The Side No One Sees 💔

Firstly, I know it has been some time since I have written a blog post regarding my Cancer journey, but I felt now was the right time, so much has happened in such a short space of time, this will focus mainly on my mental health how I've always been so strong, when you can only be so strong for so long. But we will start from another big change in my life...  💔  If you're reading this means I finally plucked the courage to post it, so here we go.. !

The hospital stay.🏥

In June 2021 my world was again flipped upside down, and ever since has been a real struggle.
It started with headaches that would make me very faint, I could barely look at my phone screen, Then i noticed what i thought was my "chemo rash" on my face, normally this wouldn't bother me but I was getting married in a MONTH! 
So I was super annoyed that this was starting, I assumed my headaches and rash was all stress related, wedding is coming up, final plans in place so little time remaining, anxiety kicking in full swing. The rash got progressively worse.. Then Wednesday the 2nd of June my head was so bad, I hadn't slept in 3 days, I was at my wits end, I decided to take one of my sleeping pills (which is prescribed for my insomnia and I only take when I go days no sleep) normally these make me go to sleep after an hour or so, and I get a good few hours sleep, this night was not the case, they did not work and my head was so bad, I was stood by the window to get air, I felt so faint, more pain meds taken just hoping the pain would at least ease even just for a little while 🤞 fast forward to Thursday 3rd of June, the day spent with the room spinning, head pounding, skin itching, it was time to check the temperature... the dreaded number 37.8 showed on the thermometer (When on chemotherapy the cancer doctor says anything below 35.5 or above 37.5 needs to be seen to ASAP) I talked myself out of it "I'll wait till Ash is home, it'll be okay" Ash got home and said my face and ear was swollen and very red (where the rash was) My body started to go really limp, he phoned the chemotherapy emergency hotline who said they'd be sending an ambulance out, Ash said it would be faster he will get me there now, where the women said they will be expecting me..

The start of the hospital stay is a blur really, I remember them keeping trying to cannulate me to IV in straight away, going for head scans, and then having a physical exam where I just couldn't focus, I was now at the point I could not lift my own body, I was in and out of conscious and I was alone. I got put onto a bay all on my own while the side room was fully cleaned down for me to go in, then I was put onto the ward with my own room (ironically the same room I was in the year before with Sepsis) the doctor came in Friday morning and said that I'm on different antibiotics, steroids and  treating me for viral meningitis and an brain infection.. viral encephalitis (Viral encephalitis is an inflammation of the brain caused by a virus) he then said he wants to do an emergency lumber puncher.. Next in comes the doctor and nurse to do said lumber puncher. The lumber puncher took over an hour as my CF fluid pressure was at 36, a normal pressure in the brain is between 2-18, and 25 is considered high, they struggled to relieve pressure as every time they released pressure it would then read just as high, anyway an hour later they closed me at 26 (still very high) but they were concerned if they went any lower as discussed with neurology at Preston hospital. 

After all this the doctor was still concerned why I was so unsteady, and couldn't hold myself up. They sent me down to Ophthalmology to have eye tests done to see if any permanent damage to my eyes from the swelling, unfortunately down there I passed out, The doctor then knew there was something else wrong!
He decided to do a cortisol test (A cortisol test measures the level of cortisol in your blood, urine, or saliva. Blood tests are the most common way of measuring cortisol. If your cortisol levels are too high or too low, it may mean you have a disorder of your adrenal glands.) this came back 'Dangerously low' and he was unsure how I was even managing to actually stand up at all. So he then gave me a injection that was to trigger a response from my adrenal glands to produce cortisol.. They took blood 1 hour after injection, then half an hour later and another half an hour from this. BUT instead of my cortisol rising it actually dropped even lower... He took one last bloods he told me "This will be the last, I need to send this off now to tell me what I know now, If this comes back positive then we'll have our answer, hold tight Leanne"

The news.. 

So this was all over a few days (8), with some horrendous nights, one being them trying to cannulate me over 12 times, going in all different places including my feet and requested a pic line to be fitted needed IV antibiotics in my system to stop the infection and to stop me contracting sepsis (they was covering all bases) luckily a doctor managed to get one in, I think at this point is was the 16th attempt (and the last so thank god!)  

Anyway the Doctor enters the room with another lady, and I've seen this look before, I know it means bad news.. He sat down, told me he was gonna get to the bottom of this and he has, He said "unfortunately the blood test has come back POSITIVE.." My head is all over at this point, to many things have happened I'm not sure what is going on, or how I'm meant to feel or what to expect. He then started with that I have been Diagnosed with Idiopathic Intracranial Hypertension (Idiopathic intracranial hypertension (IIH) is a disorder related to high pressure in the brain. It causes signs and symptoms of a brain tumor. It is also sometimes called pseudotumor cerebri or benign intracranial hypertension. The fluid that surrounds the spinal cord and brain is called cerebrospinal fluid or CSF) so that explains my brain, and unfortunately since this my head has filled up again, where I had another hospital stay, another lumber puncher over 2 hours with 13 releases of fluid (but this will keep happening, I just hope not regularly 😥) so that's one... He then Diagnosed me with Addison's Disease 💔 (Addison’s disease is a rare but serious adrenal gland disorder in which the body can't produce enough of two critical hormones, cortisol and aldosterone. Patients with Addison's will need hormone replacement therapy for life.) He told me id be steroid dependant and that my life was going to be a lot different, gave me leaflets then explained an adrenal crisis to me and the emergency injection kit i need with me 24/7 that will save my life in a crisis, Unfortunately it wasn't long .. fast forward to July the 18th I was sick from my chemo tablets and ended up having my first ADRENAL CRISIS  ( adrenal crisis is a life-threatening state caused by insufficient levels of cortisol, which is a hormone produced and released by the adrenal gland.) on my friends bathroom, hands down one of the most scariest moments of my life. 

Adapting to these two new diagnosis on top of my Cancer and my treatment has been so hard on me and my family, the physical and emotional changes and impacts its had on me, that they have had to witness, the more frequent hospital stays and being told my body 'Isn't coping well' is all so scary, and being on 13 tablets a day it gets tiring... SO now we have the brief (as possible) background above, let me move on to the part I have been wanting to share for so long, but haven't, If you've gotten this far thank you for baring with me, and i hope this next part show you an inside of Leanne I haven't been able to share.. 

Mental Health, The Hidden Leanne.

Okay, here is goes.. I started counselling November 2020, lockdown had took a toll on me, Then I found out that my body was rejecting the Chemotherapy drugs I was on, My body was getting 'used' to them, so they were no longer keeping my cancer cells down and the Leukaemia cells had started to rise in numbers, I broke down this was 3 weeks before my birthday, I had planned a whole day with friends out for drinks, but Boris has other plans, and 3 days before decided to lock us back up 👍🏼 Anyway, my cancer doctor knew I was struggling mentally and we spoke about Anti-depressants.. I refused these, I didn't want to take any more medication that the chemo (this was all before the new diagnosis)  he then said he would like to send me to a phycologist, I had counselling at the start of my cancer journey but I self discharged as I felt really okay and strong. anyway it was time so I agreed to give it ago (I wont name the phycologist but for blog purpose I will call her Lynn) First couple of sessions with Lynn, I was reserved, brave faced Leanne. Told her I'm strong and its just a blip I was having, and that I can handle it fine.. But Lynn stuck with me, she knew I was NOT OK, eventually she peeled back layer by layer and I would open up more and more, I started to feel much better, I had stuff to look forward to, I really felt I was coming to the end, we got to May 2021, and we decided one last session after this and I can be DISCHAREGD, This was amazing news!  SO me and Lynn both agreed we would have our last appointment at the end of July 2021 so she could hear all about the wedding that we had spoken about in sessions, perfect way to end therapy! 

Unfortunately this was not the case.. in the time from may to end of July, I got my two new diagnosis and had 2 hospital stays. Lynn called me, I remember it very well, she started the call congratulating me, I said "thank you" instantly she then said "Leanne, something isn't right? Please tell me what's the matter" I then had a full on breakdown, the first tear rolled down my face and I knew it wasn't going to stop, this lasted for a good 10 minutes before I managed to even get any words out, then I proceeded to explain to Lynn what had happened recently and how I was feeling.. The call went way over the hour mark, and Lynn decided that I was not to be discharged and counselling was to continue.. Till this day I am still under Lynn who has been absolutely incredible with me on this journey, she really understands the struggles I face, and has seen me at my best and now my worst, every session we work on building my mental health back to a stable place (were not there but I know with Lynn we WILL get there)🤞
During these last few months, I have seen my Cancer doctor and spoken about my feelings and told him things in confidence, as well as my GP and other doctors I am under.. One appointment my Cancer doctor called me in for an emergency appointment and said that he had a lot of emails regarding me, and my health and he was concerned, so he moved me from 3 monthly checks to every 4 weeks, he also said that my body was struggling with everything, said there was a lot of red flags now 🚩 and said that he wanted to prescribe anti-depressants, the one thing I wanted to stay away from, but I knew with how id be feeling that it was time to accept the medication, I finally accepted that I truly needed help.. so now I am going to dive deep and let you know how I truly been feeling that's ended me up here..👇🏼

How do you explain depression to someone? Truth is, you can't, no matter how much they 'understand' no one will truly ever understand, because everyone depression is different, with their own triggers.. I got diagnosed with Cancer in 2018, I had 8 hospital stays from this, yet still I could smile, I WAS happy, treatment everyday I still felt happy.. but this was a mask, I never let true feelings in, I HAD to be the inspiration everyone would call me, I can't let anyone down now, I've come too far, I cant let any weakness show, as much as I thought this was brilliant, it was not slowly it was building up and eating at me.. It only really hit me after I was Diagnosed with Addison's disease and IIH.

I remember the first night back in my own bed, I would wake up every 10ish minutes struggling to breath, scared, crying to Ash. I kept remembering the doctor telling me that if the sleeping pills I took on that Wednesday night 2nd June worked I probably wouldn't of woke up, I was so frightened to sleep in that bed, this happened for a good few nights, panic attack after panic attack, I was fine as long as it wasn't that bed. 

Then the hate kicked in, I hated my life - Why me? why must I go through this? Wasn't/Isn't the Cancer punishment enough! Did I deserve this? DO I deserve this? Am I a terrible person? These play on repeat in my head over and over, no matter what I do, these haunt me.. 

But the worst thing to enter my mind is I don't want this, I don't want to be here or face this daily.. 💔 I don't go suicidal, I explained this to the professionals, all I want is when an adrenal crisis happens, or I pass out I would prefer to be left alone, No help, I just want an end to the pain and suffering but not in a selfish way, But for my friends and family, I hate seeing their faces when I'm unwell or in hospital or when we meet and I cant do all those things I used to do, I feel a burden on them, its a feeling I can never seem to shake, no matter what I do, I look in the mirror and the first thing I tell myself is "How much easier would it be if this was over" I know this is going to upset and hurt a few people reading this and I apologise, but I need to be honest with myself and those following my journey, its not always easy, and this is the realism ! 
My life changed so quickly I never had time to understand what was going on, I'm currently under  9 doctors, I have at least 6 hospital appointments a month, I'm on 13 tablets a day, I walk with a stick (most of the time) I have a bowel bag system I have to use daily, I go days no sleep at times (refuse sleeping meds due to the scare), I'm steroid dependant due to my Addison's disease, I take steroids to keep me alive, I have gained a lot of weight from this which also plays a huge part on my mental health being at the heaviest I have ever been, the headaches so painful from the CF fluid building up around the brain causing to much pressure on the brain and skull, dreading knowing that if this keeps feeling this way, its back to a hospital stay with more lumber punchers ect.
With the Addison's disease and no energy I am working with physiotherapists to try and rebuild strength, So far on a Monday I'm managing a 20 minute walk and as the weeks go on, I'm manging a little further in the walk before needing to use my walking stick 💪🏼 even when the doctors say 'just use the stick' Its more again the mental side for me, the judgement on peoples faces when they see a young girl with a stick, maybe they aren't judging me but unfortunately that is where my head goes, I instantly feel judgement, I feel not good enough. I can't do long days of anything unless I up my steroid intake (i.e. Wedding and Birthday/events) (which I don't want to keep doing as this can lead to diabetes!) 
I want to be able to share little positive stuff with my friends on social media, such as selfies when I'm seeing a friend or out for tea, because it takes me so long to get ready now, that most times Ash has to actually help me get washed, ready, and straightens my hair.. But a 'selfie' people assume everything is fine, 'oh well she's with her friend, or she's playing a game she must be FINE' and it breaks my heart that people can be so naïve, and just assume they know all about a person from a photo/a happy time. I see Facebook as a place to put my achievements and my GOODTIMES, because when my time comes which could be anytime, I want ash's memories to come up with GOODTIMES with me, to remember the things we got to achieve, the little achievements for us as a couple going through so much.. so he's not just remembering all the times he's had me laying in his arms crying my eyes out, screaming in pain wanting it all to be over, wanting it to end, him feeling helpless as he knows he cant do anything. Can you imagine it? His wife, in bits, in pain, not wanting to be here anymore?... No we can't as we don't see that, and I hope anyone reading this never has to deal with that either, as I see in ash's eyes, I physically see him breaking every single time.. and IM THE CAUSE!😌 I hate knowing what this does to him, I want to be better for HIM, for our future and our family💔 I feel an awful wife, making him go through this.... BUT without him I wouldn't be here, I can 100% say that, If it wasn't for him, I wouldn't have made it this far, I wouldn't be here telling my story!!

Mental health is no joke, SO many people suffer everyday and unfortunately so many people lose their life to mental health too. Its important to remember that even the happiest of people can be fighting their own battles. A smiling photo can be hiding so much.
Through all of this I am so thankful for my amazing family who are always by my hospital bed, always by my side, who have to make so many adjustments with me and accept me for who I am.
My amazing friends who have helped me out of some really dark places, whether that's through messages or a phone call, they have been a back bone to me, kept me up in times I have fallen, even people I met through gaming last year have made a huge impact on my life, and I've even managed to meet a lot of them in person now, I am a better person because of these amazing people. 💜
MY GIRLS.. they've had my back from day 1, and they have made changes to still include me, such as movie days coming in pjays as they know its a struggle sometimes for me to get changed so pjay day it is.. they support me in more ways you can imagine, Elsie even saved my life in June when I had my first adrenal crisis on her bathroom floor, forever grateful! Kirsty surprised me for my birthday with a weekend break to PARIS in December!! - She even went to the extreme of contacting trips ect regarding disability access knowing I'm stick aided and cant walk very far, she wasn't bothered by this she just wanted to do something nice to end such a hard year, with lasting memories to treasure - Don't worry, ill take LOTS of pictures of such a special trip 👑🍹🌸
 

My advice - Please make every moment count, don't judge people from what you see, be aware people have battles, and some battles are at breaking point, be kind it cost nothing. MAKE MEMORIES!!! always make memories please, take the photos, share your happy moments, be proud of achievements no matter how small they seem, NEVER forget to tell someone you love, that you love them. Life is too short, the world is a cruel place, but you are your own person, so be who YOU want to be. Check in on those you care for, you never know when a check in could really mean a lot to someone struggling inside. DANCE IN THE RAIN - your probably like leanne what? but honestly go out in the rain, have a spin around or just lay on the ground and fell the weight be lifted, Its a comfort to me 💕

Thank you for reading my Blog.. my long ass blog post today (or whenever you may see this) - you got this far then I'm speechless you took the time to support me this way! 
I've tried writing this 6 times, and every time I deleted it, so if your reading this, Yaya I published it finally 💪🏼🌸 
Now to keep working on me, build my strength and achieve some goals - One small goal is do an hours walk (eventually) .. Lets get it 💪🏼 

Much Love, lets Kick Cancer/Addison's BUTT 🎗