Hi Jill. I posted on your AS thread to wish you a lovely day tomorrow, with absolutely NO hospitals or AS involved
The sarcoma team and breast team are technically in different hospitals, although on the same site...sounds complicated, and definitely works out like that! I don't want to create any tension or bad feeling with the breast team, but I am effectively voting with my feet and will ensure I have regular contact with the sarcoma team from now on. The consultant is a bit lacking in bedside manner, but the nurses are all lovely, thorough and thoughtful. Hopefully I'll have my path report before I get to see sarcoma man.
We're off to my parents' tomorrow for Christmas for forcefeeding
So sorry to hear of your meltdown Tatty , but soooo understandable , you seem to have had the most awful time with your appointments and results . Please stand your ground and insist that you are treated by the Sarcoma team , rather than the breast team . This disease is so rare you need the expertise of those who have treated it before , and sooner rather than later .
Bummer that Christmas and New Year hols delay everything !! I was diagnosed on Christmas Eve last year , and had to wait to see Sarcoma Team on 2nd Jan which seemed an age to me !! Realise now he saw me early , and performed my radical Mx on the 13th Jan , for which I am eternally grateful !!
Hope you manage to keep your brain occupied with the bench dusting and tissue re-placing , but don't hit too many alligators with those rocks , they might get agitated and chase you round the benches , they move fairly swftly when provoked !!
Hope everyone including the camels has a great Christmas ...
Thanks JCJ. Got it now! Brain obviously had a holiday last night. NOOOOOOooooo, not charades please.
Any thing but charades!
Not done a lot today, now I have to get off the CBA and wrap some gifts.
Ali, it's true you learn a lot about your 'friends' after a cancer diagnosis *wry smile*. I did all of my secondary schooling in the far east and school friends are now scattered all over the world, but I've had cards, flowers and obscene amounts of chocolate sent to me by them. A relatively new friend sent me a box of things useful for hospital and the early days post op. She'd researched it and everything was perfect, right down the button front PJs and a can of G&T!! Another friend downloaded and knitted me a 'knitted knocker' and designed several seasonal covers (Rudolph, complete with sparkly nose; a Robin red breast, of course; and a Blue Booby, a real bird!). Shed a tear over most of those gifts - people are mostly good, kind and generous
Warning - long and ranty post. Stop reading here if the camels/kids/OH need feeding or a cream cake/box of chocolates is calling to you
I had a big meltdown at bedtime last night - spent a lot of time on the crazy sobbing lady bench - but it had been building for a couple of days. I'm so frustrated over the delays in appointments... My op was 26/11, results appointment 14/12 and was told an appointment with the onc would be forthcoming as rads are on the cards. I also requested a copy of my histopathology report, but have to make a formal request to access my health records, so I'm making my third request to complete (I hope) the full set from all 5 hospitals that have been involved in my misdiagnosis (local hosp), diagnosis (tertiary hosp) and now tertiary treating hosps....
Unfortunately, I arrived at my results appt late and flustered; I'd allowed over an hour for a half hour drive and parking, but heavy traffic meant I was a few minutes late and I forgot some of the questions I wanted to ask. It also seems there is a bit of a turf war going on between the sarcoma team and the breast team over who leads my care (or who gets to write up my case in the medical journals? I'm such a cynic, but with less than 0.05% of all cancers in the breast being primary angiosarcomas, I'm pretty sure I'm right to be). The day after my op, my breast surgeon cancelled the sarcoma appointment saying the results wouldn't be back by then......and then made an appointment for me at the breast clinic on exactly the same day!!!! I have specific questions about angiosarcoma and spent far too much time online yesterday, with predictable results :'(
This morning I called the sarcoma CNSs, all of whom are lovely and very proactive. The BCNs are OK, but I've seen/spoken to a different one every appointment/call and they have never called me. So, the lovely Nurse 'B' calmed me down and worked out a plan. She's organising an appt with the Sarcoma consultant and I can make an appointment at the sarcoma nurse-led clinics any time I need to. She also told me that the onc I have been referred to has clinics on Fridays which means the earliest appt will be 8th Jan - isn't it a good job there's nothing I want or need to do or plan for January, eh? At least 7 weeks between op and onc appointment and much longer, no doubt, before I can start rads
Still felt a bit wobbly today, so forced myself to go to Zumba (can we have a Zumba bench?) with my daughter and a couple of her friends - always puts a smile on my face - and a long, long walk with the OH and our dog. Keeping busy helps me, so I might pop in over Christmas and do a bit of dusting around the benches, top up the tissues (only fair since I've used most of them) and throw rocks at the alligators, if that's OK?
I hope you all have utterly fab Christmasses with your nearest and dearest. I'm sure you will all be on Santa's 'Nice' list for the way you keep Benchland in running order and welcome and support newbies Hugs to all xxxx
Hello all!!! Your post reminded me of one of the surprises of my cancer diagnosis Tat, which was the reaction of friends. One very close friend was in tears , offered to take me to appointments, shave her head as a fundraising (hah, that's a topic all of its all own!!!!!!!!) , love me forever....you get the idea. She then disappeared into the woodwork. But two ladies I was on nodding acquaintance with turned out to be absolute superstars! One would text me very rude jokes while I was having the chemo, another messaged me every day to see how I was and never took the hump (camels again) if I felt too rubbish to reply. Something I never expected! Although I think there's a saying that people come into your life when you need them xx
Christmas Eve eve, KTC, what my family call 23rd Dec.ie the day before the day before Christmas!
I made some chocolates for my neighbour yesterday. Well, actually, I rolled the left over marzipan into little balls and coated them in melted dark chocolate, putting a white chocolate chunk on top. I'm really pleased with them. I had loads of melted chocolate left, so rather than waste it, I experimented with coating Clementine segments. Just had several of them on my cereal! Such decadence!!
On the 11th day of treatment, my BC gave to me:
11 nights asweating,
10 cramped leg leapings,
On the 12th day of treatment, my BC gave to me:
11 nights asweating,
10 cramped leg leapings,
9 ladies dancing,
8 meeting in Morecambe
7 hairless months
6 fleeces flayling,
FIVE YEARS ON MEDS,
4 weeks of rads,
3 blue tittoos,
2 nasty scars
No idea what Carol will be tomorrow. Any requests/suggestions?
Whew sooooooo glad you practically spelt it out JCJ, cause I was having difficulties too!!!
Now I assume you were at the glitterberry juice last night as one, you are ramming people in the cafe and two it's not christmas eve today........................! hahaha!
FF, glad your daughter's house is now superly cosy, are you going there at Xmas?
Isn't it funny how yummy things just appear in your trolley?
Tat, your head will be all over the place just now, do what YOU want, when YOU want, big hugs to you xx
Will play charades but after small forests???? can't see me doing well, haha!! xx
Listen carefully, FF. 'Small' is a synonym for 'Little' and 'Forests' for 'woods'. Smallforests. Get it now? Or do I have to spell it out in words of one syllable... Which would be tricky, as this particular retail establishment (possibly now defunct, and may never have been 'darn sarth'??) has 3 syllables!
Shall we play charades for our next Benchland escapade? Lol.
I'm going to a local vineyard/delicatessen tomorrow, with OH, so he can get D-I-L-to-be her Christmas present. I hate to imagine what's going to "fall" into my trolley?! We're planning on having lunch in the cafe there, if it's not too rammed, it being Christmas Eve eve tomorrow!
Hyper sensitive is just what we all are tat. The slightest comment, a sideways look and we over analyse it, jump to conclusions and just totally go bonkers and be irrational, ungrateful and suspicious. It certainly happened to me. It's ALLOWED and we've all been there. It does pass but for now, chuck the guilt in the lake and do whatever makes you feel better.
JCJ - I was very confused, now I'm only slightly confused. Got the two boys names JL. But L = small forest??
Katy - what a coincidence, a tin of sweets fell into my trolly today as well So did some cream cakes and chocolate. I'm sure I never lifted them off a shelf, I only remember picking up cheese, bread, bacon and sprouts!
Glad you feel better tat, it is true we have all had different feelings about things, that's the beauty of the forum, we all get it soooooooooooo just rant, rave or whatever but do not hang on to any GUILT, throw it in the lake and be rid, difficult but as we have all said this is probably the first time that it's actually all about you and your feelings, it's allowed tat! So just go for it girl!
Ta da have purchased my lettuce and funnily enough a large sweet box just fell into my chariot, oh well will just have to eat them now.
Oh dear another takeaway tonight, bad moi!! xx
Thanks, JCJ, it helps so much to know others have felt these feelings - gives me hope that I won't always be so irrational and ungrateful!. I've calmed down a lot since typing that and had arrived at more or less the same conclusion. She's not really the type to gossip, although others in the same friendship group are.... I'm just hyper sensitive at the moment and woke up feeling very flat today, so something was bound to get me! Instead of joining in the chariot race last night I watched 'Still Alice' with the family. Possibly not the best film to watchat this particular point in my life...
At the risk of annoying you all by my popping up yet again, I felt I had to reply to Tat. Don't feel bad about those thoughts, we've all been there. All had them.
But, although I don't know the person in question, is it possible she might just desperately want to do SOMETHING. She may genuinely be concerned for you. I think I may have done something similar if I were the acquaintance. A way of showing I care but less intrusive than a visit/phone call. Just a thought, but by all means, be angry; be VERY angry, but with the b******d cancer, not well meaning, but possibly ill-advised well wishers!!
There's an old thread on here called "stupid things ( non-cancer) people have said." Have a look. You'll laugh, be angry and also realise.....we've all been there!! Hugs. x
How are you lot feeling after last night's shenanigans? It sounds like the race was a lot of (completely bonkers) fun and most of you avoided arrest/serious injury/fines....or did you????
I just popped in for a quick visit to the benches - a cheek each on F**king Furious and Guilty (doesn't every visit have to include a spell on good old Guilty?) benches as I type. I had a Christmas card today from someone I know from a place we used to live 10 years ago. She moved to the area shortly before we moved away and although I've seen her on and off since we moved, in the context of a wider group of friends, we weren't close. The card is full of good wishes and professions of love and promises that 'You'll get through this' after hearing my diagnosis and surgery, etc from another, closer friend.
So why am I furious? I was really upset to begin with but couldn't work out why. She's never sent me a card before, we just don't have that ongoing relationship although we get on well when we do see each other. Then I realised I'm angry because my situation is being used as a topic of conversation/entertainment among that group of friends & acquaintances and her pity suddenly elevates our friendship to one where we..... Well, what? I fall apart on her shoulder and give her more of the gory details to gossip over? With, naturally, the ability to carry on with her life uninterrupted, except for the odd juicy tidbit of news about poor ole Tatty. Aaaargh! And then, of course, I feel hugely guilty for thinking and feeling all that.
Sorry to be a party pooper, but I was surprised how upset and angry this made me feel. I think I might need to order an Over-reacting bench and carefully place it in a secluded corner
What a plonker! Did my usual and got famous store 'JL' (= 2 boys' names) confused with another famous store/catalogue (not sure it exists anymore?) 'L'(= smallforests). Parcel coming from former! Always have got those 2 trading establishments confused!! I really should stay off the glitterberry juice??!
FF, we don't need to choose! We'll sing all of them! I hope you've all be learning the words?
We'll have carols by the lake with lashings of glitterberry juice, hot mince pies with brandy butter and/or cream and Christmas alliburgers I've been throwing edible glitter in the lake, - gilt with the guilt, as it were - for weeks now so the meat should be nice and sparkly, and we'll add cranberry sauce and my amazing sausage and apple stuffing for extra festiveness!
On the ninth day of treatment my BC gave to me:
9 ladies dancing (around their handbags?)/skating/swimming/diving/racing* (*select according to current madness)
8 meeting in Morecambe,
7 hairless months/heavenly hairy faces,
6 fleeces flayling
5 years on meds,
4 weeks of rads
3 blue tittoos
2 nasty scars
And the BCC Forum
On the tenth day of treatment my BC gave to me:
10 cramped leg leapings,
9 ladies dancing
etc etc etc
Loving this not having to be dressed and out of the house (or even out of bed!!) by 8am. Message from famous store (Jack Smallforests) to say my parcel is on its way - lovely double handled soup bowls, a last minute purchase for OH's Christmas present - he struggles with soup because of his shaky hand - so I'd better get dressed before the delivery man arrives!!
Oh my lord, I'm exhausted, I WAS wearing clothes, the police had no right to stop me,It cost me the race! I was perfectly decent. After that , it seems to have been a blur. (Real life....turkey crown now in Son's freezer, that's our Christmas dinner sorted). Hump and Dink just ,.... well....they're Hump and Dink aren't they? What happened? I seem to remember going round Eric twice and then there was a cup of tea!
Obviously Katy won......, who else? So much more experience! And I won my bet!
Silent choir performing on Christmas Eve at 7;30. Hope we've all been practising. O Holey Tights is still my favourite., .....although the Twelve Days of Christmas is running it close, as is OISNC, just how do we choose?
Blinded..............by tears of laughter, have no idea who won?????????
All I know is that at one point, I was propelled into mid air by JCJ's wind power, not sure if I went backwards or forwards.
Did think everyone looked soooooooooooo pretty at the start, loved grumpy & co's "common" look, well done!!
As for FF, and her turkey crown, her poor frozen head, as she started to sprint, crown managed to defrost, saw it bounce and crack that poor man, ouchy. Good job the medics were hanging around.
Are the silent choir performing next? xx
I've got my sparkley jumper and tights on, Meg has practiced her royal waving, Joey has rather let the side down by keeping a rollup behind his ear and wiping his nose on the sleeve of his leather jacket!!!
Starting at 9pm, so lights switch on at 8-30PM, ready for judging by - wait for it- Jeremy Clarkson!!!!! He thinks he's coming to judge classic cars LOL. Joey is ready to put muddy paws up his trousers, and Meg said Jeremy WHO????? In that superior corgi way..... No cheating, such as camel-power allowed.
Remember the route - start at the car park next to Ritas then up the prom to Eric, 3 times round Eric, back down to the Madlands for presentations for the various categories (choose your own) the mulled wine and canapes in the bar.
First aid stations every 20 metres for cake, glitterberry juice and anything else you fancy, stopping at all of them is compulsory!!!!
We will enter the naff chariot and trailer category, as we have trimmed up with rusty tinsel, cracked baubles, broken fairy lights, and old cotton wool snow.