How do I act, without scaring people away!!!

Hi Jane

I completely understand where you're coming from - this is truly an emotional roller-coaster ride. One minute you feel totally oppressed by over-caring relatives and then the next you want to be left alone.

I'm actually a CC for the Womb Cancer group so thought if you're going into hospital for a hysterectomy you might find this post from our group useful. What to take in my overnight bag

In the meantime I've tagged the Champ of this group src60 to drop by and offer you some support.

Sending supporting hugs, B xx

Hi Jane, I had leiomyosarcoma in a fibroid. It was discovered at the end of may this year after I attended A and E due to really bad stomach and back pain. Initially I was told that I had a kidney stone and sent home and told to return if the pain got worse. I went back the next day and they thought it was appendicitis and sent me for a CT scan at 2 am. I was woken later by a doctor who said that I had a cyst on my uterus and sent immediately to the gynae ward. Later I had a biopsy and a few days later an MRI scan. The gynae team had a MDT meeting with the Christie hospital which is the biggest cancer hospital in Europe apparently. They decided it was a cancerous fibroid and arranged for me to have a total hysterectomy which unfortunately had to be done as an open surgery. The consultant saw me after the operation and told me that there was no cancer. Last week I was told that it was leiomyosarcoma but they think it's all gone but I need a chest CT and am being referred to a consultant at the Christie. It's all very scary and it's on my mind 24/7. I know exactly how you are feeling. Some days I just don't want to speak to anyone as it takes too much effort. I hope everything goes well for you and please keep in touch. Deb

HI Deb, Snap! I've just had a hysterectomy due to a large growing fibroid. Been told today about the uterine sarcoma. Ct scan Friday to check lungs. How you feeling? I'm quite shocked still as I was told it was incredibly rare so wasn't expecting this. Almost keep thinking it's some cruel joke.

Hi Deb, I had a bit of a breakdown today. I was looking at the Macmillan website on my tablet and then my husband went to use it and saw that I had been reading scary stories and asked me about it. I ended up crying and telling him how scared I am. I am usually very self contained and don't want to worry my family and want to protect them. He rang my daughters and they came over and we talked through all my concerns. I feel much better now but until I have the results of my chest CT and have been to see the consultant at the Christie I will still be worried. I am still in awful pain from the hysterectomy and my bladder and bowel are still not right. The gynae nurse said that because of my two c. Sections there was a lot of adhesions which had to be resectioned during the hysterectomy so the bowel and bladder have had a lot of trauma. The fact that the cancer is so aggressive is also a worry isn't it? I was diagnosed with non alcoholic cirrhosis of the liver in 2018 and have had lots of bleeds and I was admitted to hospital 8 times between September and December last year. Obviously because of covid I was unable to have visitors and as one of my admissions was for nine days it wasn't a good experience. I am booked for the chest CT on the 14th August. I hope that your CT is clear. Please let me know how you get on. Deb

I understand how you feel. I still keep expecting to wake up from this nightmare. Very rare they say, but here’s three of us with the same diagnosis. It does feel like a cruel joke. Maybe we could stay in touch to keep each other going. 
xxx

You could always privately message each other. Click on someone's id then send them a friend request, once it's accepted you'll get a notification. Friends will then appear on your profile page and you select the friend then connect to send private messages. 

There's an annoying thing on messaging. You have to remove the click on enter to reply, otherwise as soon as you write Hi XXXX and hit enter for a new line it'll send the message. Try it and you'll see what I mean!

Hugs to all, Barb xx

I'm definitely up to that.

I've sent you both friend requests.

I'm in the waiting room about to have a CT scan to check out lungs etc. The hysterectomy staged me at 2 but we don't know what this scan will show up. I'm so scared of course like all of us. Wednesday is when I see the MDT team at the hospital in Bristol. Then I'll know if they removed all the cancer or if it has spread. Happy to support each other.

I think I’ve added you both. I struggle to get around this website so anything could happen. 
I hope you got on ok today. I certainly know how terrifying it is. I can see the CT scanner from my hospital window, sadly. 
haopy to chat and support each other, it helps to talk. 

Thanks Barb. I think I’ve done it, but I do struggle with this website. 
x