Hi, I am Daniel, 23 years old, I was diagnosed with NHL stage 1 when I was 20-21. Treatment was short and successful but after treatment I feel everything has regressed. I have never gone back to hospital (St James' in Leeds) and avoided emails and calls from my doctor, support worker and the hospital.
I have felt well physically and no symptoms of any re-occurrence of cancer, but inside i am struggling. I try put on a smile and brave face but its hard, I dont talk to anyone about it and dont have many friends anymore, not many people know I had cancer but I want to live my life but im just so scared, of cancer coming back, it sometimes gets too much for me and go periods where I do not speak at all, to family and at work.
I had a support worker called Dianne but don't speak anymore as I cut off contact and did not go for a scan after my treatment as I was just to scared to go. I went to Seacroft hospital in Leeds last year to test sperm and that's it in terms of hospital appointments after treatment. Deep down i want to go back but I am just afraid. I just want a friend or someone to talk to
I actually feel worse now than when I was going through chemo/radiotherapy. I don't want to talk to anyone but really I do, I just want a friend who knows its like. I am just so scared.
Good morning daniel7 and welcome to the Online Community but sorry to see you are still struggling following treatment.
I am Mike Thehighlander and I am dropping in past from our NHL Forum to say hi. I was diagnosed with my type of NHL in 1999 so I have been on the road a long time. To a certain degree I understand where you are at, but as you have completed the treatment and it was successful the challenge of moving on can be real.
The feelings you are having can be normal. You had the safety net of the treatment and once completed you can feel that your warm secure duvet has been taken away.
You do need to make contact with your team as this is the only way for you to move on. Call Dianne and arrange a meeting. I see a blood cancer journey as a marathon, the first 2/3 is diagnosis and treatment. the final 1/3 is post treatment recovery.
Why not come across to the NHL Forum, join the group and hit the 'Start a Discussion' tab and introduce yourself. These folks understand as they have all walked the walk so can talk the talk.
It would be really useful if you could put something into your profile as this does help others when replying to you or for those looking for support and information as they can read a bit about your journey so far.
Just click on your username and then select 'Edit Profile' under the 'Profile Settings'. If you're not sure what sort of thing to put just click on my username, Thehighlander to read my profile but my journey was rather long so it is a touch like War and Peace ;)
I will keep an eye open for you.
Mike - Thehighlander
Some journeys take us far from home...... but some adventures lead us to our destiny - CS Lewis
Hi again daniel7, I was having a look to see what services are in your area. A Maggie's Centre is being built in Leeds but that is of now use to you at the moment. Although up in the Highlands of Scotland, I meet up with lads who have been through cancer treatment every Friday and some do a 4 hr round trip just to be at the get together as they do see the benefits of talking one on one.
This is link to check on Local Macmillan Support Groups and if you just want to talk to some one from the comfort of your own home have a look at our Macmillan Support Line Services on 0808 808 00 00
I have sent to a friend request so you can talk off the grid. but the NHL Forum is also a great place as these folks do understand.
Thank you for your kind words.
Daniel, you will see that your signature has been changed. It is very important to protect your full identity as we do have people trawl the site looking to collect people’s information.
HI Daniel, I've had similar struggles and I am 18 months post treatment. I spoke to my Macmillan nurse and got some counselling sessions. I did help me and it will help you too. No one can take away what happened to you but we all have to find ways of coping with it and moving on. It's really nothing to be ashamed of or worried about. You could also look for a cancer support group in your area, it makes such a difference talking to people who get it.
All the best.
Onwards and upwards!
Good luck Daniel. I really agree with the other replies and think your GP could be the right path for you to take now and then some counselling sessions where you can say as little or as much as you want and get it off your chest.
Also I hope you get the courage to pick up the phone and call the Oncologists secretary and make an appointment or even see if you are able to speak to the oncologist over the phone and go from there. Hope you will consider .You will feel much better after getting this done.
hi,just thought id send you a quick meesage,i had NHL when i was 18, had large amounts chemo and 15 zaps of radium,from my jaw to bottom of torso,the treatment was hard and has left me with a lot of side effectts but im glad im still here 33 years later,,its hard when your at that age ,but enjoy your life ,and try to do the things you love,glad your in remission and if you need a chat ,im hear Ian
Hi Daniel I am a lot older than you(58) and 4 months ago had a treatment for womb cancer and I totally understand where you are. I have gone back to work in a new job and not told anyone I had cancer I don't speak with my ,CNS nurse and I have just had my first follow up appointment which at first I was not going to attend - but I did and I'm glad I did as most of my dialogue with the doctor was about my anger, me being fed up with all the cancer thing and I felt better and I changed my follow up schedule to what I can cope with. Yes I'm terrified of the cancer coming back but I more worried of cancer taking more of my life away from me. I am just accepting cancer has touched my life and I am turning corners slowly. Importantly though stay healthy, engaging with professionals at your pace can be supportive. Your young, live your life, hope you find peace XXX Dawn
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