Strange day, no good news, but feel at peace with the decision we've made... Sarcoma consultant was much more 'human' this time and my question to the nurse on Friday had clearly got back to him He apologised and said he has called a meeting to sort out the communications between departments in breast cases (the numbers of radiation induced AS are increasing) and he is most definitely leading my care! I got the impression, as did OH, that he would have taken the rib section during the mx as wide margins are the most important thing in sarcoma surgery. However, we are where we are. He confirmed that the MDT recommend rads as the least invasive and debilitating option first. There isn't much of a choice, really, but that's the deal with AS. It could come back in the same place or anywhere in my soft tissue with or without the rib surgery. Having had 16+ months to set up shop prior to surgery it could have travelled already, although scans are clear for now and I have to hold on to that.
I have decided I will go for rads first. The op would stop me doing things I enjoy, possibly for a long time, and without any guarantee of a 'cure'. I need to get on with my life, work out how I am going to live with the anxiety and make the most of the good health I have for now and, hopefully, well into the future. Thanks for all your crazy humour and support, ladies. Benchland is a part of my life now - I picture every emotion as a bench!! Keep it up Tat xxx
Thanks all Bl@@dy terrified about appt tomorrow, but clearer about what questions to ask re options. Looking into getting a second opinion too, just worried at yet more delays before further treatment.... Angiosarcoma Sucks bench has taken a beating this weekend
Took son back to uni today (final year) , daughter revising for mocks, so tons of stress chez Tat. Benchland Brides/Camels Cause Carnage/Norcambe Nuptials wedding planning distractions most welcome, so keep the ideas coming - no pressure! xxxx
ES sent me a text earlier that made me laugh. It seems fitting for Benchland, so I'll share it with you in he hope it makes you smile too:
"I'm suffering from mood poisoning. It must have been something I hate" (eg incompetence from medics? BC? Ta'poxy'fen? Lynn? Someone looking at us in a funny tone of voice, someone NOT looking at us.....need I go on? 😜)
I'll be thinking of you tomorrow, T4T. x
Parachuting? Who said anything about parachuting? No, no, no, no! There will be no parachuting, I draw the line there. It is not happening. 23 years ago I took my first aeroplane flight and had to face the second in order to get home! I swore then that my feet would never EVER leave the ground again and they won't! Not even in Benchland!
Another lovely lazy day, library books read and ready to be returned tomorrow. Real life also resumes tomorrow.
Good luck tomorrow Tat, hope you get some news that will help you with your choices.
Am not going to wear the cake on my head while parachuting, don't want it squashed!
Are we having a posy?
Busy day today opened wardrobe and had another clearout, am getting really good about getting rid of things, used to be a terrible hoarder haha! So off to charity shop tomorrow.
Thank you girls for your help will phone doc tomorrow.
All the very best for you tomorrow tat, big hugs coming your way.
Glad your scan was fine grumpy, fingers crossed for good results. xx
I have also looked up Ta'poxy'fen and bruising and I'm really not jumping to conclusions here but I get (only small) bruises on my legs and I can never remember bumping into anything. Hmmm?
Really glad your results were clear Katy.
Hope your MRI wasn't too bad Grumpy. Hopefully there will be an easily fixable diagnosis. I have my fingers crossed for you.
JCJ, I think as they are the Benchland camels you should definitely have first choice of Hump or Dink.
Had a lovely lazy day today, visited library got some books that I've been waiting for and some the staff had put aside for me. I'm such a regular visitor (at least twice a week and they've got to know what I like and they keep books aside for me). They know that if they give me a book on a Saturday, it will be returned on the Monday, so it's not out of general circulation for long.
Scan went OK, thankfully. Not as noisy as the last one, and diazepam made me super relaxed (no, not TENA lady relaxed........). Had to be given strong coffee by nurse, and told to have a sit down before driving home! Don't know when I'll get the results.
Then took dogs for walk on the beach and ate my packed lunch on a bench - lovely.
You ladies are such a tonic 😉. Invisible ink 😂
I quite fancy the bridesmaids arriving on a float or extra large chariot, carnival style, so everyone gets an eyeful of our awesome outfits and general all round fabulousness 😀.
KTC, I also used a (non-specified!) search engine and the top results were all from this forum, at least one per year re bruising whilst on the Tapoxystuff. Sometimes drugs manufacturers change their formulation to make cost savings, so even though your brand hasn't changed the ingredients may have....worth checking ?
Hope your scan going OK, Grumpy. MRI scans are a bit nerve wracking and very noisy but at least they're not at all painful. Hope you have speedy non-scary results!
By the way with reference to the new fleeces (wearing one now. Snuggly) they are from T*******. Think of The Lord's Prayer: "Forgive us those who T******* against us"!!
Would it be very uncharitable of me to make sure I have Dink and FS has Hump? FOTBs (potentially 3 of them, as FS remarried) can arrive on the Chariots.
Welcome Suzy! Don't be shy!! Or were you using that invisible ink?
No, no brand change, have numerous small bruises as well..............first huge one was around 6" long by 4", 2nd one around 4" by 2 and now this one 4" by 5" , hope I'm doing inches and not feet hahaha!
Googled first and head went into a spin, but thankfully tests all good so what is it???
Another thing first two are almost gone now which is superly quick, will check regarding ta"poxy"fen at docs, thank you JCJ xx
Katy, have you acquired the Benchland Bridesmaids mode of transport?! It's shaping up well: MOTBs both arrive on camels (other one, I'll call her FS, has also had BC, 5 years before me!), Brides arrive in Kayaks and the BMs in the Orange Arrows It'll be A.maze.ing!!
Your bruising could well be a Ta'poxy'fen SE! I just googled it (I know, I know) and up popped lots of links on various cancer sites, including a thread on our own dear BCC!
If you've had the blood tests and there's nothing else amiss (TFFT!!) then it could just be the Ta'poxy'fen. Have you changed brands recently?
Good luck today grumpy, hopefully you will find out soon what's causing issues. Sometimes arthur in the neck area or top of spine can give you bad headaches and dizziness.
Blood tests back and all fine, whew, last night another monster bruise appeared, any ideas most welcome, will have to go back to docs.........
What about this??? Wedding gift that will look fabulous in any room, a real talking point xx
Norcambe Nuptials perhaps?????
MRI scan tomorrow to find out what's wrong with my ears - diazepam in handbag to take at hospital if I feel all jittery.
Tat, do get as much info as possible, and don't be pushed into a decision before you're ready, a few more days won't make a difference. Big hugs for now.
Tat, the words "rock" and "hard place" occurred to me after reading your post. Hugs from me too. Have placed a hangover cure beside your bench. Guaranteed to work within minutes! Hopefully you will will get more info/better news on Monday.
I think we all ought to wear the orange cakes on our heads. Yes, they'll look lovely and will be on hand, I mean head, if supplies of cake get low.
Setting up a wedding organising business is an inspired idea, we'll make a fortune. What shall we call ourselves? Weddings 'R Us? Benchland Brides? Morecambe Marriages? Camels Cause Carnage?
I have heard of people having 25 rads and 15, but not 33. Perhaps you are having a gentler dose to reduce the risk of sarcoma, so you need more doses?? Just a thought.
Make a list of all your questions/concerns and go armed with them on Monday. Don't be pushed into treatment you are not happy (totally wrong word to choose, but "comfortable" not much better??) with. Remember, it's YOUR body!
Has Chemo been mentioned? (Forgive me if you've already told us you've had it/can't have it - I'm too Friday-night-after-first-week-back-at-school tired to hunt back through the posts to check!)
Have a look at some of the rads threads. I found it really helpful to talk to ladies going through it at the same time. "Starting rads in February" sort of thing! More hugs.
Thanks, ladies, hugs gratefully received. Have you ever heard of anyone receiving 33 rads? I'm sure it must happen, but I was a tad surprised and a lot dismayed. It could be mid March before I'm cooked!
Aaah tat, maybe your seroma man/woman will have different options for you, big hugs flying your way xx
Oh that's a really sh***y "choice" T4T. Piling up tissues, cake, and hugs for you by your new bench.
*Tat appears, stage left, carrying an 'Angiosarcoma Sucks' bench, a picture of the consultant who failed to biopsy the lump, a large pot of (poisoned) darts to chuck at said consultant's face and a huuuuuge bucket of G&T*
Poor onc (lovely lady) had the job of explaining the two options agreed by the MDT to deal with the teensy margin on part of my tumour. I could choose 'extensive' surgery to remove ribs, and the subsequent ribcage reconstruction, scarring, physio, recovery time, etc. She could tell she wasn't selling that to me as a first option, so the next offer was 33 rads. 33!! That's SIX AND A HALF WEEKS of rads!
We get to sleep (haha!) on that for the weekend before seeing the sarcoma consultant on Monday morning where we may, or may not (back to the rare cancer thing again), get more hard data on risks vs benefits of rads for a cancer that can be caused by rads. Aaaaargh!
And I was on the money re the turf war between breasts and sarcomas over who leads my care! The nurse was very diplomatic in everything she said, but her face gave it away in the seconds before her mouth started working
If anyone needs me I'll be on the Dribbling Drunk bench for the forseeable future
Glad to be of service T4T. Hope your onc appointment went OK. Yes, explaining Benchland (and its associated shouts of laughter) is always a tricky thing! One usually gets blank stares at best, ranging through "yes dear"s, hastily changing the subject right up to phoning for medical assistance! Definitely a " you had to be there" type of humour?!
This has been an extraordinarily long week. I am so glad it's Friday evening at last. Looking forward to be trip to the chippy. (And pretending my jeans aren't too tight!!)
Yep def agree soft wool please, everything is looking fabulous JCJ, think your daughter must be over the moon!!!
A kayak would also be fantastic, what an arrival!!
Am thinking I will wear the orange cake on my head, matches outfit, love the big cake but may be a bit heavy.........soooooooooo if we run out of cake.............it's there, yum yum.
Am off out to lunch today, our late Xmas get together, no turkey in sight.
All the best for your appt tat, fingers crossed xx
Saw the latest suggestions and snorted with laughter. Impossible to even begin to explain to the OH why 😉 A good laugh is just what I need today - seeing Onc this afternoon and a few visits to the terrified bench already this morning...
I really think we're on to a business idea here ladies; we're naturals at wedding planning and with all your prior experience of big events we have it sewn (or knitted) up 😀
Cakes are absolutely fantastic, we must have all of them and I'm sure we can find some more just in case we run short!
Yes please, JCJ. I MUST have that underwear. Please knit it in a very soft wool though as anything scratchy will result in all bridesmaids squirming horribly during the service and that just won't do! And I've got no idea where the fleeces are from either, you're just being too cryptic
T4T, so know what you mean about dignity, took me quite a while before I could walk into a room full of strangers and not immediately feel the need to strip to the waist!
Welcome Jan, glad we entertained you. Just joined us and already you have a starring role as a bridesmaid, that can't be bad! No, I think purple knitted pants,orange lace and green knitted scalloped edges
Glad your snotty nose is better Katy and hope the new sleeve will help Lynn go away, preferably for good.
Hahahaha! I love the internet. Look what I found: Shall I knit us all some of these? One size fits all (or nobody) as they are laced up!!
Ha ha! I like your daughter, JCJ And I like the Benchland cake rule too!!
And cakes on our heads is a no-brainer. I found this for you KTC, obviously we'll have to tweak the colour to coordinate with our fabulous dresses.... or is this actually a dress?
Welcome aboard, Jan Hope you read the first few pages of Benchland and Norberte's description. It's how I knew I was in the right place!
Love, love love the pizza cake T4T!! But I'm not sure there are any of "those who don't like cake" in Benchland!!? As afternoon tea at The Madlands has demonstrated......3 times!!
I sent YD the pizza cake picture and she said "but what would the guests eat?" So much of a hit that the brides would scoff it all!
Current wedding plans include a pub, a chippy van and a hog roast. Sounds good to me!
hahaha love the cakes tat, perhaps we could wear them on our head???? That would be a statement indeed!!
Now JCJ, have no idea where the fleeces are from? Am obviously hopeless.................glad you like them xx
...and for those who don't like cake...
I'm really on a roll now. I'm going to keep all these ideas for my kids' nuptials
Is that the cake, FF, or the head attire?
Will it be chocolate inside? Or fruit? Or maybe one of each? Non-fattening, of course, because it's benchland!
Definitely getting lighter in the evenings. Home from work only slightly earlier than usual and my first job isn't drawing the curtains! Yay! It was trying on 3 fleeces bought online from a company whose name sounds like they shouldn't be where they are: 1 purple hoodie, 1'ink' microfleece and 1 heavier weight 'top layer' fleece all a size smaller than current fleeces which are too big on me. So I am fully prepared for the dance of the 40 fleeces at the wedding!! New fleeces feel rather snug. Different brand from usual as size 18 is XXL in T******* (really??) and they don't do anything bigger, so I've not been able to buy from them before. Perhaps it's the extra Christmas weight. They stretch though, so it'll be fine.
However, it is still horribly dark in the mornings. Sooooo hard to get up and go to work in the dark!
Welcome Kayak, you joined just in time to be a bridesmaid woo hoo!!!
Thinking purple knitted knickers will be perfect, can you knit those too JCJ??? To make it easier just do one size, large..............can be pulled in for thinner ladies with flat tums, knicker elastic that's the job, just pull tight!!!
Am also loving the gloves, we can change head attire am thinking bigger feathers??
Yes grumpy there will be cake, are we doing cake?
Was up at Lynn place yesterday, hand and forearm looking good but upper arm distinctly bigger, boo hoo, new sleeves to be ordered, feel lovely and soft so we'll see.
Also snotty nose is calming down, thank goodness!!!
Still lots of rain here..........
Great news tat about your notes, lovely when someone listens xx
Will there be wedding cake?????
Otherwise Meg will decline her (virtual) invitation..........
Dignity? What's that? Half of the medics in my area have seen me stripped, so I have no recent experience of dignity. My family and I have been coming up with (mostly unprintable) suggestions for my new skill of being able to have a perfectly sensible conversation with strangers whilst naked from the waist up and often while they are 'hands on', if you get my meaning
I'm counting on these bridesmaids outfits to restore my dignity and I am convinced the PVC dresses will look perfect with big, knitted knickers, preferably in a contrasting colour. Or a rainbow of colours. Discreet, classy...what more could a bride want?
Ok, professional advice as requested. Orange and purple, a classy and popular combination ever since four weddings and a funeral (love that film) because of its ecclesiastical connotations. Apparently. The green wet look frock is of course bang on trend, what with the rain and the floods. My professional advice would be - knickers. Large and all encompassing, when disembarking from Dink (DO NOT USE HUMP!! Unreliable, easily distracted, eats feathers) one does not want to display one's nethers , does one? One needs to preserve one's dignity.
Welcome to Benchland Funny Farm, Kayak. I'm glad we've kept you entertained. It's wonderful to see a new 'generation' of women (and men??) being helped through the sh***y times by our antics.
I'm circling the Jittery bench at the moment. Just realised that my (4th) annual check up with surgeon is a week on Monday. Oooh er! That came around quick! I am determined not to get myself worked up about it (Yeah, right?) After all, this time last year I was undergoing tests for liver mets?!!
Of course, we should consult Ali about the wedding attire (as well as the camels) because she is a professional. I was forgetting that!!
Phew........ I don't need to knit orange knee highs. Thanks JCJ. I was regretting my rash offer, might have had one glitterberry juice too many there Oh yes, elbow highs will be fabulous and really finish off the outfit.
Glad they came good for you, T4T, some people really understand that the waiting is the worst part!
I'll knit the orange knee highs, and how about matching elbow highs? (gloves. Not elbow high tights - they'd just be 'tights'?! )
Katy, I seem to have lost the 'L' from my (as you called it,) flat stomach. Either due to no longer being on that ridiculous fatless diet, or due to Festive overeating. Aha! So we have discovered the reason why 'Noel,' is sung at Christmas??! . I hope it's the latter so that eating normally will stop the blob. I've kept my old clothes just in case, but it'll be nice not to need to wear them!
What a shame that these days we expect hospitals to hide behind policy and how heartwarming it is to hear that someone has shown a compassionate side to them. Perhaps someone in medical records has been there? It's so good that you will have info before your appt T4T.
I can knit orange knee highs if necessary, if MOTB will be too busy. Hers would be perfect, mine might have a few dropped stitches ( and that's where I came into Benchland, with dropped stitches! look back if you have the time/inclination/lost the will to live).
I hope you are feeling better today Katy. Daughter? Well, it's difficult to say, she's much better than she was, most of the time no-one would realise anything was wrong. She's coping and is now on a waiting list for further therapy, hope it's not too long!
Lovely day here today, sunny and bright. A nice change from all the rain of the last few days.
I'm sitting on the warm and fuzzy bench tonight, ladies. No, not a gin induced state, but a general 'aren't people lovely' kind of state.
Yesterday, I snivelled down the phone to the medical records department when they told me it would be at least a fortnight before I would get a copy of the pathology report from my op. I really wanted to have it and read it before seeing my sarcoma consultant on Monday, but the Christmas hols scuppered that and I burst into tears! I've been a bit wobbly now everyone is back at work/college/etc and hospital appointments are starting again....real life is a bit scary after all the distractions of the Christmas period.
Anyway, this afternoon a lovely lady from the medical records department called to say they had expedited the collection and copying of my notes and would be sending them via Special Delivery! It was so unexpected; they could easily have hidden behind the bureaucracy of the trust's policies and procedures, but someone bothered to set that aside and show compassion. Needless to say, I cried again, but this time they were good tears Just written a thank you card to the department as I didn't make a note of names.
Future D-I-L's favourite colour is green, so they'll be perfect for the bridesmaids dresses! She'll be (virtually) thrilled!
I was watching Don't Tell The Bride last night - well just the end of it, as it was on when I turned the tele on. I found myself thinking of our plans and how much better they were.
If you love it FF, and everyone else agrees it will be our official Bridesmaid Dress, I know it's gorgeous.........the search is now on for orange knee highs, if we can't find any perhaps MOTB could knit them for us!!
Brings a tear to my eye everytime I think of MOTB dismounting from Hump or Dink, truly breathtaking and spectacular, Norcambe will never be the same again!
Doing the usual here pouring with rain...............sooooooooooooo fed up of getting wet!
How's your daughter doing now FF?? xx
Back to work today. No children, just the teachers to clean up after and for once they hadn't made too much mess. So not too bad. Hopefully there will be no more glitter for a while which will give me a chance to get rid of what is still left, which is quite a lot.....it just gets stuck in the carpet fibres!
Went to daughter's after work for dinner, a touch of leftovers 'r us but delicious. SIL wanted my advice about a knotty problem he is trying to resolve and seems to think I'm some sort of oracle and have all the answers.
When I was younger I always ran things past an older member of the family to get their opinion and help but now I find that I AM that older member of the family.......
Katy - was that outfit just for you or is it for all us bridesmaids? I love it!