My name is Louise and this is my story of living with a rare cancer called Pseudomyxoma Peritonei (PMP).
Receiving a cancer diagnosis changes your world forever. Being told that your cancer, on average, affects one person in every million each year makes it even scarier!
As well as increasing awareness of PMP, I want to break down some of the stigmas, taboos and misconceptions related to cancer. I feel there is a distinct lack of representation of young adults with cancer, particularly colorectal cancer and that needs to change. Having cancer is one heck of a roller coaster ride and everyone’s experience is different but I want to prove that life can still be lived to the full. I’m a bearer, not a fighter.
I hope sharing my experiences, good and bad, will provide some comfort and support to anyone affected by cancer and other chronic health conditions.
Thank you for your love and support!
My name is Louise, I am 40 years old and I live in Norfolk, UK.
In September 2014, at the age of 34, I was diagnosed with a rare and invasive form of cancer called Pseudomyxoma Peritonei (PMP).
In December 2014 I underwent radical surgery at Basingstoke & North Hampshire Hospital. Known as ‘The Mother Of All Surgeries’, my surgery involved removing the areas of mucinous tumours as well as all my non-essential organs. During an eight hour operation I had my gall bladder, spleen, lesser and greater omentum, uterus, Fallopian tubes, ovaries, cervix and appendix (where the cancer had originated from) removed. My liver, rectum and diaphragm were stripped as well.
I recovered without any major complications and life returned to a ‘new normal’, however in November 2017, three years after my initial diagnosis, I was given the devastating news that my cancer had returned. Due to PMP being a slow growing cancer, I was placed on watch and wait with annual surveillance scans until December 2020 when I underwent debulking surgery. As well as removing all the tumour around my stomach, bladder, pelvis, liver, rectum, diaphragm and some of the small bowel, surgeons also removed all my large intestine and around 60% of my small intestine. One round of HIPEC was pumped into my abdomen immediately afterwards. I was left with a permanent ileostomy.
Unfortunately I developed a pulmonary embolism in my heart and lungs two days after my colorectal operation and was rushed to St Thomas’ hospital in London. Due to the blood clots being so big, widespread and multiplying quickly, I underwent emergency open heart and lung surgery, where the clots were pulled out by hand. Despite the odds not being in my favour, the surgery was a success and I survived. I am now recovering slowly but steadily from both surgeries at home.
Since my original diagnosis I have been diagnosed with an underactive thyroid, chronic fatigue/ME, PTSD, short bowel syndrome, high anxiety and severe depression. I am also menopausal. I have symptoms from most of these conditions every day but life goes on and I do my best to live a ‘normal’ life!
In my spare time I enjoy going to the gym, travelling, writing, painting, listening to music and going for long walks in the countryside. I love cakes, coffee, nature, dogs and holidays in Ibiza and anything macabre. I also have a burgeoning skull collection!
About Pseudomyxoma Peritonei (PMP)*
What is Pseudomyxoma Peritonei?
Pseudomyxoma peritonei is pronounced ‘sue-doh-mix-oh-muh pary-ih-ton-nee-i’ and is often abbreviated to PMP. In most cases, it starts in the appendix. More rarely, it can start in other parts of the body such as the bowel, an ovary or the bladder. It affects around two people per million each year of all ages, both men and women. A tumour develops in the appendix from a polyp which is a small growth on the inner lining of your appendix. At this early stage, the tumour is rarely discovered as it doesn’t cause any symptoms.
Left untreated, the tumour grows and eventually bursts through the wall of the appendix into your abdominal cavity where more tumours then develop. These tumours then secrete a jelly-like substance called mucin which accumulates in your abdominal cavity. It is this build up of mucin that causes symptoms, the abdomen swells leading to the characteristic ‘jelly belly’ and vital organs are compressed.
What are the symptoms?
- Abdominal swelling or an increase in abdominal girth
- Changes in bowel habit
- Loss of appetite
- Pelvic or abdominal pains
- General fatigue
- Bowel irritation
Symptoms of pseudomyxoma peritonei usually take a while to appear. Some patients don’t show any symptoms for several years. As the symptoms of PMP vary widely among patients, it’s hard to say what to look for.
These symptoms can also be caused by lots of medical conditions other than PMP. However, due to the nature of this cancer, it’s vital to rule out Pseudomyxoma Peritonei as a cause. Any unexplained symptoms should always be discussed with your doctor.
What treatment is available?
Cytoreductive surgery is an operation that removes the tumours that have seeded around the abdominal cavity. It is a very long operation – usually between 10 and 14 hours. The surgeons work to remove all visible tumours in your abdominal cavity, that’s down to 2mm. HIPEC is liquid chemotherapy solution that is poured directly into the abdominal cavity at the end of the operation. The aim of this is to kill off any remaining cancer cells after the operation to prevent them from growing new tumours. Chemotherapy solution is a liquid chemical solution that kills cancer cells. It is usually heated to about 42C (your body temperature is usually about 37C).
About The Pseudomyxoma Survivor Charity
Pseudomyxoma Survivor is a non-profit organization, run by patients and caregivers. The charity has a thriving support community providing emotional support to anyone whose life has been touched by Pseudomyxoma Peritonei (PMP) as well as appendix cancer and other peritoneal surface malignancies.
As these diseases are so rare, having a global presence gives the community a scale where it is able to offer genuine support and advice around the clock – both emotional and practical. Patients, caregivers and families have joined together to create an online ‘family’.
The charity offers:
* Practical and emotional advice on managing symptoms and all aspects of living with this rare disease
* Manage a one-to-one buddy system
* Fund small grants to help patients and caregivers with the impact of treatment
* Support research
As a non-profit organisation, the charity is completely dependent on voluntary donations and is run entirely by volunteers.
For more information visit https://www.pseudomyxomasurvivor.org
My PMP Story
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What to say to someone with cancer.
“If you need anything just let us know” is a phrase we often say to family or friends who are going through a tough time. It’s a verbal hug to those we care about when the proverbial hits the fan.
I guess it’s our way of conveying empathy and support in the absence of knowing what else to say, or to be more specific, what the ‘right’ thing to say is. Such expressions can be a default reaction to how we handle emotionally challenging news and in an age of political correctness, censorship and social paranoia, more of us turn to such platitudes to handle difficult situations. In the modern world the ‘rules’ on what is deemed socially appropriate are constantly evolving. Whilst this is certainly a positive step towards a progressive, kinder and more equal society, the worry of offending someone, being misinterpreted or not complying with what we’re ‘supposed to say’ can sometimes feel suffocating. In turn much of what we say and how we converse with each other, be it face to face or digitally, can sometimes appear contrived.
The truth is most of the time we simply don’t know what to say when faced with someone else’s bad news. How do we address the elephant in the room? What exactly is the correct thing to say to someone who is going through something like a cancer diagnosis? If you search online there are numerous articles about ‘what not to say to someone with cancer’. Have a quick look through them. Do I agree with the points made? Most of them, yes. Would I ever ‘call someone out’ and risk making them feel bad about expressing their thoughts? Absolutely not! Who am I to dictate how someone conveys their emotions? Any compassionate and morally astute person will adopt a degree of sensitivity and tact when reacting to the news that someone close to them has a serious health problem. Cancer doesn’t just affect the individual whose body it’s invaded and the ripples of shock, fear and helplessness resonate much wider. So when is it OK to just be completely honest? When is it alright to say how we feel?
As previously mentioned in this blog, I’m incredibly fortunate to have a solid group of relatives, friends and acquaintances whom I trust and believe in (I like to think I’m a good judge of character!). I know that every offer of support David and I received during the PMP nightmare was sincere and this particular piece of writing is by no means a snub or a finger wagging lecture to any particular individual. I have shared my experiences online and face to face for a number of reasons, whether it’s to raise awareness of this rare disease or to justify to a stranger why I can’t have children (because naturally, being a woman in her thirties, my fertility is up for discussion whether I like it or not!) Most of the time I try to skirt around a topic to avoid having to mention PMP to strangers, for a number of reasons.
Firstly, I feel guilty about dropping the C bomb on people, some of whom I’ve only just met (terrible conversation starter!) and I worry about being perceived as some self-serving martyr seeking praise or sympathy. Talking about the most traumatic time of my life can also be utterly draining, embarrassing and as time goes on it definitely gets tougher. I feel the panic rising in my body, with muffled ears, wobbly legs, sweaty palms and a racing heart as my brain and ears catch up with what my mouth is spouting off. It’s like I’m only just recognising the magnitude of what’s happened to me, like I’m being winded or hit by a wave. A classic sign of PTSD I’ve been told, but that’s another subject for another day!
I’ve encountered a couple of individuals who have literally dismissed my illness and treatment. I realise that cancer sadly affects thousands of people and most of us have been affected in some way or another. Relating our experiences to someone else’s is completely normal and can help us grasp some understanding of what they may have gone through, but responding with “oh, you’re one of the cancer lot”, or “yeah, my mum’s aunty’s friend’s dog (delete where applicable) had something like that and they got over it/died” is deeply frustrating and upsetting! Every time I tell someone new that I had cancer I’m sharing a deeply personal secret, so for them to trample all over it with a throwaway comment is crushing. I never expect someone’s sympathy or praise and understand it’s just a different person’s way of handling an awkward situation….although on a bad day I write them off as cretins devoid of emotion and compassion!
I’d never want anyone to truly understand what I’ve experienced as it would mean they would have been through the same thing. I wouldn’t wish it on anyone, even in jest. I was always told to treat others as I’d like to be treated myself. It’s how, I believe, we should all treat each other as a society. So with that in mind I’ll get back to my original point. What do you say to someone who has, or has had cancer? The truth is…..just be normal. Just be you. Just be nice. It’s not necessarily what you say, it’s how you say it. Be understanding, but please don’t say you understand.
We’re all sentient beings made up of millions of cells. The only difference is I happened to grow some bad ones.