Hi, I have just been told that my spleen is enlarged 22.3 cm I have a slightly enlarged liver and portal vein hypertension. I also have a lot of varices. I’m going for a endoscopy on Thursday to see if I have varices in my esophagus also. Apparently caused by a blood clot in the past, that is no longer visible but has left a lot of damage.
My question is does anyone else have this? Is so what’s the treatment and looking forward what does this mean for me? I’m scared and I don’t mind admitting that.
Oh, @Jaffacake I can hear how scared you are, and I hope someone will be able to share their experiences.
However, we are all very special, unique, complex beings.
You have a little while to write down all your fears, thoughts, symptoms and questions to ask either your CNS (Clinical Nurse Specialist), Consultant or GP who know you and your medical history.
This might be when you see your consultant to get the results of your endoscopy or a phone call in between.
I find it is the unknown and not being in control that are scary for me, my mind goes round like a washing machine.
Please let us know how you get on and if you would like to talk to someone the Blood Cancer UK support line is there for you.
Look after yourself being scared is exhausting and all consuming,
Dear @Jaffacake
I am so sorry to hear that you have this worry to contend with. How did the endoscopy go yesterday?
As @Erica mentioned, are you able to conatct your Nurse Specialist about your concerns? Once the endoscopy is done and reported then a plan can be relayed to you with all the information but I appreciate you want some personal experience and reassurance now.
Please do keep in touch and call us here if you need to talk things through:
Endoscopy found a lot of large varices in my stomach and Barrett’s esophagus… precancerous changes. I’m not concerned about the Barrett’s tbh as he said it might never change. It’s all the varices I have. Treatment is beta blockers I think.
Hi @Jaffacake I have been thinking about you, how are you feeling now, I know that you were feeling scared, and we and the Blood Cancer support line are here for you
I feel gutted to be honest, this was a missed diagnosis from 2020. All the evidence was there they just didn’t investigate or even tell me what the scan findings were. This all makes it harder.
However process of complaints has started to roll now.
I feel like I’m living life with a timed bomb over my head, what might happen etc…I’ll get my head round it and come to terms in the end I’m sure.
I feel as though it’s damaging my relationship with my mum, it’s almost like she’s turned a blind eye and buried her head. When I try to talk about things she changes subject. Today I told her my mental health is suffering, " I suppose it is" was her reply and of she goes on to the price of fuel
Hi @Jaffacake it sounds as if you have done all you can about your missed diagnosis.
I was diagnosed 18 yrs ago and my husband had always buried his head in the sand, he just cannot take it, especially emotionally.
I suppose also with your mum even the last generation never discussed ‘mental health’, it certainly wasn’t at the time of my diagnosis.
When I was brought up strength, resilience, never show weakness and never talk about emotions were seen as qualities.
Perhaps that is why I have found counselling and sharing on this forum so useful personally for me.
You have shown great honesty and support on this forum and we and the Blood Cancer UK support line is here for you.
Give yourself time and nobody in the world knows what will happen in the future, who could have predicted Covid times.
Look after and be kind to yourself
Hi @Jaffacake perhaps start with your GP. Then Macmillan, local voluntary services, then likely to be more expensive, the BACP (British Association of Counselling and Psychotherapy) register on line.
Don’t be scared of shopping around as it is a relationship between 2 people and not a quick fix.
Good luck
Hi @Jaffacake, I’m so sorry to hear that you have been struggling recently. It sounds as though you’ve had a lot on your plate with your recent diagnoses. Erica has given you excellent signposting here and options to explore. If you’d find it helpful to talk this through as well, please do feel free to reach out to our support line (0808 2080 888). I thought I’d post our ‘mind and emotions’ webpage here as well, in case it’s useful- Blood cancer: mind and emotions | Blood Cancer UK.
Hi @Jaffacake. I managed to get 6 sessions really quickly through Macmillan who are working with Bupa. I’ve put the link below. Just give them a call and see why they can do. It’s great that you are asking for help. These sessions really helped me. Let me know how you get on x
