The fear of cancer / tumour returning

[samex]

Hi Sally, I had bowel cancer diagnosed in August 2007, 6 months of chemo after surgery. Initially I had 3 monthly blood tests. These have stretched to 6 monthly and annual CT scans. The blood tests looked for bowel cancer markers. I also have an annual colonoscopy. My understanding is that this pattern will continue for anther 3 years. Not sure what happens after that. Be assured that you certainly are not alone in the fear department!! Samex

[Sailor]

Hi Sally It all depends on your type of cancer, whether or not it has markers for it that can be detected in the blood, whether or not the clinical evidence says that there is little chance of it returning. In my case I have an aggressive cancer, it keeps recurring and there is a blood marker for it, so I am fairly closely monitored. Your situation is quite different. That doesn't say that you live without the fear of it coming back - that is with everyone of us. The shadow is always there in that room of the house of our mind. It may be a monster trying to break out and all we seem to be doing is hammering planks over the doorway. It may just be something small in a small room and we spend most of the time in the sunlit rooms. But it is there all the time and each one of us has to find a way of living with it - it will be our unique way. If you are worried about being checked - go back to your treating team and ask them. Don't be afraid to go and get some counselling - you can now get in of medicare and your GP can arrange it. Don't be afraid of using the cancer helpline 131120, it is not just for newly diagnosed people. Good luck Sailor But the sea is a mighty soul, forever moaning of some great, unshareable sorrow, which shuts it up into itself for all eternity. Lucy Laud Montgomery, Anne’s House of Dreams

[charmaine]

Hey all, Well tomorrow (or should i say today!!!) is my last chemo. I still have radiation to go in the new year though. But as things come closer to the end i get more and more nervous and fall apart. I never imagined that my life would be like this. I had it all planned i was the organised one with everything mapped out. I have HL and have gone through 4 rounds of chemo. As much as i want treatment to finish, at the same time i dont. When you are having treatment you know the cancer cant grow or come back. What do i do once it all ends?? How do you start again??? How do i start living again??? For the past 5 months cancer has been my life, its in my thoughts, my dreams, my actions, my conversations. It seems i have been existing while the world kept living.... I dont want it to continue to consume my life, but i dont want to just pretend it never happened. I am already so scared about relapse and i havent even finished treatment. Any advice????

[#4]

I hear you...On the outside I look like this cool composed woman who is strong willed and knows what she is doing. But on the inside I am screaming my head off. I too think exactly like you mentioned. You try not to focus on the cancer but it is hard to NOT think about it. I get busy with my life, family work but when everyone has gone to bed the monsters come out and all the self doubt rolls into my head. I imagine all the cancer cells just partying all over inside and no one notices because they are just doing it quietly. There is no pain so nothing to investigate, no lump so nothing to biopsy, no health complaints so no reason to be sent for an MRI "just in case" so my imagination runs rampart. I too would be very interested in others that have gone through this a long time ago what they did to get over this newness hump to go through even one day without thinking about it

[Sailor]

Hi Charmaine and Smilesonly Two issues here. For a while now you have been in a routine that involves going in for chemo and that is coming to an end, so it is a time of transition and transitions are uncomfortable for all of us. The second issue is the fear of the cancer returning - the shadow that lives with all of us. If you talk to people twenty years after successful treatment, they will say that it is still there. I watched an SBS insight program on cancer a couple of years ago and the former Australian cricketer Simon O'Donnell commented that there was never a day when he didn't think about his cancer. He called it the life sentence of cancer. I believe that was twenty years after treatment for Hodgkins lymphoma. But it doesn't have to dominate our lives, it can be confined to a very small area of our mind, and generally over time it will. To help to get to that stage it might be helpful to talk to someone about this. Use the cancer helpline 13 11 20. Talk to your treating team and ask to see a social worker or a psychologist. Talk to your GP and ask to arrange to see a psychologist under the medicare program. Believe me it helps. Cheers Sailor I keep sailing on in this middle passage. I am sailing into the wind and the dark. But I am doing my best to keep my boat steady and my sails full. Arthur Ashe

[Jules2]

Hiya everyone It does pass with time and i know that sounds like "oh yeah" but it really does. While you are waiting for it to lessen is the hard bit. I agree with sailor re contacting someone to help you out and the cancer council is a great place with lots of wonderful people and resources. Have a merry christmas Julie

[samex]

Hi guys - Charmaine and Smilesonly, Couldn't agree more with the above. I wish that I had contacted professional advice when I first finished treatment. I just thought I was weak and bonkers when life didn't return to normal immediately. Even nearly 2 years down the track I struggle at times. However, even though the shadow (as Sailor so effectively calls it) is in a smaller place than it was, my New Year's resolution is to see my GP and start some counselling. I have had a bad week of tears and not coping with the trivial and mundane tasks at all well - time for some help! BAck to your thoughts and away from mine - the thoughts become less invasive but the monsters do still pop up when you least expect it. My problem is not dealing with the diagnosis of someone else and the fear returns with a vengeance. I believe that you MUSt talk about it to someone who is willing to listen or you will go bonkers. This site has been great for me in this regard. I'm sure that it was Sailor who commented on another blog that we don't cope but we manage our living with cancer and when we are able to manage a little better then the gremlins become less invasive. On a personal note - I had a very impromptu trip to New York with a friend in October and the rushing around with that helped me to think that I can get on with some of the things in my life and that every minute is precious. Even the preparations were fun because it was different. Be kind to yourself and TALK!! S

[Teacher_Mum]

Lots of food for thought here - I have decided that if and when I die from this gynae or secondary tumour should it amount to that I will do it with my boots on. So tomorrow the kids and I will be going to Canberra to visit the Masterpieces from Paris exhibition - pop in to Southern NSW and have a gander at Mount Kosciuszko and catch up with old friends. In the process I have offended a few in law family members - bugger it, if I need to choose time wisely, ill do so with the people I like he he! So tell everyone Im on my way and who knows where the journey will lead but with the blue skies above us who could ask for more, hold me down, I cant wait!

[Jules2]

Hey teach! You and me both! Hope you have a fantastic time away and your trip sounds like its going to be particularly great. Oh and i keep forgetting to tell you and samex about a time when i got out of hospital. It was at my son's 21st and the young boy (15) from down the road was there. He commented to me that he was very sad when one of his teachers was diagnosed with cancer and he felt that way when he heard about me also. I thoght it was amazing that he bothered to say anything to me and the fact that he could articulate re his teacher too. :) Have fun teach. Julie

[samex]

Good to know that there are some sensitive souls out there! I had a beautiful card from my yr 9 class that I still have. Gives you hope. Enjoy the trip to Canberra. I'm hoping to get there these hols as well. S