HPV throat cancer...

Hi

Its now 14 months since I finished very similar treatment for tonsil cancer and yet I remember the days surrounding my diagnosis as if it were  yesterday so I can really empathise with the shock you must have felt.

You will find this site incredibly comforting and informative and much less scary than Dr Google. What you will notice when you read through people's replies is how different we all are when it comes to our responses to treatment and therefore what one person found difficult to tolerate another sailed through. 

I think the way to use this site to its best advantage is to post a specific concern as it happens rather than try and absorb everything in one go. You'll find that you don't usually have to wait long before someone replies with really sound words of comfort and advice. One of the things I would say to you at this stage is that side effects don't tend to happen quickly and your team will be there to help you at each step of the way. That, combined with help from us " old timers" should get you through it...... Cos we've all come out the other end... A bit battered but here to tell the tale. 

The other way to use this site is to click on a persons name that you feel has a similar cancer or treatment plan to you and then click on the recent activity section on the left hand side of their profile. I used to trace people's posts back and take such comfort from how far they had come and they had frequently covered an issue that was worrying me. Of course....if you click on the Discussion box you will also be able to see topics that you feel relevant to you..

I hope you don't feel this reply is too vague and that it makes sense. 

Good luck starting out with your treatment. Please post anything on here...big or small....night or day....

Sending you a virtual hug.

Gill

Hi guerrera femenina

Sorry to hear about your diagnosis.  I had similar treatment to you in 2013.  You were asking how it makes you feel.  I think we all have very different experiences but the thing that stood out for me most was the tiredness.  It's good to read on the site about the experiences of others but don't forget that it won't all be relevant to your situation.  In the end I found it best not to think too much about possible side effects and to just deal with things if and when they happened. Most of what I read about never ended up happening to me.  

I got a lot of strength at the time from the people in this group who had already been through treatment. So I still pop back whenever I can to see if anyone needs any company on their journey, and there are many others who do the same.   

I hope I have translated your username correctly from what I remember of my Spanish lessons at school.  From what you have said I think you have chosen something that is very appropriate and definitely suits you well.  Best wishes for your treatment.  xx

Hi Gill

Thank you so much for taking the time to reply and for all the useful tips. 

I am so pleased I have found this site, as I have spent weeks looking at google and terrifying myself! I love reading about people's journeys, it's so positive and inspirational and has really helped me understand more about cancer and shown me that people do survive, and it can just be a chapter in your life...so thank you for sharing your journey, it really does help. 

I'm going to tackle the treatment one day at a time, and I will come back to you with any questions, if that's okay? 

Thank you again x

Thank you for taking the time to reply Margaret,

You are right, I will take the treatment one day at a time and try not to look in to what 'may' happen, as you said ...it may not! 

Thank you for sharing your experiences, I get a lot of strength hearing people's journeys, it really does help me so thank you. 

One thing I would like to ask...this feeding tube, I've had it in a week now and it gets very tight when I eat! I've been told by my cancer nurse that I must get my calories up over the next few weeks, so I'm trying my best. I still have the buttons, is this why it's so tight or will it loosen when they pop off? After I've eaten it gets very uncomfortable, is that normal? 

Thank you for noticing my username, It defines how I am feeling right now x

Hello guerrera femenina, good advice from the ladies . You have an excellent reasons for being strong and determined with being your children and husband. Im so pleased you have a peg  feeding tube fitted as it can be a godsend if your swallowing becomes a bit difficult , they are easy to use and yours will settle down once the area has healed up and you wont notice you have it fitted after a while . Good luck for next week but remember you will have good and bad days so do take each day as it comes . Take care .

                                                                                                Chris .x

Hi guerrera femenina

I think there are various types of feeding tubes but it sounds as if yours is similar to the one I had.  It was temporarily secured by a couple of buttons which I was told were in place with dissolvable stitches which would melt within 2 weeks.  I was aware of a tightness from them, especially after eating, and as the days went on the tightness got worse.  After 3 weeks the buttons still hadn't popped and the tightness had developed into what I can only describe as the sort of cramps you get with period pains.  A nurse was sent round to my house with a special pair of scissors and the minute she cut the stitches there was immediate relief.  In hindsight I wish I'd spoken up after the 2 weeks, so if your buttons haven't popped by then do let your nurse know.  xx

Hi 

I had tongue cancer which had spread to one lymph node so slightly different. But I was 38 at diagnosis and my children were then 9 and 6. 

The RT and chemo floored me by around week 4. I was travelling for around 2.5 hours every day for treatment so spent a lot of the rest of the day in bed. I was so tired I found it hard when the children wanted cuddles or to come in to talk to me. I would sleep a lot. My parents took over in terms of childcare completely and they went to their dad's most weekends to give my parents a break. I just felt I couldn't cope with them for a while as i was in pain and weak as couldnt take in much food (I didnt have a PEG). My son often snuck in and woke me up in the morning to say hello. But my daughter(6) was scared of all the meds I had to take so avoided me for a while, the nebuliser for the mucus she hated the most. That was really hard for me.  But roll forward nearly 3 months after treatment has ended and I am doing the majority of childcare again but still get help a couple of times a week and for some activities.  

It is hard going through the treatment with young children but you will come through it. 

I wish you all the best. Children are a great strength during treatment. X

Hi guerera femenina

I was diagnosed with and treated for a similar HPV+ cancer last year.

I found things were particularly difficult after the treatment and a fighting spirit helped then. Mainly, however, I found it was more a matter of perseverance, or endurance.

I didn't get fitted with a tube and had a lot of trouble getting calories in after treatment, though I don't regret not opting for a PEG.

You will likely have a very sore throat for quite some time....do take your painkillers. I found chemo bearable though very unpleasant - like being poisoned. I found the RT after-effects were far worse. It's a pretty rough road but you can travel it and learn much from the journey. I learnt that people are amazingly compassionate and helpful...I found it very humbling having thought myself so self-reliant and capable. All the best. Don't hesitate to post. I didn't join this forum til well after treatment but wish now that I had.

Hi guerrera femenina,

You have so many good responses already! Sorry that you are here though, doesn't discriminate does it, anyone can get cancer, cruddy that it had to be you.

I think that the first thing to say is, cancer isn't such a dark word anymore, not once you've had a personal experience with it. That was one of my first experiences and a life lesson. My husband was diagnosed with HOV left tonsil cancer Jan 6th 2016, he had 30RT and 6 Cisplaitin (Chemo). He is now in remission. He had the PEG fitted, although he kept eating pretty well right though, but liquidized food and little amounts, most went through the peg for a few weeks.

So advice on how he got through. Definitely state of mind, he had some dark days when he felt really grotty, he got an infection in week five which is just bad luck but very easy to get. On the back of that, listen to your team, they've seen too many of patients like you and know what they recommend as gospel. The treatment is tough to endure but you can and will get through it, but it is tough.

Load up on calories, the heavier you are going into the treatment the better, you will lose weight because you won't be eating the volume of food you do and type of food as the treatment progresses. Get some good recommended cream for the RT area to keep moist. The RT will give you burns, to what degree depends on your body, but it will get sore outside as much as inside.

The mask for RT, a lot of people say they don't like it because they feel to closed in, you've had three babies, breath through it, take a CD of music, ocne you're in and music is playing you'll be getting up and going, it's very quick.

Chemo, first session wasn't nice, only because you see for the first time all these patients having treatment and you suddenly feel like you are also ill. Thing is everything is going to be a first, so be strong and embrace what's happening, talk to your team when you go in, and to patients. Chemo can give you indigestion and hiccups, nausea, all of these can be fixed quickly, so tell your nurse as soon as you get side effects, but you may not. Fatigue is another side affect, can be totally dependent on you, but with three kids, try and make sure to plan help and support with family and friends, accept help, I was so grateful of friends and family who dropped round dinners, popped round to see my husband and I, took our minds off things.

Treats, have things to look forward to, for you and the family, treat yourself, gives you a little boost whilst you're working hard at getting better. We were planning our wedding, my husband was diagnosed after he proposed and we booked the wedding before we knew he had cancer, our team told us not to cancel and they'll get us there. We held them to their word and we flew out to Greece a few weeks after treatment. H had the PEG removed two days before we flew.

State of mind and keeping things light, we had an adult colouring book, with swear words, made us laugh, that was for chemo days, RT days were fairly quick and straight forward. I worked throughout, but my boss let me work from home mostly, so it was easy for me to take him to all his RT sessions and Chemo, appointments. Watched movies, had audio books, jigsaws were great as a family, we have two children, family and friends couldn't resist sitting with us and helping doing jigsaws. Keeping occupied and positive. 15 odd jigsaws later we donated them to charity afterwards.

Take care of you, post on here whenever you need to, we're all here to chat to when you need someone or have questions.

Hugs ... Sarah xx

Thank you Chris, the tube does cause me pain but I am glad I've had it done. 

Thank you for your comments, I really appreciate it x