Geez. Glad I didn’t know that yesterday morning. No wonder they reacted the way they did. The number of randoms wanting a look as a ‘never seen anything like it before’ should have alerted me.
. MrP was quite umm, nursing his delicate stomach 
And taking Xarelto or similar usually requires PPI although I was already on those prior. Rheumatologist said that a Dr taking me off X would be an idiot.
. She's pretty blunt like that. Sadly my now 38 year old niece has followed my path and is on Warfarin. She developed her DVT in her abdomen, but already had the high markers so was on aspirin at the time. Whatever I get, she follows. We share the same rheumatologist. But - nothing stops her. She's just been awarded South Australia's Young Tall Poppy and will go on to the National Competion later this year.
When I developed a large clot in axilary and branchial viens the vascular surgeon, on telling me I would be on Xarelto asked if I did any motorsports. I said I rode a bike (motorcycle). His response was "Don't". At the time there was no reversal drug for xeralto.
Yes please!I took photos.
My son as a 10 year old kept throwing out his shoulder when tossing a basketball. He was banned from playing for a year or so but physio fixed it. He blamed it on us when we may have swung him round as a child. Was rather interested to see him doing likewise with his own.
I'm so conscious of making sure no one picks the kids up by their arms, far too many horror stories of kids popping elbows and shoulder.
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Still isn't in general use. Its the one downfall. But seriously if it can get bad biting your tongue then maybe being a biker isn't so risky
I was only on it for 7 months until clot cleared. Location of clot meant it would travel to lungs if it moved. Painful I was told.Still isn't in general use. Its the one downfall. But seriously if it can get bad biting your tongue then maybe a biker isn't so risky
I am all good now Thankyou. Just a bit scared to eat to be honest. It wasn't like I was distracted, talking or rushed. It just happened.
You're a heavy biter? Me too.I am all good now Thankyou. Just a bit scared to eat to be honest. It wasn't like I was distracted, talking or rushed. It just happened.
. Thanks to the hospital kitchen staff for making soft foods for me when the whole roof of my mouth peeled off after less than 2 hrs on treatment. Thanks to Mr Seat 0A for looking after me when I was very low, and for isolating with me so I did not get any infections, keeping me company and cheering me up, cooking, cleaning, shopping and everything else. Thanks to my mum, daughter and granddaughter for isolation busting phone calls and video calls to boost morale. Thanks to my darling PT Pip (RIP) who made a special exercise through chemo program for me, and broke all the isolation rules to pop past the hospital with coconut mango sago pudding. Thanks to all my kind friends who brought me food (that I mainly could not eat) and books and gave me podcast and TV recommendations to help pass the time, and stood outside my windows and talked to me. thanks to Covid for teaching us all these things to cope with isolation. Thanks to family far away for What’s App messages and phone and video calls despite weird time zones, especially Seat Son and my two fantastic sisters-in-law and various nieces. Thanks to all the kind people on here who cheered me on my way. Thanks to anyone I forgot to thank.
Congratulations @Seat0B . Despite all the help and wonderfully clever people who invent the treatment we also make our own luck. Thank you for sharing your journey and for offering support.Just on a year ago I left hospital after a 5 day intensive inpatient course of cladribine infusions to treat hairy cell leukaemia. It is not an experience I am keen to repeat.
That said, as I enjoy my remission from the HCL, today I want to give my thanks to everyone involved. Thanks to the researchers who found this targeted immunotherapy and all the patients who went in clinical trials to find out that it was safe and effective. Thanks to the drug companies for making it. Thanks to the TGA for approving it for use in Australia, and the Government for making it available on the PBS and DVA schedules. Thanks to DVA for paying my costs. Thanks to Dr Pati, my wonderful haematologist and Dr Malik, my GP for taking care of me so well. Thanks to all the blood collection technicians, and the pathologists and lab staff who tested my blood samples - sometimes as often as twice a day. Thanks to the ACT government for the wonderful myDHR app so I got my results in table and graph format within 3 hrs or less, every single time. Thanks to the absolutely kind and compassionate chemo nurses who made it a bit less scary and a bit more tolerable. Thanks to the general nurses, even if many of them overdid the chemo precautions
Yes, it takes a lot of people to get one cancer patient into remission, and I appreciate you all.
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I second this after 2 knee replacements and a shoulder reconstruction. Surgeon gets you up to the starting gate. Physio makes it possible for you to get normal motion - or near normal. Personal trainer/gym program helps you maintain that. The only way I know to get a good result is to do all three.
