Don’t Ignore Those Night Sweats

A blog  for Kidney Cancer Awareness Week 2024 by Niki Ridge

DIAGNOSIS

My story starts in the latter part of 2021. I was 55, on HRT (Hormone replacement therapy) for several years but started getting terrible night sweats. I also had a persistent cough and some lower back pain that seemed to come and go. All just niggles really, but in January 2022 I went to see my GP to discuss. Given my age we decided that I might need to up my HRT for the sweats, I was referred for an x-ray for the cough and to keep moving for my back.

I had the x-ray the next day and received a phone call that afternoon from my GP explaining that she was referring me under the two-week cancer referral process. I was able to access the x-ray report on my surgery app and it clearly showed a large nodule and several smaller ones. I was pretty sure at this point that it would turn out to be cancerous. Next was a CT scan, and then another almost immediate phone call from the GP (while I was out walking my dog) saying she had to refer me again, this time for urology as something was showing on my kidney.

As you can imagine I got pretty upset at this, had to walk back to the car and get home and then to see the GP. Basically, within a week of first consulting my GP they had detected a large lump in my kidney and a few smaller ones in my lungs. I’m a great researcher usually, and this was no exception and so I got the full force of Dr Google, and pretty much decided that my time was up. Now, what I didn’t understand at this point was that there were new treatments for kidney cancer, and that the information online just didn’t reflect these new treatments.

I was biopsied and formally diagnosed in February –Metastatic Renal Cell Carcinoma with a 10cm tumour on my kidney, several lung lesions and metastases on my spine and ribs. Oh shit!

I’m a mum to 2 boys, one was in his first year at university, and the other was in GCSE year. My husband, Steve, and I decided not to tell them anything till we understood more about treatment options and prognosis. Ultimately we waited until Jamie, our eldest was home for Easter before telling them, I couldn’t imagine telling him on the phone and didn’t want to call him home to tell him earlier. Our youngest was still at home and we tried to behave as normally as possibly around him, but there was a lot of crying at friends’ houses or late at night. It was the hardest conversation I’ve ever had, I said that I have cancer and was having treatment and that their jobs were to keep working hard and enjoying their lives and not worrying about me. My husband and youngest (who’s still at home) have looked after me so well.

TREATMENT BEGINS

My first meeting with my consultant was strangely positive although the situation was clearly serious it certainly wasn’t as bad as I was imagining. I was incurable, but treatable, and potentially for quite a long time. To be honest I didn’t really know that this sort of outlook existed for cancer – I thought you either had cancer that you recovered from after treatment, or you expired pretty quickly.

We agreed on immunotherapy as my treatment, surgery wasn’t an option as the cancer had already spread to multiple sites, and in any case my consultant didn’t want to waste any time getting me onto treatment. He explained that some people respond really well to immunotherapy and some don’t, and some even have a complete response.

So, I started treatment in March; 4 infusions of nivolumab and ipilimumab every 3 weeks, and then 4 weekly nivolumab. Side effects didn’t seem too bad at all, I had some days where I was incredibly itchy, and my bowels were somewhat irregular, but nothing that needed any intervention.

SHOULDER PROBLEMS

Around the end of April I started suffering from a painful right shoulder. The pain became so bad I remember going to a consultant appointment and having to lie down as it was the only way the pain eased. My consultant thought it was probably an auto immune response caused by the immunotherapy, so we paused treatment, and I enjoyed my first dalliance with strong steroids. I was worried that this reaction could mean that I would have to stop the immunotherapy so soon after starting – I had hoped to get more than a couple of months out of my first line of treatment.

The pain did ease a bit, but I noticed that my shoulder was quite numb to touch and mentioned this in passing to my amazing specialist nurse, who referred me for an immediate MRI. It turned out that it wasn’t an autoimmune response but a tumour in my spine pressing on the spinal cord. I had a fun admission to hospital and was transported to Oxford for a huge blast of radiotherapy the next day. This did the trick, I was in much less pain, and best of all I could restart my treatment.

Whilst on immunotherapy I get scans every 3 months, and my first scan showed that my kidney tumour significantly shrunk, and the mets in my lungs also shrunk. Fantastic news, now the plan was to stay on this stuff for as longas possible!

MENTAL HEALTH

Even though physically things were ok, my mental health deteriorated rapidly in Spring and early Summer. I became incredibly anxious, couldn’t sleep and was terrified of being left on my own. I’ve always been lucky in this area and life became quite difficult, I also completely lost my appetite and started losing weight. My specialist nurse set me up with one of the cancer specialist psychologists at the hospital, and together we worked on strategies to reduce my anxiety. My poor husband was unable to go to Glastonbury that summer because I just couldn’t cope (and hasn’t managed to get tickets for the last 2 years ☹). I was also extremely fatigued, and mentioned this to my consultant in July, and he requested a cortisol test for me and lo and behold, I had none! I had developed Addison’s disease, which is an autoimmune disease which stops the production of cortisol (stress response hormone). I was put straight on to a low dose of steroids and almost immediately felt better. I’ll need to take these for the rest of my life, but they transformed my appetite and my anxiety disappeared within a couple of weeks so it’s a small price to pay (plus they are literally keeping me alive).

On reflection I was pretty poorly during this time, luckily, I don’t think I realised it at the time, but I know I really put my family through some tough times.

AARGHH – A LUMP

Things were proceeding quite well through Autumn, until I noticed a fairly large lump in my breast in October. I was quickly referred to the breast clinic and it was confirmed that my kidney cancer had unusually spread to my breast as a 5cm tumour. I was devastated, thinking that this was a sign that my immunotherapy wasn’t working, but the cancer everywhere else was still receding so it didn’t really make sense. It was decided that we’d leave the lump where it was as there was no clinical reason to remove it, but my consultant was happy to continue with the treatment. I’ve learnt that my response to these setbacks is a week of pure panic and catastrophising that it’s all over, followed by my ‘ok, what can we do about this then’ more pragmatic approach. Waiting for the plan after finding something negative is the hardest thing, I’m fine when we’ve got a plan. Incredibly this lump completely disappeared within 6 months and is no longer reported on my scans.

My favourite phone call of 2022 was one on 16th December from my consultant, my main tumour was now less than half it’s original size and my lungs were clear. He was as thrilled as I was. It was our Christmas mums’ night out that night, and boy did we party!

BRAIN TROUBLES

In January 2023 I started experiencing some visual disturbances and then terrible headaches. I visited the eye clinic and my GP, and even the ER one day when the pain was so bad. I was stocked up with migraine meds but continued to suffer so mentioned it to my consultant and found myself having a brain MRI the following Sunday. My least favourite phone call of 2023 was the one telling me I had a 3cm tumour on my brain. Once again, I thought that was it, I’ve got progression of my disease, the immunotherapy has stopped working. Instead, I ended up in the most slick, positive process I’ve experienced (and on a huge dose of steroids – I did not stop eating for weeks!)

I saw the brain surgeon in Oxford, he was so confident that he’d just whip it out and I could get back to fighting the kidney cancer that I totally believed him. I had my op on February 22nd and was ready to go home in 48 hours. You wouldn’t really know I’d had brain surgery, my head wasn’t shaved, and the recovery was incredibly easy. I didn’t even miss a scheduled immunotherapy treatment. I had some ‘just in case’ radiotherapy in April, which necessitated my wearing a mask that reminded me of the Power Rangers. Since then, my scans have all been stable and I continue to have nivolumab every four weeks. I have mild side effects, but nothing that causes me too much bother.  I’m still trying to shift some of the weight I put on when on high doses of steroids though, but not too hard! Scanxiety is tricky to deal with, but I can put it away till results day now, and not spend the preceding fortnight worrying too – thanks to my lovely psychologist.

It was lovely to have some stability in 2023, and as I come up to my 2-year ‘cancerversary’ I’m so grateful for the research that gives such hope to those of us living with cancer. My main hope is for more stability this year, I know the cancer will never be gone, but as long as I can keep living it up I’m good. I’ve had some pretty rubbish experiences, but I’ve also had wonderful times with my family and friends too. I’ve flown on holiday, something that I thought I’d never do again, and am lining up several holidays for 2024 too.

It is a cliché, but every day has become so precious to me, I am so content at home with my family around me and I really do try to appreciate the small things in life – oh, and box sets; lots of box sets.