Not a good feeling

Today I feel very stressed.

I know the signs. My heart beats faster and pains appear around my heart. I can hear my heartbeat inside my ears. I need to make sure this doesn’t continue as it’s certainly not a good recipe for managing my Addison’s disease.

Why is life so complex?

πŸ™

A deep sigh…say something

Yesterday I re-read my blog which has been going since 2015. In fact I hadn’t realised it had been that long! Oh I was so angry! I was in such a fearful, angry space with my Pituitary tumour. That ‘Bean’ inside my head. For the first time in a long while I spoke about the damage, the carnage it caused in my sinus structure and eyesight, especially my right eye. I recall being so anxious when the DVLA requested a full eyesight check to be done. That check is far superior to the standard eye test. I remember walking past the usual room in the Eye testing store towards what can only be described as a 21st Century eye test centre of the future. You can’t blame the DVLA as they need to ensure that it is indeed safe for you to resume driving. Thankfully I passed the test and kept my licence.

Today, after my monthly injection for Nets metastasis in the liver I suddenly felt overwhelmed. I don’t know why as it wasn’t my first injection. It was probably the fact that I had TWO injections in each rear high cheek-side that disoriented me! πŸ˜‚ The other injection was Vitamin D. The important role of this vitamin is vast, one that should never be underestimated. I recall my Vit D being very low as far back as 2012/13? I read up on it and recall reading that you could be susceptible to cancer. I didn’t worry about cancer but I took the high dose Vit D for 8 weeks which made such a difference! Meanwhile during this period I was in and out of A&E with horrific abdominal pains, my blood tests kept revealing 2 things- low potassium (despite me being a fan of eating bananas regularly) and my inflammation marker being raised in the blood. Again, reading up on it there was mention of cancer but I never put that at the forefront of my mind. After all, I didn’t look ‘sick’ and the doctors were not overly concerned but on quite a few occasions they admitted me overnight to do further tests. I remember being so frustrated, like an absolute fraud, yet they could see evidence of pain and inflammation via my blood pressure and blood tests but not the reason why. I also had pain around my heart that saw me being monitored by the Cardiac team. Being fair to the hospital the pain was always attributed to another possible Pulmonary Embolism. As long as this marker was normal they didn’t worry too much and neither did I. The strangest thing is that despite not worrying about cancer ‘something’ always niggled away at the back of my mind as over the years I had been experiencing some very odd symptoms. Hindsight is so wonderful isn’t it?☺️

Now we know it was indeed cancer, Neuroendocrine Cancer. Unfortunately I have a strong maternal link to cancer and I always ensured that I provided this information to the doctors. Again, they were not overly worried about this despite my grandad having Stomach Cancer and my granma having Ovarian Cancer years before.

One of the symptoms was large lymph nodes constantly being swollen, particularly under the right arm. When I observed it in the mirror and compared it to my left side, it always seemed to be fighting ‘something’. At times it was painful. I don’t know if this is coincidental but most of the Cancer was found to be on the right side of my body – the metastasis to my liver, mesentary and lymph node together with a regional lymph node. Perhaps this is just the order of things as to how each organ is affected. As for the small bowel the cancer was peppered along just over a metre’s worth, too many tumours to count the surgeon said. This possibly explains why my pain would not respond to painkillers, not even morphine in A&E! They usually had to give me an intravenous cocktail of strong meds to calm it down otherwise I was a patient on the floor or walls screaming for help. I actually recall thinking on more one occasion that I was going to die. It was the weirdest feeling but it felt like no other experience- I actually felt as if I wouldn’t make it. What a horrible time, my poor children πŸ€¦πŸ½β€β™€οΈ

Thankfully these days my pain is much less but when I get niggly pains out of the blue I no longer push them to the back of my head- I say something! I no longer leave things to chance…

☺️

Swimming and Cancer Fatigue

Ah yes, the wonderful world of πŸ’¦

Today I enjoyed the relaxation that swimming can bring. My mind was at ease and my body followed suit.

This week I am awaiting for my blood test results to see if the fatigue is due to malabsorption in the bowel (it happens frequently following Small Bowel Resection) or the other usual culprit – the Cancer and/or the treatment OR my Pituitary but I doubt it after being settled on Steroids for nearly 3 years. You just can’t win!

Well, aside from a poolside bellyflop when being pulled from the water (long story) swimming was lovely lol! πŸ˜‚

Fast Forward…The Bean Returns!

I can’t believe it has been one year since the ‘bean’ was removed from my head -what a journey it has been!

At times I have struggled with my thoughts as to whether I should share this personal journey with everyone but after looking at the increasing rates of brain tumours being diagnosed I decided to share, slowly! If my symptoms can help another person seek help before too much damage occurs, it can only be positive. Keeping quiet helps nobody…

So in the last year what have I learned? So much! Before my own journey I had no idea that Brain Tumours are the biggest killer of adults under 40 and children, I simply had no awareness and let’s be fair, not many of us do. Part way through my recovery I had the pleasure of getting to know the lovely Anna Swabey who had a terminal brain tumour. She was so full of life and positive energy that I could not help but join that force!! She had an infectious zest for life. Sadly we lost her in September 2016 and I know I really felt it. Until this point I had no idea how much I had grown to adore Anna. We had NEVER physically met, our exchange was purely through social media both on her public and personal accounts. She introduced me to the Brain Tumour Research Campaign and the rest is history. However. I only became privileged to know Anna because of my mum. During my recovery I stayed with my parents. Mum read her usual Sunday magazine and one Sunday night in March she said ‘read this, it’s really interesting,’ that’s how I came to know Anna ☺️ We had two very different tumours with very different outcomes but our goal was the same, to live and to raise awareness of these horrible tumours. How can this illness only attract just 1% of the national spend on cancer despite being the biggest cause for loss of life where cancers are concerned? Anyway the BTRC and MPs are busy lobbying for this to change. When you are diagnosed (which is a huge frightening shock) you want all the answers- how,why,could I have? Sadly there is little point in asking as the Neuro/Oncologists do not know the answer to these questions in 2017 due to funding…What they can do is to try and save your life and/or decrease the damage by removal, if this is an option. It is a daunting place to be as the word ‘benign’ clouds the judgement of the fact that having the tumour is still very serious. My tumour was approximately 4 x 3cm in size, a small lime, yet it caused so much damage! Had I not reported ongoing symptoms I could have lost my sight permanently. My optic nerve was stretched tightly over the growing tumour and one day would have snapped causing instant blindness. I am a driver so the thought doesn’t bare thinking about! So what were my symptoms and for how long?

Persistent frontal headaches that would not respond to any painkiller, no matter how strong in strength. Only rest with an ice pack on my forehead seemed to work. I recall being in so much pain that I rang the NHS direct number for advice as it was pointless going to AnE. It was a nurse who suggested the ice pack, thank goodness for her!! This became my saviour for the next 2 years.

My vision changed quite suddenly which was checked and my glass lenses renewed but it changed again quite shortly after but nothing was picked up during the eye tests.

A strange black fluid was increasingly present in my nasal mucus with an odd smell.

I started to smell ‘smoke’ which noone else could smell.

There was often a ‘misty’ atmosphere which again, noone else could see.

I would sometimes forget the words I needed to complete a sentence but this only happened when I was tired at the end of the day.

Towards the latter end of pre-diagnosis my walking/balance felt weird. I was often tripping, taking too large a stride and sometimes felt as if I was leaning to one side and would fall whilst walking!

I kept bumping into door frames, completely missing the angle of the entrance despite knowing the layout.

Three years ago I decided to regrow my hair after wearing a short hair style for 8 years. To my horror I noticed that my hair was growing but also balding. It then started to fall out at an alarming rate. Each time I washed, combed or slept I would wake up to hair all over the place. The most disressing was hair washing sessions. God bless my mum as she became my hair washing support buddy after each hair washing session. She listened to my frightened concerns and heard me cry on so many occasions.At this point I was referred to several dermatologists before finally seeing a lovely lady at the hospital. Here I was biopsied and told I had a permanent type of alopecia. Devastating! I used all the steroids/shampoos provided but it only slowed the hair loss, it didn’t stop it. But again, when I first approached the GP I was met with ‘oh well, it’s your age etc etc etc and sarcasm that left me in tears. People have NO idea exactly how devastating hair loss can be, especially in females.

Started to feel faint sitting down which would be intermittent.

Facial, body twitches and body tremors started a few years ago and increased significantly.

Now you will say, so what did you do about all of these symptoms? I visited my GP no less than 20 times over 8 years. I knew something was not right but I had no idea what it could be. All of the symptoms were always attributed to a condition of some kind of which I never really had any of them- all false diagnoses! I requested scans which were declined and told to keep a headache diary as they felt my migraines had ‘changed pattern’…the body twitches was put down as ‘Essential Tremor’ and this was diagnosed by a private consultant… not one medic looked at my symptoms as one person. If I tried to encourage them to do this I was met with resistance ‘I’m the doctor’ syndrome but not in so many words. It got to the stage where after one of my GP appointments I returned home so upset and told my kids that I wasn’t going back no matter what happened- I no longer cared. They were just so dismissive and made you feel like a hypochondriac. Thinking back the GP was not the only person guilty of this.

Fast forward to a GP that joined the practice with an enquiring mind. She listened to my symptoms about the nasal discharge and decided after reviewing my notes that there was no point in guessing, she would send me for a CT scan to see if there was a sinus infection. The results of this took 5 weeks which was odd so I rang the ENT clinic who placed me on hold for 15 minutes. It was a strange conversation but the bottom line was, she knew more than I did but could not divulge. Still, I was not alarmed. A few days later I received a letter from the GP to ring and make an appointment but this time the letter did not say THIS IS NOT AN EMERGENCY. Still, Β I was not alarmed so I did. Fast foward a few hours and I’m in the middle of a car showroom in Essex when the lovely GP rings and she’s stuttering. She’s asking me all sorts of weird questions ‘have you been bumping into things, how is your eyesight, headaches?’ I stopped her and said where are these questions coming from? She replied that a large mass had been found in my head during the CT scan for my sinus!!! I thought I was going to be physically sick, the showroom was spinning and the tears flowed instantly. I looked across at my youngest son happily chit chatting with the car salesman and all I saw was my mortality right in front of me. The feeling was further compounded as I had lost my beloved uncle 2 months before to a malignant brain tumour so you can understand why my feelings were intensified.

Fast forward 2 months- MRIs, blood tests and surgery lined up for 23rd February 2016. The Neurology, ENT and Endocrine team were all amazing. I spent 5 days in hospital and was looked after really well. My immediate recovery took quite a while as I experienced several fallouts of tumour surgery. Whilst the surgery was successful the pituitary gland was damaged and had started to fail by May. This caused another issue which was very serious. The loss of 2 hormones, one in particular ACTH meant that I could no longer produce Cortisol which basically keeps us all alive. I am now on life long therapy to replace this hormone and have a rare condition known as Addison’s disease. Without this therapy you will not live and should you have a major shock, accident or become sick you have to be injected with emergency hydrocortisone and be admitted to hospital. I had not bargained for any of this but I am still eternally grateful for life.

I had good news in August, the tumour was completely removed and was biopsied as benign! πŸŽ‰πŸ‘πŸ½πŸ‘πŸ½πŸ™πŸΎ Every August I will have an MRI of the brain to ensure the tumour does not return. If it does, the Neurosurgeon advised we would be one step ahead so no invasive surgery but Radiotherapy instead to zapp the bugger into oblivion!

Today I am extremely thankful to God, my family and friends. Not everyone understood or made an appearance but that’s life, I have no time or energy for grudges. Life goes on when you are fortunate to be here.

I have before and after MRI images of that ‘bean’ in my head. These images will always remind me not to take life or people for granted. My outlook on life HAS changed although it may not be physically evident, in my thoughts I think about everything in a different way pre -tumour.

Lots more to share in between life and my studies which I complete in the summer ☺️

A huge loving thankyou to my cousin who nicknamed me ‘beanhead'(read the beginning of my blogπŸ˜‚πŸ˜‚) she stayed with me in mind, body and soul no matter what day or time of night it was.She is a true soldier of strength to me and for that I am eternally grateful ‘Mother Mouse’ β˜ΊοΈπŸ˜˜πŸ™πŸΎβ€οΈ

Wear a hat day – Friday 31st March 2017 in aid of the Brain Tumour Research Campaign. I am looking after merchandise that you can donate money for. Get in touch if you would like a pen, pin badge or car hat for the car grill! πŸŽ©πŸ‘’

https://www.braintumourresearch.org/wearahatday

‘Mary Mary quite contrary how is your anniversary?’

image

Lol! I told you I was contrary!! My mum and lil sis are always laughing at this trait! πŸ˜±πŸ˜‚πŸ˜‚πŸ˜‚Oh speaking of lil sis she told me off for not sharing details of where I would be staying for a short break!! πŸ˜‚ When I sent her the info what was that feisty brutes reply? ‘That’s better!’ LOL!!! I tell ya that one is an ‘anomaly!’ πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚ oh my baby sis πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚ fresh and cheeky as always!

It’s strange how you never forget the day/time/moment when your whole life changes forever-you never do. This time last year by midday I was in floods of tears that I tried to conceal from my youngest child all the way in Essex in the middle of him securing his first car. You see the stuffing was knocked right out of me, right there in the middle of the car showroom by midday when my GP called me. Right there in that moment I felt as Β if I was in the ‘Twilight Zone’ with a bright spotlight shining down on me. Β My knees became jelly and my feet felt like they were being pulled down by Β quicksand. As James Bay’s beautiful track ‘Let it Go’ oozed from the car showroom music speakers, as my world unfolded – I cried silently on the phone with my GP asking me what felt like lots of ‘too late’ questions. ‘How has your vision been, do you bump into things, do you have headaches’- all of the same flipping symptoms I’ve been reporting, back and forth to the doctor surgery for over 8 years with them sending me away with ‘there-there fix it sweets!’ With the phone pinned to my ear I turned slowly to look at my child who was so excited about their new car, so so excited just like me moments before. It had brought back so many happy memories of my dad and beloved uncle accompanying me to buy my first car that we named ‘Betsy’ in 1989 in London. The bloody car that never started when you washed her lol πŸ˜‚πŸ˜‚ I remember being so excited, my dad was sooo excited that my uncle had to keep him in check- as usual!! Lol oh those two were like Bim and bloody Bam! God I miss my uncle so so much πŸ˜”πŸ˜”πŸ™πŸΎAs my own experience flashed through my mind the reality of hearing the words ‘we found a mass inside your head on the CT scan’ and it wasn’t the clumpy grey matter they call my brain! At that time, that moment my world changed forever. You see I’d been through several changes in my life, some good, mostly good but some I would define as being rough. I refuse to call them bad. I was used to change and quite adaptable but this felt different. The journey I was about to embark on was not a path that was in anyway familar. I thought I knew what fear was until I met ‘Mr of Mrs Fear aka the Bitch-Bastard.’ I was about to find out what a battle with fear was really all about. Every day I had highs and lows, every day I never knew if I would wake up with the dreaded fear in my stomach. It was and still can be an incredibly lonely and scary journey but you learn to cope. Somehow you dig down deep and you cope- you have to, you have no other option – cope or be destroyed and I knew crumbling was NOT going to be an option. It feels like yesterday that my whole world changed, like yesterday…

Today, 8 months Post Op, I am still walking the path of the unknown. Every test, every medical visit attaches a heightened level of anxiety that is hard to shake off but I pray to guide me through. I also found a strange attachment to ‘Birds of a Feather’ and a continuing love for the James Bay track. It is weird how the the mind works.

I won’t say anymore right now but I think I’ll nickname myself ‘Teflon Mary!’

Today is no different from this time last year, believe me it isn’t but I’ve found a coping mechanism in writing this blog of which I decided to share with a select group of people about a month ago. Β At first I had one devoted reader – my cousin 😍 The one whom I mentioned at the beginning of my blog and Β I so aptly nicknamed myself ‘Beanhead Cousin’ for all those years ago, how ironic. Day after day, week after week, month after month she diligently read my blog, never questioning, never probing- I must thank her publicly on here for being my number one fan, I love you cuz, thank you for your unwavering support, it means a lot to me. πŸ˜πŸ˜πŸ˜πŸ™πŸΎ

As I lay in this bed my mind is wandering, my stomach rolls with an underlying fear but this time ‘Teflon Mary’ knows how to kick the crap out of ‘Mr or Mrs Fear aka the Bitch-Bastard, this time she is like Arnie ‘I’ll beeeeee bacccccckkkkkkkk πŸ‘πŸ½πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚

Peace πŸ™πŸΎ

 

 

 

 

 

 

‘The world needs love, love sweet love’

This is the first time I have experienced catching the lergies since the tumour was removed. It feels like the typical symptoms are amplified! My bones REALLY hurt but paracetamol sorts this out!

Have you ever been tired of being tired?? Well this is how I feel tonight but putting my best foot forward tomorrow I will place a positive spin on how I feel. It’s been a long day and extreme fatigue is plaguing me.

G’night. Sweet dreams

πŸ˜πŸ’žπŸ™πŸΎ

 

‘All my love, a thousand kisses for you’

They say you are never too old to learn and it’s true! As explained yesterday Anna Swaby was a huge inspiration to me in the last 6 months. Two days ago I had the privilege to come into contact with another inspiring person. This is no coincidence- this was destined to happen! With this happening my positivity continues to remain ignited. I am truly in awe of how others face serious challenges but yet they persevere and embrace the challenge. The human body and mind are wonderful constructions of nature! πŸ™‚

It’s official, I’ve gone and caught my first head cold since the tumour was removed. It’s very uncomfortable, different than before. Although my head feels like exploding and my blocked nasal passages behind a ‘vacuum’ I just have to get on with it, pop a few paracetamols and soldier on. I will feel much better after some sleep. πŸ‘πŸ½

I had to spend some time explaining the last 6 months to a health professional today – it was tiring, boring and left me feeling drained. It makes me realise how I crave wanting to ‘feel’ like my old self. I’m not sure when it will return or if it will return but whatever happens, life goes on and I am still me…

πŸ™πŸΎπŸ’žπŸ™‚

 

 

 

‘Oh what a night!’

Tiring day! As mentioned yesterday no two days, hours, minutes are the same with Addisons. The fatigue is UNREAL!!

On a positive note, I am alive, I have food, shelter and water…

Still waiting for feedback on test results. Although the health Β system is designed to take away our fears, it actually heightens it but not intentionally. When you have to continuously chase for answers your anxiety grows. They say no news is good news but I will blow that one right off my page! This time last year I had my first Nasal CT scan. I didn’t hear from the hospital and decided to follow up nearly 5 weeks later. Unknown to me, they were doing their analysis with specialists in preparation for consultation. One week after that I received a letter to ring and make an appointment with my GP. That day I received the phone call I will never forget. Lesson learned, the GP practice should never have let me book a telephone consultation to hear they found a large mass in my head! I should have been asked to visit instead. What started as what I believed to be the beginning of ‘oh the scan was clear, just a bit of an infection’ actually began with ‘it seems they found some kind of a mass, how is your balance, do you bump into things, how have the headaches been?’ From this point on my knees turned to jelly and I thought I was under water. It really wasn’t a good idea to be told on the telephone as I was in the middle of a car showroom all the way in Essex. Not a good idea at all.

One day I will fill the gaps of what ‘Mr or Mrs Fear’ or ‘Bitch/Bastard’ as I named it, really did to me! I’ve played my feelings down for too long, this has been found to be more damaging. I should be able to vent how I feel not surpress it. To hell with that! We all know after a good outpouring or a good cry we usually feel much better. Worst of all nobody can tell you how to feel or be, only you can be the master of that. However, at the right time, a positive voice can work wonders. πŸ™‚

This is the weirdest chapter of my life, I plan and I move forward but I make mental plans with uncertainty tainted around the edges. Still, it’s far better to keep making plans and working towards a goal, even if the route has to change πŸ‘πŸ½

Addisons, you will NOT win! Ask your mates ‘Mr or Mrs Fear’ or ‘Bitch-Bastard’ they’ll tell you how I play! πŸ˜‚πŸ˜‚πŸ‘πŸ½

It’s on!

😍