chemo radiotherapy, then capox chemo. Anyone else got chemo brain? I have neuropathy too. Bowel cancer

Arsey 20 days ago

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Hi, I had the above treatment. My last chemo cycle was in Feb 24, I was scanned in March and seen by Oncology, who signed me off with them and passed me over to colorectal for monitoring. At this time I had slight numbness in my feet and swelling. As the months went on the neuropathy kicked in, I believed it is called 'coasting' when the effects happen after treatment. By July I was only able to walk with a stick, couldn't even negotiate a kerb, but being a stoic person, I've battled on, concentrating on walking and all recommended activities.
I also developed chemo brain, so I struggle with memory, recalling words, taking in information. I have to write everything down and this really affects my ability to return to work, so I am still signed off as sick.

My HR dept are supporting me with an ill health application to try and get my pension a bit early. They are particularly keen to have something in writing about how my treatment has affected me cognatively - and if this is permanent. Oncology can't help because it has been over a year since they saw me and I didn't have the symptoms at the time, my colorectal consultant can't help as she can only talk about what I have and responses to treatement etc, and she hasn't seen me in person for about 2 years. (I'm on watch and wait - supposed to be scanned every 3 months, but I'm lucky if I get a 6 month scan).

To keep HR happy I had an appointment with my GP to discuss my cognitive thing, and to mention the neuropathy, the general weakness I still have in my legs, lack of core strength etc. The stuff you only find out about after treatment.

My GP had never heard of chemo brain, or its technical term. She couldn't possibly diagnose me (not what I was asking for, I wanted a record on file to say I was struggling cognitively) she wasn't bothered about any of the other side effects, and basically - she wasn't listening to me at all.

We all know how anxious the treatment and diagnosis is and that doesn't go away - to have to sit there and not be listened to, after a 45 minute wait, when it took me a lot of courage to go - really upset me and I'm now questioning myself - so

Has anyone else who has had chemo for bowel cancer, suffered or is still suffering from chemo induced cognative impairment? I know the breast cancer chemo drugs cause it, and it seems that capox does too, but there is little about it to confirm it.

I even wrote everything down that I was experiencing (as I can't remember stuff) and she wouldn't even look at it or discuss it. She said that my sick note should be all they need, my cancer should be enough to get me ill health retirement (she wasn't listening about my need to provide info for the pension service) She did give me a repeat prescription for eye drops though to help with the chemo dry eye and cataract I'm developing She then opened the door and stood there waiting for me to leave the room. She couldn't have wiped the floor with me any more.

Anyone got any ideas how I can get this information for my HR dept - or am I just wasting my time. Is there any way I can provide this GP with info on what happens when you have chemo?

Thanks all.

Nevermind 19 days ago

Hiya Arsey

I had 3 months of Capox from Feb to May this year ,I had neuropathy in my hands at the time but that's subsided now. I cannot say that I felt I ever had 'chemo brain' to be honest -sorry this isn't much help

Doris26 19 days ago

Hi Arsey, do the company you work for have access to occupational health? If they have ansmd you haven't had a referral, I would ask for one from your HR. They may have a better understanding of how your cancer and treatment can affect your work capacity. Just a thought.

Arsey 19 days ago in reply to Doris26

Thank you for getting back to me. I'm thinking I'm going crazy. I had an occupational health phone assessement 6 months ago, that said I was clearly struggling with finding words. I'm just gutted that you have to struggle through treatment and then have to evidence stuff all over again.
My employer, clearly have no track record in any of this. It shouldn't be the case!

Doris26 19 days ago in reply to Arsey

OH should have written a report following that conversation. Ask for a copy of it. I'm surprised HR haven't made another referral considering its Bern 6mths since your last one.

Arsey 19 days ago in reply to Doris26

I have got a copy of the report, that clearly states I'm strugging with finding words. Think the prob is that my HR dept are not used to dealing with this. I'm probably the first case. Interesting that they need to do it again. Thank you so much for flagging this, I'm really being fobbed off. I'm unfit for my job - I can see it clear as day. Getting proof is soooo hard.

Everything is against me getting what I've paid into all of my life.

Arsey 19 days ago in reply to Doris26

Thank you Doris26 My HR dept have little experience of this stuff. My GP think my sick notes hold the key and are enough for ill health retirement, but I know it is not the case. I'm just caught in the middle. I'm on a tiny income, barely surviving, with lots of other treatment side effects. No idea what to do for the best, but really appreciate your comments. Stage 3 bowel cancer is evidently not enough.... unless you are the person living with it.
Thank you Doris26.

Arsey 19 days ago in reply to Nevermind

It is always a help. Thank you Nevermind I'm so pleased you have only experienced this in your hands. I couldn't even walk from my Oxy infusions into the car and again, couldn't walk from the car into my house. This issue progressed after discharge from oncology. No one cared when I reported it. No one cares still, which is worrying.

Kareno62 19 days ago

Hi Arsey I feel like my memory and recollection of things like who appeared in a film or general knowledge for example has got worse - my husband has got quite good as guessing what I’m on about. I blame chemo brain or the menopause or just getting older! I’ve attached a link below to the macmillan page on chemo brain and there was also a cancer research one which you could print off?

https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/chemo-brain

Is it a company pension that you’re wanting to draw early? I was able to take mine at 55 regardless of any medical condition but I suppose it depends on individual company policies. It might be worth ringing the support desk to as I think they have an employment and financial advisor?

Take care

Karen x

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

Arsey 19 days ago in reply to Kareno62

Thank you Karen.
I did mention the Macmillan stuff to the GP I saw, but she still insisted it didn't exist and she couldn't diagnose it (not what I was asking her to do) and she wasn't going to look into it, or look at my own notes on how I'm affected. It sounds like the next GP I am booked in to see is someone who will listen, but I've got to wait another 6 weeks for the appt. The macmillan bit even says to see your doctor.

I think the combo of menopause and chemo is a potent one!
.
It is a company penson and I can take a reduced amount early, but if I can get ill health retirement, I stand a chance of getting the full amount. I've not been working for almost a year, so I've not made any payments in for a year. Being single, I am trying to get enough money to live on as I've never been a high earner, so won't have a high pension, but it would be enough to live on and a bit more than I'm on now.
The employment and finance advice from Macmillan has been good. I've also had some advice from ACAS too and I'm just stuck between a rock and a hard place at the moment, but luckily I do have an old local authority pension, which I will be able to access in a few months time.

My employer can sack me at anytime and don't have to support me with the ill health pension application, but because I've worked for them for 25 years, they are trying to help me out. I really wish they would make me redundant, but they won't.

At least I have been able to enjoy the wonderful summer and potter about in my garden, all very good for the soul!

Susan13 10 days ago in reply to Arsey

I'm a bit late to respond... sorry, I just haven't been around as much.

First off: I had significant coasting. I had to go to using a walker and stopped driving for a time. It did improve a little on its own. I was given Gabapentin initially which helped a bit. Recently I was given duloxetine which helped quite a bit. I still have numbness and swelling in my feet and a bit in my hands but I have been able to stop using the walker and no longer need the cane at home (though I still use it to go out.)

Chemo brain... that seemed to take a lot longer to clear and, in truth, I am not sure it cleared completely. I'd also be concerned about the chemo triggering a neurological condition. I think you should be seen by a neurologist for both. I'd think a neurologist could help with the paperwork for your pension. But I am in the US so I am not sure how things work there.