31-07-2016 07:10 PM
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!
31-07-2016 12:34 AM
Yes waiting seems to always be the name of the game Bibi. Don't they realse how stressful it all is ?? The longest time I've had to wait was for my skin biopsies ( on some sun damaged skin ) 8 weeks !!! The consultant told me , you will hear from us in 3/8 weeks . It was 8 weeks to the day !! I always go on the theory that no news is good news !!!
Hopefully the pills will be working in the meantime .... fingers crossed !!!
29-07-2016 08:15 AM
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
28-07-2016 07:28 PM - edited 31-07-2016 12:16 AM
Oh my goodness Tat , no wonder you are annoyed , it all seems to be taking an age . Hopefully your CNS can chivvy them along for you . I know mine was brilliant at getting things sorted , when I had one .
So sorry to hear about your friend , that is really devastating news to be given . As Bibi says it is amazing how much asbestos was about in old buildings .
Hubby had his scan on Tuesday and has a small clot near his groin , will get appointment for the " Clot Clinic " in the next two weeks and must keep taking the blood thinners until then . Hopefully as it is small it will not be too problematic and the drugs will do their stuff !!! So just pottering and taking it gently until we know more !!!
I always remember camping in France ,on the west coast one year , with friends and their children . We were driving down a road when we passed these nudists riding their bicycles along , the kids were in hysterics at the rudie nudies !!! LOL .
Hope everyone has a better week .
24-07-2016 08:57 AM
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
23-07-2016 09:30 PM
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.
23-07-2016 07:29 AM
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
22-07-2016 09:03 PM
Well today has not been a good day !! Poor hubby had blood test that confirms he almost certainly has a DVT in his right leg !!! On blood thinners and now his turn to wait for an ultrasound scan !!! We are both really upset and worried about this !! If not DVT , then blood test results could mean heart failure or cancer , so bum choices whatever !!!
Hope everyone else has had a better day .
21-07-2016 10:13 PM
Hi Kerri ,
Congratulations on your 25th Wedding Anniversary , what a shame that you were sick after your special meal !!
Did you get any joy from your CNS today ? Was she able to chase up the biopsy date for you .Really hope it is very soon, so that you can get some answers .
I have my ultra sound scan tomorrow , but am not sure what it will accomplish . At least it will hopefully establish what the lump is ( and prove it is NOT my ribs ) even if they decide they can't do anything about it now it is a year old !!! Happy birthday dear lump... Just wish they had aspirated it when it first appeared , instead of worrying about infection .
Your cottage in Dorset sounds great . I love the sea and a beach to walk on . In fact we went to Filey today and did just that . I love looking for "stuff " as we walk along and fill my pockets . Hubby thinks I am bonkers !! Thought I was even more bonkers when I bought miniscule ammonites for my dolls' house . LOL
How did the Sarcoma Support group go ? Hope it was really successful .
Please keep in touch and let me know how the biopsies go.......
20-07-2016 10:09 PM
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
12-07-2016 10:42 AM
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
11-07-2016 07:40 PM
Just posting an update to help my keep my thread alive and the word Angiosarcoma in focus .
Firstly we got to Portugal ( complete with travel insurance ) and had a great time . The apartment was great , the weather brill and I enjoyed the freedom of being flat and fabulous on the beach . It was great to chill and try to forget all the medical issues !!
I saw my oncologist , for my 4 monthly check up and x-ray today and talked about my haematoma , lump , whatever !!! I have been told in turn it is my ribs , scar tissue , body fat , haematoma . It has been aspirated under ultrasound and washed out under anaesthetic , but has refilled both times .
He looked at it , prodded and poked and importantly listened to me . Result is that he has arranged for me to have an ultrasound . I am really pleased as at least it means they will look at it again and may come to some conclusion as to what they can do with it . After a year I am sooooo fed up of it !!!
Hope every one else is keeping well .
28-03-2016 11:28 PM - edited 28-03-2016 11:40 PM
Thanks for the understanding Tat , have decided I am going to just try and chill for the moment ,go to Portugal enjoy some sunshine and then when I get back will decide what I am going to do .
One plan is to look at my records through my GP and see what has been recorded officially , as opposed to being told verbally . The other thing I want to do is talk to my Oncologist and see what is actually shown on my x-rays and CT scans ..... when I am armed with info , I will decide the next steps .
Hope you have had a good Easter with all the family .
Have just been to see " The Railway Children " , the film version of the play in the York Railway Museum . Thought it was brilliant and really enjoyed it .
Hugs, Jill xxxx
22-03-2016 03:47 PM
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
21-03-2016 09:16 PM - edited 21-03-2016 09:17 PM
Pardon me whilst I rant !!!! Grrrrrrrrrrrrrrrrrrr
Went for my appointment today with the breast surgeon . Lovely old surgeon retired at Christmas , so got a registrar today , never seen me before or treated me . Looks at my haematoma/ swelling and promptly tells me it is just scar tissue !!! I try to explain that previous ultrasounds show that it is not .... he says blood clots do not last this long withouy being absorbed , so must just be scar tissue !!!! It is like a large , fat sausage and is about 6/8 inches long running vertically down from my mx scar , along my ribs .....no surgery in this area so how can it be scar tissue ??
It has been drained once , and also washed out under a general anaesthetic , when the surgeon said she had never seen any thing like it before and it was very unusual ....it was flat on both occasions after the draining , before it refilled . It may be hardened blood/ fluid etc , but I told him I did not believe it was scar tissue !! He still maintained it was !!! I was so angry and frustrated I could have cried .
The only plus to the whole sorry episode was that he did say they would keep an eye on it , as the angiosarcoma could recurr anywhere , and they would check it again in 6 months .
Anyway enough of my moans .... well done Tat on finishing your marathon of rads ..... you must be sooo relieved . Large glass of something called for to celebrate , I think .
Big hugs ,
19-03-2016 05:35 PM
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
19-03-2016 12:03 AM
Hi Tat ,
That is just the best, most fantastic news !! Plus just one more rads on Monday and you are cooked ...yeh !! Glad they have a good observation plan set up for you too . That is brilliant , and very reassuring .
I have an appointment with the surgeon on Monday . Original appointment was for 27th April ( right in the middle of holiday in Portugal ) typical !! So rang to ask about the chance of a cancellation and got one on Monday . Yeh !! Will see what he has to say about my haematoma , if anything . I expect " just have to put up with it " due to risk of infection / sepsis etc . but at least will feel better that someone has looked at it. Then roll on Portugal and some sunshine .
Here's to many more NEDs for us both .
18-03-2016 05:14 PM
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
13-03-2016 05:02 PM
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