Still waiting...

Hi , Welcome to the online community. I’m  over 5 years in from my diagnosis so I’ve had a lot of waiting for scan results in my time as I’m still on treatment but for a different cancer type than the bowel group I saw that you joined. You haven’t mentioned a biopsy or a cancer diagnosis but yet so I’m going to stick to my own experience. The time between scans and results has varied for me from 3 working days to 4 weeks, I’ve always been told approximately what the wait will be and appointments have been booked to feed back those results. This approach has been great for me because no matter how long the wait is, I can try and shelve the cancer thoughts until I know when I will get an answer. I’ve said try because at times it wasn’t easy but over those years I’ve had plenty of practise. 

When I was first ill after a few drs visits the last GP sent me to A&E and I was admitted into hospital where I stayed for a week and had a couple of scans the last one being to guide a biopsy. I was told it was possible lymphoma but not to google and told the results would be approx 2 weeks and that I’d be contacted with results in person, but as I had spoken to a Macmillan nurse every day while in hospital we decided together that a phone call would give me the news and I’d have some one with me for that news. The weeks seemed very long as did the next 2 weeks when I would go in for a face to face appointment to have a more detailed chat and to be told what action came next. I am hoping that you were given a contact number and that as you were given a date and that date has now passed, that you call and ask for an update of when you will hear something. I actually think it’s better to get any diagnosis news with the positive side of what happens next rather than some news and then the limbo of waiting again. 

I loved the way you were still being positive and showing gratitude for the NHS and the care that you have received. I always think it’s good to think of three things each day to feel good about and to not look to far ahead at the times when I’m facing uncertainty. I bet during lockdown you had some ways that you dealt with that period of change, and perhaps at other times when things have been uncertain like waiting for exam results. I think we all have our own go to ways of coping, like just keeping busy, how many times did you hear of people decluttering of getting on top of DIY jobs during lockdown. I went through my kitchen cupboards then stopped, and concentrated on things that would give me joy. For me that’s exercise or computer games for others it might be sewing or music. I have had a worry book where I can right my worry down, just getting it out of my head helped and to help shelve it as if I worried every day the worry was the same, and so I could cut down the length of time occupied by worry as I could just in a way tick it off and not do round in a worry circle. My husband used a mindfulness app on his phone, I couldn’t get on with that but I have tried mindfulness 4 years on in some sessions arranged at my local cancer centre, and through lockdown those were done virtually. The NHS site has some good info on coping and you can always talk to your GP if it’s getting too much or to the lovely people on the Macmillan support line 0808 808 0000, the link below shows how you can get in touch other ways as well.

https://www.nhs.uk/conditions/stress-anxiety-depression/

https://www.macmillan.org.uk/cancer-information-and-support/diagnosis/waiting-for-results

i hope your wait isn’t too much longer as even when I receive bad news the fact that things are moving forward with treatment helps. I like to ensure I have a toolbox of ways of coping and I think that’s a good thing for me to concentrate on rather than the wait and worry but it’s not easy, and it’s unrealistic I feel to think that you should always be upbeat.

I hope the above helps and that someone with more a more recent diagnosis can reply here aswell.

Take care.

Thank you for your reply and lots of tips.

I've had biopsies, one of which resulted in finding a tumor. It's NET. After my biopsies I waited 4 weeks and the clinic wouldn't pick up the phone or answer my email. They only contacted me right before my appointment to tell me the news. Which I kinda understand, but it felt really stressful not knowing what was going on.

Now I'm not waiting for the clinic, but for the hospital. There are 2 hospitals involved in my tests (one private and one NHS). I was promised by the specialist nurse I'd know by last Thursday. She did call me and updated me on why (waiting for MRI results - though the MRI was done 6 days before). She promised to call me this Thursday with the news, but I'm expecting that she won't be able to tell me even if she will know (because I'm suspecting the Dr would need to tell me himself). I'd much rather if I was told upfront these things take time and I'll be waiting, say 3 weeks. But now I keep waiting for nothing.

I've had lots of symptoms that sound like they could be carcinoid syndrome, but the nurse isn't about to advise on any diet to ease my nausea etc until the results. I've had them for over a year now and they've been getting more severe.

I understand why they can't tell me, I just wish that it was more upfront on the waiting times to be honest.

Thanks for the tips, I do a lot of these things. Generally staying positive, but I'm not always able to, especially when I keep waiting for things pretty much each week.

Oh poor you, the waiting is this worst bit isn’t it especially when you haven’t a fixed date. I found that my cancer clinic date was on a Wednesday and the Multidisciplinary Team meetings were on a Monday so they usually need a team meeting before a clinic date so that things are discussed and put in place. I know it’s frustrating when all you want is to move forward with treatment. I feel for you, it’s an awkward time. 

Thanks. It sounds like this wait is normal then. That's a bit reassuring.

Also, earlier I didn't mean to rant but I think it came out as a rant

Thanks for your replies 

If it helps I didn’t see it as a rant, just an outpouring of thoughts.