Family Fun

Poppy has not really left my side since I have been home!

Love photo

My bruise from the contrast dye

Hometime

CT staging scan, expanded to include groin area of concern

T 21 - CT staging scan finally. Bad pain, 6 years. Bruised arm. Let out. Walked out. Photos of cannula in bad arm. Paella champagne preggo forms. Nimoko biopsy. Biscuits and chocolate.

Walked out

Cannula comes out

Never Smile at a crocodile

  My jhvj

Waiting & My Fur Kids

Ggggg

W 20 - d and g. CT. kidney normal. Liver almost.infection almost. 

Carpark picnic with the doggies

Look Good Feel Better - Take 2

LGFB with Ruth

Cannulated

CT Staging Scan missed

A Plan - Finally a plan!

 hug from Macmillan nurse

MRI - Mass present in previous MRI scan in Feb 2018, unchanged since then therefore not bleed. Dr P reviewed scan and says it is a lesion that is known from my NF1.

Rob here

Rob all dayer. Stairs. Floor. Chemo. Paterson. Dodgy arm. Explain all. Photo. Bloods. Sad. Steroid. Bandage, psychologically cover it.

Cannot remember date MRI was fine.

Tough Old Bird

e woman to the right bed of me keeps almost dying. It's fucking chaos. We all have curtains pulled around us out of respect for her. She keeps being resuscitated and they haven't moved her to ICU because there simply isn't time each time they try and move. It's hideous, I have my music as loud as I can and am trying to block it out

I'm literally blasting my headphone music as noisily as I can and browsing shit websites to try and shut this out. Poor poor woman 😭😭

Hello Harry

Born 17th June 6lb 7oz! Born at 4.05am

Bambi

Fell down hitting head. CT head scan which showed 10mm mass, unsure whether a mass or haemorrage. MRI head scan.

 Bit of drama. I just fell and hit my head badly. I woke, needed to wee, started to walk with walker, right leg collapsed, I fell back landed on my head backwards. Nosebleed started as well when I hit head. As back of head took full impact of fall was not allowed to move so had to lie on floor, dead still, nose still bleeding. Had to wee on pad. Now lifted back into bed. Waiting for doc to see me because of head impact. They are also concerned nosebleed made me dizzy.
Doctor finally been. She said everything is fine. I just have to have head scan as protocol at some point today 

Cute gift from Karen

M 18 - Early morning Bambi. CT. Physio. Dad & G. Rob. See Harry. Photos of HP. Stair walking. MRI. Lady there said I looked really bad, this was before admission. Refer back. Mum & Col. Caroline, Steve & Rosie. Jo chinn 

The Great Escape

Overnight I have lots of trouble with nosebleeds and clotting. It's pretty vile, at one point in the night I cough deeply and end up coughing up a massive clot of blood! It looks like Tiptree jam - gross!

At lunchtime I got a hall pass! I was allowed to leave the hospital grounds for a few hours!! Bear in mind I have not left the confinement of the hospital grounds since I got here on 21st May, this was such a treat! I embraced every moment, feeling the sun on my face, hearing birds tweeting, seeing dogs being walked, people-watching, just being present and in the moment. It was wonderful. Rob picked me up and we went for lunch at a steakhouse. It also gave me a chance to try and walk "in the real world", it was tricky and made me look at the world in an entirely different way; looking for dropped kerbs to facilitate ease of walking, watching out for big stones in case my walker rocks on it etc etc! It was such a nice lunch date and spending time with Rob was just awesome.

So excited to escape the hospital grounds!

Lou visited me in the afternoon and brings me a humongous bag of pick n mix! What Lou doesn't know is that Mish is on the ward just down from mine still waiting for the bubba to make an appearance! Mish and I plot and Louise takes me for a walk and she'll be hiding around the corner, and that's just what we did! Lou was so surprised to see Mish, it was very funny!!

DVT

This morning I woke up and Karen was back again! I chilled for a bit and read some of my book and about 11am the physiotherapy team came to see me. They asked how confident I would feel trying some stair climbing! I didn't feel that my leg would be strong enough but I thought why not give it a try. The team wheeled me to their physio room where they had a set of stairs, I gave it a bloody good go and I managed to climb them!! There were only 8 stairs but it's such an achievement! Going down the stairs was much harder than going up, I struggled but I managed it!

Mish was meant to be coming to visit me this afternoon, but after she had a scan this morning she was told that she was going to be induced because her baby was almost ready to come! So her and Dave came to visit for a little bit, but then I was whisked away for a scan on my right arm because of how large it had become.

I was wheeled downstairs and given a doppler ultrasound on my right arm.

A Doppler ultrasound is a test that uses high-frequency sound waves to measure the amount of blood flow through your arteries and veins, usually those that supply blood to your arms and legs. Vascular flow studies, also known as blood flow studies, can detect abnormal flow within an artery or blood vessel.

This doppler ultrasound revealed that I have a DVT within the subclavian and axillary veins where my PICC line was. FFS. Life seriously does not want to cut me a break!!

Since I've been in hospital, I've been on a blood thinner called Clexane which all hospital patients are given as standard. Now I have this DVT, my dose has been increased to 100mg. I have to have this for 3 months. That means when I get to leave hospital, I'll have to inject myself in the tummy - yuck!

The clexane injection

Right Side Drain, Pleurodesis & a Heart ECG

11th June - The chest x-ray that I had on the 7th June shows that I have a right side pleural infusion which is growing in size. FFS. That means I now have to have a drain on the right side. Please life, just cut me a break! I tell the docs how nervous about this I am given the amount of pain the last ones have caused me and that I really want the top dog to do it . They tell me that the person doing this is the best at it in the hospital. This alleviates some of my fears. It gets to just before lunchtime and Dr A appears, ready to do the procedure. As before there is a lot of anesthetic, a ruddy great needle, and a lot of prodding and poking. It really hurts and one of the nurses gives me her hand to hold which is very sweet. Thankfully this is all in one place rather than the troublesome po

The drain in situ

The drain plus a random bruise that's appeared!

Ouchy 😢

Just as it finished, Mish arrived with some McDonald's nuggets! What a treat after hospital food for so long! LOL. The doc wanted to check the drain was working so she allowed it to drain out slowly. Once 500ml had drained out the doc clamped it for a few hours. It felt pretty weird and I felt short of breath for a little while. Mish was there for a good few hours though so we were able to have a good chat.

Once Mish left, the doc unclamped the drain and more fluid came out, it was a much darker bloodier looking colour than all the others had been. I was sat in my chair in quite a lot of pain, it kept coming in waves and would make it hard to breathe as it was so painful. I was trying to ride the pain out but the nurses spotted that I was in a lot of pain and told me to stop trying to be brave and to take painkillers as that's what they are there for! They administered some strong painkillers and something to almost knock me out so I could sleep through the pain.

The liquid coming out into the drain container

I feel like I need an "I was brave today" sticker like Oscar got today after his jabs!

I manage to sleep for a little while, Mum, Colin and Alex arrive and I keep whimpering and crying out in pain. It's so bastard sore. I'm allowed some more pain relief and again I refuse to eat because it's just too much effort through the pain. Alex goes off in hunt of something bland and basic and comes back with chips and baked beans! I manage to eat some of it.

I then have another xray to check the fluid on my right lung.

By the end of the day, my right lung drain has drained out ~900mls. I have to try and sleep overnight with this bugger in. At least it's coming out tomorrow. Huzzah.....

12th June - 

Happy Birthday to my amazing Mummy, I love you very much!

Through sheer exhaustion I manage to sleep. The drain has hardly drained any liquid overnight so after an ultrasound, the docs make the call to leave it open all day. I sit in my chair most of the day struggling to breathe. I have intense pain at drain site and down my neck. The pain down my neck makes it even harder to breathe. I'm not brave this time, I ask for all the painkillers I can have and I drift off into a deep sleep!

When I wake it's about 17:30, the drain has let out a total of 1,200ml. The drain now not coming out tonight 😭 There is nothing more at all showing on ultrasound/xray, however the team leaves at 6pm 😭 They don't want to rush anything or for it to be taken off by a not fully competent team (the on-call team). That means I am scheduled in for sure for tomorrow. I will have another ultrasound to 100% check there is defo no more fluid to come out, which Dr A (Queen Doc of doing this), has said there will not be. Then they will taken drain out and do pleurodesis all in one go. So by me pushing for the top people to work on me it means I have to wait as they are obviously in demand. However I would prefer to wait a bit more and be done perfectly rather than rushed and it go wrong or hurt more!

Karen my ward-buddy is leaving tonight and although I am pleased for her, I am bloody sad as I will miss her!

13th June - I have a bad nights' sleep, it's so hard to sleep with the drain in, I managed to rip the purse string suture, but luckily it doesn't bleed everywhere. At 09:15, Dr A arrives and mercifully takes the drain out which has definitely stopped draining liquid now. She then puts in the talc for the pleurodesis and then stitches me up. The pleurodesis makes me cough as it feels very tight in the chest as the lining starts to stick together.

My arm that has the PICC line is now enormous and the nurses take out the PICC and arrange for a scan.

Later that day, Mum and Colin arrive and then an oncologist comes to my bed (with my BCN) who I have never met before and tells me that I will be starting on weekly paclitaxel. She doesn't introduce herself or give me any sort of calming feeling. My back is immediately put up and I ask my BCN Tracey for some more information on paclitaxel and cape so I can make an informed decision. I am pissed off. How dare this onc who knows nothing of my story just waltz in and tell me what I am doing. It's my life and my decision. I think she can tell this so she makes a hasty retreat!

Then a lady comes to my bed and I have a repeat echo on my heart to monitor the effusion which last time showed 0.3cm pericardial effusion. Fingers crossed no more liquid has built there.

After Mum and Col have left, Caroline and Rosie appear and they bring pizza 😊

Clots All Round

9th June - I woke in the early hours and my whole bed sheets were covered in blood! Obviously I panicked like crazy. I had blood all over my face. It turns out in the night I had had a horrendous nosebleed. Because I’ve been on blood thinners, it was obviously worse than a normal nosebleed as it takes far longer for clots to form than normal. The nurses wiped up my face and changed my sheets. I know it’s only a nosebleed but I was bloody (haha) terrified when I first saw it!

After a shock first thing, it was lovely to see Caroline for lunch. She brought me in a very nice lunch. She brought French bread, kettle chips, couscous and then scones with clotted cream and jam! After eating hospital food for so long, it was a real treat!

Later that afternoon, I had a Skype session with Amy. Skype is so brilliant as it was like Amy was there in the room with me! All we can’t do is hug....

My arm that has the PICC line in is getting more and more red around the dressing and also becoming more puffy. Really hoping there’s not a DVT in there!

10th June - This morning Amanda, Paul, Rob, Sarah and Chris visited. Was lovely to see them all. We had a good chat and then we went into one of the many hospital gardens and sat in the sunshine.

In the afternoon Mum and Col visited and we spent time chatting and some more time in the sunshine.

P.S. Caroline, Clarke family and Mum & Col, not calling you clots! Just thought it was funny 😜

The Next Best Thing

7th June - I had a very painful night, I was dosed up on IV painkillers and was screaming out in pain a lot of the time. My back is so so painful. God this is so shite. 

Mid-morning I have a chest x-ray to see if the fluid on my lung linings is behaving or not. After my chest x-ray Michelle and Rob come and visit me. I have been missing Fagin and Poppy terribly and the lovely Michelle brought me a cushion as a pressie! She said if I could not go to the borders then she would bring them to me in cushion format! The next best thing - thanks so much Mish - you rock!

My awesome cushion!

That evening, the book club girls come to visit. Because I can't go to book club at whoever's turn it is, they bring book club to my bedside! We chat about the book for a tiny bit and then spend the rest of the time gossipping. Such a nice idea - thanks girls.

That evening I have the most dreadful sleep. In the ward next to mine there is a man with severe Alzheimer's. He calls out his wife's name over and over again. He also shouts "nurse, nurse, nurse" constantly. The nurses go to him and he asks where he is and why he's there. They gently explain but then 5 minutes later the same thing happens again. It's absolutely heartbreaking, but selfishly it's also annoying as i really need to sleep. I feel hideous saying that. He then asks to leave, many many times. He starts offering bribes to the nurses and to people each side of him. People tell him it's not possible and he starts to get really angry. He starts talking about killing people. He talks about his past as a "gangster" and says he is going to get his people to follow everyone in his ward and the next and kill them. He also says he is going to "start killing at random unless he's let out". Now I know this is his Alzheimer's talking and that he is unable to get out of his bed, let alone kill anyone, but it's still a pretty scary thing to be listening to.

8th June - Today I was determined to actually make a real effort with my walking. I manage to walk (with my walker) all the way to the end of the ward. I am bloody proud of myself.

Because of the amount of blood i keep having taken from me, I asked one of the nurses to find out what my blood type is. No reason other than curiosity. I'm 34 years old and have never found this out, so i might as well take the opportunity where I can. Turns out I am B+, the same as my mum .

Back in February, I had an appointment where I found out I had neurofibromatosis type 1. The doc at the time said it was highly likely I had it based on my skin. However they wanted to test me to 100% confirm. Today I got the news that they were somehow able to test the 3 tiny drops of blood they got from my shitty veins and it's been confirmed that the reason I have NF1 is due to a gene mutation. It changes zip, but I suppose it's nice to have the explanation. Dr P will love this for her write up of me for her case study!

Spinal Radiotherapy

4th June - Dr P comes to see me first thing in the morning and she agrees to palliative rads on my spine. This is to help alleviate pain rather than to destroy cancer cells.

My skin mets are getting worse each day 😟 It's very worrying and it feels like the cancer is eating me alive. Each morning it appears to be spreading more and more. It's terrifying. All I can think is that if it's doing that to my outside, what is it doing to the inside of me.

Later that evening, Alex, Mum and Colin visit. They help me with eating my dinner. The pain I'm in is just so bad that trying to eat is still very hard. After dinner we go for a walk and bump into Dr P, she takes me to her appointment room and I sign the consent form agreeing to have radiotherapy. I'm told that as it is a one-off blast, it will probably be very painful for the next few days and it may also upset my stomach because of the location of the blast.

5th June - Mish visits first thing and we have a good gossip. Ahead of the CT planning, I'm given a very strong painkiller to enable me to lay flat and still on the bed. I'm also given a Clonazepam to help calm me. Mid-afternoon I am wheeled down on my bed to St Luke's Radiotherapy Centre. There they roll me from my hospital bed onto the radiotherapy bed. I'm moved into various different positions and drawn on with marker pens. The team then disappear into their room away from the radiotherapy beams before returning and giving me little tattoos to make sure the correct area is targetted.

My PICC line arm is reacting more and more and is also beginning to swell 😞

My allergy to the PICC line dressing

6th June - Today I had my radiotherapy. I relaxed in the morning and about lunchtime I was taken down to St Lukes for the radiotherapy. I'm rolled from my bed onto the radiotherapy bed. I have to lie on my side slightly and then I have the radiotherapy. The rads itself doesn't hurt. It's all done within an hour, I'm wheeled back to my bed in Tilgate Annexe and I fall asleep. I end up sleeping through dinner. When Alex, Mum and Colin arrive later that evening, I am in severe pain. It is actually making me writhe and scream out. Alex goes and finds me something to eat and one of the ward nurses takes it upon herself to completely look after me. She gives me as many painkillers as I am allowed, as often as I am allowed them. In the end, I am so dosed up I fall asleep. I feel like I have only been asleep for a few minutes, so when I wake up I message Mum to see if they have just disappeared to the canteen. Turns out they had actually left 2 hours previously! I am in so much pain, I just hope it's worth it!

A Painful Weekend

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.

Chicken Teriyaki

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....

Pinch, punch. And a death.

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.

The PICC line

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. 

Onwards

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!

*Edit* I found out today 13/08/18 when I was having lunch with my friend Luke, that he came to visit me on this day too. I have zero recollection of him being there but apparently he was! Sorry Luke! xx*

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! 

Ouch!

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.

Happy Birthday

A super, squishy big love filled birthday hug to my amazing nephew Oscar