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.

Hi I’m so sorry you’re going through this.I had breast cancer 9 years ago and recovered after chemo radiotherapy and tamoxifen.I get the same as you with the dread in the pit of my stomach even when I have to walk last the ward where I get treatment.Sasly I’ve been treated for last 3 years for malignant melanoma stage 3D.I’m clear at the moment but had to stop treatment as side effects were severe. I found breast cancer now great xx post as much as you like on there and also here too.Honestly maybe rethink the cold cap, it’s an extra thing to worry about and maybe it’s not making u feel to good.a friend used to get terrible migraines from it.personally I knew I’d lose the hair so I shaved it off and just wore beanies etc and believe it or not you do adjust to it.

is there a separate radiotherapy department at your hospital? I say this as there was a great noticeboard in ours that had loads of charity info and help on it to do with breast cancer-counselling-holidays-coffee groups etc -which wasn’t advertised in the oncology dept.I must be v fortunate as all the cns’s I’ve come across have been incredibly supportive.

im hoping you might also get help from breast cancer now as they had counselling over the phone available

really hope you get more support xx

@RiverFlowers

That explains it. Thankyou.

Sorry you’re going through this. I had constant intrusive thoughts and flashbacks during treatment. I was at the point of refusing treatment, as walking into the building gave me a panic attack and even seeing the trust logo made me feel sick. (I am normally very mentally healthy). I was referred to Macmillan for counselling and it turned out I had PTSD. I had eye movement desensitisation and reprocessing therapy and it really helped. Hopefully you will get a good assessment and they will be able to help you through this difficult time with the right therapy.

@tam23

That's exactly how I feel.

Did you do the counselling along side the treatment? Or was the counselling after treatment?

@tam23

I don't think my counselling is with McMillan. I think it's via the hospital. I've only had a phone call to arrange the appointment and Mullen wasn't mentioned. I will check who it is with.

I did the counselling alongside the treatment. It was with Macmillan but through the NHS. They work together here. The therapist was NHS but I think Macmillan must partially fund it. I was referred by my nurse. I had no idea my symptoms were PTSD until it was diagnosed and the treatment was really successful. Apparently it’s quite common in people undergoing cancer treatment. I really hope it’s helpful for you too.

Pax is less extreme than some of the others - my oncologist said with 3 weekly one of the others I would be bad one week, meh one week and OK one week and Pax would be meh throughout. Does vary by person but no issues with sickness, bloods were pretty much fine though kidney results went a bit but came back, only thing physically I had issues with was neuropathy but tell them straightaway. Also ice or the chemo gloves and socks can reduce it, take a coolbox to chemo like one from a camping store, and get the chemo gloves and socks off Amazon and change every 30 mins or so or take frozen peas or ice and keep by feet and hands. I also ate ice lollies during chemo and kept sense of taste, no mouth ulcers and teeth survived well. Also useful to get a dental check and get the high fluoride toothpaste - have to go private here but mention chemo and they are lovely. Oncologist I saw maybe once every 3 weeks, nothing via GP here. Bloods were done at chemo or same day just outside unit every 3 weeks. It was mainly agency nurses but mine were fine but I also had issues at first with nobody allowed but a surgeon when I got very distressed put some kind of code on I think saying they had to allow someone in with me. My DH used to wait in the open area not in chemo unit but it still helped. I think prior to covid people were allowed someone else in chemo unit.

@emeraldsapphire

I didn't see your message but one of my children did.

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