1 year on

Hi Beard12 and welcome across to this little corner of the Community.

The post treatment part of a cancer journey combined with the ongoing checkups can be very hard work and at times stressful.

No one size fits all for how you navigate this. I have been on my rare blood cancer for coming up to 23 years now…. having had many many treatment due to the regular relapses but I am now over 5 years into my longest remission so actually living the dream.

I have a very good support network around me so I have hardly ever carried any part of the journey in silence as I have a few folks including my family who have an open door policy to ‘everything’ that is clogging my head…… and for me this works.

But sometimes folks need external support and yes on a couple of occasions I have connected in with this.

Do check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area as these folks are amazing and this where I found some specific support with an issue I had to deal with…… I was struck down with survivor guilt after a few very good friends passed away with their type of cancer and so survived - why?……but s few sessions with the Maggie’s Staff helped unpack this.

Macmillan also have our Telephone Buddy Service where you can be matched with someone who understands what you're going through, and they'll give you a weekly call.

But this group is always around to be a place to chat in.

I have just come off the 3 month checks and onto annual ones. I found after each all clear I would have about 2 decent months and then start the decent into an anxious mess until the next check. I wld say you are pretty normal. I’m just hoping I get 11 good months now

Hi Beard12 l think you explained it so well. I just want to get up and try and put it behind my. I do feel a bit disconnected and I’m flat emotionally. You are so young, I’m glad you’re slowly getting back to good health. I think going every 3 months for scans is hard but necessary and a worry. Sending hugs xx

Hi Mr Anxious, do you mind if I ask how long did you have your 3 monthly scans for? I’m just back to square one again, just had my first post surgery/chemo  scan end of April. Sending best wishes xx

Hi Nelly1955, the post follow up journey can be so dependant on the actual type of cancer you have.

Mr Anxious and myself have different types of Lymphoma, for me with my rare Non Hodgkin’s Lymphoma I relapsed every 6 - 9 months during the first 16 years of my journey so was having CT scan about every 6 - 9 months. My last treatment was in Oct 2015 with my last CT being Dec 2015 and remission achieved in Sep 2016…… and I remain in remission.

I was discharged by my consultant in June 2018 and only have full bloods once a year and a quick phone call with my Specialist Cancer Nurse following the bloods.

You may find it helpful to make a cuppa and have a look at this great paper After Treatment Finishes - Then What? by Dr Peter Harvey as it highlights the post treatment milestones.

I stayed on 3 months checks for a year after treatment ended. Now I will be on annual checks hopefully for the next 4 years .

Thank you for replying Thehighlander and mr. Anxious. I thought it was 3 monthly. It was 3 monthly after chemoradiation. I wasn’t sure how long after surgery.   I did ask at my last appointment ,nurse said not sure. I did get letter in for scan for early June , the day before I got an appointment letter for the end of July which would make 3 months. I panicked a bit over the scan as that would have made it 6 weeks. I text the nurse who said that would be too soon. I am now in nurse  suvillence well done Thehighlander for your inspiration. Best wishes and thanks.xx