@lumpybyebye that is truly SHOCKING 
Can your oncologist not get involved and speed things up? If chemo has exasperated your condition / symptoms then they need to make you a priority.
You shouldn’t have to go private - the have a duty of care surely?
@poptart I see my medical oncologist at the end of the month after radiation fractions (starting next week.) Hopefully she can sort something, not holding my breath.
I had to fight the NHS booking system to get my teeth sorted for this shit show. So many phone calls. I’m out of oomph at the minute advocating. I started endocrine therapy on Sunday aromatase inhibitor AI , mouth still quite sore and tomorrow I have my pre rads measure poke and grope.
I’ve hit my medical wall - again. I’ll leave a message with the oncologist secretary tomorrow, if I have the energy. The AI treatment, Anastrozole, is fighting against the other meds I’d started to help eleviate the medical menopause #2. So back to insomnia and hot flashes never mind the muscle and joint pain. Feckn horrible.
I bumped into a colleague today at Boots (picking up my four different prescriptions for 7 different meds for side effects) - she said i looked really well with colour in my face … i was having a skin reaction from washing my face in the shower with my usual face wash, 8 hours later colour flash hadn’t subsided… my body doesn’t like facewash now either. Still red now!
I am so over all this side effect shit. Never ending! Tomorrow getting measured to get my wonky tit cooked, deep joy. Honest to God this is shite!
Karen 
@lumpybyebye yep it is total shite. You did make me laugh with ‘poke and grope’ though, so thanks for that. I remember when I had mine done. It was the day of the Queen’s funeral and I was wearing the world’s squeakiest shoes. I caused havoc in the waiting room when it was my turn to go in.
@lumpybyebye I’ve been following your experiences and just wanted to say that my bisphosphonates have been delayed too. I had a dental and hygiene check before starting chemotherapy and I was good to go (I’ve got more crowns and implants than actual teeth) so hopefully not much to go wrong.
My vitamin D levels were low so I couldn’t start the bisphosphonates, I’ve been on a weekly high dose of vitamin D for 6 weeks and the levels were good enough to start today. I’ll be having oral bisphosphonates for 3 years after my infusions finish so I expect I’ll be on vitamin D tablets too for the duration.
Sorry that you’ve had such a rough ride but you write beautifully 
@lumpybyebye I totally get that you are out of oomph advocating for yourself. You have been through so much.
That’s why I think your oncologist or BC nurse should be doing more to advocate on your behalf. Surely he/she can contact the relevant department and speed your allergy appointment up?! I mean, you have an epi pen already so it’s quite serious - full blown allergies that are constantly developing - we’re not talking slight intolerances here.
Sorry to harp on, I’m just so incensed and disgruntled on your behalf.
Sending strength and love x
I’m not sure if this service exists at every hospital (I hope it does), but about 3 weeks ago I broke down all over the poor BCN at a wound check. She referred me for cancer counselling at the hospital. I had a call yesterday with an appointment next week. I thought a 4 week turn around was pretty good considering the usual state of MH support.
Oh @dilly sending hugs. Yes I got referred to psych services at the start and the turn round was excellent. Plus, the counsellors specialise in cancer care. Definitely worth anyone checking out, and I hope the service helps you. x
@lumpybyebye that is insane!!! I am sorry you are having such a tough time. You are the biggest fighter I know!
I think people alot of the time when looking at us, want to say you look really well. And you are standing there thinking you are a f**king liar!! lol
I have had two weeks off hospital appointments recovering from the last chemo, and went back in this week to full on hospital appointments. Pre Surgery Assessment on Monday and an ultra sound (where I found out my lump had shrunk to 11mm, it started at 22mm).
First proper blood test yesterday since PICC line removal, definitely not as scared of needles after doing those 41 bone injections. And then Oncologist phone call this morning, telling me my bloods are all good to go for surgery.
So its really happening, under 2 weeks and I have surgery. Equally excited to have it done and the tumor finally out of my body and scared of having surgery.
I have also been given my pathology results date ready, on the 8th April, that’s super organised!
@dilly we have a charity in the cancer unit called the Fountain Centre, and I have signed up for free counselling sessions with them, just on the waiting list at the moment, I will get 8 free sessions, thought it was best to get on the list early ready for active treatment finishing.
I hope that everyone is doing well this week!
Hey ladies, I’m really fed up.
There is now some confusion as to how many Paclitaxel cycles I’m having.
I had 4x fortnightly EC and then I was originally due to have 4 fortnightly cycles of Paclitaxel.
I asked if I could have the Paclitaxel weekly instead of fortnightly due to less severe side effects. My oncologist agreed and told me I would have 9 weekly cycles of Paclitaxel.
I saw a different oncologist today who said I am down on the system to have 12 Paclitaxel and that is ‘standard’. She was pretty adamant. I’m so upset!
I’m due to have #8 this Friday so in my mind, next week was my last one.
When she told me I might have to have an extra 3 it really floored me.
If they had said 12 from the beginning then that is what I would’ve been mentally working towards. But to be told at this late stage that I might have another 5 to go (rather than 2) is really upsetting.
I’ve got to wait until next week to see my usual oncologist to find out what the plan is.
Obviously I will do whatever will give me the best overall outcome, but being told different things by different oncologists doesn’t fill me with confidence tbh.
@poptart I am so sorry that’s happened! They must understand that we all put that end date in our minds as our target to make it to and to then add on 3 more is mentally hard!
Gosh @poptart that is hard. I hope it’s just the 9 sessions for you. I had 9 Paclitaxel, but then I had 3x 3 weekly EC so that’s a bit different at the start to you.
@lumpybyebye I don’t want to be one of those annoying people going ‘have you tried…’ when you’ve probably tried everything already, but in case you haven’t and for anyone else reading who might benefit from the info, have you looked into Mast Cell Activation Syndrome? And have you tried lots of different anti histamines to see which ones with best? You could run an air purifier in your house as well to trap any allergens floating around.
For those of you who have started radiotherapy, when do you get given the dates and times? I’ve got my setting up scan next week but I haven’t heard anything else and I need to know as it will probably be over the Easter holidays so I need to arrange childcare
I got given my schedule of radiotherapy days and times at the planning scan appointment, so hopefully you will get yours then when you go next week 
@orchid2 I am 15mins away from my rads planning scan - i’ll let ypu know the craic about that.
I unfortunately had a full mast cell activation a few months ago ending up in hospital for several days, wouldnt wish it on anybody, horrific my hands were so swollen my skin split and bled. That has triggered hypersensitivity reaction HSR. Keep getting new reactions - such fun. My immune system and gut are in turmoil. 
Uncertainty of duration to heal - I have had decades of IBS, food intolerances but now has gone crazy! Unsure if it is my new normal.
Anyhoo lush day to whip my girls out for yet more randoms. Once upon a time I had dignity …
Karen
@orchid2 Done.
Short meeting to confirm treatment plan and answer questions and go through consent forms, again. In to CT donut room. Gown supplied but brought my own. 2 male, 1 female staff on team. Bed adjusted for me, extra padding for my back ( still not right from Xmas) arm braces to hold in place. Tape with metal wire put on various places to mark. Explained what they were going to do before touching. Practise holding breath for 20 secs. CT scan - took about 10 mins. Done. Given start date - further dates for first week on first day of rads. Next dates TBC on a Friday.
Lovely team. Felt grand. Glad I had arm length gloves- bloody freezing.
Hope this helps.
I’ve ‘freedom’ until 23rd!! Off to Ikea for a sneaky trip. Whilst in Southampton…
Karen
@orchid2 just out of interest, did they ever explain to you why you had 9 Paclitaxel and not 12?
Everything I read says 12 is the ‘standard’ except in some circumstances - but it doesn’t really say what these circumstances are apart from being very old and frail or unable to tolerate side effects
Hello, I am not sure if that helps I have also had 4 EC followed by 12 Paclitaxel, I am due to have my last one on the 17th of March if all goes well (written in red). I understand how you feel, this week my oncologist welcomed me with a big smile (she is not exactly the very touchy feely type), telling me it was my last chemo cycle. It totally stopped me in my stepped and I almost jumped for joy (if I had the energy), but once I clarified what she meant, she explained it was my last cycle of three sessions since my Blood test were “normal” in my situation…Weekly paclitaxel is apparently given in cycle of three and the plan is always for 12 unless you basically cant cope with it or the tumour is not responding to the treatment.
My apologies for not posting earlier, I have been on the chat since late October and it’s been such great support but the journey has been tiresome as we all know. I can’t remember whom asked about non alcoholic drinks, but I am very much enjoying a non alcoholic French cider (not cheap) called Galipette from Ocado or Waitrose.
@prisci thank you so much for replying.
I never knew that each cycle was 3 infusions.
All the research I’ve done also says that they only tend to give three cycles (9 in total) if the patient is very elderly or frail or not tolerating the side effects - none of which apply to me.
I think they made a mistake originally telling me I was only going to have 9. It’s very frustrating.
Good luck to you for the rest of your journey and hope all goes well with your last chemo on the 17th 
I was originally going to have 3x EC and 3x Docetaxel but then my oncologist felt I wouldn’t cope with Docetaxel so I was switched to 9x weekly Paclitaxel instead
@orchid2 that would make sense then to be on just 9 Paclitaxel if you were originally going to have 3 x Docetaxel. So odd, I hope that you can get it solved soon.