Fears - cancer-related fears and what to do about them

[Terrafirma]

Are cancer-related fears making you feel apprehensive about moving forward with your life, disrupting your sleep, making you irritable and difficult to get on with (or more irritable and difficult to get on with than usual lol), causing problems in relationships and family, or maybe even bringing your life to a virtual standstill? Here's a thread for general or specific discussions of fears and sharing support and ideas for reducing the influence of fears on our lives. And of course (very overused expression so why am I using it) it goes without saying so why am I saying it that it's entirely appropriate to open individual threads to discuss fears you may be experiencing. "Opportunities and fears". How well I know that duality! I'm sure you've all wrestled with it too on many occasions. Fears are inevitable for those who love life, have desires, longings, unfulfilled ambitions, dreams. Young adults are right in the middle of this territory with so much of life still ahead. I started a similar thread to this one elsewhere on the internet this morning and thought it would be a good idea to start one here as well in this home-grown Young Aussie community forum :) Cheers, Ed.

[#2]

Hi Ed, I was completely frozen for about 3 days after I was diagnosed. Then the adrenalin kicked in which saw me through the horrible surgery and then the gruelling treaments that followed. The actual fear of losing my life did not come until after everything was finished when I had a chance to really think about what had happened and what the outcome could be. Everyone is different and has their own kind of 'reflex' actions and way of doing things. But the fear for me does not seem to get easier just maybe easier to live with. Its something that can not be explained to someone who does not live with the threat of an illness like cancer. Sometimes the feeling can be overwhelming and I have days where I just wake up in a bad mood and cant explain why. Butterfly

[#3]

Hi Butterfly, I was only diagnosed 5 months ago, so I think coming to terms with living with cancer is still a daily issue for me. From the day of diagnosis to going into hospital was only a week and a half (and I know that's a comparatively long period for many). But it felt like my body was immediately taken over and put into through this process...while my mind and emotions were left behind and didn't get the opportunity to even begin to catch up until many weeks later. To be honest, in many respects I'm grateful for the cancer. It's shaken lose any despondency I might have had in my life before. The thought that I might not get to live as long as I had expected, or would like...still hits me pretty often. But for now, I'm just taking things one day at a time. Tamara

[#4]

Hi Tamara, I know exactly what you mean about the time frame to actually digest the whole thing. I was in hospital for the surgery around 12 days after the diagnosis & I remember asking my oncologist cant we delay it just a week or so? then I can have more time to deal with it & his answer was of course a big fat no. He said put it this way, I have made the space for you on my schedule it needs to be done asap!! From there the exact same thing happened to me, my emotions & mind didnt have time to catch up until much later on after the radiation & chemo and even then it was probably 12 months before it really hit me. I think they call it the survival instinct which up till now I didnt understand but I guess it explains that process of pushing things aside till later on when its safe to deal with it. I know you have only just had your surgery, are you recovering okay? Do you find the regular hospital check ups and everything hard to deal with? That always drags up the stress for me. But I know being over 2 years now things are looking good but Im still afraid to be overly excited that 'it' might be gone for good. Butterfly

[Terrafirma]

I'm sure many young adults who've been diagnosed with cancer will emphasise with the beautifully expressed views by Travis, Asha and Lacy in this video http://www.youngadultcancer.ca/wegetit/watch/disintrajectorization/ just published on the Young Adult Cancer Canada website http://www.youngadultcancer.ca Cheers, Ed.

[christine89]

Ive found a sense of panic has settled in my stomach recently, Ive never before really thought about death (I'm 20), and it's pretty hard to deal with, when all of a sudden its thrown in your face. One thing I very strongly suggest for everyone who has fears and anxieties brought up by this disease is: DON'T SEARCH YOUR ILLNESS TOO THOROUGHLY ON THE NET AND NEVER LOOK AT STATISTICS!!! I found myself doing exactly this a couple of weeks ago... There are some things I would very much like not to know, but it's hard to wipe your memory of something like this. I asked my dr about some of the scary statistics I came across, and basically he said that often these resources were very old, and are taken from a large variety of people; different ages, different states of health, who are undergoing different treatments etc. Basically he told me that statistics cant really give a good indication of how things are going to go. I would seriously recommend to anyone who is curious to ask your doctor, and stay away from google. Cheers, Christine

[flight]

Hi, It is reassuring to know that other people feel scared sometimes too. I feel less alone and less neurotic about that. I am so thankful when other people speak so honestly about how they feel because it makes me realise I am not the only person who feels like this. I have been having to learn to live with "the fear" a lot lately. Last year I went into several of my routine check ups thinking that everything is going to be ok (I have had chemo and radiotherapy for hodgkin's lymphoma). I feel ok so these test results will be ok. It is frightening to get test results back and have them find "something that we just need to keep an eye on" or they find something and say "you'll probably need surgery for this". I had this happen several times last year. As well as this I also had a lesion removed from my arm in 2007. I thought that everything was going to be ok. It was the first doctors appointment where I didn't feel anxious about it being cancer. But then they diagnosed this lesion as a melanoma. But it was absolutely frightening to be told that I had melanoma and even more so when the surgeon said "There's not much we can do for melanomas that have spread"(thankfully a second opinion from another pathologist found that it was in fact a nuerothekeoma which is a bening tumour). A couple of months ago I developed nightsweats.I had blood tests and a PET scan which were all normal (which is good). But I have continued to experience nightsweats and I feel that these are getting worse. So at the moment I am having to wait and see. Through all of these experiences I am having to learn to live with the anxiety, fear and uncertainty. My normal everyday life does not stop just because these health issues are occurring. Sometimes it is not easy to keep going and to keep juggling the normal everyday life with these fears and doctors appointments. I am slowly learning what supports work well for me during these times. Here is a list of what I am finding helpful: attending the lymphoma support group, becoming involved with this website and the support group on this web site, having a supportive GP who is good at listening to my concerns and will do a blood test when I am being a worry wort, telephoning and speaking to the clinical nurse consultant at my treating hospital, finding a supportive psychologist who is a good listener but who can offer useful strategies for managing anxiety and depression, having lovely friends and family to talk to and just hang out with (particularly on the bad days), journal writing, patting a dog, cat or horse, exercising and relaxation. I think the most important one is taking care of and being kind to myself during the difficult times. When I feel scared or anxious I try to accept the presence of these feelings; that it is normal to feel like this during these times. I remind myself that these feelings will pass. Whatever else I am facing at the time will pass too. I am working very hard not to predict the future (worrying about worse case scenario, I really don't know what the future holds) or mind reading (worrying that the doctor is going to tell me bad news, afterall I really don't know what other poeole are thinking). I am sure there are more but these were the ones that come to mind. What do others find useful at these times?

[Jules2]

@ christine ... statistics are just numbers and as you have found out are not necessarily a good indication at all. Its tough when we feel frightened and am sure it happens to us all. In fact it happened to me this morning and when i got home i called my oncology coordinator nurse and spoke to her about my fears and it was all good. Hope i am making sense cos am way tired tonight, just got back from travelling to get mask made and scan.

[Traveller_In_Wa]

Hey all, It's been about 4 months since I've finished treatment for Hodgkins Lymphoma, and I think the fear of it all is only just starting to take effect. When I was in treatment, there was no time to worry about the prospect of dying. It was just go to this appointment, have chemo, recover, another apointment, chemo again...there wasn't anytime to consider the enormity of what was happening, I just had the energy to take this thing day by day. But now, having finished treatment and slowly getting back on track, I find myself worrying a lot. I even worry that I'm worrying so much! Which is silly, but given the experience we've all gone through, it's understandable. I'm planning a trip around the world, which I've already had to put off due to getting sick, and worry about that. I know what you mean about having a supportive phsycologist flight, some days they are a god sent! Also I talk to my local cancer council representative, for more 'informal' sessions. It's lovely to talk to someone who has an understanding in what you going through. But another thing I worry about is finding my place again. I was 20 when diagnosed, living independantly, had a good, well paying job I enjoyed, not a care in the world really other than paying my rent on time. I hate feeling so lost now, and as I get better, it shocks me how much I've changed. I used to be a very social person, now I dont want to see people at all. That went with the job I was doing, now I couldn't think of anything worse. And I've also realised I've gone completely off topic, sorry, guess a vent was needed... I guess what I'm saying is that the fear is not just about the physical part for me, but the emotional too. Like I'm struggling to define myself again. Do others feel that? I'm not the best at explaining myself....

[christine89]

Traveller in waiting, You are definitely not the only person who is having troubles finding their 'place' again. I was in the same boat as you; four months ago I was very social, happy, independent, doing well at uni, had no real care in the world. Until I had a seizure and some lady told me I have a brain tumour =(. I feel like in the past few months Ive become this whole other person - I had to defer uni, I cant work as much, I cant go out with my friends as much, Ive lost basically all my independence, and I spend most of my time being scared, anxious and sad. It's a very lonely feeling when standing your in a room full of people but you don't really know how to relate with them anymore. I'm 20 and though my friends have been more than amazing to help me through this, I still feel isolated and separate from them. Death isn't usually a major concern for most 20 year olds, so it's hard for them to understand my anxiety. My experiences have changed the way I think, how I relate to people and the things I value in life. I think it's inevitable to feel panic, fear, and ultimately 'changed'. Lets just say we've been enlightened and are wiser because of it 😛 Jules, you are too right, statistics are simply numbers. I won't be looking around for them again!