My dogs have been by my side throughout. Animals are the best emotional support.
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Hey @vikki1 call the dentist. They can prescribe a mouth wash which is brilliant. It numbs and heals
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Sitting here in tears cuddling a dog. After some chasing last week and this morning regarding a heart echo appointment that kept not happening Iām now told my chemo start is cancelled this Wednesday. Ring on Thursday for update. Provisionally rebooked chemo for 2 April, they couldnāt even get that right, the time they gave me was too late in the day to fit the observation period Iād been told was required. I had to point that out. My confidence in their competence is currently rock bottom.
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I have a numbing one from hospital. Seems to be healing up now
My treatment was delayed as i got diagnosed over Christmas and it was all done back to front. You will get there eventually. I can totally understand your tears. Once you know you have Cancer you just want to get started and fight. Waiting is so awful as you fear each time its delayed its just still growing. Once you start its a pretty thorough process, at least it has been in Kettering.
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Hi yes I am on the same. My side effects were stomach cramps diahhorea, fatigue, morning nose bleeds. They reduced my treatment by 20% and my tummy is better.
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Hi @genericuser1 welcome to the thread and well done for reading it all!
Love the name!
Donāt apologise for rambling, if not on here, where? It can feel much better sharing with others and this forum is great for that.
Iām sorry to hear of your diagnosis and hope that your appointment this week allays some of the unknowns. Co morbidities are definitely taken into account when deciding on your treatment plan as well as family history that may impact it as well. I was originally offered Carboplatin, Docetaxel, and Phesgo but it was changed to Paclitaxel and Herceptin due to my own health issues and my family history of heart disease as they ar3 both cardio toxic as well as radiotherapy near the heart. I was told had the first lump been any bigger we would have had to have a serious talk about the first regime.
I like you want to know the information and that Googling responsibility can be fantastic source of knowledge. Itās about finding the right source and there is now a PIF tick system to show that content creators know what they are talking about. Looking at charities, ac.uk (university) or hospital sites are usually great.
Be thinking of you Wednesday.
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Afternoon all
What a busy weekend itās been on here! I had Watching Week with my drama students on Saturday which went fabulously well and then yesterday my husband turned 60 which is obscene and Iām not sure itās allowed. 40 I can compute but 60?! He doesnāt look anywhere near his age and certainly doesnāt behave like it. In fact, knock a zero off the 60 and youāre nearer the mark there. Anyway, Iām proud to announce that I partied with the best of them yesterday but am in work today and feeling fine. I didnāt go mad but then at 54, it was high time I started behaving my age so Iām feeling pretty pleased with myself today. More proof that the body does recover from all the chemo and other drugs that a HER2+ diagnosis brings and partying (in moderation) returns.
@naughty_boob thatās very kind of you but trust me, there IS plenty of hip fat for the plastic surgeon to be getting on with. In fact if he bodges up the first attempt he will have no shortage of supplies if he needs to go back for more!
@arty1 - Congratulations on becoming a Community Champion and may I say, not before time. You are a blessing to us all. I hope your gene test results come back quickly. Our dear Naughty Boob was also one of the first people to answer me and we messaged daily for a few months. I will forever be grateful to the wonderful woman who is also a blessing to us.
@marymop I am also HER2+ and hormone negative. Seems like you are in good company!
@jayveebee Well done you on getting out there with the doggies after Kadcyla. I had a corgi once. He was so characterful but very wilful. He could play cricket too which we discovered by accident after weād got him from a rescue centre. Post a pic!! And yes, hereās to boob lifts for one and all!
@anb1 Totally agree. The HER2+ Pack rocks!
@sez I had black dots for tattoos but canāt say I ever notice them. Probably connected to the fact that I am generally not wearing glasses when Iām naked but also because they really arenāt that noticeable. I forget I have them. I spied the one in the middle a few weeks ago and remembered I had them for the first time since October of last year. I hope that reassures you a bit if you find you do have to have them.
@Linda_Corinne Good luck with getting rid of the seroma.
@jobieejo GOOD RIDDANCE TO GIRT!!! Yippee! Iām not sure what your surgeon meant when he said other bits but could just be the tissue around the tumour to make sure you have clear margins. How long do you have to wait for results? Can you ring your breast care nurse to see if there are any notes on your file about what was taken during the op?
Hello our @pennyp - I am so glad to hear that the IBS is possibly settling down. Mine seems to be doing the same. Well, I say that, but I had to run to the toilet 3 times before going to sleep last night. That will be the 3 x wine and sodas and the vegetable jalfrezi!! But it was a birthday so I selflessly consumed all that for my husband. Heās lucky to have me. Delft is going to be amazing. Pics please!!
Hello @hazaar and welcome to you. Bed is a good call after chemo. I even got my 15 year old son to cook dinner on a Thursday. Call in the favours.
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Hi @jjjane97 - Thatās annoying to have had a bad reaction to the docetaxel. I really hope they can get on top of that. I know a few women on here have had bad reactions to various drugs along the way. Hopefully they can give you an alternative or something to stop the allergic reaction. I do have a plan for finishing Phesgo. 
We are straight off in the camper van the very next day up to The Highlands to do some walking, sleeping, eating and drinking. It will feel so good to hit the road and know that treatment has finally ended. I donāt think I will be able to believe it. Buttons is cute as one. What a darling.
Iām just reading past posts as I type and am laughing aloud at all this talk of hard-hit undercarriages. 
Safe to say thatās a common complaint.
@arty1 That wig is spectacular!! I love it! (Still jealous that @naughty_boob got to meet you and I still havenāt. Sāokā¦Iāll get over it!)
@rrey You are almost there. I remember when you joined us and now you are almost at the end. It does pass, doesnāt it.
Welcome @fowkey72 - I hope the results come in quickly. Same for you @erica. Please let us know.
@jobieejo - Brilliant that you have a holiday booked. Top marks to your hubster. Doing exercises with ease can only good.
Hi @jessybessy - That is really good news and thanks for sharing the positive information. I had to leave a Facebook group that seemed to deal in horror stories. I have also been told that a HER2+ diagnosis has now become one of the best types due to the wonderful Herceptin. Great to have that reconfirmed.
@sooz1 I have nasal congestion AND a scabby nose on the inside. My oncologist says heās come across this enough times to be confident itās due to the treatment. Looking forward to a fully functioning nose again.
@vikki1 Iām so glad you have joined us. Those costumes are phenomenal and needed to be shared. I just love that you dress up for chemo and I mean DRESS UP!! Sounds like you were bouncing off the walls with those steroids and then had a crash, just like I did. I got given that Corsodyl mouthwash by my team which also sent my teeth a lovely shade of grey. Fortunately my hygienist was able to put that right. Iām rather partial to a costume myself. Eurovision approaches in mid-May and I already have some shiny rainbow trousers. I need to focus on my top half now. This is the first time I have felt my spectacular Eurovision outfits just pale in comparison to Chemo Cow and Feckit Frog.
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Hello and welcome to the gang @genericuser1 - How marvellous that you can understand the medical jargon and even have a morbid fascination in it. That can only be good, right? Push for answers on Wednesday. You have to advocate for yourself. Ramble away; I do! Pets are very popular on this thread. They are such a massive help when you are going through treatment. A cuddle with my dog floods me with endorphins. They really are the best.
@carrie5 Iām so sorry that your chemo is cancelled on Wednesday. We all just want to get on with it and a setback is hugely disappointing. It sounds like you are going to have to be on their case and pushing for everything like a thorn in their side. Itās a real shame because itās the last thing you need right now but if thatās what it takes then make sure you get what you need. Big hug to you, my friend.
Finally, that PIF Tick thing is brilliant @naughty_boob What a find!
And now I am off to heat up the leftover vegetable jalfrezi. Better tell the lavatory to prepare itself for a busy shift again tonight!
Love to all,
Salbert
xx
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Thank you @vikki1 you are right it will eventually happen, and @salbert - yes I will just have to be a pain in the whatsit to push this.
I was so cross and frustrated this morning that I went and cut the grass to within a centimetre of its life. That calmed me a bit. A friend made me smile by enquiring whether I had any grass left.
I have already started a list of things to check out when I ring to check progress the scan appointment on Thursday as I have realised there will be knock on issues they probably wonāt pick up. I had to constantly advocate for my husband who had Parkinsonās and who died last year - to stop the NHS either forgetting him or actually damaging him with wrong prescribing and many other things.
Iām really glad I took notes in my appointments so far - you feel a bit daft writing it all down - but it enabled me to pick up on things and challenge them so Iād encourage everyone to do the same!
I was shocked at how fragmented things are and dictated by NICE guidelines and care pathways that seem to have replaced common sense and clinical judgement! I managed an NHS clinical speciality before I retired and Iād have been mortified if weād been that disorganised with planning care for a patient.
Enough of that. Just reading this thread for a bit tonight has made me feel much less isolated, bless you. Hearing some of you near to regaining your freedom as well as everyoneās ups and downs. Wishing everyone the best wherever they are at!
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I can understand why you are so frustrated and cross, @carrie5 when you just want to get on with things. Its tiring having to double check whether people are doing there jobs properly. The only time i have had delays is when the echoās have not been booked at the appropriate time or when bloods were required which were not on the system. As you say you just have to speak up for yourself.
@salbert i do love a curry, but it has the same affect on me.
Have been to second part of Moving Forward course today and there were good discussions. The BCN went through our questions in topics. A whatsapp group has been set up so maybe some of us will keep in touch. I think we all came away in a more positive frame of mind. Ive already arranged to meet up with one person who lives quite close to me (about 2 miles as crow flies), she had her treatment at a different hospital. We have decided to meet for walks and coffee, cake may also be involved. Anyway iām off for an early night ready for my adventure tomorrow.
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Hello everyone
It has been so good to read all your posts. I finally saw the oncologist last week. I have my pre assessment and bloods on Monday next week, PICC line put in on Wednesday and my first EC chemo on Thursday every 3 weeks for 9 weeks. Then paclitaxel every week for a further 9 weeks. During all that at some point I will be having trastuzumab, Zolendronic acid and Letrozle. I canāt remember the order of the last 3 my mind was battered when they were explaining it all. Following all of that I need a 3rd surgery to make sure my margins are clear this time. Does this all sound familiar to anyone? How did you all feel during it?
Since my diagnosis just before Christmas 2024 and my 2 surgeries I feel physically and mentally drained, so goodness knows how tired im going to be during chemo.
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Hi all, have any of you cold capped all the way through chemo, and how did you get on?
Iāve had 4 rounds of EC plus an initial dose of another (canāt remember which), that I reacted to.
Iām now going to start 12 weeks of paclitaxel (tomorrow), and to be honest Iāve had enough of the cold capping.problem is, itās doing its job, and to just look at me you canāt tell (although have prob lost about 40% - I had very fine hair, just lots of it!). Did people lose their hair regardless? Did you just have thinning? Thanks for any info!
@lilyanne I havenāt found chemo too bad (so far). Lots of manageable niggly things (fuzzy mouth, tiredness, brain fog, nausea, stomach troubles), but I think Iāve been lucky and have been pretty much back to ānormalā on the third week. You very well may be the same! x
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Hi @lilyanne
I can only go on my treatment plan, but as regards timing of treatment, I had surgery, then chemo which was 3 EC every 3 weeks, followed by Docetaxel every 3 weeks, 3 infusions. They introduced Herceptin injections, (trastuzumab) with my first docetaxel. I now have those injections every 3 weeks. After my final docetaxel, I had to wait 3 weeks before starting letrozole. I have not yet had zoledronic acid but I am seeing my oncologist on 5 April in order for me to sign the consent forms. I also had radiotherapy 3 weeks after my final chemo.
Hope this helps, all the best.
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Hi arty I still donāt know how to post on here felling low this morning had acid reflux all night took emeprizol but still not sleeping, got my 5th chemo this morning just having a bit of a rant feel fed up xxx
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@carrie5 i can understand your frustration I would be the same. I agree with writing everything down, I did, I went through 4/5 note books including a daily check in with myself. I found it essential especially when they said something different to what had been agreed. I was able to call them out and give the date, time and person I spoke to. I think working in a bank for 15 years paid off, when you were always told to record details of calls with date and times, it was before the time of recording the conversation.
@pennyp so pleased the Moving Forward was a positive experience for you. So good if you can meet up with others locally to chat.
@lilyanne so good you now have your plan. I had Paclitaxel only but Iām sure there are others on here that had the same regime as yours. Chemo is not great but itās doable. My advice is to plan ahead with meal prep/ ready meals for freezer and ask, yes ask for help before your treatment starts. So many people will say let me know what you need but then during treatment we donāt have to energy to say and donāt get the help we need.
@leelee1 i cold capped for 12 weekly Paclitaxel successfully, kept most of my hair with two small patches above my ears, probably from pushin my glasses on under the cap rather than over. Paxmanās website has a way of putting in your regime and the % of hair that could be kept. Mine was 70% of keeping 50% of my hair and I was better than that but I do have a lot of hair so the thinning was not so obvious.
Here is a thread of another positive experience
@marymop sorry to hear you are feeling low. We are hear to listen to you. Please phone your team with your symptoms if they persist, they may be able to change your medication. The BCN nurses are available to chat if you need from 9-4 today 0808 800 6000.
Thinking of you all
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The fragmented nature of the whole thing is so difficult. My chemo nurses were amazing but the communication between the various teams was a nightmare. It does feel like one more stress when you have to be checking everything is in place especially when you have no clue whatās supposed to be in place! Hopefully itāll soon be smoother sailing for you x
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Yrs it does. Thank you
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@salbert Thanks for the welcome and just for being you in general - Iāve found reading your posts a lot of help
Do you (or anyone!) have any advice on how to talk to the doctors so they actually listen to you and answer questions etc? I find I get so muddled sometimes in the very quick and stressful appointments that I forget things, even if I have written them down, and just allow them to rush me back out the door! 
I was thinking of saying at the start that I have some specific questions I might like to ask at the end if they havenāt covered it, so they know to expect it?
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