Not sure if you remember I spoke about my daughter having Parosteal Osteosarcoma, again another very rare cancer like ours about seven weeks ago now, well this week she has had her operation on her thigh, this was the removal of her thigh bone and replaced with a Titanium bone and some of the soft tissue., which had some suspicious looking cells. The operations went well on a Tuesday and she is now starting her journey to recovery, she will be discussed next week at an MDT meeting to see if she will need Chemotherapy, but the consultants have said that they got good clear margins which is hopeful.
With the situation and Covid she is having to go through all of this on her own, and being on a ward with patients who are having amputations was a little upsetting, but she has really come into her own with encouragement to the other patients to try their best which they are truly grateful for and has made some amazing friends.
One lady has lost her foot and ankle to Sarcoma but Laura has been so helpful the physio’s are really grateful for all her encouragement, it’s also helping her, the strange thing is it’s women that are more prone to getting a Sarcoma between the ages of 20-40 and then the older generation in their sixth and seventh decade, also children can also get Sarcomas.
They are now hoping to bring this type of Cancer to the attention of the media as a lot get missed by GPs especially now that most doctors are doing virtual or telephone consultations they are being missed, got to get back to face to face consultations, I just thank god that my daughter insisted on seeing her doctor when the pain became so bad.
Anyway thought I would let you know how thing we’re going.
Keep safe
Jean x
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I have wondered how things are. Really pleased to hear that your daughter has come through the operation ok. I’m sure ‘Good clear margins’ are the most beautiful words for you to hear right now.
Now the hard work starts!
As I mentioned in a previous post, my friend had sarcoma of the thighbone over 40 years ago age 26. I remember how upset she was at the prospect of amputation, as that was expected back then. However, Birmingham hospital offered her a relatively new procedure of replacing the diseased bone with titanium plates. It was a relatively long road to recovery, torturous physio etc, but the outcome was successful. I’m sure this procedure has advanced somewhat since then too.
Covid makes it all so much harder. I can’t imagine the additional impact this has had on you all. It sounds like Laura is getting through this by helping others. We all find our way.
I hope Laura continues to do well. Hope you’re looking after yourself too.
Yes not bad myself, but the stress of it all is taking its toll on me.
Laura is now home, and all they have given her is a piece of paper with exercises for knee replacement, well I could of shown her how to do them as I had a total knee replacement five and half years ago, and any physio will have to be done on Zoom.
Consultant saw her yesterday morning to say he was really pleased with the way it went, although she now has a scar from her hip to her knee, and said she is going to wear it with pride as she thought she might of lost her leg, he said that the suspicious part of the Parosteal Osteosarcoma was also removed with good margins, and he is hopeful that once the test comes back on it he feels that it might only need radio therapy and maybe not even that so keeping fingers crossed.
All the best for your daughter Laura and her recovery. What a wonderful strong woman she is, advocating for herself, insisting on seeing a GP and now finding the strength to help others in the ward. Wishing her all the best xxx
Dear Jean, so pleased to hear that it all went well for Laura, and I wish her a speedy recovery, and how wonderful that she is helping other people in the ward, what an amazing young lady, all good wishes to her, and to you and your family. Maz x
She is determined to make sure that other people mostly young women and adults in their sixth and seventh decade understand how important it is to get these type of lumps checked and not just palmed off with it’s a pulled muscle. As my daughter has said the pain is pure evil so how can it be just a pulled muscle!! Thank god she insisted that she have a second opinion.
This is the trouble with these rare type of cancers GPs just don’t understand them, so then it all becomes too late, especially now that everything is done over the phone or FaceTime and Zoom, it’s so very sad that Covid has a lot to answer for especially cancer sufferers.
So glad to hear your daughter made it through the surgery successfully. The results sounds quite hopeful. It sounds like she is quite resilient and will find her path to recovery even with the current challenges. It is great that she is able to reach out and help others despite her own current situation. That demonstrates great strength of character. Laura sounds like a true blessing to have as a daughter.
Sorry I'm a bit late replying but so very leased to hear Laura has had her operation and things are looking very positive. She sounds like a lovely girl helping the other patients with her positivity. Hope her onward journey to complete health isn't too hard and sinful. Best wishes to you all. Franxx
Very Best Wishes to your brave daughter and to you I know you too will be suffering with her,a dreadful disease we don't know about,ours is rare enough .My daughter has a rare condition which was only found after an accident when her head was scanned,the pain and worry for me and her father far exceeds the concern of my P V,especially for hubby who now has both of us with life threatening conditions .My thoughts are with youJean.
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