Nice to hear from you Nicky. I also hadn’t realised that Robin and Mooney were on the second tranche of this. But I suppose it isn’t surprising that some people are going through it again. You’re both very positive though. I think it’s good for the rest of us to see you here and realise that sometimes it does need zapping more than once. Kudos for the way you’re both coping. And an extra hug, Robin, because you’re feeling bad. Which is entirely understandable.
I’m on tenterhooks as our new house is supposed to be completing tomorrow. The chaps payment has stalled though, so goodness knows if it’ll happen Can’t settle down to anything right now.
Hi Robin
I am so sorry, having to go through the waiting again for the biopsy results an absolute bummer. Hopefully they are just being ultra careful and everything will work out. But know what you mean about family celebrations, I suppose you just have to try to put it on one side and put your positive ‘face’ on for the weekend. I have all my fingers toes and everything else crossed for you. Just throw yourself into weekend and try to enjoy, easy to say chemo buddy, difficult do.When do you get your biopsy results.
Scotty my surgeon wanted me to have chemo first to reduce the tumour. But my oncologist was very sure that it could be removed safely and surgically first with chemo after. So that’s what we went for.I am so pleased I must say as i am just pleased to get rid and I can understand your anxieties. But the chemo is zapping not just the lump but any stray cells so stay strong and positive. Some days seem full of wobbles though! I think when I looked back at my last cycle there was about day 7 or so when everything seemed gloomy I think everything messes with your head!
Ooh Ali I hope it all works out with your new house. Exciting!
I am very positive about things this time round I feel the chemo, 10 years of hormone therapy and radiotherapy will kill everything! I was so grateful not to have chemo time as I was so frightened of it. Big mistake of mine I think ladies. We go through all this to ensure we have a future with our families.It’s not as scary when you start, the thought is worse than the actuality. Fear takes over unfortunately.
Sorry for the long post!
Hugs
Mooney
Robin & Mooney - I don’t post regularly but I wanted to send my love to you both. This is not an easy journey for any of us - especially if you are going through all the anxieties for a second time like you two. You are strong ladies and it seems a few of us have had difficult days today - I know I’ve had a low day today- thoughts are with you. Xx
Oh Robin, I feel for you - waiting on scan and biopsy results is torture. And you ladies going through this for the second time, as if this isn’t hard enough…
I’ve been driving myself mad with my lump tonight - keep finding extra bits after my ultrasound at the wknd - was hoping they would say it had reduced loads but it’s still really wide and now I think I can feel it bigger than before but in another shape.
I was meant to have surgery first as original biopsy was grade 1 IDC so they were relaxed - even though I wanted it out ASAP (same feeling of wanting to cut it out myself!). It was a huge fast growing lump, over 10cm and the docs didn’t believe that I’d only just found it. When they realised it had spread to my lymph nodes and saw it had visibly grown in the 4 wks since diagnosis, they realised it was not all grade 1 and got worried, cancelled the surgery and put me on chemo round 1 just two days later. It was pretty scary. So now I’m worried that the tumour is super aggressive and does that mean the rogue cells are?
So easy to go in circles with this!
Sorry, having one of those nights! Round 3 has taken its toll on me this time. 1 more EC to go then I’m halfway though this part…
Oh wtp just been thinking the same myself. Mine isn’t as big as yours but it came up really quickly and is grade 3. I’m sure it’s wider. I have to wait a month until they do my next MRI. I have been trying not to think about it but it’s hard late at night.
The only thing I can say is that stressing isn’t good and may be actively bad for us. I’m going to try reading and keep my hands off the bl**dy thing if I can.
Make that 3 of us. It’s so hard not to poke the blooming thing all the time. I don’t see onc for another month and have to wait until chemo 5 for scan. Takes its toll mentally. Feels like that part goes untreated?
I still have my lump too, but mine can’t be seen or felt. I’m not sure if it being invisible is easier to deal with as I don’t have a constant reminder, however it does mean that not even the onc can know what it’s doing in response to the chemo or even hazard a guess. No rulers from them, no poking by me, as it would be fruitless.
I think because no-one can see what’s happening, I’m having an MRI next week after T number 2 and before 3 to see. I’m pleased that I don’t have to wait any longer tbh. I hope I have positive news to share after that to boost all of us still with our lumps in place that this is a good way of doing things!!! When they explained to me about chemo first it made sense, to ensure I was having the correct chemo which can be changed if necessary, and stopping any circulating cells ASAP, but it is hard, knowing the lump is still in me I still have breast cancer.
Wtp and Ali - like you my lump was grade 3 fast growing and in node. I have been prodding non stop and although it is harder to feel it just seems a different shape if that makes sense. Flatter and wider? Am also sure I can feel another lump on the other side of same breast although onc couldn’t seem to feel it. I think I am being paranoid! He did mention that I would have another scan at some point maybe after 2nd round but hasn’t mentioned again so I might ask when I next see before round 3. Will it be ultrasound or MRI do you think?
Day 5 today of EC2, steroid free but now to start the gcsf jabs. Still feeling vaguely nauseated and also guilty as older son going for secondary school interview today and I just didn’t feel well enough to go with him. So now anxious about that as well! Isn’t it funny the other things that go along with the chemo - I really do feel bad that I can’t do everything I would normally do with my 2 kids.
Hope everyone has a good day
Egg
So that wasn’t a great night’s sleep. I’m banning myself from prodding in the evening, especially because now it seems to be back to its original size! (Feel a bit of an idiot TBH).
I have an MRI in two weeks, after my third round of EC. Like Scotty, I’m HER+ and my onc wants to check progress before we move into round 4, then Herceptin, docetaxel etc. He did have a prod last time, but since I changed oncologist he didn’t know what it had done. Ha ha just thought of an inappropriate comment but will restrain myself.
It’s really difficult when you’re not up to doing things, but look the same as when you are. I don’t have children at home but that must be more challenging. Kudos to those who are managing all that.
Ok, excitingly I think we are driving to Manchester in a bit as house is going through today (exchange and completion). It’s probably going to be filthy so I’ll be cleaning all weekend. This is unnatural- I never do housework normally.
Congrats Ali!!! Yay! Boo to the cleaning though
We moved into our place in Jan and settling in has been a good distraction.
Egg - I have the same feeling re an extra lump on the other side of the same breast. It’s closer to my lymph node scar. I was getting my husband to look last night and he thought maybe it was something to do with that surgery but I don’t know. It feels tender, can feel it from the inside. Def flatter and wider - unless I missed the width when the lump was sticking out so much. I guess they change shape and start to break down but as no one tells us, we end up speculating all sorts.
Does anyone else find that the doctors don’t give anything away? Understandably, they can’t commit to anything until they have hard facts but sometimes I just want to know what they are thinking.
I’m coming out the other side of round 3 but it’s been a lot harder this time to play with my daughter and give her attention - even stay awake to read her bedtime story. I’ll plan to do something fun with her tomorrow but can’t help feeling guilty.
Blue - it must be hard knowing the lump is still there but not being able to tell if there is any change. I kept thinking of mine as a ticking bomb and just wanting it out ASAP. Hopefully after the MRI you’ll get some good news x
We all seem to be stressing and worrying at the moment - lets just ride this out and hope for the next period of calm resolution. On the ‘growing lump’ feeling for those having chemo first, I think there’s a ‘swings and roundabouts’ aspect to that too; I had surgery first and it was found to be more aggressive than the Grade 1 IDC they first thought, and also in the first lymph node which they were fairly confident was clear. This means that I feel maybe they would have gone down the chemo first route if they had the full picture, and also, critically, how do they know the chemo’s working when there’s nothing identifiable to measure? My onc admitted that they didn’t know with this sequence of treatment, so I guess psychologically from our point of view its the trade off of having the tumour out against being able to see that chemo has been clinically effective. I am going to ask my team more about this on Monday as long as I get to see the actual (lovely) consultant.
A bit of dark humour - I went on the LGFB workshop yesterday (yay for the goody bag), and at one point a very young lady asked if anyone was having Herceptin. I said I will be but not at that point yet. She then proceeeded to say how it was the most painful experience of her life etc etc. The poor organiser was mortified as she rattled on about the awfulness of it, and everyone looked really uncomfortable, until another lady who had been in ‘deep chat’ mode tuned in and said she had it, and it was completely fine. And breathe.
We will get through this, day by day, jab by jab, scan by scan.
Well what a lovely morning! I managed to get referred to a day centre at the local hospice. I was a bit sceptical and thought it wouldn’t be my sort of thing. Quite wrongly, I associated a hospice with pallative care and very old, very ill people. I was wrong. I haven’t laughed as much since diagnosis or felt so relaxed. I was treated to endless cups of tea, a 3 course lunch ( cake and custard not so good for Feb Fat Busters!) a hand massage, reiki and a nail treatment. All free. Honestly check out what is available in your local area. I only came across it by chance through another patient I got chatting to. No health professional has ever mentioned its existence or that as a patient undergoing treatment you are eligible. Think I will sleep better tonight as a result! x
Sounds great Scotty, as a matter of interest how did you get referred. There is a day hospice that seems to run similar service here. I am wondering now whether to go one day. It says it’s for people with ‘life limiting’ conditions including cancer (!). Don’t quite put myself in that category.!
Have a good weekend everyone.
Hugs
Mooneyxxx
I know what you mean. I was a bit insulted/ worried at first. I’m not dead yet!! It’s so not that. For mine you needed a GP referral. Secretary filled out a form basically. Would recommend looking into it x
I’m off to a Look Good Feel Better workshop tomorrow and am really looking forward to it! Has anyone been to one? I am interested in finding out how to fake eyebrows and lashes as mine are thinning now and I feel it’s only a matter of time. I like to be prepared too!! My skin has become really dry on chemo so any specialist advice for that tomorrow or on this group will be gratefully received!
Hair wise, I’m struggling. I have bought 2 wigs and dont like either! I just cant face wearing them and they feel so unstable on my head! Although I’ve used the cold cap twice now and still have about 60-70% of my hair, I have some large (and visible) bald patches. I’ve been using a product called toppik to fill them in quite successfully, but it’s becoming more difficult and with further hair loss it’s likely to become more obvious. I have only told a handful of people of my diagnosis, so at work, in my village, socially and the school run I’m trying to pass myself off as if nothing’s happening!!! I can’t bear the thought of people staring at me or talking about me, which I know sounds pathetic in the scheme of things, but worries me enormously.
Any suggestions?
Blue2, snap, 2 cycles of FEC and lost about 70% despite cold capping. I have wig ready but have managed so far with cotton beany type hats around house with fur band over it outside or a hat. I was very self conscious meeting a friend for coffee on Friday wearing a hat which I left on in the cafe. A different friend came in by coincidence and looked through me until I went up to her ! On the other hand, there were other people in there who had hats on, so in a way we are lucky at the moment that the weather has been hat weather.
Yes to Look Good Feel Better, went last week and really enjoyed it, especially, as others have said, the fab goody bag. The 2 ladies running it were great and it was also good to meet the other attendees and compare notes.
Yes Slowski, winter is our friend, head coverings wise!! I have also kept a hat on indoors and not felt too bad about it, but was with a friend who knows of my diagnosis and she kept her hat on too, to support me!
I am covering up my bald patches with toppik for indoor socialising and work, but im very self concious, and I’m wearing woolly hats the rest of the time. Around the house I’m not doing either, just being au natural, as luckily, people rarely come around on spec!
My chemo continues to June though, so I am concerned about what to do as the temperature rises if my hair loss continues… See how much I like to be prepared??! It’s February and I’m trying to plan for June…!!
Blue2, I recommend you take your wigs along to a good hairdresser to trim and shape them for you. Trevor sorbie runs a charity called my new hair - if you Google it you can get recommendations of local hairdressers who will trim your wig. It’s not free but does give you added confidence. As for hats, I’m wearing them indoors all the time, even at home as I don’t like my husband seeing my bald tufty bonce. I even sleep in them! Partly for warmth. If I still have to wear hats in the summer I’ll switch to cotton bandanas - I’ve got one from Annabandana which is a good source. I don’t think people notice if you keep a hat on indoors - so long as you don’t wear a Busby in the cinema! R x
