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.

  • Oh Chelle

    What a read, we go threw lots of Cancer treatment, and it works for a lot of us, though it can cause, lots of problems, further down the line.

    I to have osteoporosis , hence why i got fractures, the other year, caused my chemo and immunotherapy, should have been put on, bone strengthen medication, before chemo started, though was not.

    So glad you out pen to paper, and now you are going forward, thats what we like to

    here,

    My thoughts on the hospice, where the same as yours, ill i got complimentary therapy, there, a wonderful place, , i did say to hubby, that is where when its time, i wood like to go

    Not for my sake, but his, as he would not be able to cope with it.

    Though he went there first, i cannot praise them enough.

    Just pleased, you have now found some thing to help you.

    .Do not be a stranger, xxx

  • Thank you Ellie, your reply is much appreciated. I think we find it hard to admit when we need help, but I am glad that I did, and am very grateful for the help from the hospice. 

    Getting my thoughts down in writing has definitely made me see just how far I have come, I wouldn’t have been able to have done that 6 months ago. 
    xx 

    Chelle 

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

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  • It’s horrible how much cancer and treatment can take away from you, and it can be surprising how much difference some small steps can make. Well done on finding a way to start moving again. 

  • Hi Chelle that was an amazing read, what an inspirational story, Chelle I am so glad you wrote this as a lot of what you wrote resonates with my journey, my cancer is hormone fed ,testosterone, which is switched off with HT, so get side effects like you, fatigue, thinning/fracturing bones, hot flushes and brain fog and being on HT for life it's a daily struggle to keep on top of things, I remember the struggles with stairs 1 at a time, not coming down in the morning until i had been to the loo and feeling shattered walking 30 yards and have developed osteoporosis, osteoarthritis and neuropathy too, and as you did i found a wonderful physiotherapist who gave me the proverbial kick up the backside i needed, so now the physical side of life is ok, i can even manage a light exercise group once or twice a week. I agree the brain fog is frustrating, forgetting recent events and names and trying to remember things you know you know but can't is frustrating. Chelle brain fog also called cancer related cognitive changes, CRCC, can be treated i did a managing memory and concentration course with a psychologist, which has helped me, if you want any details you only have to ask, I can understand how you felt about the hospice and the memories it holds for you, but i  am so glad you managed to discover what amazing places they are, been going to mine well over a year and would recommend them to everyone, they are such a lovely place to be, Thank you again for sharing your amazing journey, my best wishes to you and your family, take care.

    Eddie

  • Thank you for your kind reply Eddie. I have spoken to a couple of gents before, who are on the zoledex injections that I have, and they have spoken of very similar struggles. CRCC isn’t something I was aware of, and the memory and concentration course definitely sounds interesting. I think this is something I will look into, so thank you for sharing that x 

    Chelle 

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

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  • Hi Chelle, an amazing read very touching and inspiring, keep going and take care 

    Lee

  • FAB-U-LOUS post, well done.  I was gripped reading that, not sure where it was going . . . .  loved the outcome.  That must be such a rewarding achievement for you.  

  • Hi Chelle I did the managing memory and concentration course at Maggies www.maggies.org It was a small group course over 5 weeks and though the psychologist was great, talking to the others who were going through the same thing was so reassuring. best wishes.

    Eddie xx

  • Thank you Eddie, there is a Maggies at the hospital, so I will go along and ask about it. X 

    Chelle 

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

    Community Champion badge
  • Hi Chelle, My mum also died in a hospice and when my GP first mentioned he would refer me to our local Marie Curie Hospice, I was horrified I told him I wasn't at that stage yet and would waited another 5 or 6 months as my prognosis was 5-7 months. Then one of their amazing nurses came to the house and persuaded me to go there for a coffee. The range of activities was amazing and not what I was expecting. I would urge anyone who gets a stage4 dx to visit their local hospice.

    Thank you for sharing your amazing story with us. It is much easier to get into a rut than get out of one. So well done! It was good writing things down helped!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!