Living with incurable Endometrial stromal sarcoma

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I was diagnosed with endometrial stromal sarcoma in 2009 after having a routine hysterectomy. In 2014 it had mestastised to my lungs with an incurable prognosis. My sarcoma is hormone fed, so my treatment mirrors breast cancer treatment. I take anastrozole to block the estrogen in my body, and I also have zoledex injections to shut my one remaining ovary down. I can’t have this removed, I have been told it would be too difficult.

Hormone treatment is hard. You cannot imagine how taking one little pill every day can impact your life. The brain fog, hot flushes, weight gain and aching joints can be unbearable. I do not recognise who I have become. I was always a very confident, out going person, but now I am just the shell of the old me. I can only try to explain how I feel now, it is like the light has gone out, and I am trying so hard to switch it back on, but it is only flickering. It is hard work keeping up this persona that everything is ok, when my brain is struggling to just hold a normal conversation. It is not just tiring, it is exhausting. The lack of estrogen has also affected my bones. I now have osteopenia in my hips and pelvis, which is extremely painful. If I sit for too long I struggle to move again, and going up the stairs one at a time. Last October I noticed that I was finding it harder to stand up from my chair. My husband was having to offer me his hand to pull me up. Also the stairs were becoming more difficult, to the point I would only go up once a day, to go to bed. I had my yearly CT scan around this time, and I had mentioned the pelvic pain, so this area was also scanned to make sure the sarcoma wasn’t the issue. Thank goodness this came back clear, and the bones showed no areas of concern, apart from the osteopenia.

One day I was out for a walk, when I felt a pop in my pubic bone, and I couldn’t take another step forward, it was so painful. I was stuck, and I panicked unsure of what to do.  After several attempts to take a step, I felt a pop again, and relief! I could walk. However I was so scared it was going to happen again, I stopped going out by myself. I became a recluse. I stayed home unless I was going out with my husband or daughter, and I don’t think they even realised at this point just how much I was struggling. My housework suffered, cooking became a chore, but I knew I had to cook a meal for my family every night, they had been at work all day whilst I just sat on the sofa, sinking deeper into my depression.

February came and I was really struggling. I would get up in the morning, shuffle down the stairs on my bottom, and sit on the sofa, all day! It was too painful to stand, or walk. My mental health started to suffer. I had been living with this disease since 2009, and I was at my lowest! I felt like this was as good as it was ever going to be for me. I love to read, but I couldn’t even do this. Every time I picked a book up, I would read one page, but the information wasn’t going in, I couldn’t tell you what I had read, so I stopped. I felt useless, no good for anything or anyone, sat on my sofa, not going out, just going down a very dark hole with no return. This was the new me, this was now my life. I haven’t cried since my diagnoses, I have always accepted my diagnoses, and just got on with the treatment that was necessary. My oncologist even said to me at the very beginning, it is ok to cry, but I couldn’t. I can cry for other people, I can’t cry for myself. In February I cried. I was rock bottom. I knew I needed to get up and move, because the more I sat, the more stiff and painful I became, but it hurt to move, so I didn’t.

I phoned my oncologist in desperation, explaining how bad things had become for me. She said she was going to write to my GP to ask her about pain relief, and a possible physiotherapy referral. I really didnt want to take more pain killers, as I knew that would only mask the pain, and not get rid of the problem. I saw my GP at the beginning of March, and she was very sympathetic. She said I had symphysis pubis dysfunction. This is where the ligaments in the pelvic area loosen, which is why I was feeling the bones dislocating. A referral was put in for me to see a physiotherapist at my local hospice. At first I felt very uncomfortable about this, this is where my mum died, this is the one place I had been avoiding. I really didn’t need to worry. The hospice is in a beautiful setting, with gardens and outside seating areas. The part of the hospice I had to go was in a separate building to where mum had been, so apart from walking past the main door to the wards, I didn’t go anywhere close to where she had been. The community area is set aound a coffee shop, with the treatment rooms and gym along both sides of the main seating area of the coffee shop. There were several people in the coffee shop, and there were different activities going on. There was a very good positive atmosphere, and I felt at ease straight away. My physiotherapist  Christie said that she couldn’t cure my symphysis pubis dysfunction, but what we could do is increase the muscle around this area which supports the pelvis, and this would help with the pain. The first exercise sound really simple, and for someone of 54 like myself should be able to do this without thinking. I had to sit on the edge of a chair, cross my hands across my chest, and stand up. I couldn’t do it. I just didn’t have the strength and it was far too painful, the pain in my pubic bone felt like I had been kicked by a horse! Christie was very encouraging, and we tried several other exercises as well, which included using a step and a gym ball, but most of these exercises were ones which I could implement at home. After the first day, I was sore,  but determined to give this a go to try and help myself.

I had weekly physio sessions, but also every day I would do the exercises at home, just as Christie had shown me. Each day I felt stronger, not just physically, but mentally too. One night just as my husband reached out his hand to help me out of my chair, I said “no, I’ve got this” and the first time in nearly a year, I stood up unaided! This was my turning point. Each week not only would I do more of the exercises, but I would add weights into the equation. I can sit up from my chair, in 12 repetitions, whilst holding a 2kg dumbbell. For me this is a huge achievement. I am still sore, and there are days when I do struggle, but at last I no longer stand at the bottom of the stairs, looking up at what looked like an impossible task, I can climb the stairs comfortably and confidently. But my journey at the hospice is not over. I still have a couple of physio sessions to go, and I now am visiting once a week for acupuncture. I have met some wonderful people over these past few weeks, and more importantly for me, the hospice stigma has been removed.

  • Hi Annette been telling others for some time what a wonderful place a hospice is, and how it's so much more than somewhere you go at the end, I like to think i have pursuaded one or two.

    Edi xx

  • Well done  for passing on the good work that they do. 

    For many of us, the word hospice brings such dread. In the past this was the one place you went to die, and if you were admitted there you were not coming home. Of course these days so much has changed, and I have seen people posting about their experiences with respite care at their hospice, where they have gone for a few days to get some much needed rest and pain control before going back home. 

    Even though I knew myself, that my local hospice wasn’t now just a place to go to die, but a place that helps people to live with their cancer, I was still very apprehensive about telling people where my treatment was. The word itself “hospice “ holds such negativity, and it’s such a shame because it really is such a valuable place.  


    Try to be a rainbow,in somebody else's cloud
    Maya Angelou

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  • Morning Chelle, It really is a shame that so many still have outdated views about hospice's, I go to the day hospice, holistic therapy, recreational therapy, counselling or just pop in for a cuppa and chat, absolutely nothing to do with end of life, though when it is my time, It's where i want to go, though hopefully not anytime soon. I know so many others would benefit enormously from the services available at their local hospice and wish they would at least look into it. I will carry on trying to encourage others to do so. Chelle i tell all my family and friends and fellow terminals about my hospice visits and the wonderful support they offer, If it changes old attitudes then job done. take car.

    Eddie xx

  • Hi Chelle

    Your original post was amazing to read! So many people have responded, I didn't know what to say to add to their responses, but thanks very much for touching so many hearts.

    I feel quite jealous of all the glowing descriptions of what hospices can offer...several of my friends have spent time in theirs in England, including a friend who worked as an aromatherapist, voluntarily, at her local hospice.

    We don't have a hospice, or anything like one, in our area. At one time, the very local 'cottage hospital' ran as an unofficial end-of-life care place for the local community. It was great....on a bus route, easy to get to, small and friendly, welcoming for visitors. Sadly, it has closed, as have many similar community hospitals in Scotland.

    It means, if staying at home isn't possible, that the only places to go for end-of-life care are the big hospitals. I don't want one of those to be my final destination! If i can, I'd rather be in my own home, and not in a hospital type setting. This has been on my mind recently, as I'm waiting for the latest scan results, and I'm not that hopeful of good news.

    Hope everything goes well for you in the next weeks and months Chelle!

    Stay strong!