Always worried

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Hi, First time on this site. Have been trying to pretend it all never happened and not wanting to face it. I had 6 weeks in hospital last year with radiotherapy and chemo for cancer in one of my tonsils. I couldn't eat for weeks and lost alot of weight. I've had the all clear for a year now but still have symptoms. Stiffness in my neck, difficulty swollowing food without water, dry mouth (although it's getting better) and tiredness. I actually feel more stressed about it all now than I did when going through the treatment. I worry that it could come back and it stops me enjoying life in case it's all taken away from me, if that makes any sense. Friends say I'm looking well and I tell them I'm feeling much better but this feeling of it all happening and not being able to handle it scares me.

  • Hi Flowerpot

    Welcome to the forum. What you are feeling is very normal. You have been through a very hard time and although physically we improve emotionally it takes much longer. I still have symptoms after my cancer treatment although not the same cancer as yours, mine was jaw cancer. It varies for everyone and some have virtually no symptoms and others have ongoing ones.  Worry about the cancer returning is also something that most of us have. It does recede over time but is always in the back of your mind especially if there are some changes in your mouth. I have gone to my consultant a couple of times over some changes and he has reassured me each time that all is well. I have had 2 more occurrences since my first diagnosis in 2013 and it is amazing the strength you find to face it. 10 years later I am still going strong and enjoying my life. I decided that I had been give another chance at life and I did not want to waste it living in fear. I decided to leave the worrying to my consultant who I see every 3 months. I have found being involved in meaningful activities really helps and takes my mind well away from worrying. I enjoy lap swimming and volunteering at my local library amongst other things as I am now retired. 

    There is a really good article called After Treatment Finishes - Then What? by Dr Peter Harvey that covers a lot of what you are feeling. You might find it helps.

    Sending you my best wishes

    Lyn

    Sophie66

  • Hi Flowerpot.  I know exactly what you mean about always worrying about cancer returning.  I myself have had two Malignant Melanomas and now I have cancer in my tonsil and lymph node(s) which will have to be removed, and now I have a pea sized hard lump come up on the back of my neck and I am worried sick that it is another cancer!

    I try to hold on to the fact that they tell me I have caught it early and that the cure rate is very high (90%) and I try to hold on to that thought, but it is hard.  I think we all probably have it in the back of our minds, so I just try to keep busy.

    Take care.

    Hugs

    Hazel x

  • Hi, Flowerpot, welcome to the group. All of us on here know exactly how you feel and what thoughts you have, and most would say that they felt the same, it is normal after what we have to go through. It takes a long time to recover both physically and mentally. I will be 7 years post treatment this November, and I can still get myself in a panic over things. Stick with us, any worries or question just ask, someone will always answer if they can.

    Ray.

  • Stiffness in my neck, difficulty swollowing food without water, dry mouth (although it's getting better) and tiredness.

    Hi  

    Welcome from me too

    See if you can get some ongoing physio for your neck it really helps

    Can you chew gum? That is really good for getting your saliva going and for stimulating what ever salivary gland function you have left. Give acupuncture a go. There are two posts on it in my blog 

    Radiation fatigue can go on for a long time but do get your thyroid checked. RT can cause hypothyroidism which would make you tired.

    Do look at the Peter Harvey article sophie66 linked. I still look at it five years down the line

    The fear of recurrence is real and c an be overwhelming but it does get better....

    Best wishes

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hi Flowepot a warm welcome to the group x

    Im nearly 10mths post treatment and a Therapist but like everyone says the majority of us feel the same about reoccurrence and when you have issues due to the treatment it’s hard to be positive.

    This group are really great listeners and what makes it so special is we all belong to the same club , that nobody wanted to join so we have all experienced the intense fear and crippling anxiety.

    For some talking to Mcmillan or a Counsellor can be helpful for others this community gets them through.

    Its normal to feel a whole host of emotions but sometimes depression or anxiety can take over and a talk with your Gp may be needed and possibly medication for some.

    Debbie

  • Hi Flowerpot. I had radiation fatigue for a good year. I could control it by having quick 20 minute power naps whenever I needed one everyone got used to my 20 minute nap. The articleLynn   put on is a good article to read.
    Hold onto to the fact that our type of cancer as an extremely good cure rate and please don’t waste the rest of your life worrying about the what ifs You can’t control the what if  but you can control the what  now. My motto is one life just live it and I’m doing that I’m 6 years post treatment. 
    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

  • yes, I'm a little surprised at how long my fatigue is lasting.. I finished my treatment in late Feb and still run out of steam, and need a nap..

    Loz (61)

    Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive.. 

  • Hi Everyone for replying, bit teary now as I've tried to get on with life and I feel friends and family expect me to be back to normal now so I don't feel I can keep talking about how I feel. I had 6 members of my family come for a holiday (my sisters idea) but I just couldn't handle all the noise and having so many people in my home. (My sister who had looked after me for a couple of weeks when I came out of hospital) couldn't understand why I wasn't joining in alot of the plans, she kept asking what was wrong and I kept saying I'm really tired and don't have the energy. Sadly they all left earlier than planned saying I was making them feel unwelcome, which I said I hadn't meant too. I messaged my sister to tell her to look up about long term fatigue but I've not heard back from her in weeks now. I can't talk to my son about my health as he just panics then bombards me with links to video's about beating cancer, living healthy and alternative choices. So thank you for your support and telling me your stories too. xx

  • Thanks Dani, I'm hoping to go for a blood test tomorrow or next week due to this tiredness also bad cramps in the night, so will mention about the thyroid too.

  • Welcome to the forum.

    Whilst I'm much earlier into the journey than you I can totally relate to how you're feeling (my Mum came through breast cancer 15 years ago and still going strong, but I know every single new ache or pain she gets she worries that it's coming back).

    I have days where I feel nothing, and then there are days - like today for example - where I'm "aware" of a tight feeling in my neck, or something new wrong in my throat and my heart just sinks.

    Been assured though that these feelings are very normal, not least because - in my case at least - 3 months post treatment the radiation is still working away in me.

    Hope you find peace from the advice others have given, and are able to get back to enjoying life Slight smile