When the Body Says No by Gabor Maté

A friend recommended this book to me, whose subtitle is "The Cost of Hidden Stress".  The book is
about the link between body and mind, and the fact that our emotions can make us ill, especially if we do not resolve any hidden stress in our lives.

The synopsis says:

Can a person literally die of loneliness? Is there a connection between the ability to express emotions and Alzheimer’s disease? Is there such a thing as a ‘cancer personality’?

Drawing on deep scientific research and Dr Gabor Maté’s acclaimed clinical work, When the Body Says No provides the answers to critical questions about the mind-body link – and the role that stress and our emotional makeup play in an array of common diseases.

When the Body Says No:

- Explores the role of the mind-body link in conditions and diseases such as arthritis, cancer, diabetes, heart disease, irritable bowel syndrome and multiple sclerosis. 
- Shares dozens of enlightening case studies and stories, including those of people such as Lou Gehrig (ALS), Betty Ford (breast cancer), Ronald Reagan (Alzheimer’s), Gilda Radner (ovarian cancer) and Lance Armstrong (testicular cancer)
- Reveals ‘The Seven A’s of Healing’: principles in healing and the prevention of illness from hidden stress

Now, I have to say that when people give me 'cures' for cancer - whether it be green juice, blueberries, cutting out sugar, or whatever - I am usually rightly skeptical.  So when I started reading this book, I was a bit worried that it would be of the same ilk, but I was pleasantly surprised!

This book is based in science, but links psychology to medicine via what it calls the PNI system - Psychoneuroimmunoendocrinology system. 
It is widely known that hormones can affect your physiology and how well your immune system works.  Your hormones, in turn, are affected by your emotions and what you are feeling, so it is not a big leap to hypothesise that your emotions can have a direct link to your physiological well-being, specifically if your body is rife with stress hormones such as cortisol over sustained periods due to repressed emotions.

Dr Maté says this link can lead to many illnesses and diseases from arthritis,CFS, to cancer, MND and Alzheimer's.  As much of this repression is caused by how we were brought up as children, Dr Maté is quick to mitigate the assumption of blame apportioned at our parents, though does show that this cross-generational dance of repression can manifest itself such that some diseases appear like they are hereditary, without the genetic link.

For me, I found this a really interesting book, and it wasn't too difficult to read.  It makes sense from both a scientific and a common-sense understanding, and has encouraged me that going to speak to a therapist is the right thing for me.

Stomach Pain

Another sleepless night of stomach pain last night, means I'm feeling absolutely knackered.

I get stomach pain every few months, and it hurts!  The best way to describe it, is that it feels like I have been skewered right through my stomach to my back with a javelin that someone keeps turning and twisting.

I can't remember when it started, but I know that when I was fed up of it, I started a food diary, in the hope that I would see a pattern, be able to attribute it to a certain food, or type, and do without.  Unfortunately, the first date was back in Feb 2014 and now we're 5 years later, with no rhyme nor reason to it.  So, up til now, I haven't been to the GP about it, because I don't know what they'll say.  The pain only usually lasts for a max of 24 hours, and then I can go months without a recurrence (usually, though sometimes it does come back within a week).  Coincidentally, I booked a GP appt yesterday for something else, so will talk about it then, even though the appt is not for another FIVE WEEKS because, as you've read before, since a takeover, getting an appt at my surgery is crap.  I predict at the appt, I'll be asked if I'm currently in pain? No. The doc'll examine my stomach and find nothing wrong.  I'll show my food diary, and they'll be no pattern, and eventually it'll be my fault I'm in pain because I'm obese and don't always eat well.

When I'm in that much pain, I can't sleep, and curling into a ball helps a little, but not that much, even when taking paracetamol.  Last night, I decided, yet again, to see what NHS online says.

WARNING: Please do not try to self diagnose yourself at home.  Whilst Dr. Google knows a lot, he cannot replace going to a real GP.

That said, that's exactly what I did.

I did try to go to reputable websites, such as the NHS, rather than randomly searching the internet and getting horror stories, so it's not all bad.  I've come up with two reasonable diagnoses, one less common, and two much rarer, but possible because of my history, diagnoses.

Firstly, I went through the questionnaire on NHS online of current symptoms.  Their advice was to see a GP, asap so they can examine you when you still have the pain.  Not much help to me, when the first available appt isn't for 5 weeks.  I didn't make an "emergency appointment" this morning (ie to be on the phone on hold for a couple of hours, in the vain attempt of securing a same day appt, before being told there are none left and try again tomorrow) because both DD1 and DD2 have Modern and Tap exams today, at separate times of course, spread throughout the day, so I have no free time for an appt, even if I wanted one.  If the pain flairs up again tomorrow, I might try and get an appt, but both those scenarios (1. still being in pain, and 2. getting an appt) are unlikely.

So, my five self diagnoses are:

1. Stomach ulcer.
NHS says "The pain caused by a stomach ulcer can travel out from the middle of your tummy, yo to your neck, down to your belly button, or through to your back.  It can last a few minutes to a few hours, and often starts within a few hours of eating.  You may also wake up in pain during the night."
That pretty much sums up what I've been experiencing, though I've never had it last only a few minutes.  In order for it to be diagnosed, I might need to give a breath or blood test, or even have a gastroscopy in hospital - which doesn't sound fun. I've only recently (well, now I think about it, it was 7 years ago, but still feels recent) learned how to swallow tablets, so don't relish the thought of swallowing a camera.

2. Gallstones
NHS says "Gallstones can cause sudden, sever abdominal pain that usually lasts 1 to 5 hours, although sometimes it can just last a few minutes. The pain can be felt in the centre of your abdomen (tummy); just under the pribs on your right-hand side - it may spread from here to your side or shoulder blade. The pain is constant and isn't relieve by going to the toilet, passing wind or being sick.  It's sometimes triggered by eating fatty foods, but may occur at any time of day and may wake you up during the night.  Biliary colic doesn't happen often.  After and episode of pain, it may be several weeks or months before you have another episode."
Again, this seems to describe what I've been experiencing.  The main thing that thinks it may not be what I have, is that a friend suffered with this recently.  She is someone who has given birth 5 times, without anything stronger than gas'n'air, and said the pain was worse than child-birth.

3. Pancreatitis
NHS says "The most common symptom of chronic pancreatitis is repeated episodes of severe pain in your tummy (abdomen).  The pain usually develops in the middle or left side of your tummy and can move along your back. It's different to acute pancreatitis, where the inflammation is only short term.  Most people with chronic pancreatitis have had one or more attacks of acute pancreatitis": "This aching pain often gets steadily worse, and can travel along your back.  Eating or drinking make make you feel worse very quickly, especially if you eat fatty foods.  Leaning forward or curling into a ball may help to relieve the pain, but lying flat on your back often makes it worse. Acute pancreatitis caused by gallstones usually develops after eating a large meal."
Not only this, my paternal grandmother died from Acute Pancreatitis, and there is suggestion that a tendency for pancreatitis can be hereditary.

4. Pancreatic Cancer
NHS says: "Pancreatic Cancer is caused by the abnormal and uncontrolled growth of cells in the pancreas - a large gland that's part of the digestive system.  It's uncomon in people under 40 years of age.  In the early stages, a tumour in the pancreas doesn't usually cause any symptos, which can make it difficult to diagnose.  The first noticeable symptom of pancreatic cancer [is] often pain in the back or stomach area - which may come and go at first, and is often worse when lying down or after eating. In about 1 in 10 cases, pancreatic cancer is inherited.  Certain genes also increase your chances of getting pancreatitis, which in turn increases your risk of developing cancer of the pancreas."
Guess what having the BRCA mutation is good for?! According to the National Centre for Biotechnology Information, "Germline mutations in the tumour suppressor genes breast cancer antigen gene (BRCA)1 and BRCA2 have been proven to portend a drastically increased lifetime risk of breast and ovarian cancers in the individuals who carry them. A number of studies have shown that the third most common cancer associated with these mutations is pancreatic cancer."
Yey for me! 

5. Peritoneal Cancer
This is a much rarer type of cancer, so I can't find it in the info pages from the NHS site I was using previously.  It is a cancer of the peritoneum, and full details can be found on this Target Ovarian Cancer link: "Many women are told that primary peritoneal cancer is a type of ovarian cancer and is usually treated in the same way.  However, it does not  originate in the ovaries but in a different part of the body called the peritoneum." And yes, having the BRCA1 mutation does mean I'm at a higher risk of getting this type of cancer too.  Cancer Reasearch UK says: "Symptoms for primary peritoneal cancer can be very unclear and difficult to spot. Many of the symptoms are more likely to be caused by other medical conditions.

The symptoms of PPC include:

• a swollen tummy (abdomen)
• abdominal pain
• feeling bloated
• loss of appetite"

Now, because I have been running around all day (well, back and forth to the dance studios) because of the girls' exams, it has taken me a long time to finish writing this blog post.  My stomach finally feels nearly back to normal.  I managed to eat chicken, rice and salad at lunch time.  I bought the girls a cake to celebrate the end of their exams, but the smell of it makes me wary about the effect it will have on my stomach, so though I probably will have the thinnest of slices (I'm a sucker for butter icing), my appetite isn't quite there yet.

Ovarian Cancer Anniversary

As I've mentioned before, four years ago, my mum was first diagnosed with ovarian cancer.  This is a huge anniversary.  At time of diagnosis, the cancer was already at Stage 4. This means it had already spread beyond the tumour in her ovaries, and was in her lymph nodes in her neck.  At this stage, we were told there is only a 15% chance of surviving 5 years; as such, it's amazing my mum has now survived 4 years. Not least because she's at the end of more chemo treatment*, because it has returned multiple times. her cancer has been reclassified as Chronic Ovarian Cancer, meaning she will never be totally rid of it.  Thankfully, her cancer is very responsive to chemo, so that as long as she's willing to undergo treatment, I don't need to think of the alternative.

http://www.aboutcancer.com/

Now, what's interesting for me, is that I was just trying to find a graphic to go with this post, and eventually found this one from About Cancer.

However, when I looked for a UK source, the only images I could find show a much worse prognosis (~5%) which makes it much more amazing that my mum is still alive.

www.cancerresearchuk.org

Obviously, my mum's diagnosis, and the fact I have the BRCA1 mutation, means that cancer, specifically breast and ovarian, are close to my thoughts.  They symptoms of ovarian cancer can be quite subtle, so please make sure you are aware of them (and if you're male, make sure your friends and relatives are aware.  Incidentally, if you're a male BRCA carrier, you have an increased risk of breast cancer and prostate cancer, and can still pass the mutation to any children).  Any concerns, or in any what where your body doesn't appear or feel or react like it usually does, then go to your GP immediately.  It's not worth the risk.

Some more sites where you can get good information and support:
https://ovarian.org.uk/
https://www.targetovariancancer.org.uk/
https://www.cancerresearchuk.org/
http://www.breastcancergenetics.co.uk/

*My mum informed me this morning, that her latest scan says she's currently cancer free!  She has one session of chemo left this week, to complete her course.  Long may it last!

What's the deal with BRCA and Cancer?

Everybody has the BRCA1 gene, and the BRCA2 gene.  The genes are tumour suppressors, whose job is to find tumour/cancer cells and kill them or stop them growing, while other cells kill them.
However, in some people, there is a mutation in that gene, so that they don't do their job properly.  For example, statistically, it takes 6 mutations in a cell for it to become cancerous.  Ideally, when mutations happen within the DNA, the cell self-destructs, or if it gets past that stage, other cells notice and kill them.  So the chance of 6 mutations, that have sneaked past all the checkpoints, to happen in a single cell is fairly low.  However, in people with the BRCA1/2 mutations, there are fewer checkpoints, resulting in certain cancers being more likely.

BRCA stands for BReast CAncer, as that was the first cancer linked with that gene, but it is linked to other cancers too: ovarian, prostate, pancreatic, peritoneal cancer, amongst others. 
To complicate things slightly: not all breast cancers (for example) are a result of the gene - many more are just random cancerous mutations.  But, if you have the gene, you are much more likely to get those specific cancers.
In the normal population, a woman has a 12% lifetime risk of getting breast cancer, and less than 2% lifetime chance of getting ovarian cancer.  In myself, as a BRCA1 mutant, I have (had) a 40% chance of getting ovarian cancer, and have a whopping 85% chance of getting breast cancer.  For comparison, the NHS/BMA (I can't remember who, offhand) considers a "high chance of cancer" to be greater than 1 in 3, or 33%.

I found out I carried the BRCA1 mutation, because I underwent a genetic test, specifically looking for the mutation.  Because the mutation is hereditary, to qualify for the test you need to have either a strong family history of cancer, or have a relative known to have the gene mutation.  In my case, my mum is BRCA1. She was tested because back in 2015, she was diagnosed with Stage 4 Ovarian Cancer, coupled with the fact that her cousin had died of Ovarian Cancer, previously.

Another Stat: Most women diagnosed with ovarian cancer are diagnosed at stages 3 or 4.  Of those diagnosed at stage 4, only 15% survive for 5 years from diagnosis.

Thank God, my mum's cancer responds well to chemo, as it is now over 3.5yrs from diagnosis.  Her cancer has been recategorised as Chronic Cancer, meaning the risk will never fully go away as it is in her blood and in her lymphatic system, but as long as she is willing to go through chemo, she should continue to survive.  Her latest round of chemo started last week.  This is her third recurrence (so 4th time of having cancer), and the chemo treatment is due to last until next Jan/Feb depending on whether they stop over Christmas.

My mum has suffered with IBS and digestion issues for years, and frequently had ovarian cysts that needed to be removed and fibroids.  Every time she went to the doctor, she would be told it was her IBS.  And I do believe she had IBS.  However, Ovarian Cancer also has the same symptoms as IBS.  When she was finally diagnosed, it was Stage 4 meaning it had already spread, and was in the lymph nodes in her neck.  After 4 rounds of chemo, the tumour and shrunk enough in her abdomen to be removed by surgery, and was still 20cm x 10cm n size!  They also performed a full hysterectomy at the same time.

So, my mum was given the option of the genetic test, and was shown to be positive for the mutation in her BRCA1 gene.  As it is hereditary, I had a 50:50 chance of having inherited it, and both myself and my sister have.  Similarly, my children both have a 50:50 chance of having inherited it from me, but as it is not a childhood cancer, they can't be tested until they choose, over the age of 18yo.  Incidentally, my mum inherited the mutation from her father.  BRCA1 also increases the risk of breast cancer in men, and increases their risk of prostate cancer.

So, for me, the choice was obvious: full hysterectomy ASAP.  I have had my children, I never wanted more than two.  Though not totally silent, Ovarian Cancer is dubbed the Silent Cancer because it's symptoms often get mistaken for something else, and there is no reliable test for ovarian cancer.  So, I had my hysterectomy in 2016, and am now on HRT for the next 15-20 years because I am in Surgical Menopause.  I have no periods, no mood swings (at least that I'm aware of), and no menopausal symptoms like hot flushes or night sweats.
Most people with a BRCA mutation, only have BSO (Bilateral Salipingo Oopherectomy - only ovaries and fallopian tubes), rather than full hysterectomy, but I also suffered from heavy and painful periods so had everything removed. (I've just realised that at some point in the past two years, I've forgotten the medical terms for heavy and painful periods.  It's myrrh...something or other, I think. I just can't remember! Found it: Menorrhagia and Dysmenorrhea. Phew!)

My sister, otoh, opted to have a double mastectomy first of all.  She had reconstruction with expanders, and then implants.  I am planning to have PBM too (Prophylactic Bilateral Mastectomy) but in ~4 years time.  The reason for the delay is because I Home Ed my girls, and don't want to take time out from that, and for them having to miss their regular activities.  Additionally, the reconstruction I want to have is a DIEP flap - this basically, means that at the same time as having my breasts removed, I will have fat pouches taken from my stomach (you know I have plenty there!) to reconstruct my breasts from my own tissue.  This greatly reduces the risk of the new breasts being rejects, and puts my slow-grown tummy fat to good use!  But, being a much larger operation than having implants, it has a much longer recovery time.  Hence, why I'm waiting until my children are old and confident enough to use buses etc by themselves, to get themselves to dancing and groups.  That said, if DD2 follows in DD1's footsteps and decides to go to secondary school, then maybe I can get it done a year earlier than planned?  And it's why I'm using the 2B Mindset to help me lose weight, as I need to get my BMI below 30 in order to qualify for DIEP.

One more thought before I stop: I am soooooo thankful for the NHS in the UK.  It seems to get a bad rep, but is absolutely brilliant.  They have saved my mum, and are continuing to save her and return her to health.  They have saved me from ovarian cancer (though technically the risk is not 0%, it's pretty close).  The op I had done, was free at the point of use.  I do have to pay for my prescription of HRT patches but that is a small price to pay.  In comparison, for the op I had (Total Laparoscopic Hysterectomy with 1 night in hospital) would have cost me upwards of $25,000 in the US, so I may have considered not having this life saving treatment.

A bit about Me

I'm going to start with a confession - I'm not middle-aged.  At least, I hope I'm not, as I'm only 36yo.  But, it sounded good being alliterative, between Musings and Mum.  I am a mum to two girls (DD1 and DD2) whom I home educate, and I muse often, having random thoughts, ideas, projects I start and don't complete, and general rants against the government, companies and individual, mainly within my own head.

I read **A LOT** (I currently have 6 books on the go!) and have recently started MosaiCraft, which I love. I tutor Maths, around HEing my girls and driving them to dance/gymnastics lessons - which between them they do 6 days a week. And I'm working towards becoming a 2B Mindset coach/mentor.

I have the BRCA1 gene mutation, so am planning to have a double mastectomy in a few years as I currently have an 85% chance of developing breast cancer. I've already had a total hysterectomy to reduce my chance of getting ovarian cancer (it was previously 40%). I occasionally dream of going back to uni to study Genomics and Oncology when the kids have left home, but that's a few years yet as my youngest has only just turned 8yo.

Oh, and I've recently self-diagnosed (after being prompted by an expert) as autistic, which explains a thing or two in my past.  I'm also a Christian, and a Naturist, so am a collection or random labels, and am trying to be real and honest in these posts.

As for why I've started this blog- DD1 wants to become a vlogger, after watching many hours of Stampylongnose, SB737, and UnspeakableGaming, amongst others.  So, I thought it would be interesting to see what it's like to have a blog that I'll link to a FB page and see whether people actually look at it or not. To make things more difficult for me, I'm not going to show a photo of my face (unless it ridiculously takes off and is calling out for me to make a profit from this page <unlikely>), nor share with friends or family as a starting point for likes/followers. Anyone who finds this page and likes it, have found it randomly. Otherwise, I'm just using it as a sounding board for myself.

Once upon a time I did have a different blog (A Laid Back Parent's Blog) and managed to keep it up for a year, before life took over.  Surprisingly I still have 4 followers from back then (Hello, if that's you!), though for this new adventure I've changed my username from Laid Back Parent to Middle-aged Mum, as it seemed more fitting.

So yeah, that's me in a few paragraphs. I' sure you'll find out more about me in time. If you are reading this, feel free to ask any questions you have - at worst I simply won't answer.