I have "NET of Pancreatic Origin with metastases to Liver" diagnosed August/September 2020.
After five cycles of chemotherapy pills administered at home, I had to report chest pains when I went to collect the chemo for the 6th and final cycle. Needless to say, no more chemo!
After two follow up CT Scans which both showed that "everything was very stable" - whatever that means, but my wife and I assume it meant the cancer/tumour was no longer spreading, I was moved to a four monthly cycle of blood and CT Scan tests with a half-way telephone appointment.
I had the first of these CT Scans last week and the telephone appointment yesterday. Both my wife and I have been shocked by how stressful we've found that week. Today, neither of us has really been fit for anything. The thought of going through the same process every four months and having this stress is causing even more stress. We must find a way of coping!
Thinking that if the telephone appointment is changed to Outpatients then things have deteriorated and waiting for that letter or 'phone call......
For the first time, the call was from a Specialist Nurse and not an Oncologist. Ah! I've been downgraded (don't mean that in a derogatory way), so things must be OK. Breathe a bit easier! Questions - "How are your bowels?" "Coping, thanks." "Any more chest pains?" "Well, yes. Had bad RUQ pains all afternoon after the CT Scan. Um; Err. What about last week's scan?" "Oh. Everything still very stable". "Great. Thanks. That's nice to know. Can I ask about these pains I've started getting down my thighs?" "Sorry. Talk to your GP. Bye."
I'm sure the nurse has lots of these 'phone calls to make and a schedule to keep, but it would be nice to be told the scan results first before asking about my health. After all that's the major item of news we want to hear. It's really not enough to "know" (by reasoning) that everything must still be fine, and the last Oncologist I spoke to asked if I'd been getting pains elsewhere; I'd said not really because I was only getting the odd niggle!
Bit of a moan there, I'm afraid. Sorry. The main question is how to avoid getting really stressed again between scan and results in about four months time.
Thanks.
Hi WeDontByte
I think that everyone in the entire community will relate to your question about how to avoid getting stressed between having a scan and waiting for the results. There is even a common tern for it 'scanxiety'
I don't have scans but I do have three monthly check-ups and all I can really say is that I found it got easier as time went by and nothing new was found.
You might find The Stress and Anxiety Companion app helpful and more information, including how to download it, can be found by clicking on the link I've created. There's also the My Possible Self app which teaches you coping techniques to deal with stress and anxiety. I haven't used either of these myself but Macmillan has provided the information on their site.
Macmillan, through Bupa, are currently offering up to 6 free counselling sessions for people struggling emotionally because of cancer. Again clicking on the link will give you more information.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
