#Leiomyosarcoma ~ What Comes Next? My Cancer Fight!

Since my last update I have had numerous blood tests and a PET scan. It seems each time I have a different variety of scan it picks up yet another tumour, this time in the sternum (breast bone). I have got to a point now where I just accept it and add it to the list, currently standing at both femurs (thigh bones), hips, pelvis, base of spine, shoulder, wrist and now sternum.

My main concern has been the condition of my legs. Due to the increasing mass in the femurs they are on the point of fracturing, obviously apart from being extremely painful and inconvenient this poses the risk of spreading the cancer and speeding up my death warrant considerably. So adapting to life in a wheelchair is a challenge.

The main treatment option that I have been clinging to has been having a new hip and femur in both legs. My initial orthopaedic team considered this to be a tricky surgery so correctly referred me up the ladder to the sarcoma unit specialists, of which there are only five in the UK. After little debate they have categorically refused to perform this because they think it will be too traumatic for my body to deal with and by having TWO damaged legs I don’t have the luxury of one strong limb to use while doing the substantial rehabilitation.

All they are prepared to offer me is radiotherapy for pain relief. My oncologist fears this will just weaken my bones further and I agree with him. Not only that but IF I did endure the major surgery and recovery it isn’t dealing with the cancer in other areas of my body. So while healing the legs I will be using crucial energy to fight the tumours. 

I have been offered chemo targeted therapy injections to try and gain some shrinkage on the tumours which I will try along with all the associated side effects. I also need to have a bone biopsy to confirm all the tumours are Leiomyosarcoma metastases. While the UK medics are under the impression that this disease doesn’t metastasise to the bones I know of several people in the US where this is the case. Leiomyosarcoma is pretty much chemo resistant so they need a bone/tissue sample to calculate the correct protocol. 

For a brief moment my team were ‘hoping’ the mets would reveal themselves as Myeloma because that is easier to treat and I thought it would be typical of my luck to have two rare cancers but tests have come back negative on that.

So, where does that leave me now ?? I await an appointment for my biopsy which should be in a few days but that thing called Christmas will undoubtedly hinder it! I have the chemo injections and I see my oncologist again on the 9th January by which time he is aiming to have the biopsy results and will have approached one other team of orthopaedic surgeons. So yet again I play the waiting game and my life hangs in the balance of others.

I am taking plenty of morphine in various forms which has it’s own issues, lack of appetite, constipation, nausea, drowsiness etc plus complete lack of concentration which isn’t helpful for a book blogger! My movements in all body parts are restricted and I’m rapidly losing what little of my independence I have left.

But I have so much love and support in the blogosphere it is amazing, messages galore on all social media sites, delightful surprises via the mail, beautiful bouquets filling my lounge, offers of help from across the world … my faith in good, decent human nature has been restored and I love you all. Every single act of kindness is noticed and appreciated and you have no idea how much strength that gives me. If a miracle could be created based on support I would be flying, fit and healthy by now.

I have several blog tours still to complete in the new year that I scheduled months ago so there will still be a few posts appearing and of course if I actually manage to read any of my backlog the reviews will pop up! I’m currently attempting to compile my top 2017 favourite books list .. it’s very difficult to narrow it down!

I have a T. Shirt with this logo on .. I think it says it all 🙂 xx

 

So that just leaves me to wish you all a very Merry Christmas or Happy Holidays whichever you celebrate, make the most of precious time with family and friends. It will be a very quiet time here but my son has his birthday on Christmas Day so that will be our main focus. 

Lots of love Ali xoxoxo 

                                                                                                         

 

 

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20 thoughts on “#Leiomyosarcoma ~ What Comes Next? My Cancer Fight!

  1. You’re are an amazing woman. I’ll be thinking of you! Sending you much love and hugs! xx

  2. Ali, I can’t even imagine how hard this is for you and your family. You are always so upbeat and positive when we speak and I can only imagine you actually feel like throwing all of your toys out of the pram. I’m sending huge amounts of love your way. I hope Christmas and your sons birthday especially is perfect. Always thinking of you. Cxxx

  3. My heart goes out to you, Ali. I will be thinking of you over Christmas. And I just want to say that I am proud to know such a brave and gutsy lady. Keep up the fight! love from Alison x

  4. Thinking of you, Ali. This was such a brave and honest post. Stay strong, enjoy your son’s birthday and have the best Christmas that you can have xx

  5. If only a Christmas Fairy would wave a magic wand for you this Christmas. You are one brave lady. Sending big big hugs and much love, you are in my thoughts and prayers xx

  6. Sending my thoughts and love your way to you and your family. You are one amazing and inspirational lady Ali. Hope you all enjoy your sons birthday and you have a nice Christmas. Xx

  7. Ali, sorry you’ve not had better news but you are such a strong and inspiring person. Thinking of you and hope you have a wonderful Christmas with your family

  8. Your honesty and bravery is inspiring. Wishing you all the best for Christmas as you celebrate your son’s birthday and that things go as well as they can with your treatment.

  9. Sending lots of love, hugs and positive thoughts to you, Ali. Wishing you a peaceful Christmas. I hope your son has a fab Birthday! Xx

  10. Such a moving yet inspirational blog. You so kindly supported me with my book, all I can do in return is to send positive thoughts. I wish you a good Christmas and hope only better things in 2018.

  11. Ali – you’re amazing and an inspiration! Have an amazing Christmas, lovely x

  12. Oh Ali you’re in my thoughts and prayers. So sorry you’re dealing with all of this. ❤️❤️

  13. Ali, I’m so sorry that you are having to go through all of this. I’m in awe of your strength and courage. Sending much love and gentle hugs xxx

  14. Stay strong my friend while we work on that miracle. Have the best Christmas you can and I’ll be with you in spirit. xx

  15. Such an inspiring post Ali as you make me grateful for every moment I have. Sending you love, health and strength x

  16. Ali, you are the most courageous lady i know, and I wish with all my heart a miracle would land on your doorstep.
    I join the lengthy queue of people who hold you dear in their hearts and are mentally holding your hand as you battle on. Your kindness and support has been hugely appreciated by many and I hope 2018 brings you more hope and the elusive treatment you need.
    On the 25th you’ll be very much in my thoughts. Enjoy the day, get the rest your body needs and come back out fighting.
    <3

  17. Ali I can’t believe the courage you have. I am sat here a wreck after reading this and just feel so helpless. I hope you can find some peace at Christmas and pain free time. You won’t be far from my thoughts over the holidays and beyond. With love dear blogging friend, take care. xxxxxxxxx

  18. Ali I can’t believe the courage you have. I am sat here a wreck after reading this and just feel so helpless. I hope you can find some peace at Christmas and pain free time. You won’t be far from my thoughts over the holidays and beyond. With love dear blogging friend, take care. xxxxxxxxx

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