Chapter 2 Starts

Firstly and most importantly Linda and I want to thank everyone who has posted well wishes, thoughts and prayers today. There have been an enormous amount of them, and also a lot of questions.

Today has been so traumatic that I simply cannot answer every question and thank every person individually. I do want you to know that we are so in awe of the response.

Thank you.

I wrote last night that I didn’t think my challenges were over and sure enough a phone call this morning at 7 o’clock confirmed my worst fears.

The surgeon called me personally and told me that he couldn’t let the surgery go ahead. The tumor had advanced/grown too much and even if he did operate, I would still need radiation/chemo afterwards and therefore there was little point in putting me through the dangers of surgery and the pain and discomfort of the recovery.

He promised to talk to the Oncologist first thing and sure enough at 9:20 I got a call asking me to get to the Hope Regional Cancer Center by 10:30.

Here’s the deal…..

I will need radiation and chemo. The radiation will be given 5 days per week for 7 weeks. The chemo will be administered once per week for 7 weeks.

However, there are certain prerequisites that need to be completed prior to treatment beginning.

Firstly, I need to see an oral surgeon to have any poor teeth removed. The radiation therapy does a number on teeth and the risk of infection is high. Therefore they need to be removed before treatment.

Secondly, I need a feeding tube inserted through my stomach wall as eating may become impossible during the treatment.

Thirdly I need a port fitted to my neck to administer the chemo.

I will also need at CT scan and have an appointment with the chemo doc.

All this needs to be accomplished within the next month - sooner if possible. The main hurdle as of today seems to be getting to see an oral surgeon. There are not many left around here after Hurricane Michael and those that are, are booked up way in advance. I am going to have to work hard on getting the dental side of things done.

So my future is destined to be lived with few teeth, probably no hair and sickness from the treatment. The plus side is that my boyish good looks will not have been scarred by the neck dissection operation that didn’t happen 🙂

I got the doc to prescribe some pain meds (loratab) and these knocked me out this afternoon which I was quite grateful for. The downside is that Loratab contains acetaminophen which is not good for my liver or anyone else’s for that matter……but my liver has already taken a beating….

It’s not over ‘till the fat lady sings and this bitch ain’t singing yet.

My journey through this seems to be encountering obstacles at every move and sometimes I wonder how many more are going to impede my path to recovery. Obviously both Linda and myself are worried that every passing day may be affecting the final outcome and it is very difficult to cope with.

In some ways it was a relief that the surgery was cancelled, in other ways it is quite frightening. We simply do not know how this will pan out and all we can do is to try and remain focussed on the job of beating down these barriers.

When I started this Facebook page and website I was hopeful that people would follow the story, but I never expected so many to do so. I do hope you will stick with me but if you are getting tired/bored/uninterested in my ramblings I will fully understand.

I know from years of running a support group that there is such a thing as ‘compassion fatigue’ and honestly, it gets hard to keep on supporting an ill person day in and day out. I know many times I have had to walk away from my liver group for a few days as there is only so much I can give. It is draining.

This morning Linda and myself had a little cry but we are both better now. We accept what needs to be done and will work to make it happen. It is not going to be easy but there is only one straw to clutch at and we will do our best.

Thanks again for everything! All the kind wishes, all the prayers, all the advice and all the support. It is quite staggering and overwhelming!