Hi Jill,
Really sorry to read about your bout of amnesia. That must have been shocking! Fingers crossed they are correct and it won’t happen again.
I hope you weren’t doing anything really fun on Monday morning as it would be a shame not to remember that 
I also hope you are recovering well after the op. I know my local hospital has connections to a charity that offers services to cancer patients such as massage and aromatherapy, with the aim of reducing stress and promoting relaxation - maybe you have one near you?
Take care, Emxx
Hi Jill
I’m really pleased that the wait is nearly over, and hope all goes well tomorrow.
I have just got back from a holiday in the country - I didn’t realise how much I needed one until I was there!
Take care and let us know how you get on.
Emxx
Hi Jill
Thank you for posting. I’m very glad indeed that there was some good news! And I know it’s horrible, having to go through it all over again, but at least they know what they are dealing with and are on the case. I hope between now and 8th July you will be able to relax a bit and maybe enjoy some time in this glorious sun
Take care,
Emxx
Hi Jill
I think you are right that getting it over with will be fo the best, then you can put all your effort into getting over both ops together. I know it’s not fun being called in at short notice - when I went in for lumpectomy they phoned to call me in when I was walking round Sainsburys, and now I can never look at the pasta aisle in the same way
When the ops are done and they have clear margins will the treatment be complete?
My lymphedema seems to be everywhere, although it is worst in my arm and side of axillary clearance (I still have no feeling in the back of my arm and my armpit). I have seen the local clinic and they were great and ordered me a compression garment to help across my chest, but I think they are just overwhelmed so it is such a long wait. They ordered it in February and I don’t have it yet 
Now I have got an appointment for St George’s hospital (Wandsworth?) but that isn’t until the end of August. As we know, the waiting is not fun.
I will be thinking of you on the 1st, and I am sure it will go really well. Stay strong.
Best wishes, Emxx
Hi Jill
Thanks for posting. I’m glad you are ok and hope that they get those clear margins this time. Would be great if this surgery can clear up any lingering problems from the first one too.
Wishing you a speedy recovery.
Emxx
That is fantastic news Jill, so pleased for you. Xx
That really is good news Jill!
I’m so pleased for you and your family. I hope there is some serious celebrating in your house this weekend
Take care,
Emxx
Hi Jill
I’m really pleased it went well, and although I know you need to stay vigilent I hope that life can at least get back to being a bit more ‘normal’ (whatever that is!).
My appointment at St Georges has been brought forward to the 12th, although it has kind of been overshadowed now by haematology and cardiology appointments - my blood clot still hasn’t gone, and a recent ecg is showing that my heart is enlarged. After my WLE I decided not to go ahead with radiotherapy, not least because I was worried about the possibility of angiosarcoma given that I already had lymphedema. Now with everything else I am more relieved than ever that I decided against it!
I hope your physio comes through soon and that it really helps. Stay well Jill
Best wishes, Emxx
Hi Jill, I’ve just found this thread and part of me wishes I hadn’t I believe we’ve ‘met’ via the Angiosarcoma UK FB page… not the group anyone wants to belong to, as you said! I feel very emotional reading what you’ve been through in the past year, especially, but on top of bc and thyroid cancer and yet you appear so ‘together’ and upbeat. I’m sure you have your moments/days/weeks, but when I grow up (got to happen soon, I’m already 51!) I want to be just like you 
I had my mx on the 26th and am doing OK physically, even been on a few walks with my husband and our lab (followed by lengthy naps!) which helps a lot. I’m currently in the dreaded waiting phase for pathology results but received an appointment letter yesterday and will learn my fate on Monday 14th. My emotional state is a different matter - I’m pretty well emotionally incontinent at the moment, see-sawing between feeling really positive or in complete denial or planning my funeral! I have masses of support, but how can you put into words how alone you feel facing AS? My children both have important years academically and I feel so angry that this (long delayed) diagnosis of primary AS has come now when they have enough on their minds already. And then the knowledge that the worry will never completely go because of the nature of AS…
I feel a little better for having acknowledged my fears. Trying to keep things upbeat at home for my daughter’s sake is hard at times (my son is away at uni so somewhat cushioned from the day to day happenings) so it is a relief to be able to let it all hang out, so to speak, on here.
Have you now had the results of your most recent x-ray, Jill?
Kerri xx
HI
I have also lost the PM function somewhere. I know , careless of me, but I’ve lost worse before now! Jill, I’m so happy to see that you are still NED and the chest xrays were clear. You little wonder woman, you! I realise that it’s impossible to escape the fear of return but I hope you are enjoying this brilliant news!
Much love
Rose xx
Thanks, Lizzy :). That makes sense - happy to wait for a PM button if it keeps trolls off the forum
T4T x
Just wanted to say I hope you have something lovely planned for tomorrow, Jill, that doesn’t involve hospitals or AS in any way, and your Christmas is full of fun and laughter with the people who mean the most to you.
K xxx
You’ve been through the year from hell, Jill. Four lots of surgery, a neverending heap of stress and anxiety and yet you are NED; you give me hope against this dreadful disease.
Here’s to 2016 without the hateful angiosarcoma in it. And you may be flat, but you are most definitely fabulous, girl!
Hugs, Tat xx
Hi Jill
Just nipped in to see how you are doing and I’m so pleased to hear you’re NED at the moment, although I know the fear and worry are always present. I just can’t believe how positive you manage to be throughout all of this, you really are an amazing woman. I’m sending you every single good wish and positive thought in my possession for a happy and healthy year.
Lots of love and take very good care of yourself
xx
Sharon
Hi Jill. Good to see you posting, hope you are feeling well and managing to enjoy yourself despite the constant background anxiety.
When you say ‘they expect it to metastasise to the lungs’ I hope that means IF it metastasises the most likely place is the lungs??? I still haven’t been given any view on prognosis despite asking direct questions and that is extremely hard to live with. Sounds like your team are a bit more open about all the possibilities. I’d definitely prefer that, rather than filling in the gaps myself with the limited published data I’ve found!
I am due rad number 21/33 today. It’s hard going, very sore, very tired and not a little fed up! I was munching a lot of painkillers and seriously questioning whether I could continue rads until they gave me some PolyMem dressings yesterday. The relief from soreness/itching/pain has given me hope I can finish the course and the tiredness will mean I put up less of a struggle being bundled into the car to rads!!
Please let us know when you have the results of your chest x-ray? Tat x♥x
I know what you mean about side stepping the question and the ‘everyone’s different’ comment could have come straight from my CNS’s mouth! I’m not criticising them as they are working on limited data too, but it’s not much of a help for us trying to work out how to live with this awful cancer…
Rad number 22 today after a day off yesterday while the machine was serviced. The dressings are nothing short of miraculous! I’ve carried on taking anti inflammatories for the swelling, but no other pain relief needed. My energy levels have been near normal the past couple of days, possibly because I’m not in pain and am sleeping better. All in all, I’m much more hopeful of finishing the rads now. My onc wants a baseline CT scan so next Weds will be a long day with rads follwed by 2 hours in the CT unit chugging down more contrast liquid. Good job I don’t have a life outside of cancer at the moment!! Excited to see signs of spring now though and planning to make up for lost time this summer Hope you manage to get away too. Big hug and, as the Americans on the AS FB page say, FUAS!! xxx
Second class post? Unbelievable!! Utterly fab result, though, when the letter eventually arrived
The fear of recurrence or mets is the biggest issue, without a doubt. I am accessing some psychological support - mindfulness is definitely an option I will explore, anything that helps to live with AS is worth looking into. We are also making some changes to our life to do more of the things we enjoy - I’m determined to live rather than wait, but it’s a struggle some days.
I have 5 more rads to go!! There was a time when I doubted I could complete the course, but I know I will now. It’s been gruelling, but I gave up trying to be brave and started taking regular painkillers around the half way mark and, with the PolyMem dressing, that made it seem less daunting. I am very tired, but my OH says I put up less of a fight now when he bundles me into the car! I have a ‘stash’ of PolyMem to keep me going for after rads - so excited for a week Monday when I don’t have to go to plan my day around going to the hospital!!
I’m seeing my onc on Friday and I hope the CT results are in. Although she called it a baseline scan I can’t help but worry…! The plan is 3 monthly CTs going forward.
Hope you’ve booked that holiday to Portugal! Some vino verde and grilled sardines would hit the spot nicely
Stay in touch and report in on your adventures and NEDs. Hugs back at you and FUAS, of course!! xxx
Hi Jill, CT scan shows NED In 8 weeks’ time, once my chest wall has settled after rads, I will have an MRI and then 3 monthly CT scans for at least 2 years. It feels so good to have that first NED under my belt. Here’s to many more for both of us Tat xx
I’m soooo pleased you have a holiday booked! I love Portugal (especially the food!) and you so deserve a relaxing break. Hope you can leave it all behind and just enjoy yourselves for a while. We’re off to Devon for a long weekend after Easter - not quite Portugal, but a start to getting our lives back!!
Your haematoma sounds awful - I dont know anything about the management and treatment of them, but there has to be something else they can try? So glad you only have to wait until Monday for your appointment and, hopefully, a plan. Do post an update, please? The FB groups have been a bit sad recently so I love to hear good news
Gentle hugs, Jill. Tat xx
Rant away, Jill, I’d be doing the same in those circumstances! I know how much you were hoping this appointment might give answers and some relief after all this time. Do you have a sarcoma CNS? Mine are great at finding ways through the hospital bureaucracy and happily sort out appointments etc. Another route might be to get another referral through your GP? Big hug xx