Hello everyone! I joined the community for support. My partner has JAK2 mutation blood cancer. They were rushed into hospital in August 2023 with stomach pain. They had a massive blood clot in their liver. The 3 veins that lead to their liver, stomach, speen were all clotted out and blocking blood flow. They started to go sceptic and nearly died. At that point in time we were together only 4 months but I knew they were my soul mate after waiting my whole life time to meet someone like this. I used to turn up to hospital each day not knowing if they survived the night. It was traumatic and I've never really gotten over it but you push through.
Luckily one month later their body was responding to blood thinners and treatment. Luckily no chemo. They were discharged and my sole priority was helping them get stronger, gain weight and get through. Leading up to Christmas the did just that. You would never know. Every month we attend hospital and have tests and they came back great. We thought the medication they are on for life was getting rid of the blood clots. Last week scans revealed their condition hasnt changed at all. We don't understand because they've been in high spirits, maintained weight but gets more tired.So last weeks consultation the drs said they think their body has re-routed blood flow around the blocked liver and veins. They can't see how its doing it but they ordered a scan with dye to find out. They referred us to the top specialists in the country. We have our next appointment in a few weeks. Their condition inside their body has worsened. The back pressure from the blocked veins and liver is putting pressure on their gall bladder. They want to put in a stent, start beta blockers to reduce the pressure on their blocked veins but they seem doubtful it'll work. They want to find a way into the veins to remove some blood clots to relieve the pressure but right now they can't find a way due to all the clots so they ordered that dye scan. The biggest immediate worry is they have developed swollen blood vessels in his oesophagus called varices. They are worried they will rupture and bleed out. They have some in their stomach too. They want to operate to band these oesophagus varies. It's very risky and they will bleed we are told when they scab over to heal. Being on blood thinners any bleeding is increased. I'm so worried and exhausted. I dream about it every night. I feel everyday is a battle and I'm petrified they will die. Has anyone got any experience dealing with this? Has anything worked? How do you not let the fear of losing the one you love take over? Thank you all!
Hi Harley24 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
It sounds like you and your partner have had a long and difficult journey so it's natural that you have lots of worries.
As the online community is divided into different support forums I'm going to recommend that you join the carers only group which is a great place to discuss your emotions and share your experiences with others who have a loved one living with cancer.
To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
You haven't said what type of blood cancer your partner has so you could look through this list to find the right one where you can ask questions and share experiences.
It would be great if you could put something about your partner's diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
