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The anxiety of being off chemo

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

Its been just over 4 months since I finished my 2nd round of chemo for my PPC. I have enjoyed my hair growing back and the general feeling of being normal again as I am free from the treatment. However, like most people I do feel a little anxious whilst being free from chemo - I mean, the cancer has the freedom now to rise up again, doesn't it?

So I am trying to enjoy this chemo break, whilst pulling at my 1cm length hair in order to make it grow quicker. Occasionally I test my breathing (my breathing has always been my biggest problem as I was diagnosed with plueral effusion - fluid around my lungs) by listening to see if I can hear the grating sound that indicates the fluid is back. I also run and swim and I am constantly aware that my breathing is not keeping up with my activity level. Another trick I have become very good at is pressing and proding my abdomen to see if I have ascites. Not sure why I would consider this would happen as it never has before. But you see I have gained weight and sometimes I know it is FAT around my middle and other times I am convinced I have ascites.

A few weeks ago I had managed to convince myself I had the fluid back. Never mind the fact I can breathe well, I am sure I can feel a tightening and hear a grating sound in the area of my lungs. I had been running and pushed myself too far, so much so I had a few moments of panicky breathing. The following few days I am sure I had bruised my lungs and diaphram. I had discomfort whenever I took deep breaths.

My oncologist did not seem interested in my vague issues so I visited my GP (Primary Care doctor) He ordered a chest x-ray & an abdo ultrsound.

The results from my chest x-ray show a small amount of fluid around my lungs and an enlarged heart. I believe the fluid is unchanged from November 2010, but my GP can't compare it to my last chest x-ray because he doesn't have it ----- my oncologist has it. My enlarged heart - well I am to have further investigations soon.

I think the point I have been trying to make is this; it is very scary once the treatment is finished as no one is monitoring you and taking care the cancer is not coming back. As soon as I knew I would be having further tests and investigations my anxiety disappeared and I felt much calmer.

Sorry this is such a lengthy message, I just needed to put it all down in writing to help me understand the way my crazy mind works !!!!!!

Tina xx

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Tina: I know exactly what you mean. After my first round of chemo that ended in February and when things looked good, my oncologist said, well, he hoped he wouldn't have to see me again and good luck! My heart just stopped because I had the same feeling - off treatment, who would be monitoring me? my family doctor? my surgeon? and what would that monitoring entail? At least on chemo you are checked regularly. But then the last MRI showed that the peritoneum nodules were still really there so of course I was back in the oncologist's office. Strangely I felt grateful!!!!! I would rather not have had to go back on chemo but I was getting checked regularly. It is daft I know!
Cheryl

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

Hi Tina, and Cheryl too,

I just finished writing a long reply but when I sent it I got a server error message and it didn't get through. Very frustrating.

I totally agree that we need support and reassurance when we are off chemo. Tina, the way you describe the sounds from your chest, it seems to be when you breath out. I was told that my ascites - 10 litres to start with - was making my lungs not be able to expand, so I had a cough with my incoming breath. Now, when I'm unsure if the extra weight is increasing size or ascites, I breathe in very deeply. If that doesn't cause me to cough and isn't hard to do, then I know it's not ascites. Besides, with compulsive eating, my weight it jumping up *very* much and I believe it poses more risk to my health at this time than the cancer. I do understand that for you at present, breathing in deeply might cause you pain because you've been overworking your body, but I find it's the cough that indicates the ascites, not the pain. But maybe my experience isn't the only way of knowing that.

Your having fluid on the lung is a concern to me. Can't you have your GP send a copy of his X-Ray to the oncologist so he can compare them? I too have an enlarged heart. I was told that years ago, long before getting cancer. Never seems to have bothered me.

Cheryl, I can understand your feeling better gong back under the oncologist. I'm surprised that he never checked on you regularly while you were off chemo. Perhaps if you expressed your concern, that you would be reassured by staying in touch with him and having, at the very least, your CA125 measured regularly, he might respond more sensitively.

I hope so!

Love to you both,

AussieMaddie

xxxx

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi AussieMaddie: Luckily I never actually came off chemo for much time - just a month before a new chemo regime was put in place. So it was a short "parting"! Unfortunately misinterpretations by radiologists do occur but luckily in my case the analysis was redone (although I had hoped for no more tumours!). I have had both Ca-19 and CA125 measured and both were well within normal ranges. I haven't had a CEA measurement done which would likely be more useful to me as my cancer is gastro-intestinal rather than ovarian or primary.
Cheryl

stella65
Posts: 152
Joined: Feb 2011

I know exactly what you mean Tina, all the time mum was on chemo I wanted it to come to an end as she was suffering so badly with it, as soon as she had had her last one I started panicking, as you say you feel there is nothing to hold the cancer back and it can do as it pleases! For me on the positive side now mum has finished I don't have the constant upset of seeing her having such a bad time but I do know for her, everytime she has a tummy pain ( she does quite often ) she worries it is the big C building again! I hope you can enjoy life despite your concerns and I hope your further investigations help to reassure you X

wanttogetwellsoon
Posts: 147
Joined: Apr 2011

Tina...
I understand what you mean about not being monitored. When I rang up the MacMillan triage team at the hospital, I told them that I wasn't sure if I had ascites or I was just putting on weight. I was very hungry all the time after I was discharged from hospital, but I seem to have stopped treating myself and binging. Some of the women I have chemo with have told me that their appetites increased too so whether the appetite thing is to do with getting comfort and actually connected to the disease, I don't know.

I was very scared just thinking of the ascites because I had three and a half litres drained in March and had been living like that for some time. Because I have so many adhesions, the fluid just being there caused pain and discomfort not to mention the bowel blockages I've had. (Actually, I don't know whether the fluid causes blockages at all... I just presumed that!). So, yes, I was frightened especially when I was told that it's best to drain the fluid when the abdomen feels like a drum.

The MacMillan nurse explained that when we come across difficulties, we take up previous experiences in what they call 'patterning'. So, if there have been difficulties in the past,we're more likely to get anxious than if it had never happened before. Plus, it's a real thing that can happen to us again hence the anxiety of wondering whether it's going to flare again.

I didn't know that you were having heart tests. I hope that it all settles down quickly for you. :)

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

Tina ...I have to laugh...I pull at my hair also to make it grow! Isn't that funny?!
I also have "separation anxiety" from the structured life of a chemo patient. I felt so "cared for" and protected.. Thank God for those nurses and doctors!
And I am also starved most of the time and putting on weight! I just cant get over the fact that I am actually hungry! after so many months of not being able to think about food. I do believe it is all good though! We have much to be thankful for if this is all we have to worry about! Hugs to all!

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