I’m Back! A full update and a couple of requests .. xxx

Hello all you wonderful people .. have you missed me!? I’ve certainly missed being here so let me try and fill you in on what has been happening for the last three months!

There are a few gruesome pics so close your eyes over those 🙂 x

As some of you may be aware the cancer has spread to my bones. I had seen a copy of the MRI scan which clearly showed both femurs were virtually ‘eaten’ away so any pressure on them was risky. Anyway I potter around at home with a frame (think elderly lady with a zimmer!) on that dreadful evening in January I stood as usual with the frame to go to bed, as soon as it happened I knew my leg had broken, the sickening crunch and excruciating pain may have been a clue. So, a frantic call to 999 ensued, me screaming and my poor other half and son not having any idea what to do to help. Three further calls and over two hours later the emergency services arrived. I will cut short how awful the journey was from my house to the hospital nearly an hour away. I was unable to move and sadly the ambulance crew weren’t the most sympathetic. I finally arrived at the emergency department about 4am, at last they could pump me full of pain relief. An x-ray confirmed a broken femur.

The following day I had surgery to insert a rod and screw into the remaining femur and the surgeon removed as much of the cancer as possible so I am left with a scar thigh to knee and a loss of muscle. Despite the initial pain and dangerously low blood counts which required three bags of blood I made quite good progress. Then disaster struck again, the physio’s arrived to start my exercises, I rolled over in bed and bang the other leg broke. More x-rays and CT scans revealed the femur and hip socket had broken so I then underwent another surgery to have a total hip replacement plus tumour removal. This resulted in a lot more pain than the other leg. The problem soon arose that the nursing staff would ask which was my ‘bad’ leg so they knew to be careful .. I don’t think they had come across a patient with both legs broken at the same time!

Anyway, I continued to heal, very slowly started walking tentatively with a frame even though it was extremely painful I knew if I wanted to get home I needed to do it. Then without warning I woke one morning feeling horrendous, I was hot/cold/vomiting/diarrhoea and barely coherent. Thankfully there was a young new doctor on the ward that day who immediately realised what was wrong and I was subjected to so many tests I couldn’t count. Very quickly IV antibiotics and fluids were put up, my observations became quarter hourly .. my temperature continued to rise to extreme levels and I remember them trying everything to cool me down. I was in that state for a couple of days until it became clear my first wound which had since healed and had the stitches removed was full of sepsis. I was whisked back to theatre where they re-opened the scar, drained the poison and then left the wound open with a big drain pump attached. All the samples taken had to be sent to microbiology so the correct treatment could commence. After a couple of days I was taken back to theatre to have it drained and washed out again .. this time I was left open but with a special ‘Pico’ dressing on it which had a tiny hand held pump. Finally a couple of days after that I went back again, they deemed it satisfactory to close and put normal dressings on it. But as you can see from the pictures it took a lot of effort over a long time! I have no doubt and I was later told the quick actions of that Dr saved my life that day .. so Victor, as always thank you from the bottom of my heart.

So you may ask did the leg continue to heal nicely .. no, it has taken a very long time to stop oozing, I am on these awful antibiotics for the next 6 months! And I needed two more bags of blood to keep me at safe levels.I can however walk very slowly with the frame, steps are a challenge too far at the moment but hopefully I might manage them one day.

I needed so many blood tests or cannulas for IV’s etc that my arms, wrists, hands gave out and they had to succumb to using the vein in my groin .. that was more painful than everything else compared!

Before I left the hospital I had further CT and MRI scans to see where we go with any further cancer treatment. I had sessions of radiotherapy on the left leg (hence why it doesn’t heal) while I was an inpatient. Whether I will do the same on the right leg remains to be seen, if it helps the pain maybe but it won’t add to my survival. Besides I have bone mets in my shoulders, spine and sternum as well so it can’t be contained. One of the scans did highlight ‘something’ on my kidney .. at the moment we are waiting until my next scan to see if it has grown considerably or if there is any point in zapping it. Watch this space!

While I was in hospital I was treated wonderfully by all the staff, after 3 months I had become part of the furniture! The oncology team, the surgical team were all fantastic. I was given a lot of support from the hospice team, they juggled my medication to sch a fine line that I could be almost pain free which I haven’t been for so long. They will follow me home .. I have the community hospice care or if needed access to the crisis team so that is quite a relief. I’m under no illusions my time is limited, depending on treatment and the speed the leiomyosarcoma spreads it’s likely to be less than a year. Of course nobody has taken into account my stubbornness and determination to keep fighting. I’m currently taking a cocktail of medicine on a regular basis, injecting myself in the stomach 3 times a day (that hurts!) and I have a chemo shot every 4 weeks so I’m trying my best. Some days pass in a blur of sleep others I suffer the dire vomiting etc. My highlight of the day is filling the ‘sharps’ bin lol.

So there you have it .. not my idea of a fun 3 months but I’m back now I hope to start reading/reviewing again soon. And while I was away I can’t believe I was nominated in the #BloggersBash awards as the most inspirational blogger! So a huge thanks to everyone who nominated me and if anyone can spare a vote by following the link I would be eternally grateful. This is a HUGE honour and means so much. 

Voting is Now OPEN for the Annual Bloggers Bash Awards @BloggersBash

 

And while I’m here I am being ultra cheeky or hopeful that some of you may be generous enough to donate to my cause. My house has a super view and the thing that got me home was the longing to sit outside to enjoy it. We are hoping to build wheelchair friendly decking along with french doors so I can enjoy what time remains. Any donation no matter how small will be gratefully accepted and appreciated.

https://www.justgiving.com/crowdfunding/ali-drew-leiomyosarcoma 

Love to all .. great to be back and thanks for being so loyal and all the supportive messages xxxx

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30 thoughts on “I’m Back! A full update and a couple of requests .. xxx

    • It’s only by everyone’s support that I can keep fighting, on days when I feel like giving up I just read the messages and know there are so many people behind me. Thank you for everything xx

  1. You have been so missed, Ali. As usual, you made me smile. Yes, even this post with the gruesome pics! You are one helluva an inspiration! 🙂 Well done, lovely. Am off to have a little share and make a donation. Keep fighting, Ali! xxx

    • Haha, I did give the option to close your eyes. Thank you for everything it’s appreciated more than you know xx

  2. All the best for your treatment, Ali. Fingers crossed for the bloggers award – you really are inspirational so it would be a very well deserved prize xxx

  3. Oh, Ali. I am beyond thrilled to know you have returned home, but at a loss for words. You are such a determined and beautiful soul. I want to reach through this screen and gently squeeze you <3 Congrats on the very well deserved nomination. Hopping over to the crowdfunding now. Hugs – xx

    • Being home is heaven, it’s amazing what we take for granted. Thanks for all your kindness, love & support. You take care, hugs xx

  4. It is so lovely to hear from you, you have been missed. I wish I could take away all the awfulness you are going through. You are incredibly brave. I’m thrilled you are nominated for the most inspirational blogger and if anyone deserves it it is you. Sending much love xxx

    • Just knowing people care & have missed me really helps. Thank you lovely lady xx

  5. Love you, missus! I’ll donate as soon as I get back online (on phone at moment – no internet!)
    Good luck with that award. If anyone deserves it it’s you. xx

    • Thanks so much my lovely, that’s so kind. I appreciate everything you have done. Much love xx

  6. Lovely to see you back Ali. You are truly inspirational and so strong. I confess to having missed your stunning photos –a little bit of beauty amongst all the madness. Fight on!
    Lots of love xx

    • Thanks so much, yes I have missed the opportunity for photos, not much excitement or anything picturesque in hospital. I’ll be back to it soon hopefully xx

  7. Lovely to see you back blogging and, as ever, fighting. You got my vote lovely, take care, chin up and stay as strong as you can. Much love and hugs xx

    • Hello my lovely, I will take it slowly but it feels good to be back. I wish we could both win it’s a bit unfair being in the same category lol but you have my vote! Keep going, we are both strong. Thanks for all the love & support xxx

  8. It’s great to see you back Alison you have been through so much but your post is so positive. Congratulations on your well deserved nomination x

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