Hi Everyone,
I had stage 4 HL August 2019 and got the all clear June 2020 so all good but I still get anxious every blood test ( even though it’s every 4 months and just a blood test !) and feel a bit down and sad about the trauma of having cancer . It goes after I speak to the Dr but I just want to ask anyone is it something I will always have, I know it’s nothing compared to what people are going through with treatment so I feel a bit pathetic even asking .
sending everyone love .
lisa
Hi again Lisa lolaruby ....... please dont down yourself and you certainly are not pathetic....... the journey you have been on and are still on is massive and at time all encompassing.
You are now well down the road and I agree with Cattie cattiewhitty your consultant is just being diligent and looking after your whole being and not necessarily looking for relapse.
You may remember that I have lived with and been treated for a very rare, incurable type of Non Hodgkin's Lymphoma and over my first 15 years I relapsed many times...... but I turn 68 in a few weeks time and am getting on with living life.
I refuse to allow the 'what if's?' define how I live my life........ I did not go through all the years of rubbish treatment to then let the space between my ears control me.......... actually as a family we choose how we define the way forward.......
I am not saying that in the early days after my last treatment (over 8 years ago) that I had it easy....... no, I had to put some work into taking control of that noise between my ears.
I often talk about the concept that when we first get our cancer diagnosis we all get an invisible ruck-sack put on our backs.
We then walk through our journey including our treatments, clinics, blood tests, scans, side effects……. and unknowingly, we continually throw stuff into the ruck-sack…… and the stuff builds up. It’s only when we finished our treatment (rang the bell) and look to try and ‘live’ life we realise that it’s not that straight forward.
This is due to the weight of the ‘stuff’ we have collected in the ruck-sack pulling us down…. stuff like pent-up anxiety and stress, the ‘what if’s’, the difficulty in seeing a way forward with life, the disappointments around how some of our family and friends supported us, the silly things people said during and after treatment….. the list goes on.
There comes a time when we hit ‘the wall’ and this is the point when this ruck-sack needs to be taken off our backs and over time cleaned out. It’s not an instant fix but a process…. but the healing process can only start when we are willing to do it and to achieve this we often need help so these are some links that you may want to follow up and see where you can find this help.
One thing I did have to deal with was survivors guilt as I lost some very good friends to different cancers over my years and "why did I survive and they did not".......... but I got some great help through our local Maggie's Centre especially their Where Now? Course and One on One support.
Lymphoma Action run a very good Live Your Life Course that is available in-person and through Zoom
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.
