Leiomyosarcoma LMS

Hi Kaz121

Your reaction is entirely normal - although no less distressing for that. I’m so sorry to hear about everything you’re going through. It must feel like a whirlwind has hit. I think you are very sensible to step away from Dr Google (his bedside manner is appalling) and to reach out for support from people who’ve been there and done that. 

This community is organised into groups where people can share experiences and support each other. There is a soft tissue sarcoma group so do get yourself over there and read or join in, as you wish: 

https://community.macmillan.org.uk/cancer_types/soft-tissue-sarcomas/

I know next to nothing about the specifics of your diagnosis but it seems intuitive to me that you might also get some support in the rather busier breast cancer group: 

https://community.macmillan.org.uk/cancer_types/breast-cancer/

The common experience is to feel just as you describe during the interim between the shock of diagnosis and treatment starting. People often feel much more settled once a treatment plan is in place. I hope that will prove to be true for you. In the meantime, please be assured that you are completely normal and, from the sound of it, coping very well 

xx

Thank you Daloni, this helped a lot. I've joined the soft tissue sarcoma group as you suggested, I've had a few positive responses and am reading all the posts, it's helping to give me a sense of my reactions to all this. I'm expecting the worse news, I'm sure this thing is taking over my body. I can't tell my daughter yet, she's just spent a week with her partner at the hospice watching his father die. I can't tell my mum, she's 89 and has already been through this with my brother, I can I put her through that again. My husband doesnt even know how to put rinse aid in the dishwasher, how will he cope.... It just goes on and on. 

Hi Kaz121

Woah! Steady on there. Sounds like you are spiralling. I know it’s hard but do try to take things one step at a time.

It also sounds as though your family has a lot going on. I am so sorry to hear about your daughter and her partner. They do need to be there for his father right now and I think your decision not to burden her any further is probably the right one for now. It might help to think through with your husband and possibly with your nurse specialist how and when you will tell her and how and when you might talk to your mother. You’re still her little girl no matter how grown up you are. 

There is so much right now that must feel out of control. It can help to focus on the things you can control. For example, a walk outside somewhere green each day is always a good idea. If you know you’re facing surgery and might be out of action for a while, why not keep busy by cleaning the house? Reorganise the sock drawer. Polish the silver. God that sounds patronising. I just mean that keeping busy with tasks that keep both hands and some of your brain engaged can really help. It did me. 

I am glad you’re finding the soft tissue sarcoma group helpful. There’s no question too small to ask and there’s always someone here to listen 

xxx

Yes I was a little out of it last night, my mind was running ahead. 

Thank you for the wise words x