Congratulations on your last chemo, hoping it will get easier soon for you. I have a young daughter and have been ok so far but have just started chemo. Its hard trying to protect them from all this xx
1 Like
Totally agree, Iāve got a 6 year old and 20 year old so hard for the little ones as they just donāt understand all this is worth it Iāve struggled to be normal mum as was so floored Iām hoping cycle 2 on Friday will be easier as I hope I know what to expect this time
1 Like
My 2nd one is on Friday too. I was only floored the first 3 days with the first one but luckily my husband was off as it was the weekend then Easter Monday. Hope you get on ok on Friday!
Thatās really good, my husband bless him has been a star and done pretty much everything since my first chemo, his brownie points are stacking up!! Good luck for Friday hopefully round 2 is even easier for you Iām hoping round 2 will be kinder 
Hi 
Hope everyone is doing ok.
Can anyone recommend anything for a sore, peeling mouth? Feels like Iāve drank a really hot drink and burned it.
Iāve been doing salt water gargling but had seen somewhere either here or another forum that a bicarb/salt/water mix might help. Does anyone know about this and the right quantities?
Thank you 
Just to add - Iām 7 days post first dose of TC (Docetaxel and Cyclophosphamide)
Hi the pharmacy gave me Chlorhexidine but if you can get a prescription then I was told to get Caphosol and Gelclair. Mine was mild and cleared up so didnāt need it but Iām going to get some when Iām next at the hospital for chemo as Iām sure it will come back worse.
1 Like
Thank you. Do you know if itās the mucositis or oral thrush or just irritation?
Iāll give the nurses a call tomorrow and see if they can prescribe the gelclair and caphosol.
Thank you for responding, really appreciate it
Hi @maxyb Same problem with mouth( and nose) I got Benzydamine Hydrochloride mouthwash from the unit and thatās been really good. Same ingredient in Corsodyl but lower percentage but you can get that over the counter ( found it in the supermarket) so that might give you some relief to start with. Good luck.
Can I ask the ladies who have had their 2nd or 3rd chemo sessions, if their experience of side effects was the same each time or did they differ after each one?
Im not sure, I think mine are ulcers but didnāt really amount to anything so just felt sore at the back of my mouth both sides where the teeth ends. I phoned the 24 hour helpline, the nurses were really helpful so theyāll be able to tell you though they kept insisting on phoning me back and kept wanting me to go and get the correct stuff even though i did keep saying it was very mild and would just wait. Suppose thats a good thing though in case we down play it so much.
This post has made me so happy. I shouldāve been running the Milan Half in March and Coventry half this weekend but instead got the c diagnosis and chemo. Seeing the April 2024 starters running a half a year later has really given me hope. I hope you all enjoyed x
4 Likes
Hi. My side effects for session 1 were much worse than session 2 and session 3. My chemo day is Thursday so I didnāt plan much for Easter but I actually felt fine. I only had one drug though on these sessions compared to 3 on the first. Good luck
2 Likes
@chestybreasty running is tougher whilst still on chemo (Kadcyla), and Iāve lost speed though endurance coming back. I had to defer 4 major races last year, 3 ultras and a 24 hour race, but I am attempting them all this year 
when you feel ok get out there and move. Hugs xx
1 Like
Hi - I didnāt have a great experience for my first cycle unfortunately and so already feeling anxious, worried and stressed out about the next one because of the lack of communication between the different people and departments involved in my care.
Sorry to be so negative, Iāve got support at home from partner, family, friends,
Colleagues and a counsellor but am becoming incredibly frustrated with the lack of care and communication from the medical care team who donāt seem to be very āon itā with basic things not being addressed.
On a positive note, day 2 I felt okay physically after treatment, sun was shining and so I went for a wander round the shops. Iām slowing down a bit, slightly hot and cold tonight, mild headache and after a relatively good day Iāve had to get up as I canāt sleep, worrying about how to deal with how much unnecessary anxiety, worry and stress the people involved in my care at the hospital are causing me 
Iām going to try and speak to someone tomorrowā¦ I thought it would be better after the first one but the lack of internal communications made it 10 x worse for me. There was no excuse for them to cause me so much distress on the day of my first treatment. I keep being told āwe are here to look after youā but I donāt feel very well cared for at all.
Hope everyone else is okay - sorry for the negative post. I know I need this treatment and that itās going to be tough and challenging, Iām fully prepared for all of thatā¦ I just wasnāt prepared to have quite this hard a time with the professionals to ensure my basic care needs are met, and that Iām being supported, helped and cared for throughout, as opposed to them causing more stress and anxiety.
Any ladies reading with any advice or similar experiences on how to navigate poor experiences? Who do I speak to to try and get things on track before itās too late and I lose all confidence in the care Team?
3 Likes
@kayb26 was wondering how youād got on and really sorry your first chemo has done nothing to reassure you. Maybe make some notes on the main themes and some examples ( Donāt do that late at night itāll definitely not help you sleep!) If thereās no one in the oncology set up you think will be receptive then contact PALS for your hospital and ask if you can talk through your concerns with them. There may be others having similar experiences to you. Make a note of what could have been done differently to put forward.
Really positive that you were up to getting out for a meander round the shops, do whatever you can when you can so life isnāt only about chemo.
Very best with your next step and keep posting because at least youāre getting a sense of how it should be and weāre here for you.
3 Likes
Thank you.
Iām really pleased that everyone else seems to have brilliant experiences with responsive care teams, and youāre right itās giving me an understanding that mine are struggling to communicate and co-ordinate properly.
Iāll speak to the onc nurses today hopefully and explain that I need them to have a chat amongst themselves about what theyāve agreed and why and then communicate that to other people involved to ensure that I donāt have to go through what happened Monday every time I go in for treatment because they are making things so much worse for me
I was literally preparing to leave on Monday they got me so agitated. That cannot be right can it?
1 Like
@kayb26 absolutely not and your energies should be directed towards making your life as good as possible not sorting them. I really feel for you because I had such a bad start for what sound like similar reasons and I felt responsible for my own safety. Even now I ask lots of questions and make notes, but it has got a lot better for me. Can anyone go into the unit with you? That might help if you know thereās someone in your corner.
2 Likes
Thank you - sorry you had such a bad start too but at least that reassures me that Iām not the only one.
They already agreed I could have someone with me for my mental health. They left it to my pre treatment call to tell me I wasnāt allowed anyone in with me. I was beside myself and it took me 2 days to put myself back together last week from the shock of that and no PICC line.
Monday - 3 hour delay to start, told didnāt know when I would be starting, 15 mins before infusion a nurse, not the one doing my treatment came over insisting my partner had to leaveā¦ we explained it had been agreed already for them to stay but we were ignored and the nurse kept saying he had to leave. I got really agitated, upset and distressed, started crying and shaking. It was awful, ā¦ embarrassing and humiliating for me and everyone else and so unnecessary in the middle of the ward at the same time my nurse was prepping my infusion.
Now feel completely anxious, nervous and worried thatās whatās going to happen every time really unnecessary, probably meant nothing to them but the impact on me was huge.
Iāve been strong and independent all my life but the last 6 months has understandably stripped me bare and left me vulnerable, frightened and scared. I know I will recover and adapt in time but right now, I just need to be supported with what makes me feel secure, safe and cared for, and I donāt think thatās too much too ask right now? I feel bad enough already about being a burden and feeling so needy all the time, I donāt need them to reinforce that for me
Again so sorry everyone for such a negative post. I know I will get through this, I am strongā¦ sometimesā¦. I just want to put my energy into fighting cancer not my caregivers.
1 Like
Do you have a Maggieās centre near you? Or something similar? Maybe worth to speak to them, they offer a lot of support and will be likely others from the same hospital will be using them x
2 Likes
Hey this is good to hear that it gets better, I had my first ec Thursday, thought I was doing ok. Then day 5 happened! I had heard from earlier posts about the day 5 crash.? Thinking I wonder what that is? Then I got itā¦.Extreme tiredness and low blood pressure 
Has this affected other people too? Xx
3 Likes