Obsessively scared

Hi Debbie and don't be sorry. We all live with the thought of recurrence and have to learn to manage it best we can. Three years down the line if I get a niggle in my throat or a pain in my jaw it can still shake me up a bit. I console myself with the fact that if you get past a year your chances are pretty good. That's what the stats show (they are useful sometimes) 

Once past that year most follow up appointments find nothing and even those that do are patient reported generally. There is a trial ongoing to PET patients at 1 year and leave them without frequent appointments b ut with immediate access to consultation if they need it. That's how confident clinicians are that treatment is effective.

I get sore throats when the weather changes. I've been checked twice out of sync and my oncologist tells me that is really common and I'm going to be prone to it. He gave me a prescription of Difflam but I'm terrible. I don't like masking symptoms. I'd rather make sure the soreness goes away which it always does.

Having rambled on about stats and stuff I can only say it does get better. Rather than being obsessed about looking in your throat all the time set aside a regular time for a thorough check over, and leave things alone in between. It's what I still do. I used to do it once a week but now it's once a month. I check my mouth and throat thoroughly with a torch and have a good feel around all my neck lymph nodes, not forgetting those at the back of your neck. Get to know what's normal for you. 

Yes we might well still have HPV in our cells or we might not. The fact that your body failed to oust an infection in one spot doesn't mean that it failed elsewhere. I don't have HPV in my cervix for example. 

Finally, 9 months is still early in the healing calendar. You've made huge inroads into your fitness and training but recovery from radiotherapy is a long long process. Improvements are expected up to two years and even now I still get them. so you see what you are feeling physically and mentally is normal. Try to chill. that one year anniversary is not far away and it's a huge milestone.

HI Debbie

Natural to feel apprehensive, but don't let the fear of cancer rule your life.  Be conscious of it and check and if in doubt speak to your clinical team.  I had operations on my tonsils, lymph nodes and tongue and even a year later my tongue can feel swollen and exhibit concerning traits.  No RT though.  I am slowly getting used to what is the new normal.

Mine did return (or at least was finally found) after some 18 months.  I actually did not know it was there despite the checks I did.  Keeping up with routine review appointments is vital as that was how mine was found.  16 months later I am now still living life to the max!

Hi Debbie

My motto is one life live it. As you know I’ve been riding my bike over in Spain since week 8 .yesterday I did 65 km first really warm day we’ve had so I took extra water my boots dry mouth spray hand bag size and off I went. As for Google stay well clear as Dani says once we hit the one year mark reoccurrence s are rare. We are monitored for 5 years. All I ever have done  is set uo a routine with hubby from the start he knows how my neck feels now once a month he stands behind me and checks it. I have a magnifying mirror and once a week I will give inside mouth a good look. I’m prone to ulcers in my tongue I bring aloclair bongela and gelclair out with me. Am 4 years post in August and happily living my life do not let cancer define you it’s a waste of a good life. 
Im lucky in the fact I don’t think about reoccurrence I never have done my oncologist basis he was looking to cure me and it would be the hardest things I E ever had to go through. He was right in both occasions. 
As for dry mouth even now I’m getting small improvements I don’t need as much water generally , only issues I have are spicy or fermented foods. 
get training for that marathon just be aware of your body and listen to it. Attend your appointments chase them up if need be I’m down to my lastb3 but have already been told no matter when if I feel anything wrong go back via hospital not g p.
Hazel xx

Hi Debbie. I think we all worry. I’m 16 months post-treatment today   (for tonsillectomy, neck dissection plus adjuvant chemoradiation) and the back of my mouth has never felt as though it has fully healed so I’ve learned not to worry - too much!  I say in my diary that if I worried about every change in my mouth I’d be constantly on tenterhooks as it changes as each day unfolds. I’ve therefore learned to judge progress by how it feels first thing, after my first cup of coffee. Thereafter, what with eating, drinking, singing, talking, yawning, coughing, shouting - (I’m a wedding celebrant, so lots of voice-raising) - etc my way through the day I’ve learned to ignore any changes. That said, all I need to do is maybe brush my teeth too hard or eat/drink something scalding hot and it can make it very sore again for a while. However, it is definitely still improving- albeit veeeerry sloooowly! 

I too have a nagging worry at the back of my mind that my cancer might return. But it’s only one of the worries in life and enjoying the good things without letting worries about something that probably won’t happen is very important.

To put it into context, one of my daughters has her home in Ukraine and was there as recently as last week. She’s just arrived safe and sound for a visit here.

My first grandchild will arrive soon after a pregnancy that hasn’t been plain sailing.

Bad things happen, good things happen. My philosophy is to enjoy the good things, not to worry too much about what might happen, and to deal with the lumps and bumps in life if/when they come.

Anyone can get ill, get cancer or have something bad happen. But in the meantime enjoy all the joys in life. In reality that’s what it’s like for everybody, even if actually having cancer does enhance our health worries.

Hi Debbie

It is so good to read you are making such a good recovery, so much so you can enjoy your fitness training and riding your bike, I am so glad you have resolved your trismus  with the aid of the therabite, as I know how much having trismus can hold you  back. Well done. You are doing really well.

I think it is natural to worry in such early days of recovery,  We cannot just switch off all what has happened to us, both emotionally and physically. This takes time and starts to get less as time goes on. You are still having scans and check ups so this should help reassure you. It is good to keep an eye on things yourself as well, but try not to let this overtake you. Like the others have advised if you have any concerns relay them back to your team. We probably all suffer with post op pain, but hopefully it gets less and less as time goes by. 

You do not sound ungrateful or moaning, just expressing how you feel and sharing this.  It helps to talk about these things after treatment has finished because the psychological part of healing is just as important. When you get anxious maybe try to relax and take a few breaths and replace the thought by how well you are doing and how far you have come since your diagnosis.

Best wishes for your triathlon and marathon.

Nicky

Hi Debbie

You sound as if you're doing brilliantly well physically so congratulations on your achievements so far.

I'm pretty sure you had robotic surgery same as me?   My throat is almost constantly sore and I live daily with cuts and bruises to my tongue as it must be hyper sensitive and slightly swollen plus I'm constantly injuring the inside of my mouth. 

Concern about the cancer returning is something I think most of us worry about at some point but reassurances at check ups plus regular checks performed personally do help put the mind at rest.  Knowing what feels "normal" for me now has also helped enormously.  I've had various extra checks done between regular appts when things havn't felt right so any time you feel something different just contact your team and they will check.

Try to enjoy all the things you can do Debbie.  Fly your bike to Majorca.   Worrying about something that might not happen and is beyond your control can only stop you living your life to the full. 

Linda x

Hi Linda

Yes both operations were done robotically, and yes it does feel constantly sore, or too big for my mouth.

I am going to check my mouth weekly or monthly instead of every day. The advice everyone has given me on here is fantastic, and it does put my mind at rest. No matter what the question someone knows the answer to it, or has been through it too.

Thank you for your reply xx

Debbie

Great. I’m glad you feel better about it. I always thought, Whst if I live another 20years ( I’m 71) ? How would it be if I had spent that 20 years blighted by my fear of recurrence. What a waste of a life! 

Absolutely Dani.  My thoughts exactly.

Linda x