Dorset teenager updates us on her cancer journey

Nevah Richards, 13, is looking forward to a family holiday, being able to finally go swimming and getting back to school to catch up with her friends after being diagnosed with cancer last May.

After rounds of proton beam therapy and chemotherapy and nearly two months of living in London with a couple of hiccups along the way, Nevah has shared an update into her journey so far.

Over to Nevah:

I’ve had quite a busy and intense couple of months.  My Proton Beam Therapy (PBT) at University College London Hospital (UCLH) started at the beginning of November, so I spent six weeks there having treatment, five days a week. 

I was a little bit worried how it was all going to work because I would still be receiving chemotherapy while I was there at the same time as having PBT, and I know how horrible I feel when I have chemotherapy.

Before going to UCLH for the six weeks, I had lots of meetings and scans in London before starting, this was to prepare me for what might happen and go over the worst-case scenarios. 

Things they said might happen was skin toxicity, pain, discomfort in my pelvis.  They also said my toilet habits would change because my bladder and bowel would be in the radiation zone as my tumour was so big at the start.   

The first couple of weeks of PBT went really well, they took time to get me in the right position because proton beam therapy is so precise.

 The big dose of protons goes straight to my tumour and stops before damaging too much tissue around it. 

I got to know the staff really well, they were really kind and considerate.  I also made friends with two other girls of a similar age to me. Sophie who is from Devon has a very similar diagnosis to me and Isobel lives in Essex. I am in regular contact with them and also Ethan from Dorchester. It’s good to be able to chat to other teenagers who understand exactly what this is like. 

I had to go the Macmillan Centre for the chemotherapy which is a little scary at first as it is so big and its full of patients receiving chemo.

But I soon got used to it and much prefer the way the chemo is done there because they send you home each day with a backpack of fluids as soon as the chemo drug has been administered. Which means I am not having to spend six days and nights in the same room like I do in Southampton. I even got a hand massage from a lovely lady who offers them for free during one of my treatments.

After the first chemo cycle, I managed to go to Madame Tussauds.  It was a great day away from the hospital as PBT is every weekday for six weeks.  It was a chance to see all the celebrities and I couldn’t believe how tall Stormzy is.  My favourite wax work was Dua Lipa, The Rock and cricketer Sachin Tendulkar.

I was too tired most of the time to do much else in London but I did go to Lord’s Cricket Ground for a tour which was amazing, I had a great afternoon at London Zoo and also managed to get to London Aquarium and the Lego Store. I am hoping that I will feel stronger when I go back next month so I can see other parts of London. 

Nevah Richards and her family (Image: Adam Richards)

After week two, I started to notice changes when I went to the toilet, and after a top up of blood and platelets we started to notice my temperature going up.  I was really sad because my sister and dad were up that weekend to see me.  I was soon admitted into hospital as they discovered I had an infection called C-Difficile. 

I was really ill, had shivers, tummy cramps, was sick, had diarrhoea and a temperature of 40.  I had to go into an isolation room while my blood cultures came back.  They take blood cultures to go to the labs to see what infection is growing.  This is the frustrating bit as it can take 72 hours before some infections grow before they can get the right antibiotic for me. 

The doctors think it started because I’ve had lots of previous antibiotics which break down the good bacteria in my colon.  The good news was PBT didn’t stop.  So I had to force myself to eat lots of bananas and drink lots of fluids.   

PBT continued as normal without further complications during week three and four. 

I was able to go to London Zoo on one of my good days and went out for lunch with mum to Primrose Hill. We had our own apartment in Camden, which was lovely, as they have a brilliant market full of weird and wonderful things.  I also went to a coffee shop with Sophie and her mum in Camden which was nice to be able to have a chat away from the hospital. 

Week five was going really well, although my skin was starting to break down due to radiation. 

On my last day of week five, the PBT machine broke.  PBT works from one main cyclotron which runs four gantries. The gantry is the treatment room. 

Unfortunately, PBT is not like classic radiotherapy, there are no back up machines. I missed 6 days of treatment as we had to wait for a part to be delivered from Germany and the engineers had to check everything was working.

Nevah Richards at the Proton Beam Therapy machine (Image: Adam Richards)

The PBT machine is very complex.  I had to switch to photon therapy for my final week as the machine just wasn’t working.  It was quite frustrating as we were getting updates every few hours so it made it hard to do anything as we were always waiting to see if I was getting treatment.  Photon therapy was in a different building but all my usual staff at PBT transferred over.  I just wanted to get home after nearly two months living in London, and see my dog Coco.   

Nevah and Coco (Image: Adam Richards)

I finally got home just before Christmas and had a quiet one at home with my mum, dad, sister and Coco. 

I was so excited to see Coco and I couldn’t believe how much she had grown. We managed to get away for two days at New Year in Cornwall in between more hospital appointments. 

I’m looking forward to getting my last chemotherapy cycle finished, which was due to start on January 16, but has been delayed due to my blood count being too low, but I am hoping I will be ready any day now.

I then go back to London for two weeks full lung radiation. This will then be the end of my treatment plan and I’m looking forward to getting my central line out as I’ve not been able to go in water for so long and Mum and Dad are treating us to a lovely holiday and I can’t wait to get in the sea and pool.

I will also be starting to think about getting back to school to see my friends.  

Nevah