Hi all you lovely people.
I feel bit embarrassed posting this but you've all been so kind before and I wasn't sure where else to turn to be honest. Apologies for the essay, but I felt there was a need for context. Please pass it by if too much.
I've got PTSD around medical intervention, hospitals and invasive procedures. This is due to having had cancer 4x (Lymphoma at 16 and 19, breast cancer at 36 amongst others) and all the subsequent problems caused by the treatment.
Traction Bronchiectasis is really really taking its toll on me. I've been told the area I have, along with radiation induced fibrosis isn't that bad, so I don't understand the bleeding episodes and now daily coughing up fresh blood. (I've posted before about if I get emotional, cry or get stressed I will start bleeding, sometimes larger. I'm living like a robot and still haven't been 'allowed' or rather help to be able to cry and grieve my mother who died at the end of August 2024. I've so much to organise and could lose my job as I keep being unreliable and unable (I work remotely and they've been very accommodating). I do have a contorted I think they called it bronchial artery that they said 'could' be a cause of the bigger bleeds. No one seems bothered. Embolisation sounds terrifying and although RBH (Royal Brompton) sounds initially casual about me having one, didn't do it at Christmas just the antibiotic IV's. A different respiratory consultant said it's very invasive and dangerous procedure and usually only used for life threatening bleeds as it can cause paralysis. I'd just like have enough information from RBH to manage my exceptions of how my life is going to be. If this is it, then I can decide how long I want to put up with it for and make arrangements.
I thought I was doing much better with only a little bright green mucus and good airway clearance, it took all the month since December to get there after hospital IV's for 10 days (don't think it worked) over Christmas and 7 weeks Co-amoxiclav after as I got no decent hospital support and had to do what I had to do.
Fought my way back, as I say, still living like a robot and no emotions allowed, gained a couple of kilos. But then had a mild fever last week and then coughed up some fresh blood, nothing large but odd to be so fresh, thought best accept it's nothing as The Brompton unconcerned in any way, also said no admission with them for 4 weeks+ The next morning felt very tired and blood again. Local GP sent me to the local hospital MAU and MAU liaised with Brompton and they said I had Pseudonyms Rhodesia or something and something in March that again the Brompton said they weren't fussed about as they treated it in December !?!? (under treated in my opinion) Admitted to a revolting general ward with bloke with pneumonia, people vomiting etc. lots of guests. Not fed for over 24hrs as they didn't arrange it. Then no food options for me. Lost 2.5kgs. Feel weak, now having IV' Tazocin that I come in for 3x a day though they're not sticking to 8hrly. Only feeling better as I'm eating at home, feel really emotional, drained by it all and stressed (PTSD) and still coughing some blood in the day, especially if I try to do Airway clearance. I'm so underweight.
I've no idea who to try to get to help with any kind of proactive plan and care going forward as this isn't living it's loitering and lurching on, bleeding. Why shouldn't I be allowed to cry and grieve my Mum or even have a heated conversation without bleeding.
If any of you have any insight or thoughts, suggestions, I'd be so grateful as I'm really struggling. I'm sorry this is such an essay.
Big love to you all and huge empathy for your own struggles. X
