Let's take action comrades

My Dear Breasties,

It’s been quite a while since I last posted, and I plan to update you on my treatment “journey” in a separate post. But for now, I’d like to discuss a subject that I find very preoccupying.

I’ve always embraced a laid-back lifestyle, valuing the sweet art of doing nothing and relishing long siestas, even amid the turmoil of “battling” cancer. However, today, I wish to address a topic that’s been heavy on my mind, and I feel compelled to share it with you.

• The Impacts of NHS Privatisation:

Access to medical care through a public health system, in my eyes, isn’t just a fundamental human right but also a marker of social and economic progress. In truly democratic societies, these rights should be safeguarded and funded by the government, rather than diverting resources to, say, military advancements. The neglect of this leads to stark inequalities and preventable distress.

The shift towards privatisation, from my perspective, means healthcare becomes a commodity for those who can afford it, neglecting those in dire need. It’s disheartening to witness people accepting the notion that there’s no alternative as if it’s an absolute truth, rather than a deliberate political and commercial choice. We must urge our government to commit to preserving and adequately funding the NHS—our lives depend on it.

• The Patient treatment by Health Professionals:

Inspired by Nanni Moretti’s “Caro Diario” and its poignant commentary on the patient-doctor relationship, I can’t help but agree with the film’s closing remark: “Doctors are good at talking, but not at listening.”

As a cancer patient, my condition doesn’t strip me of the ability to comprehend what’s happening in my life. This disease is occurring within my own body, that is myself, and I refuse to be dispossessed of my autonomy by healthcare professionals who fail to listen and communicate effectively about my condition and treatment options.

It baffles me that empathy is so hard to come by when dealing with someone enduring a significant life event such as illness and suffering—an event we will all inevitably face.

• The Challenges of Bias and Accessibility in Healthcare:

The points on gaslighting, stigmatisation, and barriers to care for specific patient groups speak volumes without further elaboration.

• Societal Views on Cancer and Narrative Framing:

I find the militant vocabulary surrounding cancer narratives unsettling. I’m not a soldier in combat against a disease; I’m a person navigating through the facets of the human condition, which includes illness, suffering and mortality. It’s not about bravery—it’s about the reality of human existence.

The tales of battle only seem to comfort the healthy, painting us as abnormal and them as untouched by the affliction of these ‘brave and terrified warriors’.

• Sounding like a nutter to most of you

With this post, I aim to encourage the formation of patient advocacy groups, foster dialogue with healthcare professionals, and initiate workshops for both patients and medical practitioners.

I wonder if any of these thoughts resonate with your experiences or concerns, or if they align with what you consider part of a potential solution. I’m eager to engage in this conversation with you all.

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Totally agree about the privatisation of our NHS . It is a not to subtle attempt to do away with it and the trouble is that both of the two main parties seem happy to go ahead with this , which I find sickening. It must be protected AND preserved at all costs. A lot of us owe I lives to it.
Doug

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I work in the NHS and unfortunately this stealthy privatisation has been going for years and for much longer than most people are aware. Even award winning services are not safe. I’m also increasingly frustrated with how successive governments have chosen to run it - everything is compartmentalised a budget for this speciality a budget for that speciality, this condition belongs to this speciality and that condition belongs to a different speciality . It lacks consensus information isn’t shared and our bodies don’t work in a compartmentalised way so why should they be managed like that. The end result is that saving a bit of money in one area results in more being spent from a different budget.

I’m completely with you on the vocabulary around cancer as well and I think the media and TV have a lot to answer for in their portrayal of illness as well. In retrospect I can say I know how lucky I was to be diagnosed with an early stage 1 grade 1 cancer of a type that rarely spreads but at the time when you get a cancer diagnosis of any kind it’s like the bottom dropped out of your world .

Cancer doesn’t happen in a vacuum , for me it happened after the worst three years of my life during which time I had lost my two lovely aunties , then my Mum and most of the sight in my left eye. I had also managed to work in a hospital through a pandemic despite having underlying health conditions without dying or contracting long COVID and just when I thought life was getting better I got diagnosed with BC . And the very last thing I needed was for someone to tell me to " think positive " . I remember thinking what do they mean ? Do they mean that if I don’t think positive I’ll die and I thought of the people that I knew who have died of cancer and actually I know that they were pretty ****ing positive people. It seems like there’s some blame attached here and everyone wants you to be a good little cancer patient facing everything with positivity and bravery because nobody wants to deal with any messy emotions or controversial views. If you can do that and that’s the best way for you then ok I’m not criticising that , I know the value of positivity and gratitude I do my fair share of mindfulness and Yoga and know that these do work to an extent but the reason I need to do so much of it is because actually I’m not built that way and I know I’m not the only one. I’ve even found myself colluding with this image because it’s often easier to say "I’m fine ,I’m lucky " even if you don’t really believe it because you can’t explain how you really feel or deal with someone else’s emotions when you’re already struggling with your own or you don’t want to face intrusive questions.

Yes I think you could say your views resonate with me ( definitely hit a nerve ) and thank you for giving me an opportunity to express myself .

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I saw something maybe in the health service journal about a course for health care professionals providing radiotherapy that included patients who had received radiotherapy. Apparently this was an amazing opportunity for radio therapists to understand what it is like to have radiotherapy and what might have improved their experience. In 2004 I could not believe how much it was like being a piece of meat being processed in a factory and I was on and off the conveyor after undressing. Weirdly you were given weekends cos this was ok. I concluded it was because radiotherapists work 9-5 and have weekends free. There used to be 20-25 sessions but in 2004 at my hospital they were trialling having fewer ie 15 over 3 weeks. Really this was to cut the waiting lists as they could treat more women if they had fewer sessions of higher dosage.

Result - I felt I was a plucked chicken and I was roasted to a nasty degree. Burnt by radiation then accused by the oncologist of not using the prescribed lotion each day. I discovered they had not tested anything they did but it was obviously my fault when I was badly burnt.

I couldn’t wait to leave that ghastly underground place where everyone ran as klaxons went off to warn the staff to leave while you were being zapped. It still gives me the willies when I think back to the dungeon.

This time I had the same breast off and no rads as they cannot dose you again. One lung now has damage and as I had left breast cancer they were a bit worried my heart would be affected. Being only 48 it seems it was quite small - my heart that is.

Nowadays they tell you to hold your breath as they go over that side so your heart moves out of the way. Well that’s what I think happens. But we get treated like dead or dying animals being treated without the connection of respect, introduction, or as equals. Do I not deserve some respect ?

Seagulls

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My dear lovely Breasties, Breastless, and Unibreast,

I appreciate your patience as it has taken me a while to respond. A few points on this delay:

  • I had anticipated a more vibrant dialogue and responses from official sources, such as Breast Cancer Now.
  • The simplest tasks have become daunting, not due to fatigue but rather an existential crisis coupled with a notable dose of laziness. I apologise for this.
  • I’ve made an effort to socialise more; unfortunately, I find that I have a very limited capacity to do more than one significant activity per day, apart from managing to eat three times daily despite the exorbitant energy bills from Octopus Energy.

In my interactions on other forums, I’ve received scant responses. From Macmillan Cancer, however, I was directed to the following advocacy groups:

  • VoiceAbility – NHS Complaints Advocacy
  • NHS – Information on patient, carer, charity, and citizen networks
  • PoHwer – Advocacy

I am sharing these in case they might be of interest to anyone.

Nonetheless, I remain keen on continuing the conversation about the issues I’ve raised. These matters are paramount to me, not just as an ordinary human being and a citizen, but also as an ardent dog lover.

Here, I wish to mention a few books that have helped me reflect on my situation:

  • Cancer Diaries by Audre Lorde
  • The Undying by Anne Boyer
  • The Expropriation of Health by Juan Gervas and Mercedes Perez-Fernandez
  • The Secret Diary of Adrian Mole, Aged 13¾ by Sue Townsend

And a couple of films:

  • Caro Diario by Nanni Moretti
  • Life of Brian by Monty Python

I continue to strive to get my points across and reach out wherever possible to foster discussions around the concerns I initially posted.

Please share your thoughts, and I wish you all the very best.

Hope to hear from you soon

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