20 months ago I lost my husband of 47 to bile duct cancer. We didn't have any children but I do have a lovely brother and his wife along with a couple of really close friends.
June this year I was diagnosed with nhl of the spleen. Had 4 sessions of rituximab and a major allergic reaction to the final session resulting in an over night stay on observations. The rituximab didn't work so I'm now back at the beginning with zanubrutinib and not sure how that will work or affect me.
Since then at my latest diabetic eye test I have been told I have diabetic maculopothy which is affecting my eye sight and may stop me from driving.
I am due to start zanubrutinib this week, I am also seeing eye specialist on Friday and due to go away for the weekend.
I am tired, feel sick most of the time, have no appetite and generally feel like shit and can't see properly some of the time. Don't feel I can talk to my brother or friends as they all expect me to be upbeat all the time.
Final straw today was something so minor- I couldn't get the top off a new bottle of bleach. I just sat and cried and thought what have I done to deserve this.
Sorry for the long post - just needed to get it out of my head and hope I can now get some sleep
Hello Clancy1976
I have just read your post a couple of times and can quite understand why you feel like you do - you haven't had a great couple of years - and yes - no one deserves to feel like you do.
For the NHL have you thought of joining our NHL group for some support and ideas around this - her's the link you need
I know one of my fellow Community Champions Mike (The Highlander) looks after this group and he will be more than happy to support you.
There is also help and support available outside your normal family and friends - people you can talk to:
* Do you have a "Maggie's" near you - this is a cancer support charity where you can just call in for a chat and support - link here -Maggie's.
* How about having a Macmillan Buddy - it's someone to chat to every week - it can be anything - not just cancer - again - link here - Macmillan Buddies.
* Don't forget our Support Line is there for you on 0808 808 00 00 (8am to 8pm 7 days a week) - just give them a call - they can help.
I hope some of the above helps - if you want a chat i am always around - we all have that bond cancer and no one should face it alone.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hello Clancy1976
Now that's a more positive post - and at least you have opened the bleach!!
It's hard being positive all the time on a cancer journey and we all need love, support and sometime so much understanding. I have had a couple of weeks like that - everything went wrong, I snapped at my friends and family and it's one of the known side effects of my medication - now if I feel it coming on i know how to control it.
Thanks for the reply - good luck with the new treatment.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
