Good evening everyone,
As the title suggests, i am in that waiting time.
Finished, in order, chemotherapy, radiotherapy and brachytherapy between Nov last year and New Year for cervical cancer stage 2b.
I'm coping, sort of, with the physical side effects - mostly bowel disruption, hair thinning and lack of energy. Consultant keeps reassuring me it's still 'early days' in recovery.
But I'm not coping at all well with the mental/emotional side. This seems to be getting worse the closer i get to finding out what's changed and what has to happen next.
I can't bear all the tv charity ads showing people/animals in distress, can't watch the funeral plan ads, scenes in programs showing love, honour, bravery, altruism, the ads for the (wonderful) cancer organisations' it all makes me cry.
i'm scared. I don't want to have to go through all the treatment again (but of course i will if it is what has to happen) and have worse damage to bowels etc.
I hate the thought of this thing trying to kill me quietly, insidiously, painlessly.
I'm scared of dying, but then i won't know anything so that doesn't really matter.
I feel i 'should' be able to do more, but sometimes just putting the washing up in a neater pile is as much housework i can do.
Thanks for reading this, hope it hasn't made anyone feel worse themselves. I just had to 'tell someone'
UPDATE
i now have a follow up appointment booked in June to discuss the scan results, but the scans themselves have not yet been arranged and are due in may.
i checked with ‘my’ team and have been assured an mri will be done in may but I’m really anxious to get a date.
intellectually I know there are really only two possibilities: the tumour has gone and I don’t need more treatment, or it’s still there and I do need more treatment. However it’s not so simple is it? So many ‘and so what now’ questions arise even for the ‘tumour gone’ result.
but if I need more treatment, is it all the same again? I feel I couldn’t cope, physically or emotionally, but of course I WOULD cope.
anyway that’s where I am. Worrying weeping waiting and knowing worrying doesn’t help.
Hi greenlady13
Waiting to find out the results from treatment was a tough time for me mentally I have to say. Treatment is so intense(I was stage 2b and had chemoradiation) and I felt quite vulnerable at the end of it. All the appointments finished and there was just a sudden falling of a cliff feeling when the “safety” net of daily appointments was done.
Suddenly it was like that comfort had been removed and that felt quite scary. I finished my treatment on Christmas Eve in 2018 and felt exhausted by it all. Then I waited for my mri to confirm how treatment had gone and had a long wait for the results. I finally had those at the beginning of April 2019, and was told I’d had a complete response and was NED (no evidence of disease).
I found I wasn’t quite as ecstatic as I expected to feel, but I know from reading other stories that’s quite a common feeling. There was still the underlying fear it could come back, and it took time to feel better both physically and emotionally. I was unlucky in that my cancer did recur later in 2019, and it was like being hit with a sledge hammer all over again. However, many people will never have a recurrence. I didn’t have to go through the same treatment again, as you can’t normally have radiotherapy in the same area and I’d already had 32 sessions of it. But I was able to have surgery, and I’m still here.
However, now, more than 6 years later, I feel very different. Those adverts on tv which I couldn’t bear to see don’t bother me now. I have a funeral plan just because that’s sensible at my age, but I don’t think about it. I don’t dwell on thoughts of a further recurrence because that would be a waste of my time and energy and I prefer to be happy to be alive and living well. Feeling like that didn’t happen overnight, but it came with time.
Time helps-the longer you go without a recurrence the more the chance of it happening reduces, and I regained more confidence as time passed. I found that no amount of worrying would be helpful. It’s like sitting in a rocking chair and moving but it doesn’t get you anywhere. But it definitely took time to be able to feel that way, and not have cancer in my head all the time.
I hope that you will be able to feel differently about things as time goes on, and that good results at check ups and scans will help with that. But for now, you are still recovering from what has been a trauma to your body. Don’t beat yourself up for not doing “enough”. I haven’t done any ironing for 6 years, but so what? I have other reasons, not cancer, that severely limit what I can do in a day..and that’s ok. I do what I can and things can wait for another day.
Look after yourself, and take care, and I hope that things go well when you get your scan.
Sarah xx
Many people in the forum talk about “scanxiety” and it’s very real. I read so many posts from others in all different groups whose anxiety ramps up when a scan is due. Just like the others, I had this every time I faced a scan of any sort and I’ve had many over the years-from ultrasound to mri scans, ct scans, and a petscan.
The fear is of course bad news. I confess I’ve had a mixture of good and bad news, but overwhelmingly the number of good news scans has been more for me than any bad news. Once they’re done, you can relax again, but the waiting is tough. However, it’s better to get checked and get reassurance.
Remember too that the treatment we go through is usually very effective for our cancer. And if there are any issues, then scanning can help identify things early so they can be dealt with.
You should be monitored for a number of years and your team will always be there to help you. My consultant/surgeon still wants to keep in touch with me more than 6 years after my surgery-just an annual phone call, but I know I can contact her any time if I have any concerns and she will see me in person.
Sarah xx
Hi again greenlady13
What I can say after having had a recurrence myself is that you wouldn’t get exactly the same treatment again.
This is because you cannot have more radiotherapy to the same area-you can only have this done once, and you have had this already.
However, there will be other options if it’s found you do have a recurrence, and you may have chemo for example, but perhaps a different combination to what you’ve had before.
However, it’s too early really to speculate, as you need to have the scan done but I know it’s so hard waiting for this and the results. Try to think positively that the scan will give you a good result-there are more people in the group who have a successful result from treatment than who have a recurrence.
Sarah xx
Hi LouiseM and welcome to the group.
It’s such a difficult time for you waiting to have your scan, but it’s far better to know if there’s an issue that needs to be treated as this can be started quickly.
Often things are identified which may need further investigation, but please try not to let your mind go to the worst case scenario-it might be inflammation or something which isn’t cancer. I don’t know from your post what treatment you’ve had, but radiotherapy can cause damage and scarring so if you’ve been through radiotherapy, it might be damage from this.
Please speak up if you feel you need help to deal with your anxiety in the meantime. Your gp can help with this, and helped me.
It’s natural to be scared-I understand this having been through it-but if you’ve can manage to get a handle on the anxiety it may make things a little easier for you to cope.
Sarah xx
Thank you Sarah H
i am trying to think it’s all over and done 
I really hope it is for you, at least in the physical sense. The pyschological effects of our cancer and treatment can last much longer than physical recovery takes, but there is help out there for this too I’d recommend taking advantage of. I’ve learnt over the years it’s not a sign of weakness to ask for help-it’s all part of the healing process.
Sarah xx
