Let's take action comrades

Diagnosed with breast cancer Local recurrence or new primary diagnosis
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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

x

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thank you for your suggestions including the life of Brian. i attended a group of women today and last Thursday which Breast Cancer Now organised for women in Kent and East Sussex whowant to move into recovery after treatment for primary breast cancer.

it was great as I now have a network of people nearby so I no longer feel so isolated. i live in a village with three buses a weekday which go to Heathfield and back. there is a train to London but they weren’t running today due to industrial action. I support this as the railways have been so run down with all services which are much better nationalised.

i know I am being political here but the supply of water and sewage disposal and train journeys are better managed on a countrywide basis as the main sewers cross over Kent, East Sussex, Brighton etc etc. As do the main railway lines not quite so smelly thank goodness. And the NHS also needs to be joined up but am Iiving in a dream?

All my treatment was under the NHS but a lot of people round here use Bupa. My dad and mum would not use private medicine as they came from poor working class families so I find it impossible to deviate from their principles. Everyone is entitled to my opinion!

Seagulls

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I’m with you on all of the points you have made and I’m glad that you have found some support locally . Xx

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Hi again my legion,

I hope you are all doing well, or as well as can be expected. It’s difficult to find the right words—perhaps there are no right words, or maybe they have been erased from our vocabulary by a “well-meaning” society that does not want to upset people with the business of being human, then let’s face it, sometimes it is quite messy.

I am happy for you, Seagulls. It’s crucial to have the opportunity to share our experiences in a face-to-face environment and to engage and interact with our comrades.

Personally, I have always opted for the NHS because I prefer a more organized system with clearer protocols and, frankly, because I don’t have the money to afford a private option. I am one of the many who, whether working or not, cannot pay for private care. I don’t judge those who use private services; in desperate situations, one explores all possible avenues. However, I strongly believe that a deteriorating public system will ultimately affect even those who currently can afford private care, as there is nothing to stop private companies from raising their prices when the opportunity arises. Thus, preserving public services benefits us all.

I am still striving to connect with other advocacy services, organizations, and individuals who might respond to the issues I raised in my initial post on this thread. However, I’m unsure if these concerns resonate with many of you or if they are merely a cry in the crowd.

Please, I’d love to hear your thoughts. And Seagull, keep all your feathers intact.

Much love to all.

The Wildest of them all X

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I forgot to mention the only shop in our village which still exists - the shop and the village that is - is the Post Office! And look what the current regime has done to that and to village post mistresses and masters.

I love our post office. One of the people who ran it died of Covid after the Christmas period. He also helped out at the station Bistro cooking pizzas outdoors

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It’s that kind of place. We even have some council houses left although precious few as most have been sold off. We also have the distinction of being the village where “A Clockwork Orange” was written by Anthony Burgess. His book reviews kept the post office going as he was sent six books a week to review and they had to take on extra staff to cope with all the parcels.

This is one area which may have expanded but the delivery companies now treat staff as slaves with fewer employment rights compared with government employees.

Let this be a warning to us all. I had a job with a decent pension and I am very glad I did

Us old birds can be wise
Seagulls

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