Afternoon my MPN friends. Not been on here for a while, but had to let you know got through the post this morning from the NHS seven covid tests and a letter to say that I had been identified as being a person who has an illness that should I get Covid could become very unwell and that now if I do get Covid and tested positive I am entitled to the anti viral drugs. Well you could of knocked me down with a feather I was that excited 🤪 but just pleased that I had not been forgotten for once. All my bloods are well controlled, with Hydroxycarbamide had a little blip where the white blood count went very low but all is OK now, and am still doing the Government and ONS bloods and swabs and have good amounts of antibodies and thats after four jabs, long may it last.
On another note those of you who might remember my post from two and a half years ago about my Daughter having Parosteal Osteosarcoma in her thigh and that she had to have it removed and a Titanium one put in place, then unfortunately although a low grade Sarcoma it went to her lungs and has been watch and wait, and CT scans every few months plus a trial at the Sarah Cannon research institute for new drugs which unfortunately she did not meet the criteria of improvement with her lungs so basically she has been getting on with her life and her children . Well unfortunately her appointment last October at Stanmore got cancelled and they never made another appointment for her, and she noticed on her leg another lump and they thought it was just metal work to the knee and were not unduly worried!!!! This being said over a telephone conversation. Well a year later the lump started to hurt so she chased her Sarcoma nurse as she was worried, she in turn got her up to London to get an MRI and biopsy done immediately, and low and behold yes you got it Parosteal Sarcoma has come back but just above her knee but soft tissue this time. We are all devastated as she now is back up at Stanmore on the 16th August to have the Tumour, Rod and now her knee removed and a knew rod and a knee replacement and she is only 41.
They seem to think the first time when they removed the tumour some of it skipped into the soft tissue which should of never happened as its so low grade, plus they said they got clear margins but my daughter is a very, very rare exception that this has happened too. So now life for her is uncertain as if this can spread as easily as this what will happen next for her as it was and is Parosteal Osteosarcoma survivable or so we thought.
Anyway my friends I do hope you are all keeping well, as well as we all can.
Just thought I would share this with you all.
Love
Jean xx
First charity donation and I am buzzing
From a concerned and worried mum.
The first 7 months after diagnosis. Feeling better in myself.
