Hi everyone, I'm 56 and two weeks before Christmas I was told I had a tumour in my right eye near the optical nerve.
My opticians originally pick this in in a routine eye test, where they found i had mole in each eye but the right eye mole was leaking.
Every 4 months I have been going to either Bromsgrove hospital or Birmingham hospital for scans and monitoring.
Just before Christmas I was sent to Liverpool Hospital where I was told a had cancer, it was so hard to take everything in, but the staff were lovely.
I had the operation to have the titanium markers fitted the following week.
Besides my eye feeling a little itchy I didn't think it was too bad.
I went back to work after 2 weeks, I have mask being made in February and proton beam radiotherapy in March.
I've always been a sickly person and I'm on quite a few medications but never cancer.
I just don't know how I should be feeling, I think everything is going over my head and I have shown no emotion. I already suffer badly with my mental health and I'm scared I won't cope with this. I'm being strong for my family but maybe I want to breakdown or even angry.
Should I be at work should I be at home, I just pick up my second lower tract respiratory infection. It feels like one thing after the other. Sorry for such a long post x
I'm sorry you are struggling. I know it can be a shock. Like you I didn't really react to my diagnosis and just got on with things. Sometimes the anticipation of how we were going to react in the moment can be greater than the actual experience. I know its really difficult but try to just be in this moment. If you feel your mental health is being impacted then make sure you speak to your doctor. I suffer from low mood and can slip into a deeper depression and understanding that these feelings are a normal reaction and not the deep dark place that we are afraid of. Try taking one day at a time. I don't know what you do for work but can your attendance be a bit more ad hoc and you go in for less hours, a bit later or not at all from day to day? or if it's a mental rather than physical stuggle you might find it more helpful to be busy so your not constantly ruminating take few minutes to yourself if you feel the anxiety rising.
I am now cancer free so there is a light at the end of the tunnel. The staff will look after you. Lean on family if you can they won't mind and will want to feel like they are helping you. Only you can decide what's best for you but as I have experience of antidepressants I can relate to your not knowing if you want to breakdown or be angry or not, remember they affect our mood and I personally felt that they made me feel like I didn't really feel anything. Happy or sad, just an even keel, as with every life experience it comes in waves. I know its a cliche but stay in the moment if you feel your getting anxious, sad, scared, worried then take a few moments to steady yourself, inhale and exhale slowly and feel whatever it is your feeling, acknowledge it and go back to whatever you were doing. You will come out the other side and you will be OK. Good luck to you
Good Morning.
May I firstly commiserate with your diagnosis. It's not one that any contributor here wants in their lives but it is one we somehow have to find a way to integrate to our "now".
The only thing I would suggest is that there is no specific "way" to feel about it in my view. "Keep Calm and Carry On" may actually be right for you.
It is possible though that this being a very new diagnosis, that you're still thinking about the facts and process of treatment, and not as yet had time to really consider what the emotional impact on you is as yet. By that you've not necessarily asked yourself the question "Just what am I feeling about this?" rather than the "should" as you've mentioned.
Perhaps contact the cancer support teams to set up a few 1 to 1s if available may be an outlet? That should appear in literature you receive during treatment. Does whoever you work for provide Employee Assistance in terms of advice lines/counselling? A trusted friend/relative/faith counselor/GP perhaps may all give you options to consider vocalising all this too.
In vocalising it can connect you to the very emotions you suggest are absent to you at present (there's every likelihood they are there), but do it in a "safe" environment where there is no judgement. There can't be as these are YOUR feelings on the matter and you more than anyone have the right to them in your case.
HTH and good luck with the PBT. Wishing you good health to come both physically and emotionally.
Thank you so much for replying and well done on being cancer free.
It's almost like I feel selfish for feeling like this, when so many are going through so much more.
Think I just have to go a long for the ride and see how it goes.
I know they have caught it early, so that is a blessing.
Even when your free of cancer are totally able to get it out of your mind?
Thank you, I work for a vets so I'm sure there is help available.
I don't think I've quite taken it all in yet, and I read the surgery, is the worse part to have markers sewn in. So at least that's all over with.
This support group is amazing and I will continue to read posts.
Thank you again for replying
This resonates so much with me. I’m post surgery and wondering if I should be back at work. Outside of the hospital and clinic, I’m me, nothing wrong, no emotion. but in clinic I’m the silent blubbering wreck. So I never ask anything. But if you’ve been to Liverpool LOOC you might be able to access their Health Psychologist, who I’m sure they said works remotely. Clatterbridge also have a team of psychologists who might be good to catch up with?
Im like you, don’t know what I should feel or do, but I guess (and reading here helps) our journeys are unique and we need to do what’s right for us in the moment …. I’m just not sure how we find it? How are you getting on working it out?
I wonder if it is ok to have different versions of ourselves in different places?
Sending lots of good wishes your way, if we have the same team in Liverpool, I think we can have trust, hope and faith!
LouBeeLou thank you for taking the time to read my post and reply.
I had proton beam radiotherapy 3 weeks ago and due back at work next week.
I'm a little worried because it means me using a computer 8 hours a day and I'm wondering how this will be with my eye.
I have had a few phone calls with the very helpful Laura Hope-Stone who is the Physiologist, if you haven't spoken with her, i would definitely recommend it.
Like you say, it's a very strange feeling, probably because outside of Hospital visits, we are carrying on with our everyday lives, and it's almost like it's not real.
Today my eye feels very tired and since pbt I now have floaters and flashing lights, which I never had before.
I know they say it has a very high success rate but I feel it is something I will always carry with me, but it's crazy because I almost feel guilty for feeling like this, when there are people with more serious cancers but I suppose to me mine is serious, I don't either know that,
I decided on having a biopsy on my last day of treatment, so am now waiting for the results.
I will be thinking of you and hope your journey will be a safe one, if ever you need to ask anything, write it down, then you will remember x
I’m glad you have found Laura helpful, I’ve not reached out yet but I know I need to. I’ve found the CNS really helpful via email with the practical things which is as far as I’ve got with processing it all.
I also opted for the biopsy when my plaque was removed (about 3 weeks ago now) and results due mid April. It’s a worrying wait isn’t it.
I’m trying to tell myself it will be a win-win situation. Low risk will be great news but high risk the NHS jackpot as you get the maximum follow-ups to ensure anything dares to comeback and it will be caught and zapped!
wishing you a positive set of results, I’ll be thinking of you too x
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