2nd June - I have had the most awful stomach pains overnight. Horrendous severe cramping that causes me to writhe in pain. Every time I cramp at my stomach area it radiates around my back. My back is super sore, especially around the drain 2 area so the combination of both pain sites together is agony. A nurse gives me a strong painkiller at some point and the pain subsides a little.
I have now had diahorrea 11 times, surely this is not a side effect of new AI I took last night. Diarrhoea is listed as one but surely not this much this fast?!
Mum and Col visit later that day, despite my sore stomach I need to eat. Mum helps feed me a soft jacket potato, I am totally incapable of doing it myself.
Later Rob and his Dad visit, just for a little while. I am aware people want to see me without overwhelming me, it’s a good idea, at the moment the smallest levels of activity exhaust me.
Caroline visits that evening, she brings me a few goodies and she also has super exciting news to share with me....
💕 Modo, Caroline - Huge congratulations 💕
3rd June - Another night full of spasms, writhing and pain 😔 Rob visits early and speaks to the nurses and doctors to see what we expect next plans to be and just why I am in so much pain. It turns out that my blood markers (taken from my new in place PICC) are showing severe infection still. There is some mention of a normal infection marker being around 30, mine is currently sitting at over 2,000. That’d be why then. The plan is to put me on a 10 day course of antibiotics with a drug called Meropenem and because of a potential thrush infection in my chest I am also started on a course of antifungal drugs. These will all be via IV through the PICC line. Although I have the raised infection markers, my kidney markers are actually showing improvement so that’s one small win.
Michelle and Lou visit about 11am. Today is Michelle’s Baby Shower that I had organised with one of her sisters Lisa. I’m really sad to miss it 😔 There is a scrummy Afternoon Tea planned at Joanna’s Boutique Tea Room with games, balloons and decorations.
Joanna's Boutique Tea Room
Lisa, who is an amazing cake make and has her own cake making business called CaketoGo has made little cupcake favours for everyone too. She has saved one for me!
One of Lisa's Cupcakes
I had weirdly been obsessing about my chipped toe nail polish, it was becoming a massive issue in my still very befuddled brain. Luckily Mum realised and when they visited tonight she brought in nail polish remover and removed the offending polish for me, I was so pleased. Sounds so odd writing that! #MumToTheRescue.
I am in dreadful pain down my leg, my knee is excruciating. Tonight Mum and Col tag teamed, Col massaged my leg whilst Mum spooned dinner into my mouth. The pain makes doing pretty much anything pretty much impossible, including eating. I'm actually really struggling with eating anything at all at the moment but I know I have to. I just don't fancy anything at all.
Mum and Colin have been told by the nurses that I am refusing to eat and that I have been put on IV nutrients because of this. It's not that I don't want to eat, it's that I am in too much pain to concentrate on actually eating and that the hospital menu is so bland, boring and repetitive that there is nothing I ever actually want.
Every day the lovely lunch lady comes round with the menu for the next day. It's like Groundhog Day, the menu is exactly the same every day for a week and then it changes and it exactly the same for the next week. Now don't get me wrong, our NHS is abso-bloody-lutely fantastic and the fact you get free meals 3 times a day and fruit, biscuits, hot drinks etc whenever you ask is amazing; but I am a fussy bugger when it comes to food.
As I am not eating properly, it is apparently causing issues with my already weaked kidneys, therefore I know I have to eat. Mum gets out a pen and paper and asks me if there is anything I actually fancy eating that they can either a) Get from the hospital right now (options are the café, a very small Boots, a very small M&S and some vending machines or b) Bring me in from home. I am so dozy from pain meds and hurting everywhere, that I just don't know what I want.
They eventually end up with a list that says Trail Mix, Mini Cheddars, Raisins, Flapjacks, (v randomly) M&S Chicken Teriyaki Bites and Orange Squash. So not an enormous list, but a start. They leave to see what they can find and I fall asleep. Mum and Col return triumphant with a few things, plus the M&S Chicken Teriyaki. Which I then decide I don't want after all and ask them to put in the fridge! #IKnowI'mAPainInTheArse
Mum has brought back a tiny cheese and tomato pizza which she force feeds me and I tell her I don't want the crusts (told you I was fussy). She tells me tough and feeds me them anyway!
The next day, they return, having had deliveries from Rob and been shopping, with everything on my list and more. Now all I have to do is eat it....
It’s very early, but somewhere in my head I remember it’s the first of June. That means I need to get Amy! Me, competitive, never - Haha. I think I send her a pinch punch message with Recky. Then I fall back into a drug induced deep sleep and wonder if any of that actually happened.... Later I find this ridiculous photo on my phone so I clearly did it! 🤣🤣
I wake again a few hours later and manage to get into my chair, it’s a big achievement and I feel proud. At some point I must get back into bed. I am fast asleep when I suddenly wake to some horribleness happening directly opposite me.
The lady in the bed opposite from me has just died, I heard a sigh, a very deep sigh and then that flatline noise. Then chaos with people rushing, around. Holy hell. I’m so confused if this is real or not. But it is real. Someone is dying / is actually dead. There is so much noise, wailing, bleeps. I am full of drugs and confused but I know it’s happening.
She appeared to have been very poorly, but it’s still beyond crap. I’m unsure if it’s a good thing or not, but her daughter is there, she sees her Mum die. The curtain was mercifully shut as the daughter and her husband were chatting with the nurse about something else when the Mum slipped away.
I ask for my curtain to be pulled around my bed, to give them as much privacy as I can. The poor daughter is wailing, shrieking, unable to believe what has happened. The nurses were talking with the dead lady about going home just hours earlier. It’s odd. I recall her saying, “that’s not happening lovey”. The Mum definitely knew, she waited for her daughter and husband to be there, gave her one last kiss and went.
I don’t want to think about it too much. I force myself drift into a sleep. When I wake up, unsure of how long I have dozed for, there’s a super strong smell of bleach, I guess a deep clean has happened. I’m asked at some point if I want my curtains pulled back, I say okay and in front of me is just a blank space. No bed, nothing, it could have been a dream were it not for the very definite bleach “cover-up” scent.
I feel bizarre about this all afternoon. I have just heard someone die, literally in front of my face.
Later that afternoon Sarah and Mish visit, it’s so good to see them. They wheel me outside and I get sunshine on my face. After the trauma of this afternoon, the sun is blissful.
After I come back to the ward and my oncologist has decided that my bloods show enough improvement to part start the new treatment so I take my first Exemestane.
As it has been 24 hours since the PICC line, the nurse also puts the dressing on, I immediately begin to itch and my skin really is not happy. Turns out I'm allergic to hypoallergenic dressings...
It has to stay in though, the nurses cover it with the accessible dressing and I have to deal with the horrible itching.
I am woken early and told I am about to be taken down for an operation to insert a PICC (Peripherally Inserted Central Catheter) line. I am barely awake and for a while through a hazy fug I fight with this doctor about this. I know I react badly to anyone putting anything in my veins. But basically it’s tough shit. The nurses are going to be giving me daily IVs (tbc) and taking daily bloods. They need to do this somehow and a PICC is the best way rather than a daily stabbing. The PICC is allows bloods out and treatment in so it really is the best solution. I agree and am wheeled to theatre carrying Recky to squeeze throughout the op.
Once down in theatre I am warned of the risks: The PICC line can move out of position if it is not secured in place (with sutures). There is a risk of vein clotting (thrombosis) or vein inflammation (phlebitis). You may get an infection at the insertion site or in your bloodstream. The PICC may need to be removed and you may need antibiotics. I sign the consent forms.
I am then prepared for the op. They remove the old cannula. The docs clean my arm, and use an ultrasound machine to find the deepest and best vein to use. One doc injects my arm with anaesthetic and it fecking hurts. I grip Recky as tightly as I can with my other hand and squeal with the pain. My veins are so bad but luckily the doc gets the big bugger needle in first time to get the line in place. The other doc finishes off by doing an xray to make sure it’s all in situ perfectly (which thank goodness it is!).
If needs be the PICC can apparently stay in your arm for 12 months 😮, average is apparently 6 months. I’m only prepared to keep this in whilst I’m in hospital. It’s flappy and annoying. It’s restrictive and if when I’m out I’m not having IV chemo then why do I need it in. Whilst in hospital I’ll need the dressing changed at least once a week and a regular flush through.
Michelle comes to see me but I am fast asleep, she leaves some goodies for me and disappears without waking me. Bless her. I wake up to an awful smell, the woman in the bed to the right of me has shat the bed.... It really smells 🙈
My arm begins to feel bloody sore already.
The temporary tape holding the PICC in place is really itchy but they have to leave the PICC uncovered for 24 hours after the op just to monitor it.
Laura visits that evening and I am a bit more awake and talking than I have been before which is cool. She tells me about her cool visit to the USA and some exciting exploits she got up to! I remember really liking her jacket and weirdly I dream about it that night.
28th May - I am on Tilgate Annexe, I have been pumped full of so many painkillers and god knows what other things I am totally out of it. I remember being showered and it feeling wonderful. I remember Hayley visiting. I remember her bringing me crappy magazines and talking to her from my bed but I literally have no clue what about - sorry mate!
I am given strict instructions to rest and recover. I am not a patient patient, I want it all now. There are falls, with big bruises, my legs won’t work, I have swollen up with fluid from where my organs stopped working, I have the fattest ankles and right arm. There are tears, and many many, many, many excruciating bouts of pain. I have weird dots all over my feet, like bizarre red marks. They take a while to disappear. I am started on steroids (dexamethasone). I bloody hate steroids, they give me severe insomnia, they make me act like a different person, they make me feel like I am high, I really, really dislike them.
29th May - The docs have been taking bloods from my cannula that was inserted at some point during the ITC period. They are thankfully going to stop using it soon as my arm is getting too swollen, itchy and sore to keep it in for much longer!
30th May - I literally have zero feeling in my right leg. I try and put weight on it and I cannot feel anything, it is so weird. How on earth can I go from scaling cliff tops with Rob in the Isle of Wight just a few weeks ago to this. It is so bizarre. My legs and ankles are swelling more and more, I hate this. I just don’t understand why on top of everything I cannot now walk. I am brought a walker but at the moment it is totally pointless as I cannot do a single thing with it. Actually, with Rob’s help I do manage some kind of dragging shuffle to the toilet once. I am bloody determined though, I am not leaving this hospital until I make this sodding leg work again. Because of this I have a spine MRI which thankfully shows no cord compression.
I also have a repeat echo on my heart which shows a perocardial effusion of 0.3cm. So there's still some fluid there. It will have to be monitored to make sure it doesn't increase.
I’m not really sure how to begin. I guess let’s just let it spill forth..... From my various previous blog posts you’ll know on 28th April, I had a drainage procedure where docs emptied 2,200ml of fluid from the pleura of my left lung side. The drain kept the pesky fluid at bay for a bit, enough time for me to have a great time in Bristol and meet some wonderful ladies. (Bristol Bitches I love yous)! Then I had Drain 2 which just felt all wrong.....
21st May - I wake up after my awful weekend and as agreed with Rob, I call Southwater Surgery for an emergency appointment.... 32 times. 32 bloody times. I eventually get through, I request an emergency appointment, "Miss, are you sure it's an emergency, we are very busy...." I finally get an appointment for about 11am.
The time gets closer, I am feeling more breathless, almost at collapse. We are 15 minutes from the appointment, do we call 999...? We decide against it, I do not want to go to Worthing hospital, (our closest A&E as the crow flies). All my info is at East Surrey, my entire oncology portfolio, the recent drain info.... it would not make sense. Decision made. We get to the docs, normally they are gentle, with a “hello, what’s wrong”, but this time when the GP approaches us in the waiting room, he takes us quite brusquely into his assessment room and asks us urgently to explain. We tell him the story and he immediately ushers us to a side room, tells us he is going to call Tilgate Unit where the drains were done for more information and will let us know what he wants to happen next. There’s waiting, short waiting but this never happens. “Go to Kingsfold Unit Ambulatory Emergency Care and go quickly” we are told. “They will then be expecting you at Tilgate Ward”. We go home, pack a bag and drive there.
We arrive, I am struggling to walk at all without feeling like I cannot breathe. The staff take me through to Tilgate Ward and I am put on a bed in respiratory ward lower end (as in minor concern). They put me on oxygen, I immediately hate it, it won’t stay in my nose and when the machine is in I feel like it’s totally blocking me up anyway. Mum and Col appear, I feel shit but also like this is a bit overkill. I still have oxygen up my nose, the nurses monitor me taking my oxygen levels, pulse, heart rate and blood pressure.
The team do a bedside ultrasound which shows a bilateral pleural infusion. As in the fluid is back. But it's now on the right as well as the left. FML. Apparently there is more fluid on the left than the right. I am told they will try another drain tomorrow on the right side. Oh goodee! So the bastard painful popping procedure didn't get it all. Or did it not work. Or. Or. Or... Read deeper. They will try again tomorrow. As in that's why the GP said pack a bag. Keep up Jojo, you're supposed to be clever! Aah, click. So I am here overnight, okay cool.
Not so cool as it turns out. I have a mentally sick lady opposite me, I know I had my mental issues last year, but this is quite different. She is being hideously racist, saying heinous things to the nurses. She is stripping and doing full on bendy naked yoga whilst wailing. The nurses try and dress her, she scratches out like a wild animal, clawing at anyone that comes near. It's impossible to know where to look. The nurses are trying their best to stop her. She is then nakedly sitting on people’s beds, I'm willing her to leave my bed alone. Mercifully she does so. Then she stands, shouts in a screaming high pitched chant type thing and does a micro shit on the floor. Wow.
22nd May - I have breakfast, and then vomit everywhere. I am unsure why, I feel quite well. I am told to put the horrible oxygen tube back up my nose. Rob arrives. My breathing feels horrendous, I keep coughing and my chest is tight. The docs attempt to do the drain. Number 3. There is more fluid that has to be got out. I’m far too sore, my body says no. The docs attempt about 8 (!) times to inject, to pierce, to prod to get the fluid out. It is absolute agony. They decide to call it a day thank god. Rob stays for a while, helps me calm down. I am sick again. Then Mish visits, she brings me loads of food and drink goodies as well as her portable DVD player and loads of DVDs.
Finally Mum and Col visit. I refuse to eat. I'm in so much pain. I have a jacket potato with cheese and baked beans. I really really don't want it. The pain is excruciating. Mum shovels as much of it in my mouth as she can. I'm given anti-sickness meds and I’m hooked to a 12-hour bag of IV fluids. Mum and Col depart. Another night with the lady opposite me, she sings show-tunes tonight. Mildly entertaining, I wonder if she takes requests 😋
23rd May - I have an awful sleep, I am in so much pain from where they tried the drain yesterday. I also keep being sick despite the anti-sickness pills. My stomach hurts so much.Whereas before I didn't feel unwell, now I feel atrocious. An ultrasound has shown I have to have a left side drain today, it doesn’t matter if it hurts, it has to happen. I’m taken to a side room, Mish arrives (Rob is already there), as I am wheeled into a side room. There are about 5 people around me all doing various jobs, it’s done under guided ultrasound. pop. There is screaming from me, by christ it hurts. It The team tell me that it is very difficult to get the drain in as there are lots of pockets of fluid rather than one large one. Also my lung is sticking to the lining. Ouchy. I’m told it will drain slowly, does it... Of course not! By the time I’m back at my bed, literally a minute scoot away, 800ml has poured out. The drain is clamped. Rob and I are told about a process called pleurodesis, which is an operation the docs want to look at eventually, but given the amount of fluid pockets on the left side, they are also unsure if it could even happen at the moment.
I'm hooked up to yet another 12-hour bag of IV fluids as I cannot keep any food or drink down. I do not like the fact that I cannot explain away a weird feeling I have. It bubbles under the surface, ironically bubbles pop. Louise and Caroline visit, it's nice to see them but I am lying on my bed the whole time, muted and tired. I am a bit stuck behind some sort of spidery web that I cannot break through. My eyes feel weird. Lou offers to visit me the next day and deep somewhere, something tells me to say no thank you. I really don't know why as normally I'd love to see you Lou! But an unnecessary excuse is made because something, somewhere shouts at me to make this choice....
I am put back on oxygen as my levels show at 88%, normal is 100% (obvious I guess...)
Mum and Colin visit, they help me try and eat but the pain and the nausea just won't allow it. The drain has finally slowed down and about 1,800ml has drained out.
24th May - I feel sick and dizzy. The pesky left pleura fluid will not behave, it keeps refilling, FFS. The acute respiratory docs are concerned about the right side too. FFS. Not only that, an ultrasound has shown potential fluid around the heart. Triple FFS. I am monitored throughout the day. Fluid on the heart is not good, it means your heart is almost wrapped up in a liquidy cocoon and cannot do its normal job. I know I have visits from friends and family throughout the day, but things begin to blur. We don’t know it now, no one did, but it’s the start. It feels like my inquisitive brain is shutting down. I want to ask questions but feel unable to access words.
My blood markers show that I have extremely raised inflammation markers of over 2,200 and normal is 30. Shit. I also have "deranged liver function with high ALT and ALP". I am started bloody quickly on Amoxicillin and Metronizadole for sepsis. My blood gas also shows metabolic acidosis with high lactate of 6.7.
My kidneys are not working properly due to my lack of eating and drinking but also I have acute kidney injury. Mum and Col feed me, I manage about half my dinner.
More fluid has come out of the drain, it's about 2 litres now.
25th May - How do you begin process the fact you almost died.....
I am moved to the High Dependency Unit - Tilgate Annexe. Rob is at home, he is about to go to the dentist, his mobile rings, it's the hospital, he gets the call... Get here, get here safely, but get here quickly.
He gets to the hospital. I am still me, I am chatting away to everyone around me like everything is OK. However, it's almost like there are two of me and I am observing a play. This feels fecked up.
I am going into something called Hypoperfusion, which is decreased blood flow through my organs. I still have acute kidney injury and acute liver injury. They give me an NAC infusion to counteract the paracetamol in my blood, because now I have liver injury I cannot have paracetamol any longer. I am also started on antifungal drugs.
I see the me that sees Rob, and the people at my bedside but I can also see another me. The other me I can see and feel somewhere inside. This other me is fully aware yet unaware, awake yet asleep, knowing everything whilst knowing nothing. A weird, floating conscious yet unconscious "being", streaming around. Bits of this me feel like they're being tugged at by unknown forces. I don't like this. It sounds so over-dramatic to say it feels like bits of me are being split into sections, mental and physical. It's bizarre, I am almost watching this unfold like a drama series and I am the protagonist.
There are 5 doctors around my unit bed which has now been moved to the ward section which is highest rate of critical before the ultimate level of intensive care. There is a blockade in my head telling me it's not really happening. My oncologist is there, my SBCN is there. Rob is told everything that is happening is bloody unusual. No-one could have foreseen it all happening this way. I am given an urgent echocardiogram which shows I have a fluid on my heart with right atrium and right ventricle diastolic collapse (blood going into the right ventricle).
Rob must have made some calls as at some point Mum and Col arrive ashen. My army marches forward. I recall seeing Mum and Colin's wan and terrified faces. They are all then told it’s fucking serious. My life balance is 50/50 at best. I apparently laugh and say I feel fine and I don’t know what the fuss is about! I am dying.
But then somewhere in the shitstream my brain shouts stop, just stop. I look at Rob's grey, frightened face and I look at my Mum and I look to Colin. I see concern and I know, this is terrifyingly real. They have to drain the fluid that is going to suffocate my organs and they have to do it now. I feel myself beginning to go blind. Things are closing down. My heart can only pump a small amount, it cannot supply my body with what it needs.
I recall being rushed to the cath lab. I see Mish as I am being whizzed away, I remember smiling at her but I have a vague recollection of her looking like she is about to puke!
I am told afterwards I apparently talked coherently to the doctors and nurses during the periods I was able to. I ask questions, I want to know what’s going on. I’m on the brink of death yet I still want to know what the procedure I’m having done is! Typical nosey, inquisitive Jojo.
I recall being rolled onto a bed, multiple people around me, each partaking in critical role in what still seems like a big fuss to me! But then I recall needles. I recall a very blue room. I recall a hot searing pain. This must be the pericardiocentesis and they drain 800mls liquid. Through a foggy delerium, a very bright light suddenly becomes darkness. I apparently ask the time.
Rally the troops. I am just a few rooms away. Rob, Mish, Mum and Colin are in the waiting room. People call my nearest and dearest, my Dad. He mobilises the Scottish contingent, Gillian, my Kitty, my Henry, Kitty's wonderful chauffeur boyf Mike whom I have not yet met. Top top lad to have helped out like that.
How those words are passed on, I don't know. But they get the sinister cogs in motion. They will arrive Saturday.
Rob calls Amy, I know she would have come anyway, however she could have done, she'd have made it work. It was just fortuitous that she had her phone with her (she was training not teaching so it was able to be answered) and it just happened to be bank holiday weekend and therefore half term the week after so it would not affect her job. Colin calls Alex, who mobilises Milly and Oscar.
Hideous call list done. The furthest distance troops are mobilised and speed towards me.
Apparently about an hour goes by, I cannot imagine what the waiting room is like. And suddenly I am out of the cath lab and moved to intensive care. I am whizzed by the waiting room window and I look and I stare. Somehow I can see through the actual blindness. Everyone in that room sees me and bursts into tears. I am awake, I have made it through the first step.
I have vague trace memories of what happened next but nothing concrete. They are whispering, floating, wispy fleeting ghosts. I don’t know if they will ever come back, and in truth do I need them to do so?? I imagine they will revisit me when I least expect it, but for now they can remain as ghosts. Buried ghosts of being a bit too close to the end.
I am both awake and asleep. I remember kisses, squeezes, tears, I can obviously guess who those were from, but if I told you that I knew then that would be untrue. I am still terrifyingly very blind and feeling totally incapable of making any neural pathways. Things are not connecting or joining. Words are stuck and I am being totally non-sensical. At some point Amy comes in, I am blind yet I know it's her. I lucidly thank her for driving in bank holiday traffic. I am a weird mix of being totally in the moment, all knowing and yet confused and questioning as feck. I know Alex, Milly and Oscar come in at some point. As does Mish. I presume the nurses begin to stagger the visits.
I am on a strong dose of Fentanyl and this apparently is what is accounting for my hallucinations and inability to join the dots. It is 100 times stronger than morphine! They are using it because:
Fentanyl has established medical uses in treating a variety of moderate-to-severe pain, including:
Before or after major surgery
Chronic pain requiring continuous opioid use
Pain resulting from cancer and cancer treatment
Following a heart attack or for patients with poor heart function source
At some point day becomes night and I start to hallucinate, I shout, I tell everyone this is a lie, that I am in a tv show. That they got me ha ha well done and that it was time for the Truman Show to stop. I begin to pull at my arms to rip things out. Where the feck did the cannula come from? And holy shit where did the catheter come from?! I cry. Big blobby sobs. This is not real. This is real. Rob’s ashen face comes into my head, the only thing telling me it’s actually true. It actually happened. Holy crap.
26th May - Dad, Gillian, Kitty, Henry and Mike arrive from Scotland at some point in the early hours.
It’s now Saturday afternoon. Rob arrives about 1pm and I apparently task Rob with getting in touch with people and being the main point of contact. I am obsessed with not being able to see. Rob puts a brief message on Facebook, I want people to know how I am, that I made it through. However we do not have all the same friends and this bizarrely becomes all-consuming for me for a while, we get a mini solution though and Rob makes a Facebook status with a public setting. My brain is apparently satisfied with this solution.I have vague memories again but flutters come back as I type this. The visitors come in Noah’s Ark stylée as far as I know. No overwhelming allowed.
I randomly am convinced my bed is my primary school?! Absolutely no idea where that came from!
I don’t remember eating or drinking a thing. Maybe I did, maybe I had fluids. Who knows. It may seem unimportant but I am finding being mentally "stuck" very hard. I apparently try and make conversation but I can access nothing easily, words are had. My vision is very slowly coming back, it is really blurry despite my glasses. I think parts of my organs are awakening. It’s odd, beyond odd. I am obviously on an enormous concoction of medications on top of the whole dying thing!
Rob apparently co-ordinates who goes into see me and when, as well as me requesting people like some kind of demanding diva - I have no recollection of this.
All my troops continue to visit, I apparently see Oscar and beam, I wish I could remember this!
Mish arrives, we apparently have various conversations, I don't remember this at all.
I summon Amy at some point and say something silly to her, she gives me a soft toy shark - I get why immediately! He is called Recky.
Recky, my tiburón de la suerte 🦈
Love you Amy
I remember Dad visiting with G. They tell me a story about car insurance, I laugh even though I am unable to understand. I want my brain back! I think it must be undergoing an awakening trauma of a kind.
Once again day must become night, I am unsure who is around, I guess people have gone home to sleep.
That night I am convinced the hospital is a cheese factory and I am the Cheese Director?! The brain sure is a weird thing! What even is a Cheese Director? No clue but sounds like a fun job - haha!
The popping has bizarrely returned, it's so background but the noise is there. Perhaps before it was a breaking down and now it's fixing... .?
27th May - My heart drain and catheter are taken out. I am shown a breathing trainer I have to try and use. The objective is to get the yellow ball in the left tube in the middle (there's a smiley face you can't really see) and raise the white part on the right with as many mls as you can whilst holding it steady. I try and fail immediately. Great.
I am moved out of Intensive Care to the respiratory equivalent of HDU, Tilgate Annexe, where I was on Friday morning. I am on the opposite side to where I was on Friday, a lady called Karen is where I was, she tells me we have swapped places. It’s mercifully quieter than ICU, my vision is beginning to return and I am beginning to grab at memories, words, thoughts and processes. My loved ones visit. I’m sure there are tears from many. I cannot remember them but I can tell they were there. Trace memories of tear tracks on my face.
Kitty tells me at a later date I have a hilarious nonsensical conversation with her and Henry, partly about Henry's awesome upcoming trip. I am totally high on god knows what and recall nothing of this! I am also apparently eating a jacket potato, beans and cheese which I keep referring to as the #JacketOfDreams 😂
The furthest away troops plan their journeys home. I am in severe pain and still so confused but just so, so grateful to have such wonderful friends and family. They all made the effort. I am told I am daft and I laugh. I understand, I would have done the same in a (non-fluidy 😜) heartbeat! Those who live close obviously can stay, the others drift homeward bound.
That evening my friends do an Escape Room and have a curry, some normalcy for them amongst all that has happened. My heart sings for them all, I am beyond happy that they are happy.
19th May - I feel atrocious. I am in bed trying to breathe, trying not to cry and in between fitful sleep watching some of the Royal Wedding. I eventually get out of bed about 1pm, shower and feel like I’m going to faint. Why has this drain procedure made me feel this way when last time I felt relief and posted a photo of me smiling?! This thoracocentesis only drained 600ml, the one before was so much more. Maybe the fact they went into the same area? Anyway, regardless of why it's bloody sore! I struggle downstairs and onto the sofa. Everything is an extraordinary effort. I want to go to London Wine Fair 😭 This is looking less and less likely. We have friends round for dinner, I can hardly remember this. I feel and look like crap. I know Sarah, Dave and Bob came. I cannot tell you what we ate or what we did or what we talked about. Weird.
20th May - I am beyond sad. I cannot do LWTF, I’m too ill. I am gutted. Face facts Jojo. I cannot remember if I called anyone at work to let them know. I really hope I did.
I spend the day in the garden or on the sofa trying to feel better. I’m exhausted. It doesn’t feel right. The last drain at the end of April made me feel better. This is not the same. Pop, pop, pop. I cannot get it out of my head. Just walking to get a glass of water is extraordinarily hard. I feel so light-headed. I try and eat. I think I have pitta and marmite.
Rob returns from helping with his grandma's garden, he always does so much for everyone. I love him very much. I tell him I’m not quite right, about my day of exhaustion, despite all the relaxation attempts. We agree to wait until tomorrow before we escalate things, there’s something amiss, but we both feel nothing is requiring immediate medical attention as we have checked my temperature and pulse which both appear to be normal. I will call Southwater Surgery tomorrow and get checked out at an emergency appointment.
Rob took this photo of me on Sunday afternoon. Looking at it now I really don’t look very well at all.
Mum and Col pick me up early and we drive to Kingsfold Unit to get drain 2 done. Déjà vû. We are in the waiting room for about an hour and then taken through to Tilgate Ward for a while and then drain 2 gets underway. Though this time on the actual ward, not in a side room like last time. I feel far more vulnerable and exposed 😟 The only barrier between me and everyone else on the ward is a curtain, before I had a whole separate room. The procedure begins and I am prepped for the op, covered in a sheet as before. I am being done by a trainee who is being observed. I am not happy. It feels manic. The "drain digger" begins, screwing that 15cm needle deeper and deeper, more and more anaesthetic being used. I scream out, it bloody hurts. I grab Mum's hand tightly and Colin rubs the top of my head. The observing senior doc talks to me about my job, in Spanish, I see he is trying to distract me. Then there is a hideous “popping” feeling somewhere deep inside that wasn’t there when I had this done before. It’s weird. I beg for the more senior doc to take over, the trainee is really hurting me and thankfully the senior doc takes charge. Suddenly there's a pressure release. A lot of fluid rushes out and he quickly stops the drain and puts it onto super slow release. I ask for oramorph because I remember the pain from last time. The lung reinflating is mercifully far less painful this time but I cannot get the weird pop soundout of my head... We wait. And we wait. We take it slow. The fluid drips out. I am told the trainee nicked a blood vessel... One of my friends from the Bristol weekend who lives in Horsham - Ruth - pops up to see me as she happens to be in East Surrey. It’s nice to see her through the oramorph fog, we chat for a while but she can see I’m getting dopey so leaves me to rest.
We’re eventually told that as much is going to drain has drained (600ml), so Mum and Col drive me home but my god I ache. I thank Mum and Col, go inside, clamber on the sofa, Rob comes in to kiss me and shit there is immediate drama. Rob looks up at Poppy who is standing on the windowsill and her stomach is hanging down and sagging. We had Poppy spayed last week and fuck she has burst her stitches. Oh god. I am incapable of helping. Rob calls the vet and whisks Poppy away. Bloody hell.
I fall asleep for a few hours. Poor Poppy has to undergo emergency surgery 😥 She gets home later that night. I am totally foggy and can hardly remember the evening.
Rob and I head to Crawley where I have a meeting with my oncologist. Obviously there are no results from the MRI yesterday. However there are some results and in truth they aren’t great. A year to the day since my secondary diagnosis it would appear the pesky cancer is on the move. The CTthat Michelle took me to that I was so nonchalant about has shown that my letrozole is no longer working and the cancer has broken through. So I got about 10 months on it after everything I went through with the trial....
I don’t really know how to feel. So the cancer has now additionally affected some paraaortic and retrocrural lymph nodes and also some of my skin. I already knew about the skin though, I could feel it getting more noduley and hard around my lower left boob.
It has also caused the pleural effusion.
I'm frustrated that I only had the MRI part of these scans yesterday because it means we don’t know for certain about bone progression. We discuss a new treatment plan, basically switching Letrozole to another AI. The new plan would beExemestaneand a protein blocker calledEverolimus. I feel strangely okay about this. It’s not in my organs, it could be a lot worse. Yes the new drugs will come with their side effects but I’m ready to keep fighting.
Dr P takes me through to the room where they give you a feel after “the chat” and I show her the area of skin I was concerned about (which has been picked up on the CT scan anyway). I also tell her about my wish for palliative rads on my back and thank feck she agrees.
In that side room she listens to my chest, she is concerned some pleura fluid is re-accumulating on the left side again and wants me to have another drain. She says there is actually a possibility for me to have it tomorrow and wants me to go for it. Once I have it, I can start the new E & E treatment next week.
"Sure" I say. Despite everything I’m feeling good, let’s go, get it done, then I can have a day to recuperate and then go to LWTF. I love LWTF, I missed it last year due to the secondary diagnosis shock. This year I want to go, to be there, to see people, to interact, to do my job.
I tell Dr P of my intentions to go. She tells me she doesn’t think it’s a good idea. She advises that I perhaps go for just a day later in the week and says she thinks that may even be too much 😥
She asks that I go and have bloods taken so they are ready for tomorrow's drain op. I hate bloods so much. However I strike gold and get the lady who always gets them first time. Small mercies.
Then finally I go up to Comet ward to have my Denosumab injection and for the first time the injection bastard hurts. Rob and I eventually head home and I crash out on the sofa exhausted.
My 3 monthly MRI is due. Yay. Not. Pfft. I hate MRIs, they are so claustrophobic and loud and painful, bleurgh. This one also ties in with the one my onc requested I had at the mixed bag meeting.
Beppe is currently broken 😞 There’s an issue with the coolant or something so Lesley at work has very kindly been driving me to and from the office. She kindly takes me to work today and I work all day until Rob picks me up at 16:30 and drives me to East Surrey for my scan.
As this scan is my 3 month check, it’s a long one too. The nurses take 7 bloody tries before they get the cannula in. It’s not their fault. I hate my veins and I bet the nurses do too! 😥 I’m in the tube of hideousness for almost 2 hours. It’s loud and bloody painful. Painful because I cannot move and my back is so ruddy sore at the moment. Also painful because they strap a chest plate type thing on me that pushes on my sore chest. They have also properly clamped my ears in and they hurt too! The music that sometimes plays through the headphones to mask the noise is broken so I just have to lie there listening to all the loud noises. I try to pass the time by singing to myself, but then that makes me dance my feet. I get told off for moving and they have to restart part of the scan. Oops. Poor Rob is just sat outside, playing on his Switch, bored out of his mind. Eventually it’s done. I am helped off the bed because I feel like I could collapse. I am busting for a wee, I get dressed, go to the loo and as I am getting up I catch the cannula and it rips out of my arm. Blood pours everywhere, all over the floor, Rob goes grey, uh oh. The nurses clean me up and we are finally allowed to go.
On the way home in the car, I reflect that I’m actually fully expecting to see progression when I get the results of this scan. My back is immensely sore at the moment. I just cannot see how the spine has not got worse. I take pain relief constantly. At work I use a heat pad non-stop. I am fed up of popping so many painkillers, taking nightly oramorph and disturbing both Rob and my sleep, it just cannot carry on this way. I have already made my mind up that when I see Dr P tomorrow I will be asking for a blast of palliative radiotherapy on my back, progression or not. This will mean I probably have a week of awful pain whilst the rads do their thing but then hopefully some pain will ease.
Woohoo, delighted to have hit the 200,000 pageview mark!
Tonight a group of us went to see Ed Byrne, he was very funny and after my recent shit, it was nice to have a proper belly laugh and let out some stress. I also tweeted him before the show and he replied!
This weekend I was privileged enough to be able to attend an event in Bristol organised by Breast Cancer Care for women aged under 45 specifically with Secondary Breast Cancer. I have actually been on one of these awesome weekends before in November 2012 in Brighton when I had my primary diagnosis.
Whereas in 2012 I was pretty apprehensive about going to the event, this time because I’d connected with most of the ladies going on this one via my YBCN Facebook group I was more excited! We’d all chatted in advance and worked out where we were going to meet etc so my planning side felt pleased 😂
Channelling a French vibe:
I made the mammoth train journey down to Bristol, jumped in a taxi and headed to the lovely Mercure hotel. As before in 2012, everything about the weekend was funded, the hotel, meals, speakers etc. As soon as I arrive to check in, I was met by a huge sweeping hug from Mairi. Had never met the lass in real life before, but everyone’s Facebook connection is so strong it felt like I knew her already 😊
I went to my room, dumped my stuff and headed to the bar. Spotting my girls, we all hugged and started to chat, it was awesome to be with them all for real! Hugging Pilar, Nina and Lisa after chatting for so long was incredible. I also met some “newbs” who weren’t part of the YBCN group who I recruited into the fold. We all got to know each other very quickly and our sense of humour matched perfectly. I knew I’d made lifelong friends when I hugged Bubbles, laughed until I couldn't breathe with Bev, Dom, Steph and Myra, talking about Elmer Fudd & Popeye 😂, Boo's cider shits, our tits, nothing off limits - I think I got to bed about 2am!
The next morning I headed upstairs for the official start of event. I was given a name badge that was immediately adjusted to Lily by Bev! The night before Bev was convinced she had met me somewhere before, she couldn't work it out until about 4 hours later when she shouted Lily Allen at me 🤣
We were called into the main room where the running order of the weekend was explained, there were a few general sessions about treatment, trials etc and then various break-out groups which we had specifically chosen as of interest to us. After a chat about medical advances and other topics we headed down for some lunch. My afternoon breakout group was about Palliative Care and the misnomers about what this is. Other options could have been:
Adjusting/adapting to a life-limiting illness
Relationships & communication
Mine was interesting and clarified a few things in my head, however it was a little Bristol-focussed. I understand as they obviously could not cover all areas in the country, and different areas have different levels of care etc. What was good was the explanation that palliative is not literally as you are dying, it’s everything they can do from right now to help.
I also then did a session on exercise and what was possible with my mets, and as a result I have bought some resistance bands.
We then had chill time so Lisa, Boo, Bubbles and I got some snacks and drinks and relaxed in Boo's room. Then I went back my room, got ready for dinner and had another wicked night full of fun and giggles.
The next morning I got ready into a pretty dress 🙂 Lisa loved my priceless £2 watch and ordered it in about 3 colours, good old Amazon from China 🤣
We started in the same large room where we had an interesting session on clinical trials. If anyone would like the presentation on this, please get in touch and I will happily share.
We then had our breakout groups where the options were:
Talking with/supporting children - sadly obvious not one for me 😪
Adjusting/adapting to a life-limiting illness
Sexuality and intimacy
I chose the life-limiting illness session. It was interesting but felt a little more like a group therapy session rather than actually getting coping tips. It was very helpful though and I got the chance to speak about this blog and how cathartic it was which was very cool.
Then we had lunch and the event was over! It went so fast but it was so good. My heartfelt thanks to everyone at Breast Cancer Care for making the weekend happen. I got some amazing information but the best thing by far to come out of it was connecting to people and making amazing friends.
My 3 month check-up CT scan is due, joy. Plus it ties in with the one the onc said I needed to see if my spine is actually better or worse.
I know it’s needed, I know a CT is quicker than an MRI, still not fun though and there is just so much hanging around waiting for all the different elements.
I work in the morning and then head over to Michelle's who is kindly taking me to the scan. We head to East Surrey and the waiting room is absolutely packed and so boiling hot. I have to drink a litre of water ready for the scan. Mish and I are so sleepy waiting as it’s so warm!
Eventually I’m called through for my scan. They actually get the cannula in first time, I am amazed! I answer the usual joyous question about being pregnant 😞 and get on the bed, go through the giant polo and get it done with. It all feels so routine now! It’s over within 20 minutes.
I meet Mish in the CT waiting area where you have to wait again in case of a reaction to the contrast. It’s all fine as normal so they remove the cannula and we are free, huzzah.
We had been in the Isle of Wight for a few days and I noticed I was getting more and more breathless.
Rob, the doggies and I went for a lovely coastal walk along the cliffs, but it involved scrambling, stairs, stepping stones, pebbles along the beach and steep climbs. The end of this walk was a steep hill, and at the top I was so breathless I thought I was about to vomit and/or pass out.
In the end, just walking from the bedroom to the toilet in our holiday flat was leaving me out of breath. Rob made me go to a local GP on the island and thank goodness he did.
I got to the GP and she examined me and then requested I do a blood test called a D Dimer as she was worried I might have a pulmonary embolism! They were able to do it then and there in the doctor's surgery. So they did the test. The result came back in 20 minutes. Normal results are less than 500µg/L and mine was 1,200! My heart rate was also about 135. That meant a trip to A & E....
We rushed back to the flat and let the doggies out to pee and then headed off to the island’s only A&E in Newport. We waited for a small amount of time and then after triage I was taken straight to the ER beds where I had to have a blood test and a cannula.
Then I had an x-ray of my lungs. Basically the result was that I didn’t have a pulmonary embolism but I did have something called a pleural effusion:
Pleural effusion, sometimes referred to as “water on the lungs,” is the build-up of excess fluid between the layers of the pleura outside the lungs. The pleura are thin membranes that line the lungs and the inside of the chest cavity and act to lubricate and facilitate breathing.
So that explained my shortness of breath. Basically as the effusion grew larger, it meant there was more fluid in the lining. It meant it was getting harder for my left lung to expand and therefore more difficult for me to breathe. There was chest pain because the pleural lung was irritated.
The xray results showed that I had 2.2l of fluid on my left lung! That’s over a big bottle of cola in my lung. Think how heavy that is. And I’m only 5ft1! No wonder I was breathless and sore....
The procedure to get rid of the liquid is called a thoracocentesis, basically they insert a ruddy great needle into the pleural space around my lung and then drain off the fluid. Sounds simple enough but pretty ruddy painful. Now you should understand why the post is named Greek Dyno-Rod!
The only drain option on the IoW was a slow drain and I would have had to have been in that hospital until Sunday. Our accommodation was due to run out on Friday, this was all happening on a Wednesday. We had the dogs so obviously would have had to have found dog friendly accommodation. Therefore we put our foot down. We wanted to travel home. The doc was unsure as if there was an issue on the ferry I would have had to have had a helicopter called out! He asked his consultant who gave us the okay to travel. As soon as we got the okay and they had contacted East Surrey to arrange the op there we were out of there!
We rushed back to the flat, Rob heroically packed it all up and we drove to the ferry terminal, crossing fingers all the way that they would let us on. Thank goodness they did.
We turned up bright and early at East Surrey on Thursday only to be told there was no-one there that could do the op!! As I was breathing without oxygen they told me to go away and come back the next day! So as we were on holiday still, we made the most of it and went and saw the new Avengers movie 🙂
Try again! Friday we turn up at East Surrey and this time they say we’re on the list and can come in! Rob and I wait for a while and then I’m sent for another x-ray. Normally when you have a scan of any kind the people taking the images are pokerfaced and say nothing. This time, the man takes the image and then says "how long have you felt this poorly?" I say "oh a few days, I know about the fluid as I have had a scan already". He then says "Ah okay, I was wondering! Most people complain about fluid at 300ml, you have 2,200ml; you're hardcore!"
I then go back to Kingsfold Unit, wait for about an hour and then go through to a side room. The doctor and a trainee explain the procedure, ask me to sign a consent form, give me an ultrasound over my ribs so they know where to shove the ruddy great needle and it begins!
The doctor gives me an anaesthetic and some oramorph and then puts the 15cm screwdriver type needle into the pleural space and attaches a drain. Loads of liquid begins to drain out and I'm taken to the recovery ward.
Just a small needle....
The liquid continues to drain out and then the pain begins. As the liquid dissipates, my left lung begins to reinflate. The pain is fecking hideous and I roar and shout a lot. I also cough continually as the air begins to fill back in. It hurts so much.
The doctor comes over and gives me some more oramorph. The morphine makes me feel groggy and I have a sleep. About an hour later I wake up and we're told we can go home.
Here's a photo of me smiling (wtaf!) with the drain in, the 15cm needle and the liquid, which I promise you is not pee!
Colin took me to my appointment today, bit of a mixed bag. They still aren’t sure if my spine is better or worse! I’m a complicated beast it turns out. Basically one of my tumour markers CA125 has risen a fair bit since they were last tested, however the other tumour marker has gone down! They really aren’t sure what’s going on! So my onc wants me to have another MRI and a CT. These actually tie in with my regular scan checks anyway so all good. If the area at the base of my spine has got worse, then I’ll have to have some radiotherapy. Rads is fine though, I can defo cope with that.
My onc has asked me if I can be a case study! I’ll be written up (completely anonymously), as an example of not rushing into unnecessary treatment. So if another less savvy onc than mine had seem my brain scan and assumed it was mets, they could have gone straight to treating them. However, mine looked at my notes and considered my potential neurofibromatosis. Thank goodness she did.
Basically I have cytomas in my brain which are benign and are as a result of my NF1. She could have just assumed they were brain mets. So that’s why she wants to write me up! I’m interesting medically because:
- I was diagnosed young first time round, just 28
- I have secondaries
- I have neurofibromatosis type 1
Then we went up to Comet Ward for my denosumab, easy as ever, injection in the tummy and that’s it.
Sometimes in the dark it is hard to see through. This post will be one that I update as frequently as I can with the little (or large) things that are silver linings.
The most recent CT scan I had showed some improvement on the cancer fighting front. The node in my clavicle has reduced as has the sternum/chest mass. Although I don't know if it was the trial drug or letrozole that has made this happen, it's a win nonetheless.
10/11/17 - This week I made it into the office 4 times. After my recent A&E admissions and non-stop appointments, this really is a massive win.
24/11/2017 - I had my bone strengthener yesterday. After 8 long weeks. It should have been every six. The win here is that I have been switched to a new drug called Denosumab from the Zometa/Zoledronic Acid that I was on before. It's a win because the denosumab is an injection which is quick and on the whole painless whereas the zometa was an IV infusion which was bloody tricky with my poor crappy veins.
Around appointments now I am back to the office full time!
27/01/2018 - I took a 12 hour flight to Mexico and had an amazing holiday!
14/03/2018 - I am loving going to the cinema again. The fear of leaving the house is gone.
Probably the biggest Silver Lining of all - I am me again!