are also landed with a massive pile of guilt.  As it isn’t only you that has this, you have brought in into the heart of your home, so as well as dealing with your diagnosis you have to tell those close to you and deal with their reactions too, and they come in many forms.  It is a lot to process and can be a big weight to carry at times.  Cancer definitely makes you appear stronger, in public anyway, as you feel you cannot show your true face to everybody. It took me a long time to accept the fact that I didn’t have to be strong or stoic or resigned to it.  Just accepting of what cannot be changed, which included lots of ranting, raving and crying behind closed doors.  Acceptance is hard though at times as cancer in any shape or form can be very isolating, and you never know when the next bout of despair/sadness/anxiety will hit you.

  • Honesty is the best policy, but its not always easy

It is all to easy to fall into the trap of not being entirely honest about how you feel physically and mentally, as I mentioned earlier I experience pain on  a daily basis, it is part of who I am and I tend to underplay it, which I know is not a good thing, especially when talking to my nurse or consultant.  This I think comes back partly to guilt, I don’t want to worry or impose, but also to the fact that it is normal for me; at times it is also it is hard to really express how you really feel.  Talking about the physical aspects is fairly straight forward, but being honest about how the physical makes you feel personally is not so easy. Some days it is hard to know which way to turn, especially as I think we have a tendency burying our emotions, and asking for help is not easy, as we have to relinquish control.  It’s no wonder we get anxious and depressed.  To be honest you do not want to show your vulnerability, you feel that you have to be seen as coping because you are not going to wake up one day and it is all gone, you just hope each day that the time bomb will continue to tick softly, slowly and manageably.

Once again, and I can’t say this enough, thank you to all my fantastic family, friends and medical team for keeping me going.  I really couldn’t do it with out you❤️

I’m not afraid of dying, it’s time I’m afraid of…” Interstellar 2014


14 thoughts on “5th Anniversary of Living with Neuroendocrine Cancer

  1. Not only did I stop blogging , I’ve appear to stop reading them too. This is a brilliant blog and your presentation is outstanding and so on point. Hopefully we will both get our blog mojo back. I just written one so fingers crossed for you too Kath. X

    Liked by 1 person

  2. You have wrote this so beautifully it has brought tears to my eyes in a good way as I can really relate to what you have written , I will be looking forward to next time you put pen to paper
    Thank you for sharing 🦋Toni

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  3. Thanks Kath. Reading your takes me back to my own diagnosis 4 years ago February gone. In August 2016 I had all my heart valves replaced (7th person in the world to have this op) as the carcinoid damaged the valves. I also have had PRRT and have fortnightly injections of lanreotide. I have Addisons now (steroid dependent) and Osteoporosis. Fortunately unlike you I have no pain. Reading your blog and putting down my words makes me revisit what I have been through and just how strong I am. Life is for living and I am finding different ways of enjoying it. Thanks again Kath x

    Liked by 1 person

    1. What a journey Deb, keeping going can be hard some days, and there are always plenty of challenges. So sorry to hear about the Addisons as well, that’s a lot to deal with o top of everything else. Stay strong and stay safe, and thank you xx

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