Forum Discussion
3 types of cancer, how do I not live in fear?
I had Hodgkin's Lymphoma 23 years ago. Was successfully treated with radiation therapy +surgery. 10years later they confirmed I had what is now considered an overdose of radiation (standard amount at the time). It caused a chronic thyroid condition, and receding gums, half my teeth fell out... healthy teeth :'( . 21 years after the radiation, I was diagnosed with invasive breast cancer and Padgets disease, both diseases in both breasts and both nipples, caused by the radiation therapy. (they NO LONGER administer such large doses, they are more educated in radiation therapy now). Chemo, full mastectomy, and tram flap reconstruction later, now on tamoxifen. I feel no anger that the radiation has had such lasting effects, I have lived, loved, become a parent and for the most part I have been healthy for decades. The doctors saved my life. But I fear recurrence, and mostly I fear more long term complications. I had the least amount of chemo possible and no more radiation as they now fear my heart may not stand too much more cancer treatments. I fear leukemia etc as my life has proven you CAN get secondary cancers from treatment. I live in limbo. If I have thrush... the docs send me for an internal ultrasound, if I have constipation...they order a colonoscopy, their caution keeps me in this world of fear.
I try not to be scared, but it is the first thing that enters my head every morning when I wake.
I try not to be scared, but it is the first thing that enters my head every morning when I wake.
27 Replies
- Do what is best for YOU, @Delos. xx
If they haven't been 'through it' themselves, they have no idea how a simple suggestion for a biopsy or further test may affect us - automatically, we are assuming 'the worst' ...... when hopefully, it is for the best!
take care, all the best for 2019 xx - Agreed iserbrown
When you are on meds for prevention, it does not feel like remission at all.
I was told i would be on Tamoxifen (or similar)forever as i am so high risk of recurrance, (my BC and Padgets came from radiation, not genetics).
As my gums and jaw have aged to the point of my healthy teeth falling out decades too early, and my thyroid function fluctuates due to the radiation damage, i will live the rest of my life waiting for the boot to fall. It never really goes away.
Most days i am ok, its not the only thing i think of and it does not stop me living my life, its just that when the doctors are over cautious it is hard to not panic instantly. - How interesting @Delos! I hope you love it. K xox
- I'm of the view unless they have experienced it they just don't get it! I was asked yesterday if I was in remission - my thought was are we ever in remission whilst we are on treatment for 10 years!
They can give you coping mechanisms which is wonderful, however, it is the nattering with those that are in it or been there that makes all the difference!
Disappointing that the reason you went to the counsellor did not meet expectations!
Best wishes with your TAFE course
Take care - How annoying @Delos. False advertising, grrr.
Fantastic news about the TAFE course. What are you studying? - Went to the counceller, who was supposed to be an expert on long term affects and multiple cancer survivors, she was not an expert on these things. She had worked with cancer patients for a few years but was not especially knowledgable with multiple cancers. Was very disappointed. But i started a tafe course instead (as months of crosswords seems to have had a clearing affect on my mind).
Am striving forwatd again.
Love to you all XxX - I understand a little @Delos as I am reimission from two cancers but they are unrelated - cervical cancer as well as breast cancer.
I has a Lletz procedure 5 years ago for cervical cancer but have a persistent hpv infection so am subject to annual monitoring. I have a wonderful gynae - a very down to earth lady who saw me thru a twin pregnancy at 47.Am anxious every year when my next colposcopy is due plus am worried it won’t be long before my gynae retires.
I also had lobular breast cancer 2/17.I had a lumpectomy/reexcision followed by radiation and now hormone therapy.My next check is soon and yes will be anxious waiting for results.
I have also had major eye surgery for glaucoma this year which was worrying as I lost sight in one eye for a while.And because of impending hormone therapy and Prolia elected to have dental implants beforehand four weeks after radiation ended.
Yes. I have been low occasionally esp last year but seem to be able to pick myself up - occasionally with help.The Cancer Council have a Cancer Connect service which saved my life at a low point linking you by phone with someone who has undergone similar cancer.I found this blog and have found great support and advice.Other useful things were a Encore a free hydrotherapy program for breast cancer people and joining temporarily a local breast cancer support group.
I also exercise a bit which amongst other things helps how I feel .I walk every day for an hour with earplugs attached to my phone listening to music .Also I joined a gentle exercise class which does light weights twice per week - it also gets me out of the house enjoying the company of others.
For me talking to others and seeing others in my community who I know are undergoing cancer treatment but are living their lives - out shopping , having coffee/lunch etc - has been the turning point for me.At one point like you I felt I had no life but now I do not believe so.
Hope this helps a little XO - Thank you all.
Feeling a lot calmer now than I was before I connected with you all.
My brain was very foggy and my energy levels were very low.
I have started exercising again and have been doing a lot of crosswords and word puzzles, this has definitely helped me. I am thinking clearer and feel better all round. Start the councilling next month too. I hope you are all feeling OK today, sending you all some positive thoughts and strength. (and my thanks) - Hi @Delos, I’ve only just caught up with your post. I’m a fellow traveller on the multiple cancer road. I was treated with chemotherapy and radiation for neuroblastoma as a six month old; 44 years later (in 2017), along came breast cancer.
The side effects of my original treatment were stunted growth and severe spinal/chest deformity with related mobility problems. I was told breast cancer was a risk but was fairly blasé about it. After my recent diagnosis, I’ve started attending a long term follow up clinic for cancer survivors, which will monitor my health alongside breast surgeon, oncologist etc. The radiation oncologist I met at my first visit to the clinic said that breast cancer wasn’t a direct result of my childhood treatment but probably triggered cancer I would have got in 20 years’ time anyway.
One of the best things I did during my treatment was to see a psychologist for the first time. No surprise that I needed some emotional support for my new diagnosis but it also helped me deal with the trauma of my childhood experiences.
I’m a positive person despite everything and there’s no doubt that illness and disability have left me pretty bulletproof. I live on my own, have a well paying full-time job and find joy in the every day.
Like most here I live with the possibility of recurrence and whatever new cancer might pop up in the future (we are quite a cancer-y family!). I’m doing everything I can to stay well and control the risks through diet and exercise but also feeding my soul through travel and new cultural experiences.
I’m not able to offer you any answers to your worry, stress and anger but hopefully my story can show there’s a fine life to be lived beyond the fear and pain. I wish you the very best in all things, good health and happiness.
Dogstarx
