General Discussion

I think the lack of clear communication to patients with adhd and autism absolutely compounds that feeling of needing to own it and do your own research. I am in similar postion but have had two surgeries and 'cured'. I don't have fibro and I am adhd but my sensory and cognition issues have been so stressful that its intensely confrontational. However HRT does fuel estrogen positive cancer and I am appalled I was on it for so long. We are in opposite camps! Fibro and ME are totally linked to ND and under researched. 

I have so much more energy when cancer taken out I believe my chronic fatigue was cancer related. Also late diagnosed adhd and 55 post menopause. 

I admire your research capabilities, can you widen it and do a deep dive into the recommendations? Maybe see if you can get a second opinion? It sounds like if you are being offered radio then this is absolutely curable. 

I am currently having chemo as my oncotype is high and having issues with getting my head around it. What was IDC stage 1 grade 3 feels so much more serious because of the chemo. 

It sounds like you are going through so much added discomfort, I really hope there is a positive outcome for you and communication with health professionals. 

I hope it is ok to offer this as a suggestion. I just felt pallative when you could be cured seems a lot. Macmillian nurses are very very good to talk to. Best of luck with it for positive outcome. You can do it. 

I am currently struggling with my ADHD and chemotherapy. 

I have had a decent surgery process after IDC and DCIS removed. 1.9mm lump grade 3, stage 1. I had to have second surgery but nothing found. ADHD gave me a drive and purpose to enjoy life, deep dive into nutrition and exercise and focus on the positive. I am a creative writer and performer so there was a lot of comedy and stories to write down plus crafting and art. Long walks in the country and time in nature has been amazing. 

However communication around chemo has been really difficult and I would like to hear how to navigate this. I have had severe anxiety and 'white out' panic attacks in the day unit. My relaxation needs aren't the same as neurotypicals so I have been having issues getting myself heard. It is worth talking to your gp and team about it but also - 

1. adhd makes my executive function dysregulated. there is little easy information and instruction its all on separate handouts. With chemo that gas gone out the window and I spent a day not understanding the phone numbers for example. Make sure you have an advocate or partner who can do this for you. Admin is currently verging on impossible for me. 

2. ADHD nervous systems need more space and time to regulate. Unlike standard anxiety and mindfulness my reaction has been completley out the blue and out of control. Processing all this leads to overwhelm very quickly so get space, time and help. Headphones but also physical space and air. I am still in the process of working this out. Lie on floor with feet in the air and cold water spray works for me. Havent been able to do this in the unit. 

3. ADHD gives us spurts of energy to move. Use disco or high energy music and enjoy moving. Those occasional moments of joy have given me glimmers of light in the grimness. 

4. ADHD needs fun and I need more fun with all this - any suggestions? I am planning looks based on Mad Max for hairloss etc. 

Looking for help with navigating chemo whilst ADHD pls.  

I was diagnosed by endoscopy aug 11th, i have 2 autistic children and an autistic grandchild and since diagnosis it has become quite apparent to me that im neurodivergent myself due to the overthinking obsessing and anxiety, also i guess ive been avoiding sensory environments i find distressing for many years and have been having to face these in hospitals undergoing many tests and soon a staging laporoscope. It feels like people are either really kind and understanding or really quite exasperated by my behaviour! Never know which to expect

I am living in ROI, moved here from Essex in 2004. This year has been a nightmare for me, as a 70-year-old neurodivergent person living alone with an invasive ductal carcinoma. My dogs (including my unofficial support dog) have been taken away for probably a year, so the biggest challenge was losing their support so I have been having more meltdowns. The oncology staff see this as a mental health issue that needs to be addressed but they don't know how to deal with it, as it is not their specialism. No referrals, or suggestions; so far, I have not been able to access any support from outside the oncology context. I was an inpatient for three weeks in May due to a serious infection and found the community living very hard to cope with, and was constantly in tears towards the end wanting to go home - my sanctuary – even though the nurses couldn't have been more sympathetic and caring.

However, my brother is still in the UK and has been going through prostate cancer for over a year, and he has been a huge help in explaining things to me, such as telling me everything I am worrying about is not only 'normal' but also temporary so it WILL come to an end. I developed a needle phobia (hysterics when anyone approached me with a needle, don't know where that came from) and he sent me a video which explained it all, and it disappeared very quickly. I can ring my brother about once a week for a chat; I think it benefits both of us.

I think the main piece of advice is, if you have no family locally and you don't feel that your needs are being met as a neurodivergent person, join groups like this one and look for other online supports to see if any appeal to you. It's hard when you think nobody around you can help but groups like this can easily put you in touch with the 'right' people for you – and only you know what will work.

Good luck!

So sorry to hear your dogs were taken from you, that must be so hard on top of everything else...our animals are a close family 

Sending hugs x

Thank you so much ... they are being well cared for by a good friend, but they are, as you say, close family and I miss them so much. I try to think that every day I wake up, is a day nearer to getting them back.

The problem is, it isn't even lack of clear communication, it's lack of knowledge. Neither my GP nor the Breast Care Consultant referred me to a menopause specialist. The BC Consultant didn't know I should be and challenged my interpretation of the NICE guidelines and BMS guidelines. Then Oncology wrote, no point referring her as she's not for HRT. So what I have now is a lack of trust and faith in their decisions based on me specifically.

I don't live in a healthy environment, physically or sensorily, which I have been trying to change for so long. And while yes, oestrogen feeds an ER+ tumour it also fuels a multi system role in my health conditions, and AuDHD.  To have increased fibro pain, PEM from the smallest of tasks, increased depression and mental health, increased brain fog and, complete sensory overload would be a nightmare for me that I probably wouldn't recover from, to give me any quality of life. Being cured, possibly, but at what cost.  And that isn't even factoring in treatment effects or the effects of not having hormones. Lifestyle choices have higher risks on cancer growth than HRT, and I don't smoke, drink, or eat animal products. It's ironic lol

Thank you. Yes, it's the hardest part, although they are having a wonderful time with my friend, who sends regular photos and videos.

Hi, can I ask how the medics are reacting to your treatment decisions? Are they dealing with them as being possibly skewed by neurodivergence  ... by which I mean not as reasoned as a neurotypical person?

Apologies if you have already shared this but I jumped from early posts in this thread to current ones.

I have fibromyalgia, chronic fatigue and in and of itself, that group of conditions is hard to explain and have understood. Adding in neurdivergent thinking and health management must then be a whole other storm.

Cheers

It's been a nightmare for me. The oncology teams have clearly not had any training in autism and I have NO family here in Ireland and no friends to support me. They don't know how to do with me if I have a meltdown, which happened a few times when I took a serious infection and was in inpatient for 3 weeks, desperate to go home, my sanctuary. I am 70 and live alone, and have dealt with my autism (at the high IQ, low social skills level, with high functioning anxiety) all my life. My dogs have had to go away for a year, so that is another key support gone, now my business has almost gone (my third pillar of self-support) and I am facing significant financial challenges.

I went to see my GP about my symptoms at the start of this year and got a locum, who was unpleasant and said, "you can't be autistic if you can hold a conversation". Then she referred me to a hospital at the other side of the country, which is inaccessible by public transport and too far for me to drive, with impossible parking. So I had to cancel my first appointment. My regular GP sorted this out but it delayed my diagnosis and treatment.