Glad someone is listening to you Jill. Also pleased you enjoyed your hol. We had to cancel our hols last year & my poor HB is on his knees having gone without a hol for 15 months. We are going in Sept & can’t wait xx
Hi Jill. I read this post after your post on the FB page. I’m so pleased you got your holiday and had a good time and hoping you have many, many more :).
I still have no appt for the biopsy 12 days after appt with Onc. Will call my CNS tomorrow. Today is our 25th wedding anniversary and we had a lovely pub meal yesterday evening, but I was terribly sick between 2 and 5 am, so today was a bit of an anticlimax! We’re at our cottage in Dorset - my ‘happy place’ (if you discount the local pub!). We had a rental property and decided to sell it after my dx and buy a little cottage near my mother in law. We spent yesterday at the coast, accidentally walking into the naturist end of Ringstead beach…very odd, and good for a giggle, but the rest was good for the soul 
Last weekend we threw a big party for our kids who turned 18 and 21 this year. We had flair bartenders which was fun, but it was a lot of work, including the breakfast (well, brunch) for my son’s uni mates who stayed over. So it was lovely to escape down here with just our furry baby to look after! Lots more walking and beaches planned - really helps me with all the uncertainty at the moment and generally.
Not long now until your holiday, Bibi! Hope you have a wonderful family time together. It’s easy to underestimate how much our dx and treatment affects our families and I’m sure you are all ready for some R&R together xx
Oh dear Jill v.sorry to hear that. Just what you both don’t need, lots more hospital appts. Fingers crossed it isn’t too serious. Tat, your Dorset house sounds lovely & you two parading into the rudey nudey area (as my sister used to call it when she was younger) made me snigger. Congrats on your anniversary xx
Oh Jill, what a worry 
Really hoping it’s a DVT and the blood thinners sort it. And then I think it’s time you caught a break and life was kind to you both!
Filey was one of our most favourite places as a family when we lived in Yorkshire, so many happy hours on that beach and rock pooling! We once saw the lifeboat being launched and our son was so excited he talked about nothing else for weeks!
We’ve been decorating and helping my mother in law and husband’s aunt with their gardens, but today was a day off and we went to Tyneham village. It was cleared in 1943 so the allies could prepare for the Normandy landings and the locals were told they could return after the war, but the govt decided to keep it within the military firing ranges and it has never been lived in since. We walked to the beach at Wolbarrow in the sea mist and fried on the way back in full sun. Late pub lunch (no after effects!) on the way home and a lovely day.
Rudie nudie is a term well used in my family, Bibi 
No biopsy appt yet, but my CNS is on it. The radiographers need to review the MRI & CT images to decide if they can biopsy it, but I’m still annoyed it’s all taking so long.
Another bit of bad news yesterday that a friend of ours has been dx with mesothelioma - lung cancer from exposure to asbestos. Incurable and inoperable. We’ve known this couple for nearly 30 years and it’s utterly devastating FUAS and FU cancer.
Yes, certainly does seem an awfully long time to leave you in limbo. Glad you’re managing to divert yourself with your Two go Mad in Dorset week. You certainly hit the jackpot of English weather! Terribly sorry to hear about your friend. What devastating news. You think mesothelioma is a thing of the past, but I certainly worked in Victorian hospitals in my youth, which were later demolished & found to have asbestos in. I would think some teachers & anyone else in the public sector could have been exposed. Dreadful. Another example of humans creating something toxic & life threatening to themselves. Jill hope HB is ok. xx
Hi Jill pleased to hear they have identified the clot & he has started treatment. Two weeks seems a long time to wait under the circs … you don’t realise what the NHS cash shortage is like until you’re in the system. I still can’t understand why people have to wait 2-3 weeks for mammo results when we know it can be done same day. You just think, work late & catch up with your backlog guys! xx
Hi girls. So, a month after finding out there was something dodgy on my scans I have an MRI appt for 8th August. I guess I need to get used to taking up my place on the conveyor belt and awaiting next steps without panicking. So easy to say and an absolute breeze to do. Not!! Had a wonderful lunch with old school friends today, so all loved up and relaxed
Glad there’s something happening for your hubby, Jill, and hope the appt comes through really quickly. Why don’t you have a sarcoma CNS now??
I get naturism in your own home and, possibly, garden if it’s not overlooked, but being a rudie nudie in public is beyond my understanding andCYCLING nude is just weird! I do hope they weren’t rental bikes… Euuwww!
Corks! Naked cycling sounds positively dangerous, as well as totally unhygienic. Wonder if it’s bring your own saddle ha ha xx
How did your review go on Saturday, Jill? Any answers re your non-fluid filled, ‘is it or isn’t it’ haematoma??
I hope your hubby finally has an appointment for the ‘Clot’ clinic? That name would be the subject of much ribbing in our house
Know the feeling of falling between two stools re support, Jill. The BCN assigned to me was hopeless; in fairness to her she’d never had a primary AS patient before so didn’t know how to support me, but she didn’t try very hard either! It is such an extra burden having to work out who to contact for answers or being flipped back and forth between departments. I had a problem after my surgery with the breast surgeon clearly trying to make sure he was the lead for my care, but I raised it with my sarcoma consultant and he apologised and said they would be sorting out their protocol for cooperation with the breast unit. Apparently they work very well with the orthopaedic hospital for bone sarcomas but hadn’t sorted cooperation with the breast unit. Lovely to be the guinea ig for that one. Not!! xxx
Wow great news Jill. Keep well xx
Hi Jill, hope you get good results and have been clear for over a year. Can I ask why you say rads caused it?
Fantastic news, Jill! I am so happy that you have been stable for so long. Long may it continue. You are amazing! xxx
Hi Jill, I have been looking everywhere for info on this and have found hardly any! Basically I am waiting for results from a biopsy I had on Monday, but I wanted to ask that if I had this radiation induced angiosarcoma would the bruising come and go? For example in January 2017 I came out in some weird bruising went to breast clinic had ultrasound all ok was sent happily on my way (I was pregnant at the time unfortunately I miscarried) fast forward 18 months and this bruising reappears on my boob once again, quite severe not painful just strange I am once again pregnant anyway went to breast clinic had ultrasound that was all ok then my consultant decided to do this biopsy but the thing is the bruising has pretty much Gone again now? Surely if I had this it wouldn’t disappear but would stay and progressively get worse? Sorry for waffling on.
Lyndsey xx