Funding, funding, and more funding! I spoke about the importance of money in my last blog post and I can’t stress enough how much more funding our NHS needs.
I have seen both sides of the story and trust me it makes a huge difference. Currently, I am ongoing an immunotherapy trial at UCH in London. UCH has a special McMillan Cancer Centre unit/building which is not private, it’s NHS but it’s funded by UCL. Clearly the University is investing quite heavily in it. Oh my! The care is outstanding. The place itself is incredible. It makes everything so much easier and so much more comfortable. They even have an app called MyCare where I can see all of my results, I can contact the team that is looking after me, I can see my future and past appointments, my prescriptions, my letters etc The staff there is no doubt working incredibly hard but the place it’s visibly not overly stretched in comparison to what I have seen at the N&N for example. The difference here is only one. Money! I stand with the strikes and I hope they make a difference because oh dear, NHS you need to be more looked after so you can look after your patients properly.
Sadly, I’ve experienced the care of overly stretched staff who don’t have the time to pay the needed attention where it’s due. During my second pregnancy and after the birth of my second son Francis, two years ago, I started experiencing very unusual UTIs. By unusual I mean a lot stronger, and a lot more painful than what I have had in the past. I was just given an antibiotic after an antibiotic. Constant wee tests were not every time sent to a lab but just dipstick tested so I was trying every antibiotic under the sun for months and months. Some would work, others not. The UTIs would come and go sometimes by themselves, I was so fed up with chasing and calling my GP with the same thing ( as I was getting a phone call with the same answer ) that sometimes I would just leave it and wait for the UTI to clear itself out and I would live on Nurofen and Paracetamol so I can function. This situation lasted over a year, around 18 months. Until the UTIs got so bad that I started seeing strange little-looking white clots and tiny spots of blood in them. And guess what happened? I got another antibiotic …followed by hooray! I was finally referred for an investigation, but drumroll please...it was just a normal ultrasound. Later down my journey, I found out that the only way to spot bladder cancer or a tumour inside the bladder is a procedure called cystoscopy which is essentially a tiny camera in the bladder. When the urine inside the bladder is infected it gets very dark and makes the ultrasound picture very unclear and it can easily cover up debris inside the bladder. So surprisingly to me at the time the ultrasound came clear! There was nothing to worry about and here is yet another antibiotic to clear the current UTI.
Cystoscopy is an expensive procedure and because I don’t fit in the usual criteria for bladder cancer, which is a male above 50/60 years old, I was not even being considered for it. Now, of course, it’s easier to blame the GP or the urologist who sent me for that ultrasound as clearly with my history I should have been at least given a cystoscopy ( the tiny camera procedure ) referral. However, I completely understand what it means when funding for a specific department stretches only that far. I was way down the pecking order because Trevor who was 85 and also had blood in his wee was a far better candidate for bladder cancer than me. Or the overtly worked GP who is looking after hundreds of patients and doesn’t have the time for as many faces to face appointments and it’s following the same kind of criteria, of course, they will just do the bare minimum to move things/patients along. In my case, I don’t blame the people, I blame the broken system and lack of funding. If I had a cystoscopy two years ago or even a year ago, the tumour wouldn’t have been muscle invasive yet and I wouldn’t be writing this blog today.
My husband saw me deteriorate significantly towards the spring and summer of 2022. He told my mother he was very worried about me. Now, those of you who know me personally have heard about my mum. She is a Bulgarian mum and she is in my business 24/7. She still thinks I’m 5 years old and that will never change. She is incredibly caring but in her own way and she knows everything!! So one day she told me “Look, stop ignoring your health and go and do something about it! Are there no private hospitals in the UK where you can pay for a proper investigation? This is not normal!” Of course, there were, I just never really thought about it as I trust the NHS doctors, they told me everything was ok so that was that for me. I also didn’t have the time to even think about my health too much as I was working all the time and had two mad little boys to look after. One day In between school drop off and running to catch the train to London, where I had an office at the time to meet clients and get my brand out there, I called the Spire Hospital. I explained I had lots of UTIs and I was getting worried so I was booked for an appointment with a urology consultant in a couple of days. That’s when I met Dr Utsav Reddy for the first time, I will talk about the fantastic people I met along the way in a different blog, but he is up there on my list! He also works for the NHS as well as the Spire. I think most consultants do. From the day I saw him to being diagnosed with stage 3 bladder cancer was in the space of 2 weeks. 2 weeks!
The day before Hector’s 6th birthday, I had the private cystoscopy at the Spire. I am not a medical expert at all, but I saw with my own eyes a cauliflower-looking thing on the screen in front of me from the tiny camera in my bladder. I knew it was cancer. I saw it in my consultant’s eyes. Although bless him he was trying to keep me calm and convince me it can’t be bladder cancer as I am so young 💁🏻♀️ A slightly awkward situation as I was laying down with my legs up in the air while we were trying to have a small talk and convince each other “it can't be cancer surely!” Following that, I had a day laser surgery called TURBT, again at the same private hospital done by the same doctor, where the tumour was scraped off. Unfortunately, it was already so deep in the muscle of my bladder that it was impossible to be completely removed. Dr Reddy had to stop “scraping” as he didn’t want to cut through my bladder. This was the first time I was given a McMillan leaflet. A had a biopsy, MRI scan and a CT scan before I was given the official diagnosis of T3b muscle-invasive bladder cancer and for the first time, I was referred back to the NHS.
Taking control of the situation saved my life. In my case, it gave me a little longer. I wouldn’t be here today if I didn’t call the Spire hospital. The tumour was 10cm big and it enlarged my bladder so much that I was in an insane amount of pain hence the need for me to take nurofen and paracetamol daily. Now looking back I wish I did it sooner. I wish I pushed the GP more, I wish I questioned that ultrasound because I knew my body wasn’t functioning properly. But once I was diagnosed and I was referred back to the N&N everything happened considerably quickly. On the 1st Oct 2022 I had my bladder removed and a hysterectomy during a 9 hours surgery performed by yet another amazing doctor using the latest technology a Da Vinci robot. I recovered very well from the surgery, however, I think it was a bit too late for me as the cancer came back with a vengeance only two months after the surgery. This time it was terminal and the spreading was in many other places. Cancer is a bitch. It can spread sneakily even after the main tumour has been removed. Especially when it's a squamous cell like mine aka the more rare untreatable type! It turns out only 5% of people with bladder cancer have the type I have. And around 1% are people under the age of 45. You can see why I didn't fall into the usual category... A friend of mine said “ of course, you would always go with the more exotic and exciting version!”
If you take anything from my story, please support the NHS strikes and also follow your instincts. We can’t expect to get the fantastic care we all want to receive if the NHS is not funded properly by the government. And on a personal level, only you know your own body! If something doesn’t feel right, then it’s not right. Question it and don’t be afraid to push for more answers. Don’t take someone’s word for granted. And because you might not fall into the right frame, it doesn’t mean you are not the exception!
Symptoms of bladder cancer include ( for both females and males)
Spots of blood in your urine
Thin white or light-coloured clots in your urine
Lower back pain
Pelvis/hips pain
Burning sensation
Love, V x