Rachel

Please note this article contains difficult themes, including the discussion of suicidal feelings that some people may find distressing. 

I have recently found out that I have been living my whole life up until now with undiagnosed ADHD. I have always suffered with low self-esteem and experienced difficulties with emotional dysregulation, impulsivity, inattentiveness, hyperactivity, and rejection sensitivity dysphoria. For me, this means that my emotional responses can be difficult for those around me, as they don't fit the expected pattern. I can be intense, impulsive and struggle to pay attention in the way most people are expected to direct their attention. I can also be hyperactive internally and mentally in terms of racing thoughts and also externally through physical exercise or physical activity, and experience pain when I feel both genuine and perceived criticism and rejection.

This had led to challenges in relationships and in the workplace which I am sure many neurodivergent people who are diagnosed later in life can relate to. But for me personally, these feelings intensified leading up to my diagnosis of stage 4 Hodgkin lymphoma, and throughout my treatment. In sharing my story, I really want to highlight that the cancer experience for people living with a neurodivergent condition, whether diagnosed or undiagnosed, can create a different set of challenges compared to people who are neurotypical. 

In spring 2022 a rash that had been ‘coming and going’ on my arms came back with a vengeance. I had been to the doctor previously, who said it looked like eczema, but I had never had eczema this way, over such a large area of skin, not localised, and never on my arms like this. I didn’t feel that was the answer. When it returned, it was the same rash, but much more aggressive. It started with my legs, then arms and then spread all over my body. The itching was awful, keeping me up at night. I tried everything to keep myself cool, as any warmth set the itching off even more. 

I was living like this for months and was feeling miserable. My doctor was still talking about eczema, but I asked if I could be referred to dermatology. The dermatology team took a biopsy from the rash on my leg after they had started me on a steroid cream. This improved things and they too were saying it was eczema. It still didn’t feel right to me; we know ourselves and know when something is wrong, and this just didn’t seem to be an answer to the difficulties I was experiencing.

I then noticed a lump that had developed on my leg so I went back to my doctors, although by now I felt like I was becoming a nuisance. He said that the lump was erythema nodosum (a condition that causes red, painful patches of skin) and that I could have TB so arranged for a chest X-ray. I thought this was going to be a waste of time as my chest was fine, but I was so uncomfortable and miserable I decided to try anything. I really expected nothing to come back.

Following the chest X-ray I was sent for a CT scan as the results showed I had enlarged lymph nodes in my chest and neck. A biopsy was then taken from the lymph node. From this biopsy, I was diagnosed with Hodgkin lymphoma stage 3, but after a full body PET scan I was diagnosed as stage 4, and I was told the lymphoma was hovering on the edge of my lungs. My consultant said I had six months left to live.

I was weirdly pleased to be right, as well as thinking that now there was a chance that things would improve. But once the high had gone, the reality set in. 

Rachel

After struggling with symptoms for so long, including dizziness, nose bleeds , fatigue and unexplained weight loss, and being sure that something was seriously wrong from the rash, my first thought was ‘I knew it!’ I was weirdly pleased to be right, as well as thinking that now there was a chance that things would improve. But once the high had gone, the reality of facing chemotherapy and losing my hair suddenly set in. I also felt – and still do feel - a lot of frustration that it took so long for me to get a cancer diagnosis. There is also the added frustration of the very late in life ADHD diagnosis, and a feeling of being let down by health care professionals, and sadness for what life could have otherwise looked like.

Looking back, there are many things that I felt at that point that now make sense given my diagnosis of ADHD. I have felt on a number of occasions over the years that I just wanted to ‘check out’, that I was exhausted, overwhelmed and simply ‘done’ with feeling like I was failing – in jobs or relationships and life in general - no matter how hard I tried. When I was diagnosed with lymphoma, my thoughts started to turn to: this is it. This is how I am meant to die. I even felt at one point that I didn’t want to go ahead with chemotherapy, that I didn’t want to feel even more wretched than I already did and the thought of suffering further was really hard, but for the sake of my family I went ahead.

I went on to have six months of ABVD chemotherapy which I found really difficult. I did not get hospitalised, but I felt terrible and dreaded the next round of treatment. I was also struggling with side effects of treatment. I listened to a podcast recently on neurodiversity and cancer, which said that studies have found that neurodivergent people struggle a lot more with the side effects of cancer treatment, due to sensory issues and more. This does make a lot of sense for me looking back on it. I struggle massively with needles, and the pain I felt during blood tests or having IV lines put in was, to me, unbearable. 

I knew it was likely my hair would fall out, so I avoided washing it too much and put it up in a neat bun to avoid brushing it. I ended up needing to have the bun cut out because my hair got into such a tangle. I didn’t like the way I looked with no hair, and lost my eyebrows, eyelashes and pubic hair. I decided I would wear a wig to feel more me. Very shockingly, my mother-in-law was killed in a car accident at this time, and suddenly all this didn’t matter. The wig, the make-up, all was discarded and I just resorted to a beany hat to keep my head warm.

My son was just seven at the time, and the loss of his granny and me having to undergo treatment had a huge impact on him. 

At the end of treatment I was told I had had a complete metabolic response and had gone into remission. It wasn’t until I had actually been declared as cancer free that I then remembered I had noticed a moveable painless lymph node in my jaw in the years leading up to the diagnosis. I didn’t think it was anything to be concerned about at the time. I checked this out with my haematology consultant, and he agreed that it is quite possible that this was a symptom of the cancer. He said that these are usually found below the jaw, and although it’s rare, enlarged lymph nodes have been known and found to be in the jaw itself. 

Everyone around me was thrilled with the news, but I just felt numb. I felt nothing at all. If anything, I felt guilty I did not feel happy about the news. I was still struggling with side effects. I had really dry eyes as a result of chemotherapy, was having gynaecological problems, and struggling with fatigue. But I feel certain that my ADHD has contributed to some of the long term effects I am experiencing post treatment. I have some balance issues, and have had a few falls, one resulting in a broken wrist after I went out roller skating. The combination of chemo ‘brain fog’ and ADHD hasn’t been great when planning to go out and enjoy life again! But I am determined to bounce back.

I have also struggled a lot mentally. I think it is going to be a long process for me, but exercise is proving really useful. When I exercise it feels like I think more clearly and my brain works better, so I work out three times a week. Now I understand my ADHD, I realise that the feelings of impulsiveness, emotional dysregulation and hyperactivity I have lived with my whole life are part of my condition. I really want to get that message across to others living with cancer and neurodivergent conditions, in the hope that they access support if they are struggling to manage their thoughts and feelings like I did. This is particularly important for people who are living with an undiagnosed condition. Now I am learning about myself and my brain, I want to share what I have learnt with others in order to raise awareness and support those who might be facing similar challenges.

There is no right or wrong way to go through treatment or cope afterwards. Whatever works for you is right at the time. If you’re having a bad time of it and want to say, that's fine. No one should feel the pressure of having to be positive all the time. But I would say, please trust in your body, as instinctively I knew that something was seriously wrong. 

Rachel has shared her story with us as part of our Let's talk lymphoma awareness campaign, running throughout Blood Cancer Awareness Month in September. Find out more about how you can get involved in our campaign to raise awareness and funds to support our work.