Scared and lost.

Hi again Silversurfer5427 and welcome across to this corner of the community….. “How did you do this?….. is a very good questions. For me with my simple mindset there are only two choices. The first is to take control and define how I live my post treatment life….. or let my cancer journey define me….. my choice is take control.

I have an incurable cancer and although it’s in remission at the moment there is a good chance that it can kick off at any time in the future. I also have asbestosis so again, at the moment it’s stable but who knows what the future holds so my choice is to live life and live it to the full.

We have to learn to navigate the post treatment world and 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 well.

Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.

Macmillan have also teamed up with Bupa to offer up to 6 free counselling sessions for people struggling emotionally because they are living with cancer. Clicking on the link will give you more information about this.

Always around to chat ((hugs))

Hi there Silversurfer5427,

I've just spotted your thread so sorry I'm so late in replying.

You know January is not that long ago in terms of your emotional recovery. Physically you may have made great progress (I hope you have), but if my own experience is anything to go by, the emotional/psychological recovery is a whole 'nother ball game! That's not the part of you that gets all the attention though! 

Like most people, I imagine, I went through the whole medical process from diagnosis through to recovery with the focus entirely on the physical body. No one at any point along the way asked me how I was coping emotionally. For the most part, I was just carried along by the appointments for scans, chemoradiotherapy, meetings with consultants and so on. I trusted my team implicitly and accepted their reassurances that my cancer was treatable. I was totally caught up in the next thing I had to do, the next stage of the process. When it came to my surgery (a very big op) I was absolutely terrified, but still the focus of the medical team was on my physical recovery and state.

It was only many months after surgery that I really became aware of the psychological and emotional toll the experience had taken thus far. I thought I could cope and time would heal this part of me as it was doing for my body, but finally I realised I needed help. On the advice of good people on one of these forums, I contacted the Macmillan helpline and was thankfully referred for counselling, provided by Macmillan. It was so helpful in getting me to think more clearly about what had happened to me and how I might address it differently. I'm still fearful at times and very preoccupied with everything I went through, but it doesn't dominate my life and my thoughts to the extent it did before.

My diagnosis and treatment all happened during Covid and I thought maybe this made any psychological support less available than it might have been before. I'm sure it didn't help, but now I actually think that this provision is just very patchy and localised. I think there are some good local support services either hospital or community based, but they are by no means universal. It is definitely worth doing some research online or through your GP surgery or the cancer advice centre at your hospital to see if there are any local support groups etc. There are lots of us out there struggling with the recovery phase as much as we were through the diagnosis and treatment stages - you're DEFINITELY not on your own feeling as you do.

You have been through a life-changing experience which has taken its toll on your body, but also emotionally. Your scans might be showing you as cancer-free (and I hope your July one does) but your mind is probably playing catch-up and maybe you're still in the state of fear that started at your diagnosis. Please do see if there's more help out there than you think. And maybe try the Macmillan helpline for a referral to a free counselling service (6 sessions can  be offered). Keep chatting on here too - it's certainly helped me earing form others.

I wish you well and hope July brings more good news. (I've just had  my final one and await the results....)

Best wishes

Osboz

It’s not until the physical treatment finishes that the emotional impact takes it’s toll. That’s what happened in my case. I found this forum very helpful and I also attended several face to face sessions at Maggie’s. Check if there is one local to you. There is help out there and it’s so worth seeking it out. Having a cancer diagnosis changes your life and that takes a lot of adjustment. But we can and do come out the other end. I found concentrating on my interests and hobbies helped a lot. I wanted to think about what made me happy rather than constantly thinking about the illness. I hope you can find some help.