After another week of cancelled treatment (2 months waiting) I have spent the weekend in hospital due to passing large blood clots. Being poked and examined, talked down to and left on a bed with no assistance i am feeling really low.
I don’t want this to be my life and I’m not feeling strong enough to get through this.
I’m really sad to read your post and how you feel you have been treated in hospital. I know you had an infection and were waiting for that to clear up before treatment started, but the wait must feel endless for you.
When you are feeling so low, it can be hard to imagine getting through any of this and being treated without any empathy or care for your situation makes things even tougher. I waited 6 weeks for my treatment to start, but you’ve had the added issue of a change in treatment plan based on your scan results, so while we have to wait there are things going on behind the scenes while your team assess everything and your treatment plan is formulated and prepared. How are you getting on as far as the infection goes? Have you been given any indication of when the treatment might start? You need the infection to have cleared to be in the best possible place to go through the treatment as it will be challenging it itself.
However, you are the most important person in all of this, and you should be treated with care and dignity in hospital-I’ve had both excellent and caring treatment during my many hospital stays, but also received very poor care at times which can really feel devastating when you are weak and low. Are you still in hospital now? Are you in pain, and if so is this being managed for you?
I hope you’ll have your start date very shortly and feel that you will now be taking some positive action against this disease. It’s very scary to be waiting for things to happen, and you need to dig deep within yourself to find strength to keep going if you can. Please keep posting to let us know how you are, and we will help support you through as much as we can.
Sarah xx
