Fixing or living with chronic side effects

Hi again Mike.    You've started commenting before I've finished reposting my previous reply,  so to make things simpler for my easily-confused chemo brain,  I'm going to wait until I've got that previous reply 100% reposted before delving too deeply into these latest comments of yours.   They do trigger some immediate thoughts but because of chemo-slowdown,  chemo multitasking disability and a distressing forever-growing list of other essential tasks I have to do,  waiting is my easiest option just now.  

Can't resist a quick comment on a bit of your last paragraph though.  You wrote:

you have to wonder if the best people are looking into your ongoing ‘leftovers’?

Nobody's looking after my ongoing leftovers.   I've complained to GP, mental health clinic and part-time lymphoma consultant in the past,  but none of them listen.   Don't have contact with any of them at present due to long story reasons including Corona quarantine regs locking me out overseas indefinitely.   Maybe more on al this later,  but basically this is why I'm here on Macmillan,   seeking support .   

Lol, I was in the mood so went for it.

The Community can give you support indeed but your main problem is how to make head way to start to get answers and support from the ‘system’ but you are limited by location and obviously by everyone’s new friend COVID.

I will highlight our various Macmillan Support Services again open every day 8am to 8pm and it's free to call on 0808 808 00 00. Clicking here will give you more information.

You may also want to check out our Ask an Expert section, but do allow two working days for replies to your posts from our expert team.

You may want to have a look at NHS PALS (Patient Advise and Liaison Service) to see if there are routes available by talking with them.

https://www.nhs.uk/chq/Pages/1082.aspx?CategoryID=68

 Will talk agin I am sure.

Mike

Mike wrote

Will talk agin I am sure.

Certainly will!   Wow!  This thread's well into page 2 already, so it's turning out  2B quite successful.  Just hope it will encourage others to join in the dialogue too.  

I can see quite a few new points have arisen requiring my further comments.   These will come in the fullness of time as quickly as my now very slow chemobrain will allow.   All I can say is "watch this space!"

Hi 

I'm back online (and on this forum) as I'm seeing what others have experienced in the way of cognitive & mental effects of Chemotherapy. I had my last chemo in 2010, when I did Oxilaplatin and Capecitibin. I definitely suffered chemo brain at the time, with one of the classic signs being forgetting everyday words (not to mention forgetfulness etc.). On returning to work, I felt really out of my depth on several fronts, not least as I went straight back onto a course, which I really struggled with. 
I flagged up what I perceived as "cognitive issues" and was eventually seen by a clinical psychologist, who basically diagnosed that I had faulty working memory, as well as clinical depression. Though, of course, her cognitive testing couldn't be an accurate before/after. However, I'm sure that some of the things that "just felt more difficult" were new i.e. post-cancer & post chemo. The depression was something lower level and something that had cropped up before, similar with anxiety, but had never been treated properly. 

I can't remember the chronology, but I was also diagnosed as ADHD around this time (at 42!). Cut to present day, where I can't get treatment for that ADHD & it's a frustrating situation where they won't offer help for the ADHD unless I take something to rule out anxiety/depression - which I don't want to do. So I'm basically not getting treated at all. And it dawns on me that could the cognitive issues I have be down to the lengthy chemo I did? I often just can't focus and definitely struggle to organise tasks. Maybe this was the case before cancer/chemo, but I'm not sure it was quite so chronic? 

I'm sorry to read about the issues you've had. I know during my experiences, they would often say that chemo issues should wear off pretty soon, with a strong implication that they shouldn't last years and that chemo brain was a "temporary" issue. I'm assuming that in this case "temporary" means anything from weeks to months, with months possibly stretching on? 

It seems like a difficult one to work out, as it's hard enough getting help for a single mental/cognitive issue on the NHS, but possible multiple ones? Plus it's just not a holistic thing, so no-one will take an overview. 

One thing I've found that helps is an L-Tyrosine supplement, which is a building block of Dopamine. The thing that can be lacking if you're anxious, depressed, disorganised ..the list goes on ... it has also been shown to be effective with ADHD symptoms. But to be honest, though I now tick the boxes for ADHD, I'm sure that at the very least, the long chemo I did has definitely blunted my brain more than it was to start with. When I flagged up being forgetful, Docs would say "Well you're older now" - I would have been about 42/43 at this point! Plus I knew my own brain & knew that this seemed to have been quite a sharp change.