August 2026 chemo starters

[poppy261]

Hi @surreydeb re cumulative effects.

It often depends on the type of chemo you are having, how many cycles you are having, and how tolerant your body is of the drugs. So it can be hard to guage generally really.

A number of us in May Starters coped reasonably well for 4cycles EC 2xweekly, though fatigue did increase for a number of us. Other side effects seem to remain fairly constant throughout having e.g. EC. So we knew what to expect and what to prepare for.

But if we had more cycles than 4 after that, e.g weekly Paclitaxel weekly for 12 weeks, or like me paclitaxel every two weeks for 4 cycles, then side effects did/have increased for a number of us. Especially fatigue, neuropathy, low bloods, (especially with Pac), feeling weak and wobbly. I found the last 4weeks challenging, but resting/sleeping through it helped a lot. With certain side effects e.g. severe fatigue, neuropathy, Teams will often reduce the doses. They did this for me. So you must speak to your Teams each time you see them if side effects increase in severity, or new ones appear. Or ring 24/7.

Nausea depends on chemo used. But seemed to stay constant. I never got any nausea with Paclitaxel. But i had no appetite and my taste buds altered. Making some food taste yeuk.

Mouth sores seemed to stay constant with e.g EC. So we had to use preventative/daily mouthwashes. Paclitaxel has been more unpredictable. I had no mouth issues for 3cycles, then the last cycle created a sore mouth, which is still up and down 3weeks after the last dose.

So you have to be aware, side effects, especially fatigue, can be cumulative. But rejoyce if you are a lucky one that doesnt get unduly bothered by chemo. Or doesnt get the cumulative impact.

I learnt to go a day at a time. As often each day was different. That helped me more than worrying about it getting worse.

When it did get worse, I rang 24/7 straight away for advice. Sadly some Trusts have not had the most empathic Nurses on call, but my Trust were really on the ball. So my advice is, even if you have some unhelpful Nurses, you must still ring them, then your concerns will be logged and if they make a mistake, they cant say… She never rang us.

Make sure you rest as much as you can through chemo. Its a tough treatment, but you will get through it.

Hope this helps a little.

[titch1]

Hi 230 if the morning I can’t sleep again, seem to get to this time every night then wide awake.

Had a little break down last night just exhausted with it all did ask my husband for a hug instead of sitting up stairs alone with my thoughts so progress for me.

Feeling a lot of mummy guilt not being the mum I was to my little (5) boy, plus the fact we have realised his birthday falls a day after chemo which means the weekend he wants to do something I will feel awful. He hasn’t hugged my proper since telling him and my picc line he is frightened of hurting me. Be interested in others with little ones or been through it with little ones how they are now?

Anyway enough of me moaning ……

Hairdresser booked today, it’s the one attached to the hospital so will welcome his advice over my hair what to do ext and sort out my wig. I am likely to have it cut shorter still do t feel ready to shave it yet.

Met an old friend of my dad’s yesterday he has just been told he has terminal cancer not long left, he spoke with me. What was striking how at peace he was, and gave me some words of encouragement.

Cancer is tough but if there is one positive to this shite is how it does bring people together of all ages to help build resilience between us all. Xxx

[wibbles]

@titch1 l too could not sleep and when l did had the most horrendous nightmares. The whole BreastCancer cancer and severe adverse reactions kicked off years of deep hospital based trauma. TBH it took truama counselling and then trauma therapy on top whilst doing bloody chemo plus a very compassionate and understanding oncologist who recognised my extreme response to every clinic was way more than just anxiety to find a way to get some control back.

I will be honest, the initial counselling often makes you feel even worse but if it’s a person you have rapport with, trust and feel able to work with stick at it. Took me a few months but I can now occasionally talk and ask questions at hospitals, tbh staff were pleased when I started to hand them written questions when I still could not speak, get sleep with out constant nightmares, eat some food and on better days do normal things Ì never thought I would ever do again.

I found the college of anaesthetists pre surgery relaxation resources of help once I had some basics to use from truama therapy. they have a short and longer version. Start with the short and stop if it’s too much to cope with. I used the national forests virtual forest resources till I started trauma specific counselling. Found that helpful as chemo side effects made me feel very ill.
Ì still use good sleep hygiene practice and avoid anything that reminds me of being on the receiving end of a sister with antisocial personality and substance abuse and previous hospital crap before bed. Everyone is different and it’s okay to have bad days and just do what you can to get through. Aim to achieve just one thing a day so anything extra is a bonus. I got very good at celebrating wins on the day of small things.

Keep placing one foot in front of the other as each step takes you a little closer to relearning how to live again.

[titch1]

@wibbles thank you been to the unit today didn’t realise but had a injection due.

Also saw the hairdresser hair cut now to a 2 ready for the shave they confirmed the cold cap has failed and advised against continuing with it due to the risk of cold burn.

I am at peace with it to be honest.

next step is the counciling need it to start asap, I have had previous due to PTSD work related which I think this has triggered the cancer and my first chemo reaction.

really appreciate your reply xxx

[wibbles]

Be kind and gentle with yourself, severe adverse reactions really do leave you convinced your going to die, notin the least surprised its kicked off previous trauma and bought it all up again. It did the same to me but I had not got a clue what was happening or why I was walking into the hospital and finding myself walking back through covid when I sent my birth family into hospital only for them to never come back out. They all died then Ì found myself in HDU trying to keep out of ICU. It left me collapsing and screaming from the raw grief Ì could not process at the time everyone died one after another. If I tried to enter the chemo unit even with nurse support I started screaming as I was sure I was outside in the hospital car park whilst close family died and I could not be with them. (Height of covid) NOT my best moment.

Thank all that is good for an oncologist who recognised it was a very severe trauma response, I had no idea that was what was going on, that had been amped up by three severe adverse reactions in a row.

Truly hope you also have a good team behind you who can support, encourage and help you through. Here if you need someone who has been in a similar place.

KEEP GOING!

(maybe consider telling your young son a special story about a mum with a medical wiggly in their arm and that it was okay to hug their good side to give them some of their super love to help them as the good side does not have a special wiggly that provides the special medicine to evict naughty cancer)

[titch1]

@wibbles love the naughty wiggle idea x

[titch1]

Hi everyone, how’s your week been?

[Absolutely_Not]

Hey @titch1, week has been ok thank you, how’s yours been?

Had my first paclitaxel yesterday and feeling ok. Took way longer than the EC. I was there for 5 hours (plus 1.5 hour wait after that as my take home meds went MIA but that’s another story!). Going to try loratadine for my injection to see if it helps with the rotten feeling. Best thing to happen though was they removed my PICC after yesterdays chemo and will cannulate me for the rest

[surreydeb]

Thank you @poppy261 thats very helpful

The helpline have been really good when I’ve had an issue and got straight onto my GP to get prescriptions and even a call from the GP! It’s so reassuring knowing that the system works!

[surreydeb]

Hi @bella80 sorry for the late response been feeling a bit down but in my good week now and much better!

My hair is really thin on top now so my lovely hairdresser neighbour has cut it a little shorter for me and as it’s curly when a bit shorter it looks a bit thicker so that’s cheered me up. Next treatment is next Wednesday so I’ll have to ask them to use some gauze or something over the balding spots to protect my scalp during cold capping. Still going to persevere though as the daily loss seems lighter and I’d like to keep as much as possible as my hair doesn’t grow very quickly.

I did a trial zoom course yesterday with Look Good Feel Better focussing on brows. It was really good and went over how to use all the different products out there. I feel more confident about having a go now! I don’t seem to have lost any more brow hair yet so for now I can just fill in the gappy bits.

Hope you are feeling ok after your last treatment?

I’m off to get my flu jab this morning!

Have a good weekend x

[poppy261]

Glad to hear your helpline is a good one @surreydeb . Its been hard for some ladies who’ve not had good experiences. Thankfully mine was like yours.

Chemo isnt easy, but it is more tolerable if you are careful and kind to yourself. And be aware the fatigue is chemo induced, not because you are unfit. So rest as much as you can. Your body needs to cope/recover from very harsh drugs.

[titch1]

@Absolutely_Not up and down as my son has withdrawn from me. School are helping to talk to him and deal with his worry’s and emotions. He said to me this morning he can’t wait for my hair to come as it makes him sad at the moment. Xx

[Absolutely_Not]

Awww @titch1, it’s so difficult. He’s so young. It’s so good that he has some support in school as well.

My youngest is a wee but older than your wee boy, she’s 8 but such a gentle wee soul, quite young for her age and a proper worry wart so we’ve kept it as light as we can. The cancers just a sore bit we needed to get rid of. The chemo is medicine to make sure the sore bit doesn’t come back. Radiotherapy is a laser to zap any bits the medicine miss. We’ve made a joke about the hair loss, she calls it my dad hair.

We could have explained it all properly to her but she wouldn’t have coped with that. I don’t know if that was the right thing to do but it was the right thing for her and that’s all we can do

[poppy261]

Dont worry too much @titch1 about him withdrawing from you. Children can do that even when parents dont have cancer. There can be lots of reasons they temporarily withdraw, even because they had a fall out with a friend at school, or they found football too hard. Or they are just too tired that day. Or another child has passed a horrid comment, sadly children do this alot, so school need to be vigilant about peer relationships.

Little children have limited language/life skills, so find it hard to say how they feel. Its also hard as they are still not fully self aware, so dont understand why they may be feeling the way they do. Or they may not understand a feeling, nor have a word to describe it. Or not understand about what is happening. Their life experiences are tiny at that age.

So the main issue is, always keeping the door open so he can talk to you. And from what you said in your Post, he is still talking to you and and sharing his feelings, which is the most important. Keep those cuddles and special times happening.

Children often respond better through stories and arts and craft. They find it easier talking through a metaphor using an appropriate story book. “The Huge Bag of Worries, by Virginia Ironside” is a beautiful book. If its not in print now you may be able to get a used on via the internet shops. Seems Blackwells sell it for £7.99.

Or splashing paint everywhere, or pounding on a lump of playdough. So always have art materials in so he can use them as he needs to.

I would ask school to write up what they have discussed with him each day (have a diary of what they have talked about, and what they have done). Especially if they have said anything around your cancer diagnosis. Its important you know what support “looks like” etc. as sometimes they also may say things that may make your son ponder abit more/trigger thoughts.

I would check if they are providing a properly trained child counsellor, separate to the school staff, or if they are just supporting him via school staff/TAs.

If its just through school staff, make sure they are not talking too deep about your situation to him. Or suggesting ideas to your son that may not be appropriate e.g. “you mustn’t bother mummy when she is tired”. Sadly that does happen, even with the best of intentions. Its fine for them to be supportive and give him some more TLC, but “helpful” staff can talk about things they are not trained in. So feel confident to set your boundaries with them.

It is great they are helping, but make sure its the right sort of help.

But have confidence in what you are doing. You are an amazing parent. If he doesnt want to talk one day, just sit by the side of him, and be a silent partner in his play. Children love us “just being there” even if they dont want us saying/doing much.

[bryna]

@titch1 I whole-hearted agree with everything @poppy261 says, she has worded it perfectly!

5 is still so very young, and their worries are not always what we expect, my youngest would withdraw from me if he fell over and was embarrassed, just at the time he needed comfort he wouldn’t accept it. Xxx

[titch1]

@bryna @poppy261 thank you both for your replies.

School have a trained teacher who is linking in with us before and after they chat with him. Thankfully it a teacher he gets on with we have discussed what we have told him.

She is focusing more of his emotions and processing.

He spent the yesterday cuddling me on the sofa watching a film a soaked up every second.

[poppy261]

That is great news @titch1 cuddle time is so important . He clearly adores you. Never lose sight of that.

Plus, great to hear school have a trained teacher, and are keeping you well informed. That must give you a lot of confidence and reassurance.

Hope you have wonderful Sunday.

[bella80]

Hi hope you are ok? My mood has been all over the place the last week or so.
I went to a hairdressers last Friday to get a wig but the only one i liked just didnt fit right as she said i have too much hair. I don’t know what to do. I mean people wear wigs when they still have a full head of hair! My hair has thinned out massively and because my roots are grey and i have very dark brown hair it does look like i have bald patches. I’m going to look online for those caps you wear under hair and maybe go back to see her. There aren’t any other hairdressers near me where I can use my voucher unfortunately. I need something as my confidence has gone and I dont like going out with my hair like this.

Good luck with your next treatment, cold cap is more difficult with thinner hair but it’s manageable x

Good luck

[titch1]

@bella80 Hi Bella I found the wig process hard I went before my treatment to a independent lady, and didn’t like the process at all I pick one I sort of liked and said I would call her when I was ready.

Last week due to be transferred back to my originally hospital after my reaction and they were happy I wasn’t go to react again I found out they had a on site hairdressing support service. I found the experience a lot easier. The gentleman and his colleague look at my hair which was very thick before chemo and both agreed the cold cap hadn’t worked it was just falling out on touch. I ended up having a buzz cut and like you my head in now pretty much grey black and patches of no hair. I have been going out with hats on my little boy picked one at the weekend from Amazon which came last night only £5 and I love it, it black with colours in it and soft on my head.

I have ordered a wig it’s coming next week just in time for my next chemo.

i asked was it worth carrying out the cold cap for re growth and they don’t recommend it firstly due to possible cold damage to the scalp and also in their experience of over 10 yrs of seeing different ladies and men who have used the cold cap, not used it ect everyone’s hair has grown back at the normal rate. I have decided to reclaim the 1 1/2hr of my life cancer has taken from me every 3 weeks and treat myself to some tv time instead.

You do you and remember your doing amazing xxxx

[bella80]

Hi @titch1

Hope you are ok?

The lady I saw made me feel rushed. I told her I wanted one like my natural hair but she found one that was a little lighter, longer and I just loved it. I couldn’t believe it when she said I should just monitor how my hair loss goes though as there’s too much there now for the wig to fit properly! She’s a hairdresser and she could see how upset I was at the state of my hair currently. I think i may get it cut shorter like you did and then revisit her after my next treatment.
I’m so sorry the cold cap didnt work for you. It seems to be helping me so far despite the loss so i’m going to persevere.
I might have a look at hats on Amazon though, it’s lovely that your little boy helped choose one for you. Now the weather is changing i have been wearing hoodies and jackets with hoods.

How is your treatment going? I’ve not been on as much as been having a lot of bad days and then seeing all the October breast cancer awareness month stuff everywhere I’ve been finding it all a bit much so trying to keep busy doing other things.

You are doing amazing too, i think we all have bad days but going through all of this we are stronger than we think xxx