Mentally coping with Chemo

[tothelefttotheleft]

I have triple negative breast cancer. I've had 3 months of 3 weekly EC. I'm supposed to have 3 months of weekly Paclitaxel and Carboplatin.

I'm not sure I can do it.

I haven't been treated well at my chemo. For example they haven't even done basic obs before infusion eg pulse, bp and temp. I'm treated like a picc line.

I have had some kind of mental health reaction to this. I cry at chemo and after for the next 7-10 days I can't stop getting flashbacks to it and reliving it. The sensory stuff is very triggering. The smell of the drugs when it's given and while I excrete it. The cold cap whooshing. The drips beeping etc etc.

I asked for help at a pre chemo when I was very distressed and was told there was nothing but could contact my McMillan nurse. At the next pre chemo I mentioned it again and was told there is lots of support?!. I'm now waiting for counselling which is due to start in 3 weeks.

Anyone have any advice as like I said I don't think I can carry on with it.

Hello
Stage 4 Breast Cancer here so I have been in this position. Including things like basic obsessive not being done. It is shocking how much you have to become your own advocate to get better treat,ent and to prevent medical mistakes.

In terms of the chemo, I have also spent the whole session in tears.

Sorry, pressed send too early. I didn't find Macmillan very good. But have you got a Maggie's near you? They're very good. Also check out PennyBrohn in Bristol who are a cancer holistic centre.
Also, I would recommend taking a friend to chemo with you for a while, with the instruction to talk about anything that's not cancer or chemo related.

Also, not sure if your age. Breast Cancer Now have some good forums, and there is a Facebook group called young women with breast cancer if you're under 40 at diagnosis.

Ps. I also found the smell of the drugs and especially the alcohol wipes very triggering. I always took an orange or satsuma with me to chemo and literallly held it under ,y nose whenever the alcohol wipes came out. It was a top from a senior chemo nurse ....masks the smell of everything.

To some extent I do think it's normal to have this mental reaction. It's one hell of a shock. My paclitaxel was years ago but I still can't eat pineapple because I used it during chemo (it's good for chemo side effects). So it's triggering.

Sorry, not much help other than to reassure it is normal

Sending big hugs, its very hard mentally. I did 3 months of weekly Pax and found it very difficult mentally.

Counselling Macmillan have a BUPA counselling thing and that's pretty quick to get on but is only 6 sessions after the assessment one, the assessment is to see if its mainly cancer causing issues and it is. Maggies are worth calling as well and may have things. There's another charity called SomethingToLookForwardTo who provide days out, meals out and short holidays if you look on their website. I had 2 chemo buddies who I found online and that really helped me, one from here and one from another site who stayed in touch right through. And others who stayed in touch for parts of it.

You may be able to take a break if that would help a bit - I had 4 months to do my Pax rather than 3 and had some trips during the other weeks like to Wales to see the puffins which helped.

I found the steroids a nightmare and once they were cut that helped.

It maybe worth discussing with oncologist to see if there's anything they can do, sometimes they can shorten it and the last chemos are pretty marginal in effects vs side effects.

Look up and see where your local Maggie centre is. They offer lots of support, especially around relaxing and mindfulness. Learning a bit about this might help you deal with the sensory side of things. The Maggie's centres are so warm and welcoming. The one where I work is set back from the main hospital and feels like a spa/ hotel.

No Maggies near me unortunatley. Im in the south east.

Thankyou for replying.

I've been craving pineapple. I thought I wasn't allowed it cos of what chemo does to your mouth.

When my picc line is flushed I can taste the saline. Apparently some people can.

Thankyou for replying.

How did you feel when you did the Pax?

Am I likely to feel ill the entire time? On 3 weekly EC I had one week where I was ok.

Thankyou for replying to me.

My oncologist is strange. He made a big thing about how expensive my treatment is.

He was so weird I would have asked for a different one but I saw him once before starting treatment. Once after first EC cycle. Will see him after first Pax and Carbo. I presume once at the end? I read you have to do it through your GP too.

So far I've had no problems with the steroids or injections for bone marrow etc. it's not the physical side effects I do get either.

It's the chemo and how I'm treated there and the subsequent mental health issues.

Thankyou for your reply.

I'm in the south east so no Maggies unfortunately.

I have had chemo and totally understand this (even though I was treated very well.)

Please keep contacting Macmillan to ask for support.

Can your GP or oncologist help you access the counselling or mental health support more speedily? Or can you put on hold your chemo treatment until the mental health support has started?

And is there a friend or anyone who could accompany you to chemo? (Particularly the first part.) Personally I think this could help reassure and relax you more than anything else.

I already take my 23 year old with me. They tried to say that I wasn't allowed someone with me.

Apparently 13 members of staff have left the ward in the last two years. Even the ward leader didn't do my obs when she started my treatment last time. She also didn't know how to do the cold cap.

Thankyou for replying to me.

You're very welcome. Definitely keep going with your DC.

Maybe write down your worries then go through the list and see what, if anything, you can do about each one. Sometimes it helps a bit just to accept / feel prepared, e.g. I know the cold cap is going to make a noise which I dislike but it will last only x minutes/hours and afterwards I will put in earphones in and listen to my favourite music.

I did three months of weekly pax. They say Paclitaxel is less horrible than others.
I found it got harder as time went on. I would be fine on day 1 and 2, then downhill days 3, 4 and 5 then a bit better on days 6 and 7.
Are you trying to work ? Could you be kinder to yourself in any other ways at home? How are things financially - could you pay for help?

Maybe you could re-think the cold cap?
I felt very pressured into trying it as though I was somehow failing to do chemo properly if I didn't care about my hair.
I refused to do any cold cap on the grounds that it just prolongs the time spent and general discomfort.

Chemo nurse here….im sorry you’re having such a rough time-coukd you explain what you mean about the way you are treated so that I can see if I can advise anything.

Some people can taste pre-filled saline syringes. If that happens we draw up the saline and that doesn’t seem to taste.

Obs we don’t do prior to each chemo so I wonder if that unit doesn’t either?

EC side effects can be brutal. It’s not called the Red Devil for nothing. What side effects are you having?

How is the cold cap working? It sounds like you may be finding it distressing? Obviously the alternative is losing your hair so it’s weighing up which is less distressing for you.

Unfortunately, like all nursing units, chemo nurses are few and far between. It’s a busy job and because of the hours there’s no unsociable pay and living on a basic band 5 salary is becoming harder and harder. We are really struggling to recruit. It’s not an excuse for poor care but explains that the nurses may be overworked.

I also have TNBC, I have one more chemo left next week.

I did the weekly carbo and pax for four cycles, now doing the EC for four cycle four next week.

I found the carbo and pax on the first of each cycle absolutely horrible. It made be physically sick for three or four days, but the other two treatments of that cycle were fine for me weirdly, I could almost carry on as normal.

EC hasn't been as bad for me, in terms of sickness anyway - I haven't felt sick on it - but the tiredness has been pretty bad - I basically sleep on and off for the first week then start to feel ok. Annoying part of EC for me is it's made me lose most of my eyebrows and lashes, I kept them all the way up until EC.

I am only 36, so maybe age is a factor in how I have coped with chemo? Who knows! It hasn't been easy, but it's been doable. I agree with you re taste, I can taste the saline and there is one steroid or maybe antihistamine that they give via syringe driver that makes your bum feel itchy weirdly - hate that one. Also hate the white blood cell injections that you have to do at home, I hate needles so I really struggle with them.

With my chemo, I ended up transferring to a smaller hospital that does chemo - it's SO MUCH nicer than the big hospital, treated better, the nurses aren't rushing around, infusions get changed when the machine beeps (not like the big hospital whereby you can sit there waiting for half hour as they are so busy)

However the big hospital and smaller hospital are literally equal distance away for me so it made sense in terms of travel as well.

Can you change where you have chemo? Some places have those chemo vans that visit different locations for people that can't get to the hospital easily?

You can do this though, just keep moving forward and the end of treatment will get closer and closer

@RiverFlowers

I'm stage 1 grade 3 tnbc. I'm doing 16 cycles of chemo. You are doing 8? I'm curious why are regimens are so different.

Depends, are you considering each weekly carbo/pax as a cycle? I was told that with that, every three treatments was one cycle?

So I did four cycles of that but it was weekly for 12 weeks - then four cycles of EC which is one every three weeks.