On Cancer & Chronic Illness

Heya! It’s been a weird year for me, loads of stuff, a lot of it crippling anxiety and a complete loss of motivation, has prevented me from blogging. I’m sorry about that.

As you probably know, I’ve been dealing with chronic health problems for years now; chronic pain, vomiting, nerve damage, gastrointestinal damage, and joint hypermobility. I developed a hiatus hernia in September which was having some pretty severe side effects, so I had an abdominal CT scan at the start of this year. It didn’t just find the hernia, but it also found a shadow on my right kidney. I had a more detailed scan in March, and in April a very nice Urologist and a Macmillan nurse told me the mass was solid, and most likely cancerous (over 90% chance), otherwise it would be precancerous with a very high chance of becoming cancer in the future. They tabled surgery within 4 weeks, and got it out. I’m currently recovering after having a open partial nephrectomy and getting the 21 staples removed this morning.

I’ve been thinking about the ways in which cancer is treated differently to other chronic illnesses, many of which also have pretty depressing prognosis’s;

  • On the day they told me I was greeted as I rolled into outpatients by a specialist nurse, who stayed with me during and offered to do so afterwards if I wished. I was also given leaflets explaining kidney cancer and the whole surgical process, step by step.
  • I was given contact details for that nurse, and I can phone her at any time, leave a message and she’ll get back to me asap to answer any questions. Not only that, but she has access to my medical records at the hospital so she can talk me through scans and similar too.
  • I have the support of numerous charities. Macmillan have proved to be wonderful, they have a five days a week phone line I can use to speak to a nurse, and they are very forthcoming with offering emotional support and financial advice. They also have a great online presence I can easily access. There are other specialist Kidney Cancer charities, and Cancer Research and so on and so forth that feel like they are bending over backwards to offer me support.
  • The NHS has a very clear pathway for the management of the issue. Diagnosis, quick move to surgery, then histology to examine the tumor, then within 4-6 of them replying to the team a follow up appointment is arranged. I know that if it’s cancerous I’ll have annual scans to check to see if it’s returning. If it’s metastasized (it shouldn’t have done that) then we’ll look at the best radiotherapy or immunotherapy for the job (no chemotherapy for kidney cancer), or more surgery.

I’ve had plenty of bad news from doctors, some of it massively life changing, but I’ve never known treatment like this. I’m used to heading into a small office, being told that there is nothing more they can do for me. Sometimes they give a half hearted suggestion such as;  “use a wheelchair”, “avoid tomatoes”, “talk to your GP about pain management”, or simply “don’t move your body like that any more”. Then it’s over. I’m in a hospital corridor, my world turned upside down, with no support, no idea where to get it from (if anywhere exists), and no idea what the future holds.

I would love to see a world where all patients, regardless of diagnosis had access to clear plans for management of their condition, even if it is only “continue with medication, contact GP if anything changes – watch out for x, y & z”. I’d like to see psychological support and financial & practical advice signposted to patients who have conditions that impact on employablity, psychological well being (like pain & fatigue can), suddenly have changes in mobility or cognition etc… In an ideal world, having specialist nurses that are available to speak to patients would also be wonderful, though given cuts I know it’s a pipe dream.

What I’ve seen is how well this can be done, and I now want to see it across the board. I get that Macmillan is one of the key reasons we have such good cancer services, but rather than seeing that as a barrier for other conditions, I think we can look at it as a working model that Healthwatch boards and similar could use as a standard to strive towards. Good practice needs to be shared, and is best used to help raise standards across the board.

 

Edited to add: It was kidney cancer, a stage 1, grade 2 renal cell carcinoma. As said above, we’re doing the whole watchful waiting thing to make sure it’s all gone.

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