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 .......
Hi many thanks for all your personal experiences. I didn't mention but my hubby is taking his fortisips via RIG, which having to take 5 a day can be an uphill battle. He has his good days, when he makes me laugh then real downers. Sadly he retired last Dec, the lump in his neck appeared Jan with all diagnoses being benign then after having his tonsils out we got the really shitty news. I couldn't believe the first 3 weeks were a breeze then it all went to ratshit. After week 4 he was admitted to hospital losing weight and with a chest infection and then again 2 days after completing his treatment. The one thing that really upsets me is that all we hear is everyone is different to how they cope,respond to the treatment. My hubby has always been half full glass guy but to see him cry with pain and frustration makes me feel so bloody helpless. Hes really addiment that no food will pass his lips because of the metallic taste and the pain in his mouth. Luckily he's had no problem with swallowing, but OMG he's hearing is almost non existent along with his tinnitus. I know it's a waiting game but no one can ever prepare you for this and we've really been through some really bad lows. Just waiting for the 3 month scan so we can hopefully start planning a happier 2018.Â
N
I understand your husband not wanting to eat the after taste is indescribable but you have to persevere I was advised to take pain relief prior to eating it might help as for his hearing I had a grommet fitted which helped me but didn't stop the tinnitus but hearing a lot better back to eating I find porridge youghurts trifle custard rice most dairy products easy to eat but still take 6 supplements a day as I can only manage a few spoonfuls but got to keep trying as you know everyday different.                                                   Toby       Â
Hi Fortisip,
My mum finished treatment for SCC of the tonsil with N1 spread in mid October.Â
Her hearing has also pretty much gone and she's suffering from tinnitus. Her ENT doctor gave her a hearing test last week and confirmed that she's not suffering from a build up of fluid behind the eardrums, which is common after this treatment. They said it is just one of those things. They gave her the option of either getting fitted for hearing aids or getting an operation to fit grommets in her ears which will hopefully solve the problems. The tinnitus unfortunately, they can't do anything for.Â
Hopefully everything is on the up for you both.Â
2017 can get to f**kÂ
NatÂ
Hi Fortisip and others on link. 15 months after treatment I still have long term effects including mild tinnitus, very poor taste, dry mouth and swallowing difficulties. There are no magic solutions. My hearing came back but mild ringing in ears persists. Food choice is difficult but after long time on tube initially and then reducing fortisips now totally on solids. Its all about small steps and trying to accept good days and bad days. Avoid negative rumination as much as possible to reduce anxiety. Fill your life with positive things if you can. I volunteer a lot which gives me a purpose. I rest to help myself cope with fatigue. Change is sl slow that at times you think it is not happening but over time it really does. All best to all going through the struggle
Hubby saw the ENT specialist Wednesday, ears are still full of crap. More ear drops to clear them out, then a hearing test and hearing aids. We had a review with the head and neck nurse/nutritionist yesterday which went well. Weight 82.5kg which they seemed happy about. He's got thrush in his mouth again which they reckoned was partly causing the bad taste in his mouth so hoping after a few days of meds
he might be able to try a little food (fingers crossed). Next step a meeting with the radiology consultant on Tuesday. With regards to your comment for 2017 agree whole heartedly. The big one will be waiting for the 3 month scan to see how well the treatment has gone. All the best to everyone xx
Hi
Hi there,
Well the day finally came when your husband is starting his treatment, ( I hope they didn't cancel on him again ) At least now both of you will know what to expect each visit, my varian machine teams were excellent, and the radiotherapy nurses could not have been more understanding or helpful, always made me feel like i was their only patient, when clearly they see many many patients a day.
The first one is a step nearer the last, something i always told myself, and he should be able to more or less breeze through the first two to three weeks, it gets a little harder after that because of the sheer number of treatments, but cross each bridge as it comes. I found the Chemo combined with the radiation was the worst as far as feeling ill was concerned ( about half way through ) but maybe he won't, we all react differently to our treatment plan ( boring to hear time after time, but so so true ) and as I say to everyone, the P.E.G. feeding tube becomes your friend, not foe, as treatment progresses.
You have both started the journey and you "will" get through it, tough at times but always try to focus on the next step, it's can be slow and sometimes arduous, but one day he will be through it all and out the other side......and that's what to focus on, because the better times will come, but for now ......one day at a time.....all the best to you both.
Marcus.
Hi Stchads,
Just wanted to say, You are so right about positivity, shut out as much of the negative thoughts and feelings as you can, it really does not help in any shape or form ( easier said than done sometimes, but that's even more reason to keep trying )
As for the "slow change" aspect, yes, you are "bang on the money" as they say.......I too used to occasionally think..."Ohhh, nothings happening, there is no change" .......but there was ! ....as you correctly say, it's so subtle and slow at times that it takes a while to realise, but over time you really do notice it, just not as fast as we would like sometimes, but just over 3 months post treatment and I'm a different man to the one i was just a month ago.......so yes believe ......because change will happen.
Merry Christmas and onward's and upwards with your recovery.
Marcus.
Hi MarcusÂ
Thankfully it wasn't cancelled and he had the first treatment this morning. Â So we were In and out in around half an hour it was very quick and he was fine I mean he was tearful and so was I but he brushed it off and got on with the rest of the day. Â I know now this is the honeymoon period (sorry if that sounds weird) and that now he's ok and I am prepared for what's to come having read so much but I also am realistic nothing can probably ever prepare you for the reality. For him he can't deal with it by talking about it he just wants to get on with it and that's fine. Fortunately I finished up work last week until January so it's not been as much pressure knowing that I'm around helps him and going to the hospital with him. Â Your right about the rt nurses they are so nice today one of them stopped because she recognised us which is amazing since we only met her once she was so nice answering questions reassuring him it really helped and you get this feeling that they care about what happens. They explained about double rounds over Xmas and the furst chemo will be Wednesday and double rt on Thursday - I'm assuming he won't be the best after all that ? Do you feel sick after first chemo ? Where you on nerve blockers ? Somebody in the family has warned against the ones he's on having bad side effects With vision. Hope you are still making good recovery ?Â
Take careÂ
Diana Â
Hi Diana,
Firstly, I'm really pleased all went well and treatment has now started, that in itself is a relief of sorts for both you and your husband.
In reply to your question about the Chemo / Double Radiotherapy etc: It's that boring answer again I'm afraid, really depends on your hubby's tolerance to either, as we all react so differently. For me the Chemo and Radiotherapy together was horrible, i felt extreme nausea, dry retching or horrible bought's of being sick ( Ensure creamy feeds did not help !....I later switched to Fruit Feeds, which helped immensely ) nasty metalmouth where anything and everything tasted vile, including water, and you need to continuously monitor your medications, if i took something and it didn't agree me ( Co-Codamal and high doses of Oramorph in my case ) the next time I saw my Consultant / Dietitian I changed it, never once was i made to feel as if i was a nuisance, and indeed, many times it made a big difference in my well being.
Also, and just as an aside, I saw my Radiotherapy team every day for six weeks on various Varian machines (not including weekends) every day without fail one of the team would smile and ask quite genuinely "How do you feel today Mark" and too be honest, after the first two and half weeks i felt pretty dreadful, weak, tired, with a particularly sore throat, and nauseous ( particularly from the hour and a half to two hours round journey in the car to Hospital ) I felt awful saying "Truly, I feel pretty dreadful actually" but they never threw a look or made that "Cheer up Face" they just responded with kind and positive words, and as time went on they got to know me, and I them more personally, so tell your husband to never worry about being anything but honest about the way he feels during treatment, and of course it's always uplifting for him and the team when he can say he's had a good night or day !
You are both entering the tough period, believe me when I say, I looked long and hard on here for someone to say to me "Ohh, don't worry, it isn't that bad" but no one ever did, because it is hard, extremely at times, but everyone I spoke with always pointed me towards the truth, with well meaning advice on how to deal with it, many were more graphic than others, and sometimes the things they mentioned never materialised for me, but sometimes they did, and it was only then I was grateful for their honesty as I knew what was probably coming and found my own way to deal with it.
There will be tears ! .....yours and most likely his, even if conducted in private and away from each other, or maybe you will share those tears, but whatever your emotions let them flow......you will be surprised how much tension and worry you release after a damn good cry !
Finally......never give up hope or positive thoughts ( and that in itself is a hard enough challenge when you feel as ill and as demoralised as a person can ) because things can.....do.....will get better......as always, it's just a matter of time.
Merry Christmas and a Happy New Year to you all, even though "Merry and Happy" is certainly not how you are probably feeling.......Enjoy what you can...and what you can't ..... let go.....
2018 will hopefully be better....... much better.
Marcus
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