Hi, I’ve recently decided to join this forum to communicate with people who are having similar experiences to myself. I am finding it really difficult to express myself to friends and family as I feel like no one understands how I feel.
I was diagnosed with a grade 2 glioma back in February and have been undergoing chemotherapy since May to reduce the tumour as it unfortunately cannot be operated on! I have just completed my 4th cycle and am expected to have 2 more cycles.
I am currently off work and have been since February, I am really starting to struggle with not having a purpose or a reason to get up in the morning. My job was my world and all I want to do is get back to it but I have no idea when I can return. As well as being unable to work I am also unable to drive therefore I am limited to where I can go and what I can do. My family live about 30 mins away however I spend most my days alone and isolated. My partner works full time and is out of the house the best part of the week.
I have tried many hobbies over the past few months including crocheting, colouring, gardening. I was attending the gym everyday in the beginning when I was still able to go.
Most days now I wake up and I don’t want to get out of bed or I just end up crying all day. I feel like a burden to those around me and don’t see the point of anything anymore.
I’m so sorry you feel this way but can totally relate and sympathise with you. It’s so isolating no matter how many people you have around you. Sometimes I even miss having treatment because you had that support network physically there and you met others on the same path but now even when I see people I can sometimes feel even more isolated because I don’t feel part of that world anymore. I’m getting to a point where all I want to do is give up and I hate feeling that way, it to me feels so selfish to say. I’m so lucky to be here what ever battle I’m facing today but these battles get lonelier and lonelier. I spend most of my time in bed and cry behind closed doors, I don’t show anyone around me how I really feel as like you said you already feel like a burden and they so desperately want to see you happy. I’ve reached out to my local support network so im waiting for things to fall into place but in the mean time it’s so hard. I’ve just joined this community in the hope it can make me feel less alone and I really hope it can do the same for you. Healing hugs x
Thank you for your reply, I am sorry you feel like this too, I can completely sympathise with you with regards to just wanting to give up and you are right it is a selfish thing to say but how we feel is completely relevant. If you don’t mind me asking what is the status of your diagnosis/treatment as you said you aren’t having treatment anymore? I think the worst thing for me is the unrealistic expectations that following my treatment things will just go back to how they were and I’m slowly having to come to terms with the fact that is not the case and I won’t ever have my ‘normal’ life back. Sometimes I feel like I wish I never knew about the tumour so that I could just continue living my normal life, blissfully unaware. I really hope things work out for you with regards to the support network, we all need support as much as we say we don’t, this is one thing I know I need to increase is the support around me and I shouldn’t be afraid to ask for help x
So at the moment my cancer is stable, incurable but stable. I was on oral chemotherapy after initial intravenous chemotherapy but it wasn’t benefiting me I had poor quality of life so they decided to take me off and keep a close eye. I’m scanned every 10-12 weeks and suffer anxiety every scan and the lead up to my results. Knowing my life can change again in one appointment. It’s basically a watch and wait process I have been very lucky and fortunate to remain stable in my prognosis now 6 months since treatment finishing (4 months since oral chemo stopped) I’ve had no activity, no new lesions but I’m all to aware how that can change. I the same remained positive about my life going back to “my normal” but it never has and that’s been the hardest part for me. I just want one day where it all just goes away but there’s always something to remind me I’m not that person anymore whether it’s fatigue, pain, anxiety, depression, physical symptoms or mainly psychological ones… it all can get too much for one person to cope alone.
That’s really positive news with regards to your stability! I completely understand where you’re coming from with the wait and see process, the last 6 months for me have been a whirlwind and I am still unsure how this is all going to progress. You get friends and family ask you what the next steps are and not being able to answer it yourself is so hard. I understand your anxiety as I am someone who likes to be in control of everything however with this that is proving very difficult! We all have good and bad days, but being here is the most important thing:) Take each day as it’s own and look for the little wins no matter how small!
I am sorry that you are going through this process. Anxiety and depression affects everyone with cancer in different ways, at different times and different levels.
I have found my daily ritual of writing my cancer diary highly therapeutic. Also mindful breathing techniques. Having said that, yesterday I was low, I felt useless and I was in pain. you need to find some local online groups to start with, or my best advice is drop into your local Maggie’s. Marvellous people
Hi Debbie, thank you for your reply, I can’t say I’ve ever considered a diary, may I ask what it is you write about? Yes I am currently trying my hand at online groups, I’ve been sheltering myself for the past 6 months, thinking I don’t need any one and that I can cope on my own. Boy was I wrong!
Good evening I find all stories on here helpful. My cancer has affected so much of my life I feel trapped by it. Like a said before apparently it was classed as terminal. I gone well past that diagnosis, my wife has left I think she was planning her life when I really effected, memory has been hit hard but I can remember her getting a bouquet of flowers would not say who from but when as red plum. Anyway got three lovely kids but have their own families, I am very unstable, very forgetful and can’t get out on my own. Things are hard but hopefully it will get easier. I really hope you’re situation improves for you.
All the best .
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