Wow @gromit12 love the photo and I bet you had a fantastic time!
@altoan it’s really interesting to hear what the next steps are, I’ve still got 4 sessions of chemo left so haven’t had a full discussion with the oncologist. All I know is it’s radio, hormone therapy and Abemaciclib. I’ve tried not to Google too much as sometime the side effects just seem really endless! I hope that you are feeling OK and not too overwhelmed by it all. It’s a shame your son had Covid I hope you were able to celebrate virtually not to mention your lovely cake xx
@elle16 and @emmaxoxo im really interested to hear how you get on, my radio and all the other stuff won’t start until September. Like I said before I’ve stopped reading some of it as it seems a lot! I started my chemo on the 4th April on one hand can’t wait to finish it but feel a little apprehensive about what’s to come.
@ivy-cat hope you are OK, thanks for mentioning about the counselling Im particularly stressed about recurrence so I think I might speak to someone, I’ve never had any counselling before but maybe how’s the time!
@isthisreal i hope you’ve had a good weekend and that you are not feeling too stressed about your surgery. Don’t be scared to ask lots of questions as i can imagine it must be really hard when you have to make the choice. X
To all the other April chemo gang not long now until we’ve all finished!! Big hugs Helen x
Hi all, hope you are all well and doing ok, just a quick update, hospital rang and I’m starting radiotherapy tomorrow, feel like it’s really quick as my last chemo was 5th July but not complaining, happy to get on with it, no news on bone density scan and can’t get a dentist appointment till 16th august so not sure when I will be stating medication,
Advice I’ve been given so far is moisturise 3 x a day , get my boobs out to let the fresh air get to them for an hour a day, drink lots water, rest and use simple shower gel xx
Oh my goodness. They’ve totally sprung that on you! It’s good though to get it over and done with!
For others on Abemaciclib, I’m starting it after radio and was in chatting to Sonia, my oncology lead, today and she said that most tolerate it fairly well but the diarrhoea is a massive issue for some on 150mg. The efficacy of 100mg is identical to 150mg so she said to speak up if struggling and they’ll adjust the dose instantly and that most people find it much easier. Because they’re using the data for the trials, they have to start everyone on the 150mg but it’s totally normal and fine to drop down a dose and better than quitting it. Apparently some people just stop taking it rather than speak up and adjust the dose.
We’re getting sorted to go to Spain next Friday before my radiotherapy and I thought I’d feel anxious that I’m not currently doing a single thing to fight cancer. I’m just still recovering from the last Docetaxel. I’m not in any way anxious though. I’m really welcoming the break from everything which is so unexpected and nice.
They’re waiting to start my Zoladex because the chemo stopped my periods and it’s very unusual for them to return quickly so they’re leaving me very drug free for 6 weeks which hopefully will help me feel like my muscles are not made of jelly and have no strength.
PICC Line is gone as of this morning and I cannot wait to swim!! My chest and back are so tight after the mastectomy and being so bedridden and I think swimming is going to be a game changer. I tend to wake at 6am so I’m planning to swim as much as possible in our pool on hols before the kids wake up. I checked my photos from last year too and half the pool was in shade at 4:30pm so I can do lengths then as well too.
Weather is in the mid-30’s which I’m a little worried won’t go with the intermittent sweating of menopause but hey ho! There’s always air con and a good book.
The enormity of what we’ve all done this year really hits home at the moment. I hate people saying “Oh you’re so brave!” We had no choice but to hang on for dear life to the world’s crappiest rollercoaster. I can’t help but feel that it’s left an unhealthy dose of trauma, being swept along on this journey we didn’t choose. But we survived and if a recurrence happens, we can and will do this again. I finally feel like I could cope again. I don’t want to but I will. That helps me feel a bit less anxious about the stalker who is staying with me for life. It probably helps that I don’t have the energy to even try to control it or freak about it. X
@swk1981 have a fabulous holiday - you so deserve the break. Isn’t it fab to get rid of the PICC line- I loitered in a bubble bath fir far too long once mine was out! The bliss! Learn to appreciate the little things Laura x
Well I’ve just been to the dentist on the instructions of the oncologist, due to the jaw pain, which is really bad today- he’s not prepared to x- ray until I’ve had some time to recover - so he’s booked me in for x-rays and hygienist in September when I’m back up here for herceptin jab. He says he’s impressed how I’ve maintained my dental hygiene. His one piece of advice was not to let my mouth dry out and that’s more likely to cause decay. So the oncologist will have to wait!!
Hope it all goes OK tomorrow @elle16 as you say it’s good to get it started. How many sessions do you have? Sorry if you have said already. I can’t wait for no more hospital appointments although that seems a way off yet. Everything seems so much more complex than a simple op, 5 days radiotherapy and some pills for a few years that they told me at the very beginning!
I had my dental check today and she advised using 5000ppm Duraphat toothpaste whilst on the bisphosphonate treatment which she mentioned in my letter to oncology, she said it can be prescribed as repeat prescription. Just thought I’d share that.
Hi Emma, I’m having 9, 5 plus 4 tumour bed boosts, hospital just rang again to say the Machine I should be using has broke today and won’t be working tomorrow but as they really want to start me tomorrow they want me to use a different machine and made my appointment a little earlier, I shouldn’t think it will make much difference
I actually hate the dentist and I’m more anxious about that then anything,
Ive also had a telephone appointment come through for my oncologist in September so feel a little unsure when I will start taking tablets/injection/drip, they did say I should hear this week about bone scan so I’m assuming an appointment will come through once that’s done. @swk1981 so jealous of your holiday, sounds like the perfect way to spend your time between treatments, they have told me that I could go away 2 weeks after radiotherapy finishes but I’m unsure what to do at the minute think I’m just going to play it by ear and maybe book last minute if I feel upto it.
@isthisreal oh that is awful I didn’t even realise it was a thing!! How can you have to go back to chemo? I may have to go on Kadcyla plus herceptin if there are cells left. I bet that’s really knocked you for six. Hugs xx
I hadn’t realised this either till I spoke to my BCN last week and asked if I would get my Hickman line out before or after surgery (mainly as I wasn’t sure if I’d need to keep it for administering the general anaesthetic). She said that I wouldn’t need it and went on to mention if I didn’t have a complete response to chemo then I wouldn’t need the line in as they either do more chemo via oral meds or more targeted treatment (I.e. phesgo for longer). She specifically said I wouldn’t get more IV chemo (but that may just be my own HER2 positive, hormone negative type). I also didn’t realise it was a thing. I know they probably don’t want to overload us with info at the start but I personally would prefer a little info about what actually happens early on so that we’re not caught off guard by it being mentioned months later just when we’re finishing chemo!
I’ve heard of Kadcyla but don’t know anything about it unfortunately. Totally get what you mean…. I honestly would rather get the info up front to set expectations so you know from the off what happens at each stage and that certain further treatments may be possibilities. I’ve kind of found things out either by accident or in dribs and drabs. I’m not meeting my surgeon till 7th Aug and have so many questions as all he said at the start was he would be able to do a lumpectomy but it’s only through reading up on stuff myself that I even found out about the SLNB and margins etc so I’d like a lot more info about the full process and what to expect after they have the pathology report
OMG, I had no idea this was an option, not what you want to hear, completely understand how this must make you feel, keeping everything crossed that this won’t be necessary for you
@isthisreal - I was told this too but he said it would be oral chemo (just a tablet) and although it has side effects it’s nothing like the chemo we’ve already had! The main side effect is hand / foot syndrome which can cause redness and peeling skin on your feet but no hair loss!
Oh how frustrating to hear, I hope your post surgery biopsies are successful and you won’t need further treatment Sometimes half an answer sends you off down a rabbit hole instead of being the reassurance we crave.
Just catching up in the messages. Sending you big hugs and let’s hope all margins are clear and no nodes positive. Also hoping that your oncologist is able to explain things a little more in a less stressful way! Friday is still a big celebration as you have come to the end of one chapter and you have come out fighting H x
I hope your meeting goes well on the 7th August not too long to wait now. I’m sure they will be fully prepared for lots of questions from you. I wrote a lot of mine down as I always forget in the moment! I hope you are OK, try not to stress too much. You have got through a lot in the last few months, you can do this! H x
Dosed up with immodium as bouts of overnight and on our way to Somerset to collect the keys to our new house 2 nights in a hotel as no furniture yet! Actual move next Wednesday - didn’t want to do it all on one day, too much stress!!
Helen x
Laura x
Sometimes half an answer sends you off down a rabbit hole instead of being the reassurance we crave.
overnight and on our way to Somerset to collect the keys to our new house 
2 nights in a hotel as no furniture yet! Actual move next Wednesday - didn’t want to do it all on one day, too much stress!!