New here and saying hello

Hi SamF and a warm welcome to the board. Congratulations on finishing chemo - that’s a big jump from T1 to T4 so must have done as a shock. I can totally relate to how you feel having finished chemo. I had my final appointment with the oncologist where she told me she ‘never wanted to see me again’ (said with love) and sent me on my way. Instead of being overjoyed I felt totally flat to the extent that my mum thought I’d had bad news when I rang her! I think I felt a bit deflated as I was suddenly on my own - no appointments for the foreseeable future and no popping in to get my pic line flushed - my safety blanket had been taken away. Everyone thinks you should go back to normal but now you have different worries - scans, bloods, overthinking every little niggle.

The paper below describes this as the underestimated last stage of treatment and it’s a good read to keep in your pocket and drop into when you have a wobble?

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

it’s still early days after finishing your treatment and your body will take time to recover. Listen to your body and rest when you need to. The booklet below talks about living well after cancer and also has suggestions for what to ask at your last appointment

https://bcuk.adidocdn.dev/Publications/LivingWell_BowelCancerUK.pdf

The support desk is available 7 days a week from 8-8 if you want to chat to someone and they can also tell you about the free counselling sessions available with bupa?

Hope this helps

Take care

Karen x

As Karen said, you don't feel back to normal right away. You might never get back to that pre-diagnosis normal. So much has happened! It can't help but change you. 

I am still navigating surveillance scans and follow-up visits and fear of recurrence. 

My own tumor was T4b but we knew it was bad from the beginning so I all the shock and head spinning occurred early on. I can't imagine the roller coaster of T1 to T4. 

Be gentle with yourself. Sending virtual hugs. 

Thank you so much Karen for your welcome and for the links, really helpful ️ I did access the counselling sessions during chemo which was so helpful but now need to find an alternative but I will give the support desk a call too.  Thanks very much for your help and take care Sam x

Thank you Susan, it really does help to be told to take things slowly/gently  - hugs straight back to you and hope you are doing well x

SamF you’ve certainly been through the mill and I can relate.  

Originally I was told mine was Stage 1 or 2 only to find there’s a ‘malignant looking lesion’ on my kidney and the colorectal cancer is Stage 3 with spread to lymph nodes. I haven’t asked how near to the tumour or the walls - thanks for giving me a useful question for the next oncology appt. I don’t know and no one can tell me if the kidney is a second primary or a met.  I’m on watchful waiting and will have the another CT next month.  I have positive CTDNA and am on the trial for the cancer vaccine but will be removed if they say the kidney is a definite cancer.  CTDNA means I’ve an 80% chance of recurrence or mets in the next 2 years so to be removed from the trial would be devastating.  
I feel every appointment brings bad news and it’s really hard to try to put a positive spin to friends and relatives.  There’s a lot they don’t know.  They want me to be better which I understand but….

Sorry I had chemo today so maybe not in the best frame of mind. 

It’s worth noting, i was neutropenic after my last chemo so this cycle was delayed for 10 days.  The last few days of the delay I felt a bit more normal, eating healthier, bit more energy, clearer head etc. it gives me a little hope that there’ll be a noticeable gradual improvement when I finally finish. Give yourself a break and don’t put pressure on yourself to be fully recovered, people will have to understand it takes time to adjust physically, mentally and emotionally to what comes next.  If you need to vent do so.  There’ll always be someone on here who hears you.  

Sorry for wittering on but it’s chemo day and I’m on my own with only thoughts for company.  

Good luck with those next scans xx

Hi Lee, I’m so sorry to hear you’ve had a similar experience to me on the diagnosis front and I really recognise the feeling of every appointment bringing bad news. It’s awful and scary. I have the same watch & wait with my lung nodule and all I can say is ‘at the moment’ they don’t think it’s a spread so that’s it until the next time. That was positive news that I wasn’t expecting. I’m interested to hear about your CTDNA - is this the blood test they give you at the start of the trial. I have joined the trial too - and have had  the same threat of being dropped if the lung a met - but have not been told my chances of recurrence CTDNA - perhaps we will discuss this at my follow up next week I’m having a wobble about the trial at the moment because I feel so done in at the end of the chemo but I have a lot more questions to ask before the next time. And also to reassure you I AM feeling incrementally better each day post chemo, it is so different to being on it but it is slow and not linear and pacing/being gentle seems to be the order of the day. The links Karen posted are really helpful.

Good luck with this round and hunker down and take good care. Thank you very much for answering my post too ️

Hi Sam,

So you had a positive CTDNA result on the CLVP trial? It’s apparently quite rare, only 15% of those tested prove positive.  Yet another club we don’t want to be in️
At my 2nd appointment I was told if I were to go into the treatment group I would start treatment 5 weeks or so after the end of chemo. Hopefully by then you are able to face it.

As long as you’re not thrown off the trial they make a personalised vaccine for you whichever cohort you’re in. I’m not sure how this helps if you’re not one of the chosen few. 

btw - I’m at The Marsden for CVLP. 

Hi Lee_L 
i don’t know whether I had a positive CTDNA result. I haven’t been told any results yet just given a lot of blood  I’m at the Marsden too. To be honest I’ve been so consumed by my chemo rounds I haven’t give the trial much thought until now.  My follow up to chemo is this coming Friday so will take it from there. Good luck Lee and rest well x

Hopefully you won’t be CTDNA positive .  And good news on your scan.   I know from experience that watchful waiting is not great when your mind goes into overdrive but at least you’ll can get healthy again after chemo.
Your allocated CVLP trial nurse will be able to tell you your CTDNA result if you call or email. It’s seems unlikely it’ll be positive if they’ve left your appointment to the end of chemo as it takes time to make the vaccine. 
Maybe this is when things get better for you xx

FYI, they just drew my first ctDNA sample last week so no results yet. However, my oncologist told me a couple interesting things. 

1. Most people "in my situation" (not sure what that means) will be positive 
2. Most important indicator is trending (ie, consistently rising). Some minor fluctuations are to be expected 

No idea how well that tracks with what you've been told or how accurate it is. I needed to push a little to get the testing at all so not sure how much my oncologist has done with it. He said it wasn't "standard of care" but might be beneficial.