I’m so glad you have taken time off, AC. You should be looking after yourself and dealing with all the tasks that need attention now, not giving out emotional energy to the kids at school - someone else can do that until you are in a better place and able to return. The only good thing my dx and the terrible stats around angiosarcoma has done for me is make me determined to live, rather than be fearful (as much as possible) and wait to die. Your mum would want you to live your life to the full and be happy, just as you want good things for your boys. I like the idea of grabbibg life by the scruff of the neck! I had a wonderful time with girl friends from school last weekend, one of whom I haven’t seen in 34 years! A couple of years ago I would probably have made excuses not to go as we were in Oxford for our son’s valedictory service before leaving college, and it was a bit of a logistical hassle, but I know now how precious time is and only regret the rather large amount of bubbles we consumed! We’re all here for you, and sending lots of love and hugs xxx
Just popping in to leave a hug for you, AC. Hope you are OK 
*Waves* to everyone else 
Loved your latest blog post, Brave!
I’m busy baking for a sarcoma support group a couple of chaps and I are working to set up. Chocolate brownies, lemon drizzle cake and a fabulous sticky toffee traybake from a Bake Off cook book. If you’re going to do sugar, you might as well do it properly in the form of cake
Weird! We’re all in synch then ladies.
AC I was just popping in to say hope you are holding up during this difficult time & to wish you luck with everything. I remember finding out a few things I did not know about my father at his funeral, largely from his work colleagues, who saw a completely different side of him of course. Funerals are simultaneously deeply sad, upsetting, uplifting & cathartic. It’s always a relief when the rather other worldly gap between someone dying & their funeral is over. My thoughts & prayers are with you.
Hi BakeOff Queen & Tennis Champ. I’m playing better than I was before my illness, Brave, everyone at the club is asking if the chemo was tennis rocket fuel. How mad is that!! Good luck in Dorking (not far from us, but I will be in Wimbledon for some passive tennis). xxx
Wow, Bibi, bc has gifted you even better tennis skills! Or maybe you’re just enjoying it and life more consciously than before and going for every single ball and point! Whatever it is, let it last long and take you to the top of the league ?
So glad the MLD worked and looks like a long term solution, Brave, even if it is a drag to do it every day. None of us come out of this without some unwelcome side effects, eh? Hope the pain is ‘normal’ and part of the healing process. I am aware of more feeling around my op and rads site now, not all of it welcome!
I’ve been doing really well, with fewer and fewer thoughts about sarcoma and hospitals…until today. A missed call from the hospital and because they have a single outgoing calls number it’s impossible to know which department has called. My first call was onc’s secy. Yes, she had called to schedule an appt for next Friday. No, she doesn’t know why Onc wants to see me…I do; full CT scan and MRI of thorax on 14th June and at my last appt with Onc we agreed she would call me if there was anything I needed to know rather than take up clinic time. I had envisaged my Onc actually calling me rather than the vagueness of her secy and a whole week to wait and wonder 
I left two messages for the sarcoma CNSs, neither of which were returned and added to my paranoia… Hopefully I’ll get a call tomorrow from someone who can see my scan results, but the reality of 3 monthly scans has suddenly got a whole lot more scary
Tat
Sending huge hugs
Hope you get a call and some answers sooner than next week.
Jan x
Yes, a week seems a long time to wait, Tat. Fingers crossed for you.
A suspicious 9mm nodule on my liver according to my sarcoma CNS. Thanks for the hugs, much needed today xx
Tat I’m really pleased you managed to speak to your nurse, but ‘oh no!’ to what she had to say. Life is really chucking rubbish at you just when you were doing so well & really getting back in the swing. Keep strong Tat. We’re all right behind you. What’s the next step or do you have to await the appointment next week? I have said a prayer for you, I don’t know if you’re into all that, but can’t hurt. xx
Thanks for the prayers, Bibi. You really couldn’t make this up, today is the first meeting of sarcoma peeps in the West Midlands and I’m organising and hosting it at my church! My CNS is representing the sarcoma unit at the QE! At least it’s given me something to focus on. The house sparkles - Windows clean, radiators inside and out, bathrooms cleaned with a toothbrush… you get the idea. I’d normally get trashed to deal with bad news, but need to look after my liver, so the gym and mindless cleaning are going to get me through until I see my Onc on Friday.
love to all xxx
Look, I know none of us can say anything to stop you worrying, but white wine & keeping busy are my coping mechanisms, so know where you’re at with that part at least. Like you, & Brave according to her blog, I have pretty much cut out the former. Hope the group goes well, no doubt a welcome addition to your area. I don’t think anyone ‘gets it’ like people who are going through it, however hard they try. Is Mr Tat-for-Tit (or should that be Bat-for-Ball!) going? Might be good for him to meet some other partners too. At worst, sounds like you’ll get some nice cakes xxxxx
How did the support group go Tat. Hope lots of people turned up for you xx
Hurry up and wait is the result of today’s appt… Onc wants to try for an ultrasound guided biopsy, so waiting for an appt for that. Mentally and in every way that matters, I’m right back at the beginning again, not knowing what will happen and not able to plan for the things I want and need to do. I organise and lead a camp for 30 young people every August so having to make contingency plans in case I can’t do it…I’m not in control of my future and I think this is how it’s always going to be now. Thanks for the PM Bibi, much appreciated even if I couldn’t bring myself to come on here and read it until a couple of minutes ago! The kitchen is cleaner than it’s ever been - mindless, repetitive tasks are my way of coping, so there is a teensy silver lining! Thanks for letting me have a moan xxx
Tat so very sorry you are facing yet more uncertainty & stress. This is like a nightmare train you can’t get off sometimes, moments of relief & reprieve & then rushing headlong back into the black tunnel again. I cannot imagine how you are feeling or offer any wise words of wisdom … You know them all already ? & they don’t really help right now, but massive cyber hug heading up to the Midlands. Have a jolly good moan/unload/shout/scream whenever you feel like it.
AC I’m thinking you must have had your mother’s funeral by now & I do hope it went as well as these things can do. Hope you’re ok. I’m sure losing a second parent is very different.
Brave if your boys are anything like ours, they pretty much have their own idea of what they’re going to do anyway. I feel like I’m back on chemo this week with bleeding nose, mouth ulcers & really awful peripheral neuropathy. Apparently SEs of the Herceptin …,who knew?!? It’s seems to have turned out like the Paclitaxel, the more you have, the worse it gets. Still got 4 months to go & I’m too scared not to complete the course. Any tips for PN that helped you would be gratefully received. I’ve fished out the L-glutamine again as both hands & forearms feel as if I’ve stuck them in a nettle bed & rummaged around for half an hour … OUCH! xx
Sending hugs to you Tat
Jan xx
Bibi, so sorry about the PN. Yours sounds worse than the PN I had in my feet… and that was bad enough. Tat and AC, thinking of you and wishing you both strength with regard to your respective challenges. I was diagnosed a year ago this week. I guess there’s a lot to be grateful for one year on… despite the trials and tribulations. Hugs to all.x PS Bibi… I’ve lost all four tennis matches I’ve played so far!
Happy crappyanniversary Brave. May there be many more. Thank goodness we stand at this end of the road, not the other. It’s for moments like this that someone invented ‘it’s not the winning, but the taking part’, but I think the real point us that you’re thinking about that not BC stuff. You’ll be back.xx
Hi ladies. Feeling a little less wobbly, despite still being in limbo…! Thanks for the hugs, kind words and support - it really does help
Sorry your herceptin side effects are so bad, Bibi. It’s such a tough call to decide where the tipping point is for treatments that help prolong lives or improve our prognosis but negatively affect our quality of life. I’ve been pondering this as chemo will be a possibility if my unlovely angiosarcoma has recurred or mestastasised. And, I still feel perfectly healthy, as I have thoughout this rotten ‘journey’! Grrrr 
Really hoping you can find something that helps with side effects. What does your onc say?
It’s my ‘crappyanniversary’ on Friday too, Brave. My son’s 19th birthday was the day I found the lump, although it was another 14 months until diagnosis via the local breast unit where we were told, and I quote, ‘I can categorically reassure you it is not cancer’. I’m glad this is a very busy week; I really don’t want to be dwelling on that!
Sending lots of hugs to you, AC
AC, what a wonderful tribute to your mum. Read your post with a teary eye and lots of love for you as you are coping with such a lot. A daughter to be proud of Hugs xx
AC I can only echo Tat’s words. Today is two years since my father died & it does get easier with time, but of course they are always there in your thoughts & heart. Actually I couldn’t bring myself to throw away the order of service after his funeral, so I see his face every morning when I open the cupboard with my toothbrush in. Sounds mad, but it’s quite nice to see him. Glad you are back at work.
Tat I do hope they have given you a date for your biopsy by now…the hanging around not knowing is always just vile. I think we would all feel just the same way as you.
Just back from seeing the oncologist at this end. She is of the opinion that Herceptin doesn’t cause peripheral neuropathy & tamoxifen diesn’t make your hair fall out…errr I beg to differ. She thinks it must be something I’m doing!! You’ve got to love them!
Brave played tennis this morning … All I can say is hot, Hot, HOT ?xx
Thanks Brave, always good to know you’re not the only nutter in town! Funny about your tennis … Maybe you are still not at full energy levels yet. All I can suggest is play some less good tennis players!
Tat hope your BCN sorted you out xx