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Actress Charly Clive, Pituitary Adenoma

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Best friends Charly Clive and Ellen Robertson thought carefully about what to call the tumour that was growing in Charly’s brain.

The doctors had their own name for the golf-ball-sized growth sitting right behind Charly’s left eye — a pituitary adenoma — but the friends decided they needed something less scary. They flirted with calling it Terry Wogan (‘as in Pitui-Terry Wogan,’ says Ellen), but that didn’t seem quite right.

So Britney Spears fan Charly, then 23, suggested Britney. Bingo! Not only was she ‘iconic and fabulous’, but Britney was also one of life’s survivors. From then on, they were a threesome — Charly, Ellen and Britney the brain tumour — although Ellen is at pains to point out that this Britney was never a friend.

What a thing to have to deal with, so young. The pair, who met at school in rural Oxfordshire, are now actresses. Charly’s biggest role to date has been in the critically acclaimed 2019 Channel 4 series Pure, while Ellen starred in the Agatha Christie mini-series The Pale Horse.

But this week they appeared together in Britney, a BBC comedy based on the story of Charly’s brain tumour. The TV pilot (and yes, they are hoping for a full series) is an expansion of a sell-out stage show they performed at the Edinburgh Fringe in 2016.

The production is admittedly surreal. Viewers are led inside Charly’s brain and the show includes a scene where Charly dons an inflatable sumo-wrestler suit on the day of her diagnosis. Poetic licence? No, it really happened.

‘My dad’s mate had given him a sumo suit as a silly Christmas present and so, on Doomsday, we took photos of me in it.’

The tone was set for how these friends would deal with the biggest challenge of their lives: they would laugh through it, somehow.

As the women, now 28, point out, what was the alternative?

Charly says: ‘It was that thing of laughing at the monster so you are not scared of it. If you cry when do you stop? It was easier to make light of it.’

Their show is not really about a brain tumour. It’s a celebration of friendship. Ellen pretty much moved in with Charly’s family during this time (‘To be in place when I exploded, so she could pick up the debris,’ says Charly).

The pair live together today, finishing each other’s sentences as we speak on Zoom — and at one point both miming Charly’s brain surgery (with gruesome sound effects).

This sort of silliness rooted their friendship, which started at the age of 14 when they wrote their own plays (Finding Emo, anyone?) while at school together in Abingdon. Charly later moved to New York to study dramatic arts, and Ellen studied at Cambridge.

In 2015, Charly came home for a visit, and went to see her GP (played in the drama by Omid Djalili) about her lack of periods and a blind spot in her peripheral vision. An MRI scan showed a mass on her brain. ‘They said it had eroded the bone in my nose and was pressing on the optic nerve, and it was lucky we had caught it,’ she says. ‘The next step would have been discovering it because I’d gone blind.’

Even worse, the tumour was so close to her carotid artery that removal might kill her — and they still had no idea if it was cancerous. Into the breach stepped Ellen. ‘I saw it as my job to make her laugh, which is what I’d always done anyway,’ she says. They both talk of toppling into limbo, ‘almost like a fantasy world’, says Charly. ‘As I was going through the tests, we’d do impressions of the doctors and create our own scenarios.’

The friends talk about sitting up into the night, watching TV. There is a touching moment when Charly admits she was afraid to sleep, and Ellen knew it. ‘It’s hard when you are thinking “What if the tumour grows another inch in the night and I don’t wake up?” ’

Charly was operated on in March 2016, and Ellen remembers the anaesthetist confiding that Charly’s heart had stopped on the operating table.

‘He wasn’t the most tactful person we’ve ever met. He said “Oh my God, guys, she died”.’ Charly makes a jazz hands gesture. ‘And guess who is alive again?’ Even at that darkest moment, there were flashes of humour. Ellen laughs at the memory of the surgeon in his scrubs, with wellies on. ‘They had blood on them. I was transfixed. I wanted to ask “Is that Charly’s . . . brain blood?” ’

In the stage version of the show, the anaesthetist gets two full scenes. ‘He’s the heartthrob of the piece,’ says Charly. ‘A sexy rugger bloke who is crap at talking to people.’

The days that followed the surgery were hideous — and yet they, too, have been mined for comedy. Charly’s face was bandaged, ‘as if I’d had a Beverly Hills facelift’, and she was warned that she could not sneeze. ‘If I did, bits of my brain would come out my nose,’ she says.

Ellen read her extracts from Harry Potter but ‘made them smutty’, which confused the already confused Charly further. ‘I was drug-addled and not myself, and in the most bizarre pain, concentrated in my face’.

‘That week after the surgery was the worst part of all,’ says Ellen, suddenly serious. ‘She was behaving oddly and there was this unacknowledged fear: was this Charly for ever?’ Oh, the relief when the old Charly eventually re-emerged — albeit a more fragile, often tearful version.

It was Ellen who persuaded Charly to take their stage show about her illness public — and it went on to win much critical acclaim. ‘I wanted Charly to see it as something other than just this rubbish chapter that needed to be forgotten about,’ says Ellen.

For her part, Charly credits her best friend as her saviour: ‘I don’t know how I would have got through it all without Ellen.’

The good news is that Britney was not cancerous, although surgery did not obliterate her entirely. ‘She’s still there, but tiny — just a sludge. I’ve been told that she won’t grow though. If I ever do get another brain tumour, it won’t be Britney.’

Off they go again, imagining what is happening now inside Charly’s brain. ‘Britney is still in there, trying on outfits for a comeback tour, but it won’t happen,’ says Charly. Ellen nods. ‘It’s over,’ she says. ‘But she’s just left a pair of shoes behind.’

Britney is available to watch on BBC Three and BBC iPlayer

Adapted from https://www.dailymail.co.uk/femail/article-10264203/I-laughed-brain-tumour-Id-never-stop-crying-Actress-Charly-Clive.html

Valrie, Pituitary News Item

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HOUR-LONG seizures, vision loss in the right eye, and failure to complete sentences are among the challenges that 54-year-old Valrie Anderson has been battling for the last 20 years.

These problems stem from a condition called pituitary adenoma, which is a growth or tumour on the pituitary gland in the brain.

In an emailed response shared with the Jamaica Observer, Anderson’s doctor at the University Hospital of the West Indies, Peyton Lawrence outlined her diagnosis, which has to be treated at Miami Neuroscience Center, Larkin Community Hospital in Miami, Florida.

“After having carefully reviewed your patient’s medical information, in my opinion, Ms Valrie Anderson is a candidate for gamma knife radiosurgery for the treatment of her pituitary adenoma,” the email stated.

According to her sister, Winnifred Anderson Plummer, Valrie began showing signs of the condition while she attended high school but her health got worse during her 20s.

She said her sister’s seizures would last for two to three hours, though the typical time span is usually seconds or minutes before the brain cells return to normal.

“When the seizures became more frequent was when we discovered, after MRI [magnetic resonance imaging] tests, that she had a tumour on the brain. A surgery was done in 2013 at UHWI but since that time the tumour has regrown; it has caused her to have more violent seizures before the surgery and they last for longer periods. Even the doctors that are seeing her when she has an attack, they too are dumbfounded about the length of time her body takes to settle,” she explained.

Anderson Plummer stressed that the deterioration of her sister’s condition has been painful for her relatives.

“We remember how Valrie was – a go-getter. When she was at the bank she was the best at what she did. She left the bank and went into sales and it was the same thing. She is not the person who would sit down and watch the world go by, she wants to be a part of what is making the world go by — that is just how Valrie was — and to see her now it is just heart-breaking. She can’t even open a can of milk,” her sister stressed.

“Valrie is a praying person and she believes that one day the Lord will take away this from her, and I think that is what helps to sustain her as well. I know there is something special about Valrie why God is preserving her,” she added.

Valrie is scheduled to complete the surgery at a cost of approximately $3 million in August, but her relatives are facing financial difficulties and might not be able to source the funds that soon.

Anyone wishing to help can reach out to Anderson Plummer’s email: view2change@hotmail.com

Golden Oldie: Jeannine, Pituitary Bio

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A “Golden Oldie” from 2008.

Hi everyone. My name is Jeannine and I am an old member of this site. I haven’t been on it since 2003 because I thought my problems were over. Obviously, this is not the case.

I am a 49…soon to be 50. I’ve been married for 29 years and have two sons(26 & 20) and one daughter-in-law. After 3 long years of being told I was crazy and lazy, and searching for answers for my rapid weight gain, fatigue, and lots of other weird symptoms, an adrenal adenoma was accidentally discovered when having a CT scan before my hysterectomy.

After initial testing, I only had very mild elevations in a few tests and negative results in most others. I was told to wait and watch. As the year progressed, I became sicker and heavier. I begged, demanded and finagled tests, still only to be told I just “wasn’t sick enough.” One year and 100 lbs. later, my 24 hr. urines were finally high enough to convince the dr. to do surgery.

My test results were never very clear and I was never given a diagnosis, even after surgery. The weird part about my test results were that I tested positive for a pheochromocytoma as well as for a cortical adenoma. I had my left adrenal gland removed in April of 2003. It was not a pheo and the pathology listed “adrenal cortical adenoma”.

I never had to have any hormone replacement, and aside from not losing the weight and becoming insulin resistant, I was cured. I couldn’t lose the weight on my own, so I joined Optifast, the medical liquid diet program. Over the course of about 6 months, I lost 60 lbs.

Unfortunately, as I started to re-enter normal eating patterns, the weight began to return. There was a steady weight gain almost every week for the past 12 months. I have now gained 50 lbs back. Aside from gaining weight, A few months ago, I started to feel badly again. I immediately had my endo send me for 24 hr. urines and basic blood work, but everything was negative.

Then, a few weeks ago, I went to a new opthamologist to have my eyes examined. I mentioned to him that I sometimes got weird visual symptoms with blurry lines in my eyes. I had first noticed them a few months after my adrenal surgery four years before and they had continued to occur sporatically ever since. I had my eyes examined twice during these last 4 years and nothing was ever shown to be wrong. The new dr. suspected occular migraines, but because of my history with the adrenal tumor, he decided to do a cranial MRI. Lo and behold, I was just diagnosed with a 3-4mm pituitary tumor. So…..here I am, back on the boards looking for answers. I have an appt. in three weeks to see my endocrinologist and the testing will begin.

While I really don’t want to be here, it’s nice to be able to come “home.”

 

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Susan W, Pituitary Bio

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A Golden Oldie

After 2.5 yrs of testing, I was diagnosed with Cushing’s (which was un-diagnosed for over 20 yrs).  My Pituitary Tumor was removed on 10/20/11.

My surgeon has recommended Radiation/Gamma Knife treatment which will be discussed at my post srgery checkup 1/10/12.  I also have noduals on both my adrenals.

Other symptoms:  obesity, diabetes, high blood pressure, high cholesterol, muscle weakness, sleep apnea, fatigue and depression.


Susan submitted a second version of her bio.

My testing -> diagnosis -> surgery journey took 2.5 years.  I have always had a weight problem.  All my Doctors ever asked if I was interested in a liquid diet, liposuction, gastro bypass or go to Weight Watchers, and eat less.  But when I reached 375 lbs I knew something had to be done.  Things were way out of control.  I could no longer handle this by myself, I needed HELP.

I had seen comercials on TV which talked about excess Cortisol leading to excess belly fat .   So, I asked my Primary Care Doctor if she could test my Cortisol level.  She just laughed and said I would have to go to an Endocrinologist (Endo).  She did not even provide a referral.  Through my insurance company I found an Endo.  On 7/3/09,  my first appointment with the Endo, she agreed to test me but felt I just had a fatty liver.

When the test results came back, they showing excess Cortisol.  This started a series of saliva, blood test, 24 hr urine, MRI, and CAT Scan tests.  Then I was referred to another Endo Dr Findling in WI (I live in IL) for another opinion and the IPSS test..  (Dr Findling said I looked like I had Cushings for over 10 yrs.)  This was followed by Ostrascam and PET Scan.  Armed with the diagnosis of Cushing’s Disease we were off to get a surgeon.  The first doctor I seen in IL was a bust.  Then I was referred to Dr Oldfield in VA, who performed my surgery on 10/20/11.

Now in recovery, I still get weak, tired and sleep a lot.  I have been using a walker and cane to get around.  Interesting to see that other Cushings also have problems with mobility, aches and pains.  I hope this gets better.  I have follow-up appointment 12/21/11 and 1/11/12 with the Endo and surgeon.  I am off my High Blood Pressure and 2 of the 3 Diabetes meds.  I have lost 30 lbs in the 7 wks since surgery.   I can;t wait, 1 more wk before I can start swimming again.

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Voices from the Past: Alex, Pituitary Bio

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After long and tiring process was diagnosed with Cushing disease in June 2011.

Had a surgery to remove pituitary tumor in July 2011.

Remained on the cortizol for 18 months.

If you live in New York metropolitan area and have a pituitary tumor and would like to ask some questions or need suggestions, please email me.

I have seen the worst of this disease, but was able to make it through. I was lucky to have right doctors (neuroendocrenologist and surgeon).

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Voices from the Past: Sarah (sopdiva), Pituitary Bio

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Hello, My name is Sarah. I am currently researching and undergoing test related to Cushing’s. I am turning 30 this year and have decided I have ignored my body long enough.

I was diagnosed with 2 pituitary tumors at the age of 15. At that time I was having horrible headaches, neasea on a regular bases, balance issues, gained 80 pounds in 4 months, and some crazy stretch marks.

The last time I saw a doctor for the issue was when I was 18 because they could not figure out how to treat me. Since then I have gained 240 lbs., have hypothyroidism, have had 6 carpel tunnel surgeries, and have issues with blood sugar levels. I am a large woman but do not eat like one…. I swear. My husband and I are doing a diet diary to take to the pituitary center with us. Sounds crazy I know, all I have ever heard is that I control my weight , so stop eating.

I saw a TV special about Cushing’s and my husband and I both agree that is me. The woman that they featured , my body is shaped just like hers. I hope that I can find a dr. that will listen to me.

Pituitary Tumor, Helping Others Comes First

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He said she needed to start focusing on looking after herself a bit more in her long journey with tumours of the pituitary gland.

“I have a tendency to do too much for other people,” Mrs Dines said.

“It’s just me. It’s in me, it’s what I do.”

The altruistic devotion is central to her being nominated in the community spirit category in the 2013 Pride of Australia awards.

“There is no end to the depth of Kellie’s passion for people in need,” her testimony said.

“She inspires everybody she comes into contact with to be the very best they can be.”

Pituitary and pineal glands

Pituitary and pineal glands (Photo credit: Wikipedia)

Mrs Dines, 40, is the wife of Brad, mother of Carter, 10, and Hunter, 5, and has lived at Teesdale for two years after having spent her formative years growing up at Wallington and attending Geelong’s Matthew Flinders College. She spent 17 “hideous” years battling mystery ill health and receiving all sorts of diagnoses before the discovery of a non hormone-secreting tumour surrounding her pituitary gland, at the base of her brain.

The pituitary gland secretes hormones that influence the workings of many other glands.

She has twice undergone delicate surgery attempting to remove the tumour and now it is growing around her carotid artery.

Mrs Dines’ community devotions have ranged from volunteering at three consecutive Australian International Airshows to inspiring a Black Saturday bushfires appeal that generated two truckloads of food and goods for fire victims, and volunteering as state co-ordinator for the Australian Pituitary Foundation.

After having shifted to Teesdale, she started co-ordinating money-raising efforts for the community’s pre-school and primary school and ran money-raising events for a local single mum contending with breast cancer and a family that lost a child.

She said nomination in the Pride of Australia awards was humbling. “But it’s not why I do things,” she said.

Nominations in 10 Pride of Australia award categories close on Tuesday.

From http://www.geelongadvertiser.com.au/article/2013/07/12/369100_news.html

Becky (Becky), Pituitary Bio

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Hi I’m Becky a 34 year old wife, mother of twins and teacher.

I’m having surgery to remove a pituitary tumor this week and am told it will really help to alleviate the Cushings symptoms I’ve had for years!!  I wish I had had this diagnosis sooner but I know I’m lucky to have it now as I had planned on bariatric surgery as my last hope.

The opening in a GE Signa MRI machine

The opening in a GE Signa MRI machine (Photo credit: Wikipedia)

When the headaches became too much to handle and my face went numb I was given an MRI and now I know the truth.

I’m new to this, scared yet hopeful.  I’m determined to get control over this but still, this is hard for me.

Peggy (concerned for spouse), Pituitary and Adrenal Bio

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I’m married to my best friend who’s health has steadily declined for around 15 years.  High Blood Pressure, Diabetes, weigt gain, mood change are part of the decline.

He had a pituitary tumor removed in May 2012 after a diagnosis of Cushings.  We know that he still has an adrenal tumor that the endocrinologist thinks was fed by the pituitary tumor.

My husband, my best friend, thinks they have ruined him forever.  He feels worse than ever before.  The doctors say it may take up to a year, that this has been coming on for a long time.  His blood pressure is now controlled and he has gone from 12 blood pressure pills a day down to 2 1/2 pills per day.  Other that that, he has a poor quality of life with no energy, no happiness.

I wish I knew more and could help and support him better.  I am the fixer in our life, our family, our business that we have worked in together for 10 years and I’m so sad for him.

Kathryn (Kathryn), Pituitary Bio

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Originally posted February 7, 2008

Hello,
My name is Kathryn and I am new to the site. I know it sounds silly but I feel a bit shy and embarrased about introducing myself. This is probably because I have spent so much time over the last eight years being very upset in social situations due to my appearance and inability to think clearly. Cushings has ruined a lot of my life and left me quite worried about the future, but I am trying to come to terms with it.

On the bright side I have been very lucky to have very uncomplicated surgery for removal of my pituitary adenome. I am on replacement of cortisol, thyroxine and soon to be on growth hormone. With a bit of luck I will soon be feeling better.

Unfortunately the excess cortisol has been masking severe osteoarthritis and so I will soon be going for a hip replacement.

 

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