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RobinJ
Member
since
24-11-2016
193
Posts
23
Hugs
21-01-2018
05:32
Hello January 2018 cohort, I'm from the January 2017 thread. We got so much amazing support from each other that we started up a Facebook group round about when most of us were finishing our radiotherapy last summer. Recently some of us were wondering about you and how you're getting on. I said I would come on here to send you a message of support from your 'sisters' who are one year further on. We are all doing so much now - a year makes a huge difference. I know that dark, bleak January is not the kindest month to be embarking on chemo ( is any?) but I hope it will reassure you to know that there is definitely light at the end of the tunnel, and as the months go on it will get steadily brighter. I likened the experience to climbing out of a deep, dark well - but you will get there. My advice is: keep posting on here - you will really help each other with advice, tips, support and encouragement; keep a side effects diary - it helps your medical team, and it reminds you of what to expect; accept all offers of help going, especially from the brilliant charities that offer so much - BCC, Maggies, the Haven, Mulberry, Look Good Feel Better, and more. Sending you lots of love and support. Thinking of you. Robin x
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17-10-2017
04:41
Thanks again everyone for all your hugs and good wishes. Well I had my appointment with the oncologist yesterday. She told me that the team doing the CT scan hadn't been told that I had had surgery since my CT scan last year. They were looking for changes so they flagged up an 'area of concern' which was, in her words, normal post surgery changes. I will still need an ultrasound because it has been flagged up but she doubts I will need a biopsy and says she thinks it's nothing to worry about. Rest of scan showed no new changes. So I'm very relieved and trying to process it all in my head. R x
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11-10-2017
06:08
Thanks all. Evie, I'm glad your lump was benign. Yes you're right - these scares take us back to those diagnosis days. Even more of a shock because we've all come through so much and are starting to relax. R x
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10-10-2017
09:31
1 Hug
Thank you for replying, Sue, Belle and Dora. Although they can't give results over the phone, the hospital have acknowledged my extreme worry. One of the doctors phoned me today to say the 'slightly worrying ' thing they spotted is an area in the armpit that needs checking out. So they have booked me a biopsy for next Monday. Then there will be a longish wait for the results from that. So the wait continues. But I'm glad they phoned me back and allayed some fears, if not all. R x
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05-10-2017
09:23
1 Hug
I finished all my treatment in June (surgery, chemo, rads). I had a CT scan on Monday, a year after my first CT scan which was done before surgery. Then today I had a phone call saying the oncologist wants to see me to discuss the CT results because there is something 'slightly worrying'. Now I am absolutely terrified. Results can't be given over phone so I have to wait till appointment next week. What can it be? I am extra scared because this was a recurrence for me (I had dcis ten years ago). Am I worrying unnecessarily? Is it possible it's something maybe not even related to bc? I am on letrozole and iasobon and extra calcium.
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24-09-2017
08:59
Welcome back Mooney in every sense! Hope to see you on FB soon. Sorry to hear about the lymphedema - how annoying. Robin x
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07-08-2017
10:27
Congratulations Claire. You look beautiful and your hair looks amazing. I'm glad you had a wonderful day xx
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30-07-2017
02:37
Hi Kan. It sounds as if you have had a tough time. You are very welcome to this thread which has been amazingly supportive to everyone on it since January when we all started chemo. You may also get some helpful advice from the March starters thread since you started chemo in March so will be going through similar things to all of them. This thread isn't as active as it used to be because recently one of our clever members started an FB secret group and most of us have migrated there. You are very welcome to join us on it. Just let me know and I will add you. I'm glad you have found the forum - it's never too late to get some much needed support, advice and solidarity. Good luck. R x
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29-07-2017
09:43
Hi Beedot. Hope you get on FB soon. I think if you just join and then ignore all those friend suggestions, that will be ok. No-one knows you're there unless you tell them! But listen to the others as they probably know how it works better than I do. I've been to the Haven for nutrition advice and I've got counselling and massages to come. It's lovely there isn't it? Perhaps we should meet up! Glad you've finished rads and hope you're feeling ok. R x
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29-07-2017
10:37
I'm still receiving notifications from this page so I'm happy to come on here and chat to anyone who wants to stay here and not move to FB. I do love our FB group though! I feel like I've suddenly got all these lovely new friends! Hope everyone has a good weekend. R x
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12-07-2017
12:41
Ebim and Jackie. Have a great meet up in Spain and raise a glass to us all. It's lovely to think of teddies meeting in real life! Post a photo. By the way, I'm London based and would love to meet up with any of you who live near. R x
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11-07-2017
07:57
It's great to have the fb page! Blue what's your slightly fake name so I can spot you? I will keep posting on here though as I know not everyone can join the fb group. I saw a nurse and doctor today and they said I will need an ultrasound for new lump. More scanxiety. It is a very mobile little lump though so may be something called a breast mouse. Never heard of them before but they are benign so I'm hoping that's what it is. I'm just so fed up because we're going on holiday next week and you know how hard it is to relax when you have anything like this nagging away at you. Hope everyone is doing well this week. It's great you're getting over surgery so well Wtp. And well done on return to work Slowski. R x
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11-07-2017
11:57
1 Hug
Well done Jackie on finishing. You must be relieved that long journey is over. On the subject of nails. All of my fingernails eventually fell off. When I say fell off I mean they just became weak and soft and tore off about half way down. But not painful. Then stayed liked that for ages! Now I think they are very slowly growing again. White wavy ridgey lines on them. It has amazed me how many things you need fingernails to do! I never realised before. Last night my left big toe nail just fell off! Don't know where - haven't found it in the house and didn't feel it go. My left big toe is the only bit which has experienced significant numbness. Still is. Hair on head quite thick but very short still. Full on baby hedgehog look now. Still experiencing anxiety. Made more so last night by finding a little lump in the breast which has been treated. Will get the radiotherapy nurse to take a look today when I go for burn check up. It feels movable like a little cyst. But this is my reconstructed breast so I don't know what's going on there. So tired of all this anxiety. Looking forward to our fb group. R x
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07-07-2017
05:36
Blue I'm so sorry to hear your news. We are all thinking of you and sending love. Post more updates if and when you feel able. Sending virtual hugs. R x
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06-07-2017
05:45
Good luck wtp. I'm thinking of you. Your husband's surgery pants/hairnet confusion is a gem!!! R x
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03-07-2017
09:23
Blue, I think waiting for results is one of the worst things about this whole experience. Nobody else gets that except for us. Come on here as often as you like and have a good rant. Ebim, fantastic that you're finished. Have a wonderful holday. R x
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01-07-2017
11:08
Wtp I don't think you're being over sentimental at all. I think you have perfectly summed up in your post how we all feel about the support we get on here. Your words about wanting to be a good strong example for your daughter are very touching and sum up what we all feel. We stay strong for those around us. Jackie keep going. The end of rads is in sight I thought I would miss the daily routine of it when it ended but I didn't at all and now it seems a distant memory. Although I still have the sunburn! What is the add aspirin trial? Is taking aspirin something worth doing? Hope you all have good weekends. R x
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29-06-2017
05:55
Wtp I am so sorry you've had this news. Like many of us I suspect I looked at the clock at 3.00pm and thought of you. I hope you know we are all sending you massive virtual hugs right now. I know it's not much consolation but we are here for you. Much love R xxxx
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28-06-2017
11:21
Good luck today Wtp. Jackie thanks for the group hug - we all needed that. And the new party food looks fantastic, much better than sausage rolls. We can even forgive the sangria for being red as no doubt it tastes a lot better than chemo. Suze I meant to say I laughed at your vacuum cleaner fluff comment, as that pretty much sums up my hair. Looking forward to our fb group. R x
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