I finished Chemo in January 2020 and am still not back where I would like to be. Still have the neuropathy , brain fog, fatigue and don`t even try to socialise now. I do have an underlying condition which is playing up. I look ok and all the issues are invisible to others except me. I hear the expression , "just enjoy your life , you are better " they don`t understand ,so I don`t talk about it anymore. It makes you feel insecure , very alone. Does this make sense . ???
My very best to you all,
It makes perfect sense! We all have the same problem when people ask how you are and then their eyes glaze over when you start to tell them, so you stop..... It can be very disheartening and its times like these that you need forums like the one we are on because people "get it". I started a phased return to work just before lockdown and one of my colleagues asked me how I was and I said i'm really tired and he turned round and said "but you have been off for a year, how can you be tired"! I just looked at him and shook my head.
I finished my treatment 14 months ago and I still feel tired most of the time. I now have little bursts of energy where I try to do everything at once then end up tired all over again. We are our own worst enemies Micky but that's how it is (with me anyway).
Chemo brain or brain fog as you say can be very distressing but at times absolutely hilarious... my dishwasher is now the microwave and I forget from one second to the next what I was about to do or say. I tell myself to write things down but by the time I get to my pen and paper I have forgotten what it was!! I'm told it will improve but we will see.
I find you need to have 1 person that you can offload to and MacMillan are brilliant at that. They have found me a "buddy" that phones once a week for a chat and it really does help. Don't be scared of joining cancer support groups, we are all in it together!
I hope what I have said helps and I hope you feel a teeny bit better.
Take care and keep in touch .
You’re so very right. It’s a complete nightmare trying to find people who get what the issues are. We’re a herd species and expect other members of the herd to instinctively recognise when we have a problem. Unfortunately they don’t unless they’ve been down the same road, and this can include your nearest and dearest. Which is why forums like this are so very important. Keeping it to yourself isn’t a long term solution. So, the only logical solution is to find like-minded souls who’ve shared, or have empathy with, the same journey. Support groups, online friends and insightful family are the most amazing help in getting through what can be a terrifyingly lonely journey. Micky, you’re normal. Don’t sweat it. There are a lot of us here who have been down the same road as you, so just keep reaching out if you need a hand. We’re here to help each other as well as ourselves. Stay in touch.
Hi Micky Dykomio, I think lots of folks looking at your post will be nodding their heads as they completely understand the post treatment challenges.
I am just coming up to 5 years out from my last treatment but had a very hard first two years post treatments. I can now say that I am happy with the ‘new’ me. I am more reflective, take each day as it comes and see the future as gift.
One of the most important things my wife and I understood was the importance of talking with people who understood and humour those who did not.
I was diagnosed way back in 1999 so have had lots of time to develop a rhythm. I only found remission back in Sep 2016 so lived 17 years having treatment so this past 4 years has involved a new way of thinking because I don’t now have any signs of my cancer so know one would know, before I was covered in open tumours (skin Lymphoma) so most people who I did not know crises the road or stared.
But I was confident in myself and in the treatment I was having and did see those who said silly things or just stared to lack knowledge or any empathy as I never wanted sympathy.
Have a look at this great paper as it does highlight the milestones in post treatment recovery.
You have found a great corner to find kindred spirits so keep posting.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
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Just thought I would add something to the thread that has built up from your post.
Isn't cancer complex? I have members of my family who are in the 'just put it all behind you' camp and others who actually get that this is an experience that stays with you. Bless them, a lot of the time they don't understand that we are living with what my Macmillan counsellor aptly called a 'new normal' and that will always involve this journey we have made and continue to make. My approach? Pick your confidants. Talk deeply to the people who can make a step towards you and just do the social chit-chat with the others. Cancer changes more than just your body. So give yourself the space you need even whilst you enjoy this second grasp at life.
Of course the physical stuff also plays its part. I've just gone through two years since my bowel cancer surgery and chemo - my colo-rectal nurse told me I have 'graduated' to six monthly check-ups. Yippee! But I had a chat about the stamina plateau I seem to be on. I'm feeling well, doing things I used to and living with my new pet stoma quite comfortably but I don't feel I am getting any better somehow. Seems bowel cancer survivors don't ever recover their old levels of energy and stamina. So there we are - up on the seesaw, down on the seesaw. I suppose it might be the effect of having half the digestive plumbing I started with but, whatever the reason, I now need to make some adjustments to keep my energy levels good. A few more sit-downs, a few less hectic days, but, hey, that is a great excuse to pick up a book, listen to some music, watch the garden and the world go round. Up on the seesaw again.
So, yes, it does make sense. And, no, you aren't alone. But you have time now to work out what next, who next because you are still at the beginning of this nexwphase. Give it some more time and I bet you will surprise yourself how far you will have come
Take care of yourself and stay safe
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