Wow that was super Brave, Brave to go & find out. Imagine how you would have felt if they had missed it. Pleased (?) they hadn't, but what a fast grower. Extremely scary that something can go so badly wrong in such a short time. Makes you wonder about the benefits of 3 yearly mammos. I had never had a mammo when mine was diagnosed & have read conflicting things about how long it's likely to have been there. One said it has to divide 80 times before you feel a lump, so must have been there for at least 18 months, the other said an aggressive grade 3/HER+ could have just been a few months. Who knows. At least we found them when we did. I have carried on doing the daily post radiotherapy massaging a) because I do still get freaky rubber boob syndrome from time to time & b) hopefully I will pick up anything dodgy fast. Nice weather xx
Nice to hear from you, Tat. I was thinking about you earlier this week & wondering whether you had decided to go ahead with chemo. I'm glad it wasn't too horrific for you. I had a sudden panic after sending that PM, about whether it actually was OK, or if I just thought it was because it was a million times better than FEC. Most of us ended up on Lansoprazole or Omeprazole for the heartburn, so do ask for that if gaviscon stops working for you. Hope you are feeling a little more normal by now. Enjoy this beautiful day...English weather resumes tomorrow. Xx
Hi ladies. Thanks for all the supportive messages 🙂 The info on your experience of weekly Taxol was helpful, Bibi as a lot of what I've read was pretty depressing about palliative weekly Taxol. Thankfully, I'm starting from a comparatively healthy place and really hopeful the side effects are tolerable overall. I had my first infusion last Friday and felt OK for the first 24 hours after which I had a heavy, fuzzy head, dizzy spells and heartburn. This carried on through Monday and I felt noticeably better on Tuesday. I haven't routinely eaten breakfast for a number of years (helps with weight control!), but have started to eat a protein based brekkie to help with the dizzyness and heartburn. I will also have to be ready to take ibuprofen a bit sooner for the viral-type headaches. Next infusion on 20th to move me to a regular Tuesday chemo slot which I prefer to a Friday as I should be feeling more myself by the weekends 🙂
I've been enjoying your blog posts, brave, but so sorry you have lost your mother in law as well now. What a turbulent year you have all had, you so deserve a rest from it all now. Glad you had a good rest in Croatia and the swimming helped your scar.
AC, hope you had a fab holiday in the Caribbean and the return to real life hasn't been too disappointing! Really hope your son is off to Cambridge in a couple of weeks, my daughter is off to uni a week Saturday and we have my son's graduation this Saturday.
Hugs to all xxx
Yay!! Well done Brave & a decisive win to boot. Suffice to say he's retaking 2 this term, so the less said about that the better! Glad your boys fared better. Tat hope you enjoyed Corfu. Wishing you all the best for chemo, if you are starting this week. You'll find it a bit nerve wracking the day before, sort of fear of the unknown, but the actual giving of it isn't usually that eventful once the cannula is in, it's the wait to see what happens after. I had a port, as you know, but the girls having cannulas recommended a small hot water bottle on your arm on the way in, plus a lot of fluids to give you the best chance for a first time cannulation. xx
Aw thanks, Bibi. I appreciate that. My mother-in-law had been very frail for some time and there really was a sense that it was time for her to go. Sad nonetheless; esp for boys, who've lost two grandparents in eight months and for husband, who has now lost both parents.
But on that cheerier note, YES, I have won a match, and a league one at that... 6-1, 6-0. It may have been a fluke but a win is a win. I don't live too far from Wimbledon, Bibi. If you find yourself there again, give me a shout. Laughed at your account of playing with erratic beginners!
On swimming, I spent hours in the pool in Croatia doing length after length of breast stroke. It was fantastic for my tummy scar. Stretched it in ways I'd never stretched it before. Not sure it helped the swelling, but I loved it. This was the first time I'd swum since last summer. So glad to hear it helped you too. Like you, I didn't really appreciate I needed the stretches beforehand.
How did your son do in his AS levels? MIne did better than expected (phew!), well enough to be hopefult of getting decent grades in the real thing next year. Younger son did superbly in his GCSEs.
Love to all. x
Hi M sorry to read on your blog that you have lost another close family member recently. Hope you are all ok. On a cheerier note, have you won a game yet? I was playing with some teacher friends of mine in Wimbledon Park on Tuesday. They are beginners. Piece of cake thought I. Not so, they had me running all over the place in the effort to get/keep a rally going for longer than a couple of balls. Their shots literally went all over the place, high & wide, &, of course, I had to dolly drop all of my returns right onto their racquets. I was utterly knackered by the end of the 'game'. I had an interesting chat with the onc about swimming. M bought me a summer membership to David Lloyd in Epsom, which has a wonderful outside pool. I used to love swimming outside, but hadn't done it for around 18 months. The backstroke has massively improved the mobility of my shoulder, which I thought was fine before, although there were a few pilates/yoga stretches that I just couldn't do without quite a bit of a struggle/pain. Now, absolutely no problem at all. Mentioned to onc last week in passing & she said 'oh yes, & it's wonderful for seroma reabsorption too'. Just thought it might be worth a try if you're still struggling with the latter. xx
Tat hope you're holding up chuck. xx
AC hope you had a great hol. xx
Hi Tat really extremely sorry to read your post & to hear that you're looking at chemo. Must be extremely difficult to hear that information & I hope you're holding up as well as possible. No doubt it's a really difficult time for you all. Are you having weekly or 3 weekly? I did the weeklies & found it not too bad at all, until right at the end, although clearly it means that you're never away from the hospital, you can just go about your life as usual. My best advice is to drink for England the day before, day of & day after chemo, by that I mean 2-3 litres. If you need any help just PM Brave or me, we both had Taxol. I hope your youth camp was a success & that you enjoyed the time away from the usual routine. All my love & thoughts coming your way xxxxx
So good to hear from you, AC. Hope the results = Cambridge place and you all have a wonderful and relaxing holiday.
We saw my onc today and the news is not good. There are 4 or 5 lesions in my liver, too randomly placed for surgery, so I will be starting paclitaxol, 3 weeks on one off, when we get back from the wedding in Corfu in early September. I'm a bit numb about it all at this stage, now reading all I can about weekly taxol side effects and making what plans I can for when they hit. My daughter and I are off to London for a couple of days next week and I'm so pleased we organised that. It's been quite a summer so far, chez Tat. Son's degree, 21st birthday, and posting to Liverpool on the Civil Service Fast Stream (starts 3rd October). A Level results yesterday were a teensy bit stressful, but our daughter is going to Leicester uni, her insurance choice, in September, so lots to prep for that.... And now this!! Need a few days to absorb this.
Hugs to all xxx
We're in mid Aug and the weather has been largely glorious. Great performances at the Olympics and over on my side, my family and I are getting used to life without mum. Each day gets a little easier but we are now at the position of will reading and all the implications that has arisen thus far.
I'm enjoying the summer hols and have a lot of me time getting to connect with extended family. This week I'll be off to the Caribbean, Jamaica to be exact for an all inclusive holiday with hubby and my sons. We're just waiting for the A level results for son number two, to see if he has secured his place at Cambridge reading History.
There's a lot going on at the moment and life most certainly troops on.
Good luck and all the very best to all the ladies who are still in active treatment. Keep the faith and stay strong because you deserve it.
I'll be in touch on my return. Onwards and upwards, ALWAYS.
Oh dear , doesn't sound like you had a good experience Tat , what an idiot he was . How do they manage to be so inept and stay in their jobs ???
Hope they don't keep you waiting too long for the results and that you enjoy the Camp in the meantime .
Camp starts Saturday, so busy, busy, busy! Just the way I like it with results to wait for.
Abdominal MRI involves lots of breath holding, so not as easy as thorax and pelvis! The chap who called me in was a big guy and his English was not very fluent. He didn't introduce himself and kept calling me 'lady'. He put the cannula in and tightened the tourniquet to 'painful', but was blessedly quick inserting the needle. However, when he ripped off the plaster afterwards he was so rough he pulled the cannula out with it! Not a pleasant experience all in all. I should've said something, but just wanted to get out of there 😞 I hope I would refuse to be treated by him another time.
Hope your hols were relaxing, Brave?
Hugs to everyone else xxx
Hope all goes well with your scan on Monday & results Tat. How was youth camp? I'm sure it was an excellent diversion for you xx
Well THEY might not be bothered, but surely they should consider how YOU feel too!?! Glad scan's through & will send good vibes & say some prayers for you on Sunday. Enjoy your camp xx
MRI on 8th August....can't wait for more time in the noisy tunnel!!! They don't seem to be very bothered by the possible recurrence on my chest wall, but by the time this is resolved I'll be having my next set of 3 monthly scans in Sept!! Hmmmm xx
Tat Wow, that really would be a marvelous outcome for you all, if that's what it turns out to be. Hope you get the MRI through soon. Sounds as if your youth camp will keep you more than occupied in the meanwhile. Enjoy it.
AC hope all's well with you & you have a holiday planned (or is just being off school holiday enough for you?).
Hi ladies. Brave, have a wonderful time in Croatia - such a beautiful and interesting country. We've sailed from Split and been to Dubrovnik a couple of times (son got way too excited at spotting some Game of Thrones filming locations and even walking past the crew and cast trailers... Fully intend to go back, but not on a GoT hunt 😉
Sorry to hear about the trigger finger, but Bibi's smartie tube thing made me snigger. Can't believe a medical 'professional' would give that advice and expect to be taken seriously!! Of course, I don't have any useful advice, just sympathy for the cr@ppy side effects from drugs that are supposed to help.
My CNS called on Monday. The liver radiographer has reviewed my scans and is pretty certain the lesion is a benign haemangioma. He doesn't recommend a lliver biopsy as the lesion is 9mm and would be difficult to accurately target, so I'm being booked in for a liver MRI instead.... so, could be good news, but more waiting to find out. I'm not exactly relaxed about it, but a week in Dorset has helped steady us. And 'Two go mad in Dorset' made me laugh, Bibi 😉
Hope you are enjoying a rest now the schools have broken up, AC. Sending lots of hugs so you can store them up for when you need them.
Weather's still good here, in fact so good I haven't done all the prep I should be doing for our youth camp. Lists of food shopping to do ahead of big cooking day and equipment to check. This will be my last year organising it as we had to make contingency plans in case I was unable to go - think this roller coaster is going to be a lifelong one now, so makes sense to not be the sole organiser again!
Hope everyone has a wonderful and restful summer. I'll post when I have news xxx
Have an amazing holiday Brave ... If u r anything like us, you lost last summer's hols to BC, so you'd better enjoy this one twice as much. Sorry to hear about the trigger finger malarkey. Can it just resolve spontaneously? When I had a skiing accident years ago, I was on crutches for so long I got trigger fingers because of pressure on the tendon in the palm of my hands. Used to wake up with fingers that wouldn't respond to mental instructions & had to unbend them myself ...the orthopaedic doctor suggested, quite seriously, that I sleep with 10 smarties tubes taped on my fingers. Kinda like Edwina Smartiehands! It made me laugh so much. Guess yours is due to capsule thickening of the sheath that the tendon goes through. I know Tamox causes thickening of various things too. 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
Hi all. We're all clearly at the age where we lose our parents. I have my dad's order of service from his funeral in February in the kitchen drawer, Bibi, so I know exactly what you mean. I like the fact that the photo on the front is one I myself took. AC, my thoughts are with you. Tat, I echo Bibi on the biopsy front. Bibi, I played tennis too today - got thrashed 1-6, 1-6. Still to win a game! x
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
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
It's great to read your posts and I send plenty of hugs to all of you who are going through the different trials presented by the big C.
While I have been organising the funeral for my mum, I have not had time to dwell on my own after treatment of radiotherapy but can say that I am still feeling pain and discomfort in the breast that had surgery. I do believe that all the customary hugging with relatives at my mum's funeral, perhaps aggravated the delicacy of this area but what to do? You can't avoid and turn away people's ways of comforting you.
My mum's funeral was very emotional. My sister and I did her eulogy and we stood on the pulpit and while she held herself well, with a few wobbles, i however, cried my way through the eulogy doing my very best to sound clear and articulate. I did tell myself to try and stay verbally strong, but grief beat me to it. I did manage a few laughs of some of my mum's anecdotes and sayings.
Overall, the funeral went well, with beautiful hymns and readings; singing at the graveside and more tears and sadness. I have indeed, as have the whole family, dealt with a lot of stress as the matriarch of the family is now gone in body. These are truly difficult times. Even now, two weeks after the funeral, it still hurts but in a funny way, visiting the cemetery is comforting as are the memories and the photos I have of mum lying peacefully. She was beautifully presented. The funeral firm were brilliant, the reception afterwards was lovely and the late afternoon karaoke, certainly livened things up with my version of 'At Last' by Etta James - a wonderful end to a momentous day.. I feel my mum would have loved it; a funny thing to reflect on but she loved to dance and she had a fabulous voice; a soprano - Ave Maria was played during the viewing, at the church.
Now, two weeks on, I have been at work for a week and getting back into the swing of things. The students have been fab and my work colleagues have been so supportive. At some point I will have to address the time off that I have had as I think it was over the standard up to 5 days (education). I'll deal with much of that later on.
For now, its getting on with life, no more routine, visiting mum, and all that that entailed but now trying to fill my time with other distractions until the pain eases.
Thank you to everyone on here who have expressed words of comfort and condolence. Time is what we need and that most certainly cannot be rushed. Today, is one month since my mum passed away. A candle has been lit.
Keep on fighting, 'the proverbial, fat lady has not sung' and enjoy LIFE.
Best wishes to you all and I'll be back soon.
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 ♥
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
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
Good luck, Tat. It seems we all have different crosses to bear (figurative crosses, that is, as I'm not at all religious!). Accepting that we're not in control is a big, big deal, I agree. Moan away. Let's be honest, we'd all rather have a messy kitchen and be well than a tidy kitchen and have this s**t to deal with, wouldn't we?! Wow, you lead a camp of 30 young people? That's something to be proud of, even if you don't do it this year. At the moment I feel I'm not doing a great job of "leading" my two own young people! 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
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
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
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
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 😞
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
Funny, I was just thinking I'd pop in and ask how AC was doing when I saw you'd beaten me to it, Tat. Hug for you from me too, AC.
Thanks re the blog, Tat! Thought I'd be done with it now but I keep finding things to write about.
I'm enjoying being back at work. Doing three days a week at the moment. I have various bc-related appointments over the next couple of weeks: plastic surgeon next week then breast surgeon and radiotherapy consultant the following... all wanting to see how my reconstruction looks after 15 sessions of MLD. The answer is much better than it did but still swollen and I still have some not insignificant post-sugical pain here and there and some cording. I do try to do some MLD myself every day; I think it helps.
I'm loving playing tennis again. Bibi, I've rejoined the ladies 3rds; my first two matches, against Dorking, are tomorrow.
Good luck with setting up the support group, Tat. The cakes sound great. I'm tucking into a hot buttered scone as we speak!
Love and best wishes to all. x
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 🙂
Your words of support are always helpful. Thank you.
The funeral is a week away and most things are organised which is a blessing. There is so much to organise death occurs.
I totally feel for you living with angio sarcomaco but somehow you find enough boundless energy deep in your reserve to call on.
None of us are certain of our destiny or future whether here on earth or up above but while here on earth and living within the 'laws of the land', I can continue oto push on.