I have written this post in my head for about 3 days now. It has also had 3 different titles.
The first was “Pearls of Wisdom“, hoping I could impart some form of advice for other’s with throat cancer.
I deliberated much about this. But quickly realised that I have no advice to give.
When I started this blog, it was my intent to do a day by day journal of my journey starting with discovery to finalising treatment. I did loads of research, read many many articles and many forums. I thought I had it all figured out and I knew what to expect.
The reality has been that my experience has been totally different to what I expected. In every way and the reality that getting up each day has been a challenge, and there is no way I had the strength or energy to maintain this blog either.
There were those who worked through their treatment and I am pretty resilient and self motivated and thought I could do this too. The reality is the treatment has pretty much had me bed ridden for the last 4 weeks.
There are those who are able to eat, even if they liquidise everything. I have not been able to eat for weeks, living off nothing more that water, juice and tea. I have NO appetite and no desire to eat whatsoever. I had to see a dietician who stressed the importance of eating (something I had no clue about previously I thought with a hint of sarcasm). She insisted I tried these meal replacement high protein shakes (I absolutely hate them BTW). It comes in small bottles and if I can drink 3 or 4 of those a day she would be happy. Well they sat in my cupboard for a week and about 4 days ago I felt low enough to think she may be right and this is what I needed to get my strength back. So I tried one. First sip was okay. Okay enough for me to try another. I took another and the thought occurred to me that perhaps I should have listened to her and I actually could get through a few of these each day. Then I had a third sip…… Which had me reaching for my puke bowl. The shake did nothing more than gongeal all the slime and mucos in my mouth into one horrible mess. I opened my mouth and started peeling the pink coloured goo from my mouth into the bowl. Then came the gag reflex and this brought up everything I had managed to drink all morning. And that was the end of me trying high protein shakes. So I still live off of liquids. Its not like its forever. Ive lost about 15kg, weight I had to lose anyway. Im sure it will all pile on back once I get my apetite back.
My throat has not been too sore. A little scratchy since yesterday. For some unknown reason the mucositus is calming down. A welcome relief. Perhaps without the mucos I will be able to take in more and I have noticed I am drinking more in the last 24 hours.
No, I have no pearls of wisdom for anyone. We are all different and we have to figure it out for ourselves. Just know it is hard work.
The second title was “Death by 1000 Blades”. For this is what my treatment has felt like. Each day being a real challenge. Not just a mental one but a physical one. Getting to go to the loo and spotting myself in the mirror, noticing that I looked like a woman 10 years older than a month before. Skin hanging everywhere. My neck looking like a sundried tomato from the radiation treatment. The nausea and accepting that the best way to treat it is with supositories. The tiredness which I can’t overcome.
I woke up ealier this week and said to my boyfriend we needed to talk. He asked what’s up. I told him I can’t do this anymore. I wanted to give up on my treatment. I had no quality of life anymore. I am done. I needed to start repairing myself and suffer the consequences and hope that the treatment to date had done enough. His reply was I don’t get to chose this time. There is more than just my life at stake here. There are many others who care greatly about me, including himself and my kids. And they needed me and I had to give it my best shot and continuing with the treatment was the best shot I had at getting rid of this horrid disease. So I do it. I suck it up each day and take whats coming to me. The treatment for throat cancer is apparently the worst treatment course there is by the way. I didnt realist it before but now fully understand why.
And this brings me to the actual title “Riding the Wave“. For this is the only way to get through this. Its to accept and learn to give in. And perhaps that is a little pearl of wisom on its own. I accept that I had chemo yesterday (my last by the way) and I’ll feel good today from the steroids they pump into my veins with the poison. But I know tonight and for the next 3 days I will be bed ridden. Feeling like crap. Not wanting to do anything but sleep and perhaps throw up. But this time I have learnt to accept it and not fight it. It is what it is.
A distant friend died yesterday after finding out he had cancer only 2 weeks ago. I reminder of how lucky I am. I have met so many people with cancer in the last 2 months and my heart goes out to them all. It is a horrible disease. And they need to put a lot more money into research and finding a cure. Fuck HIV – learn to use a condom FFS. When you have cured cancer, then worry about HIV. (Sorry if that offends some)
I could not have gotten through the last six weks without by boyfriend. He has been with me every step of they way. It was a battle of wills at first with me questioning every decision he made without me in our jointly run company. Not because I didnt trust him, but because I wanted to feel vital and like I could add value. Then realising I can’t. I am too sick.
He has been my pillar of strengh. Handing me my puke / spit bowl and a roll of toilet paper before having a conversation with me. Knowing I need to get rid of the slime in my mouth before I can talk. Then leaning over and kissing me on the lips and telling me he loves me and still thinks I am the most beautiful woman in the world. Bringing me fresh juice when I havent touched the last glass because he knows it tastses better fresh. Bringing me another cup of tea to replace the unfinished one next to my bed. Then reminding me to drink it 5 times else it will get too cold. And by the 6th reminder it is indeed too cold. Holding my hair up while I throw up in the basin. Sitting with me on the floor of the bathroom. Holding me in the shower so I dont colapse. Faithfully putting the magic R1 and R2 creams on my neck daily. And not once complained and has always had a smile on his face. I can only hope each and every one of you has someone like this by your side.
The last 6 weeks have been challenging. Not only because of my treatment, but business as well. But you know what. It is what it is. The sun will still come up tomorrow.
I am finished with Chemo and have 4 radiation treatments left. Is it a reason for celebration? Honestly I am in no mood for celebrating. The next few days will be hard. But then I need to muster up all my strength and start repairing myself. ANd it’s going to be hard work too. But at least today will be better than yesterday and for now that is all I can ask for.