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Hi to the Forum

27 Sep 2018 16:05

Hello all,

I hope its ok to share and am hoping that my little story can be shared with others and am trying to maintain positive thinking after being diagnosed with stage 1 throat cancer.

It's not for everyone but I do have gallows humor and it has helped me no end while going through diagnosis and impending radiotherapy.

I started noticing a lump like feeling in right side of neck and was there everytime I swallowed and round about Jan this year
I visited the GP 3 times to tell them but was told its nothing and throat is fine.
Was after 4th visit I was referred to ENT consultant, had tube down and told was fine, no cancer , red tonsil bit inflammed and might have bit of flux and acid from stomach.
Was given landoprosol and had a really bad reaction and after 4 weeks of chronic diahorreah was then hospitalised for a week of intravenous steriods. This also made me miss my follow up ENT appointment.

Next ENT appoinment, I thought was going in to be told when tonsils out, but was told fairly sure cancer now and needed surgery asap and was to get a pre check that instance and MRI and CT scan
In hospital few weeks later and most right tonsil out ( recovery not that clever)

Biopsy confirmed throat cancer stage 1 by consultant who advised needed 6 weeks radiotherpay.
Then few weeks ago all back teeth out before radiotherapy in 2 weeks times.

Also had my mask made 2 weeks ago.. The first one was loose and had to get another made same day. Takes around 10/15 mins and was not that bad to be fair.

When you read back it sounds awful and I guess it is, but I have never once wavered and kept my humor, which has helped my partner and family and myself. I look upon this as an ailment that needs treated but although having to go through radiotherapy in a few weeks there is light at the end of the tunnel.

I have radioatherpy and no chemo, have been told by consultant that although not  100%, pretty sure looking to cure this.

Its not for everyone and shock to take but Ive remained positive, ever since I was diagnosed and just accepted whatever I have to do.
Steriods caused quite bit weight increase but was told could help when going through treatment. I have given up alcohol from the day was diagnosed and also no more fizzy drinks for me.

It's not pleasant, i agree and I am continually tired and sleep is fractured and probably my only concern as treatment is meant to make you even more tired. I am constantly havig power naps during day at around 2 hours at a time.

It's been from Jan until middle of October before my radiotherpy for 6 weeks starts and I guess as a result series of added unforunate incidents with Microscopic colitus after landoprosol, which isnow under control after 3 months of steroids.

I wonder if its normal to remain so cheerful and positive but I guess being stage 1 and told hoping to cure this by consultant helped.
Everyone will have a different story and after coming across this forum found it quite therapeutic and hope no ones minds  my cheerful attitude as not meant to belittle the diagnosis but to tackle head on and be positive.
I imagine might not be so good with the side effects of radiotherapy, but have no option to have and there is light at end of tunnel.

Apologies if a bit wordy, but just wanted to share my litle story and I have personally found having a positive attitude and keeping fun, has really helped.

regards

ian

 

 

 

 

 

 

Hi to the Forum

27 Sep 2018 17:30 in response to Anchor1707

 

Hi Ian,

A warm welcome to our forum. Contrary to what you think, it is great to find someone in the early stages with a positive outlook and a good sense of humour. A positive outlook and a belief in your consultant is one of the best possible ways to deal with this head on.

I hope that your radiotherapy works well when you start it in 2 weeks time and that you are one of the lucky people who experiences no side-effects.

Let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx.

Hi to the Forum

28 Sep 2018 00:59 in response to Anchor1707

Hey I've just read your story, I put up a post earlier I have reactive tonsils and a lump in my neck nodes...I have an ENT appt tomorrow after going to gp to be told it's an infection and then swabs say there's no infection.

granted I'm 29 years old but this lump was pea size last year and now it's bigger than that in the 6 weeks of having a PET ct scan for abnormalities because my crp was persistently high for a full year and having pyrexia and infections after infections, it showed up! 

This past week alone has been awful my neck is sore and my swallowing is getting difficult the back of my neck is a constant ache and I am feeling weaker and weaker.

 

im sorry to jump on your post but I would be grateful if you give me advice and what to expect at this ENT appt I want to be taken serious and I really hope it isn't cancer but I have to prepare myself for the worst.... I hope it's a cyst or an abscess or something completely benign but there's always that possibility it's not x 

 

thanks tl x

Hi to the Forum

28 Sep 2018 01:11 in response to Jolamine

Hi Jolamine,

Many thanks for your warm welcome and kind words and what a great forum.

I note that you are a night owl like myself lol.

I will post how I get on no matter what. I am told that one of the side effects could be losing my taste buds and Im a keen chef as a hobby.Ah well, I will just have to revert to my partners cooking as you dont need many taste buds for. To be fair she does a mean scrambled eggs!

On a serious note and just my own experience, is that partners can often be more traumitised than the individual with diagnosis.
Its very scary for them and feeling of what to say, what to do, trying to overhelp and it does not come with a book and chapters on what to do or say.

Often the not knowing is the worst part and the waiting.
Now I have been diagnosed with throat cancer I have Fiona with me at all my appointments, albeit we are lucky we both work in NHS hospital so not so bad for her getting little time off for appointments etc.

Sometimes hard to take in all the information and what questions to ask but having my partner helped with both.
Fiona was in with me with conultant appointments and follow up ops for tonsil/teeth removal and also in room when mask was getting made.

But having partner share the journey has helped both and found much more positive than having Fiona sit in waiting rooms/home worrying and wondering whats going on.

Glad I joined the forum though.

kind regards

ian

Hi to the Forum

28 Sep 2018 01:55 in response to Anchor1707

 

Hi Ian,

I am glad to hear that you are getting such good support from your partner. I have had 2 bouts of breast cancer in the past 8 years, the second was 7 years ago. My hubby comes with me to all of my appointments and writes down the answers to questions that I ask the consultant. This ensures that we don't forget some important answers. We usually draw up a list of questions before each appointment - this is to make sure that we don't forget to ask something important.

Cancer is a rotten disease. It affects your loved ones as much, if not more, than it does yourself.It is so much easier to deal with when you can both talk openly about everything. I have found this forum very helpful for advice, information and just to rant. It is also good to have the benefits of those who have similar cancer to yourself. You are fortunate in that you both work in the NHS and can get away from work for your consultations.

Unfortunately, your diagnosis does not come with a book of instructions. Cancer is as individual as the people it strikes, so there are no hard and fast rules to go by. Fear of the unknown is definitely a big issue but you will find it so much easier to deal with once you now exactly what you are have and start moving forward with treatment..

I am afraid that I have always been a night owl, but I have got even worse since I was diagnosed with cancer. I have not had your type of cancer, so I don't really know the drill. I expect that you may have a few tests taken. These will be sent away to decide on the diagnosis. It usually takes just about a week for breast cancer results, but I believe that it will take longer for the throat. Ask your surgeon how long it will be before you get the results. It is always helpful to have a rough idea.

It is difficult to stop partners from overhelping, but it usually settles down with time.

I look forward to hearing your results after yourENT appointment tomorrow.

Kind regards,

Jolamine xx

Hi to the Forum

28 Sep 2018 02:01 in response to Jolamine

Hi Jolamine,

Thanks again for the warm welcome and kind words.

I already have my diagnosis and start radiotherpy in 2 weeks and will post as I go through.

The other thread is Tolea who has ENT appt tomorrow and hope all goes well for her.

Kind regards

Ian

 

Hi to the Forum

28 Sep 2018 02:10 in response to Anchor1707

 

hi Ian,

I think that it's time I went to bed when I'm making mistakes like this. Not sure how it happened, but my sincere apologies.

Regards,

 Jolamine

Hi to the Forum

28 Sep 2018 02:15 in response to Jolamine

Hi there

no worries at all and nothig to apolgise for.

I see you reply to so many posts and you are a gem taking the time for so many others.

I wish you all the very best as well

regards

ian