"You look so well"

One comment makes me smile inside these days, and today its happened 4 times, "you look so well" It makes me wonder how people expect me to look or is there a social expectation that those of us with cancer look stereotypically cancer like.

To be honest the waiting room of the chemotherapy suite at the hospital looks no different from any other, and the patients waiting for treatment on the whole look like any other patient group. Yes, a few show tell tale signs of  chemo induced hair loss but they are in the minority,  and its a surprisingly chirpy place with people greeting each other and just talking normal stuff like weather, price of parking in the hospital etc.

In the chemo suite too patients greet each other as they go in for treatment and it is a surprisingly soul lifting and supportive experience with patients sharing a common bond with each other and the nurses on a regular basis. For some like me, my treatment takes just under an hour if the chemo had come from the pharmacy on time, but others are in there for hours at a time receiving more complex combinations of drugs.

Now my current course of chemo has ended and I have had my CT scan, its now a matter of waiting to see my oncology consultant next week to see if the chemo has worked or this particularly invasive bile duct cancer has spread to other areas ie liver, lungs or bowel. I know I will be extremely nervous on that day but on the other hand worry is not going to change the outcome be that good or bad news but I guess its a very vulnerable time with potentially lots of information to take in and deal with.

Yes, people are right, I do look fairly well at the moment, one side effect of chemo is that ones skin browns faster so we are warned to take precautions in the summer months and yes I have lost my  jaundiced appearance where I was starting to look as yellow as a minion character. but people cannot feel the discomfort, the tiredness and exhaustion I can feel on a daily basis where one has to force oneself to get motivated etc these are the invisible effects of not just cancer but many other illnesses that many people fight on a daily basis. However on the whole I am positive about the future whatever that may be and eternally grateful for the treatment the NHS has given me and will continue to do so for as long as I need it.  I have my off days where I have more negative thoughts and worry about my disabled daughters future should I eventually lose this fight,  and even worry about who will care for my two dogs who mean so much to me. As I go round the house now I am subconsciously trying to dispose of clutter and stuff that is just lying around in cupboards just in case.

I guess this is normal behaviour and I cannot do any decorating at the moment as I feel there may not be any point if there is a possibility I may not be around to enjoy it and why should I decorate for someone else to come in and change it! This may seem depressive but it isn`t meant to be, a terminal illness is I think a great leveler, I live in the here and now, I am unable to make plans too many months in advance, short term is more important than long term and I appreciate simple things a lot more, a kindly word from people as I am out with the dogs, the neighbour who passes a fresh home made cherry cake over the fence, my hanging baskets and flower displays that I spend hours tending, a message from my many friends on Facebook and the love from my children and extended family. Life is very hectic for all of us at the best of times full of deadlines and goals in our working and family lives and perhaps we are guilty of taking life too much for granted, forgetting the smaller simple things in life, like our family, pets, sunrises, the glorious sunsets, friends and the neighbours we rarely acknowledge or even know the names of. So yes I do `look well` on the surface, but I am also so much more aware of and appreciative of what and who is around me and just keeping my fingers crossed that I continue to be one step ahead of cancer for some time yet!

Look after ourselves my friends and just do me one small favour, as you  read this take a moment to think of and appreciate those around you who mean so much to you and give them an extra special hug and let them know that you love them, because you never know .........

Taking up the blogging mantle again.

Hi all some of you will remember my previous blog following my Parkinson's diagnosis in the summer of 2013 and how this fitted in with my role as a full time carer to my daughter who has a learning disability. You were also introduced to Max and Perdy our family Jack Russel's and also Connor our elderly westie who has sadly passed since my previous blog.

We live in Cornwall UK a wonderful place to live but even in such an idyllic setting. the realities of life hit us between the eyes and in my case in 2013 this was my diagnosis of Early Onset Parkinson's Disease. I think Parkinson's is an illness most of us are aware of but until it directly affects us or our family it remains an awareness and we have no real concept of the impact it has on people with Parkinson`s (PWP)  or their immediate and greater family.

My previous blog ran until 2014 when again I received another devastating diagnosis, this time of cancer, and this has had a major impact on my life following major surgery at Derriford Hospital in Plymouth where on November 20th 2014 I underwent a near seven hour operation to remove a satsuma sized tumor and part of my stomach. This surgery is known as a Whipples procedure   https://en.wikipedia.org/wiki/Pancreaticoduodenectomy. In short this surgery saved my life but after 8 days in hospital I was allowed home to continue my slow recovery.

To bring things up to date I have just finished 6 months chemotherapy which to be fair once we had the correct combination of drugs to control the nausea and sickness I tolerated reasonably well, it was the fatigue a couple of days post chemo that I found  hard to deal with  but that is behind me for now, and following a CT scan this week I am now waiting to see my oncology consultant to see what the scan has revealed.

I guess my blog has two possible interest groups now, other Parkinson's folk and also people who have had similar cancer experiences, not forgetting of course the families who are also on the journey with their loved ones be it Parkinson`s or Cancer.

I hope you enjoy the blog as much as I will enjoy writing it.  The journey is unpredictable and at this time I don`t know the outcomes but thank you for letting me share it with you and I would welcome your feedback/comments via my email borninkernow@outlook.com or on my facebook page https://www.facebook.com/tjkernow

The blog page will develop and change as I add photographs etc and learn how to make it look professional!!

For now please bookmark the blog and I look forward to sharing my journey with you.

Take good care
Tony.