Hello again,
Haven't shown my face on here for around 3 months, I have been dealing with the after effects of 6 weeks of treatment for Nasopharyngeal Cancer, 30 bits of Radiotherapy and Two Cesplatin Chemo, 6 weeks daily in all, and now post treatment almost 3 months.
After going through such harsh treatment ( and I wish I could soften the blow, but no-one on here if honest will call it enjoyable, little own manageable, it's doable, but it's a challenge on mind and spirit that's for sure. ) During treatment I suffered from fatigue, nausea, retching and vomiting (chemo) and having to get used to all protein etc by P.E.G. tube, in itself not that bad, you just yearn for some solid food is all...... had the usual worries and concerns, be that the illness, family, friends, work etc:
Then you hit the third or forth week and the throat starts to tighten, get sore, both internally and externally, tongue can also swell or get very sore indeed, talking, eating and drinking becomes very unpleasant, and I for one after a particularly bad day had a few tears in the shower that night, just a sense of being out of control and feeling sorry for ones self. That in turn bought on the dry mouth and throat syndrome, whereby I was waking literally every hour just to rinse my mouth or try and swallow a sip of water, many times I just administered medication to ease or control the pain, which varied in strength and at which times it visited, but by and large very little sleep and found myself taking regular naps in the day just to try and catch up with the loss.....The thick mucus and vomiting that many talk about hit me quite severely, others I know not so much. I simply could not believe the amount and for how often when it did occur, and the retching and coughing up only made the throat even more sore than it already was. It was one of the most unpleasant aspects of the entire treatment, but I'm glad to say it has now subsided post treatment and only really re-occurs ( on a much smaller scale ) if I eat too much Dairy ! and remember, not everybody suffers from this side effect, and I hope you are, or were, one of those.
Treatment ended on 25th August 2017......All of us feel a little rough just prior to, and indeed for a good few weeks after treatment ends, the accumulation in the body of all the Radiotherapy and Chemo, the medication, lack of food and sleep, weight loss, all contribute to making life pretty uncomfortable in that period, but we are all different and our bodies react differently to treatment from case to case, this is my experience, but it may not be yours.
As the weeks progressed through September and into October, I started to feel slightly better, a little more energy was most definitely noticeable, I tried some buttery mash potato with un-seasoned gravy at the end of October and found I was able to eat and swallow it, okay, so it took a while, and I found myself eating it almost cold by the end of the meal, but no matter...I was swallowing again, and that in itself made not only myself, but the Hospital team very happy too ! ..... I started to try various soft dishes, sometimes liquidised just as if i was going to put it down my P.E.G. but instead swallowed it down as a soup.....I even added some thinly sliced roast beef and mash to one dinner, and thinly sliced chicken to another, ( the plain cheese burger that my well intentioned son bought home for me was a no no .....tasted like cardboard and proved very hard to swallow, even with a drink....so that's out of the question, but the dog thoroughly enjoyed it !
So here I am now nearly three months on, hospital team are very happy with my progress, could do with putting a little more weight on they say, but I'm working on it every day. Half mouth, half P.E.G. still not at the stage where I can do without the tube, but hopefully that is only a few more weeks away. I still get the occasional nausea that surprises me, and in turn sends me running to the bathroom day or night, but again that is getting better by the week, I can taste most things ( which I'm told is a big bonus a this stage ) but saliva is a real problem still, and will continue to be I'm told ( but for how long i ask !!! ) I smell cooking and think I could eat a horse, only to find i can barely eat some scrambled egg.....Water is still my most comfortable drink, tea and coffee too claggy and dairy like in my throat and mouth, talking of which, tongue still flares up occasionally, and when it does, boy is it painful......BUT.......I am definitely better than I was, will be even better if synopsis P.E.T. Scan on 27th Nov is positive.....(fingers crossed) and I'm sure I am getting better every day / week, but that doesn't stop me feeling down still some days,but I think that's just the enormity of the journey isn't it ?
If you are in treatment , or post treatment, this is just a brief description of how it was / is for me.......I wish all and everyone of you a positive outcome, and long may you continue to enjoy your life with family. friends, and loved ones.
Marcus .......
Thanks for that Marcus; a very personal tale that many of us (certainly myself) can relate to much of. So pleased things are looking up for you, I'm sure the scan will be fine but it's a tough time we all go through and you describe it very well.
Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.
