The End

Written by Rob Clarke, Jo’s husband ...


So, I find myself where I knew one day I would...

Jo - my wife - died on the 23rd September 2018. She was with me. With her parents. With her friends.

I promised her I would finish her blog - she found great comfort in sharing her story with you, her readers.

So, I have published all her draft posts - of which there were many. Forgive the random or incomplete nature of some of them - but they are as I found them!

But I also wanted to write one final post - in her style (matter-of-fact. Direct).

So, what happened?

As you know, her disease had spread to her pleura, by way of pleural effusion. Also she had pericardial effusion. Both of these were malignant.

Towards the end, Jo's skin mets had become very tight and sore. They were literally squeezing her and it was very uncomfortable.

A week before Jo died, it was clear to me that she was not right.

She had lost the ability to swallow food, without choking horribly on it. She was also very, very tired and in bed most of the day.

Jo left the house in an ambulance and, on a gut or instinctive level, I knew she wouldn't come back.

When she got to A&E, doctors were trying to work out what was what. But they kept mentioning "End of life care", "wishes", "DNRs".

The week was tough.

Jo couldn't swallow liquid. So she was starving to death. I forced her to take a feeding tube - an unpleasant process. The general view was chemo was needed urgently but she was too weak for it. She was on oxygen too as she wasn't getting enough saturation.

On the Saturday I arrived early as Jo sent me a message by text. This was 6 days after she'd be admitted.

"Oxygen 65%. Vety illll"

I rushed in, alarmed by her spelling, amusingly, knowing it would be bad if that was the message!

I was told to make the call. It was touch and go.

I summoned friends and family to sit in vigil with her.

The doctor showed me her scans - from a week or so ago, and now. The lungs had gone from slightly milky to white on one side. This was pleural spread.
On the other lung, she had an aspiration pneumonia.

The trouble swallowing had been attributed to a metastatic fluid build up in her lymphatic system around her throat. It was choking her.

A waking hell followed.

Jo was conscious on the Saturday, but on a syringe driver, maximum oxygen and was confused, muddling her words and very restless. She was clearly suffering.

I slept by her overnight. The consultant shook me awake in the small hours of the Sunday and said "it's time". She was holding Jo in her arms, with her breathing slow and rattling terribly, saying "there, there poppet. There there..."

But then Jo kept going.

On the Sunday, she didn't really re-appear. She was staring into oblivion, rattling away.

The medical team were reducing her oxygen as it was acting as life support.

By 7pm, they'd turned it off. Jo took two more breaths, and died in my arms.

She finally looked at peace. Her mum and step-Dad were there when she died, and was shortly joined by her father, brothers and sister and best friends.

It was over.

We laid Jo to rest at Clayton Wood natural burial ground on 17th October 2018.

She wanted to be there. And it was a lovely day, despite the reasons why.


I wanted to share this with you, in her memory. Despite the horror of it all, there is a key takeaway for me - and I hope for you.

Jo Jo's journey ended in suffering and tragedy. BUT. And this is critical.... Not everyone on this path ends up with this ending. Don't lose hope - all of you fighting this terrible disease. Fight. Be strong. Celebrate your lives. Beat it.

https://joanna-clarke.muchloved.com/




Robert Clarke.

End of Cape Cycle 2

Hello All,

Apologies for mass messaging and for essay!

Mixed bag at today's oncology meeting, but good on the whole.

Oncologist is very happy with my increased mobility. I have not used my zimmer frame for about a month now 😁

Skin wound still there but improving, should heal properly once I finish the blood thinners (14th September).

Chest area where skin mets were worst is vastly improved, in fact they are almost gone!

New skin mets have appeared under my right armpit and under my right arm. Swollen lymph nodes have led to new lump on ridge of shoulder and neck.

Am also having trouble swallowing, perhaps due to the neck nodes, but could also be an infection so I have 5 days worth of fluconazole to see if this improves things. https://www.healthline.com/health/esophageal-stricture-benign#causes


She is happy for me to return to work slowly following a phased return, as long as they are flexible with hours and location.

Bloods misbehaving and calcium is too low, so increasing my dose of Ad-Cal to look after this. That also means bone strengthening denosumab is delayed for a week as that reduces calcium levels even further.

Will continue on same capecitabine dose, have repeated blood test next week and if they are OK then will have denosumab next week too. Will have CT scan in about a fortnight, this is planned as I have them every 3 months to see how things are doing. This will also look at my neck

Bloody Bloods!

Redo - went Monday bank hols. Cannot test bottle 2

Spa Day

Day with Mish, so lovely

End of Cape Cycle 1

Meeting with Eva. End of Cape Cycle 1

verything went well at oncology. They're pleased with how I'm tolerating treatment and agree my skin mets have reduced 🙂 Onto the next cycle 😁xxx

REducing from 2,150 to 1,650

Bloods via Portacath

Portacath bloods

Multiple Medication

fghfghfhfygh

My super useful medication pots

So many pills!

Clexane - I have to inject this bad boy into my tummy every night 

My Poem Goes Viral

Poem Breast Cancer Care

Happy Birthday To Me!

There were times over the past couple of months when I didn't think I would see this day! 

Happy Birthday to me 😃

Portacath Fitting

I had a really bad night last night, stomach cramps, sweats, severe nausea and (despite the domperidone) actual sickness. This is all thanks to the cape. I still felt sicky in the morning and had to force myself to get up and showered for going to have my port fitted.

At 11:15 Amanda, Lil and Grandma drove me to Royal Surrey Hospital in Guildford for my port fitting. We got there at 12:30 and Amanda took me in in a wheelchair. We checked in and then after making sure I was comfortable she headed off. I then waited about an hour before the nurse did my obs and fitted a cannula (using a dressing I wasn't allergic to - hooray)!

A cannula with a dressing I'm not allergic to!

So what actually is a port?
A port(acath) is a device which is inserted under the skin to allow easy access for IV injections and bloods. The Port is about the size of a walnut and has a chamber with a membrane that self-seals when punctured with the special access needles. Source: Royal Surrey County Hospital Info Sheet

I need one because my veins are shockingly bad. The right arm is bad anyway but still has the DVT (yay!), and the left arm is the one that has had lymph nodes removed so is a no go. Basically it will make my life a hell of a lot easier every cape cycle where I need bloods taken.

I then had to wait half an hour or so before I was taken down on my bed to the operating theatre. They took my obs and moved me onto the operating bed. Dr L explained the procedure and I signed the consent form. 

They then injected me with some strong painkillers and anaesthetic and the procedure started. I was kind of asleep and kind of awake. I could hear the team all moving around, bleeps of machines and touches on my body; but I couldn't feel any pain or actually open my eyes.

Next thing I know I'm coming to properly and I'm back in the room Amanda dropped me off in earlier that morning. The nurses bring me a sugary tea and a yoghurt. They make me wait half an hour, tell me to get hold of my lift home and then take my cannula out.

Post op selfie!

Amanda and Paul then arrive to take me home. We get into the car and Amanda has bought me some yummy fruit from M&S which I was really craving and I wolf it down! They drop me back home about 19:15 and Rob and I chill on the sofa until bedtime.

A Mighty Hike

Guest post from Rob.....

First Cape

aasskljdaslsjdaljd

So I have to take a lot of pills! This is just in the morning, there 

are 15 more that I take throughout the rest of the day! 

The Cape Crusader

Dr P, MRSA swab, Nandos, Chemo, Denosumab, Movie Night

Lower open area clean and not purulent. Slight bony tenderness and effusion around knee. No xray as had so many scans. Able to weightbear and improved since Monday.

Few further days antibs given happt to start Cape tomorrow.


https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/going-through-treatment-breast-cancer/chemotherapy/capecitabine-xeloda

Lymphoedema

Vampire Time

To add: ?? Dr P came and reviewed my skin infection. Heart rate raised and CRP up however i was efebrile. Groin wound continues to slowly heal.


After my fall, we made our way to East Surrey Hospital for my blood tranfusions with my "just in case overnight bag". Rob dropped me at Kingsfold Unit at 8:20 and went off to make his Monday morning work call. I hobbled into the lift, leg really hurting after my fall and checked in. Luckily they said I could go straight through to the room where they would be giving the blood rather than sit in the waiting room which meant I was able to bagsy the window seat!

They wanted to cannulate me straight away and I had to explain the saga of not the right arm because of the DVT, and then that the left arm I had had lymph nodes removed. However, we had to go somewhere, so the left arm was the only choice. Mercifully the lady doing the cannula gets it in first time. They then take about 6 phials of my blood to test. 

Another day, another cannula!

Various doctors, nurses, my oncologist and my breast care nurse come and take a look at the skin infection in my groin and pubic bone. The reason they want to look is because my infection markers are raised and therefore they need to decide if they want to stop flucloxacillin and move me onto something stronger. The infection markers are measured by looking at something called CRP:

C-reactive protein is measured in milligrams of CRP per litre of blood (mg/L).Normal CRP levels are below 3.0 mg/dL.

Mine is 127mg/L! Now cancer can cause these to be raised away but this is a pretty high reading. Bugger. However, they decide that the area that was infected actually looks improved from the other day, they also say that the other area looks like it's on the mend. They want me to carry on with current antbiotics and the bloods can get underway. Hooray!

They also look at the new area I have on my arm, caused by the dressing from the other day. They decide that this is not infected, and is a reaction. 

Sorry gross image incoming..... 

 

My allergic reaction to the dressing on my arm

The rest of the blood measures from the test are fine and it currently looks like I'll only be having 2 bags worth of blood. That, coupled with no IV antibiotics means I hopefully won't be staying in.....

Rob goes and finds us a hospital picnic for lunch, he returns with various goodies,including chicken teriyaki - lol!

It's now 13:30 and the blood team bring my blood through. They pop it on the drip stand, flush my cannula, attach the blood and here we go......

Bag 1 of hopefully 2!

An exhausted moi hooked up to the blood

The first blood bag will take 3 hours to go through. They have to run it that slowly as it's the first time I've received an infusion, so they will need to monitor me very carefully. The first 15 minutes are crucial as it's when you see if your body will reject the blood or have a reaction. Luckily I have neither and therefore Rob heads home.

I spend the next 3 hours reading, blogging and playing on my iPad. Then it's time for a quick toilet break, they want to do a urine dip test and I'm hooked up to bag 2.

 Bag 2 of hopefully 2

Because I reacted well to the first bag of blood, they are able to this one more speedily. It takes 2 hours to drain through. They then release me from the blood bag, remove the cannula (hooray) and let the docs know I am finished. The docs then come round a little while later, say my bloods are good enough for me to go and that's it. Hooray!!

I head over to Tilgate Annexe to see my friend Karen who has been admitted again 😟, she's bought  a blueberry cheesecake slice for each of us and she also bought me a lovely Ted Baker smellies set! We have a quick gossip and then Mum and Col arrive to take me home.

First ever blood transfusion - done!

A Bad Fall

A Painful Day

My day has been pretty awful, I couldn't sleep last night sadly, was awake until 4am. Have finally taken my last dose of the mother fucking steroids though. About 5am i had huge pain spikes and trouble breathing. (The breathing issue we now know is due to the low haemoglobin as less oxygen can be carried around your blood).

I then missed doses of my medication coz I was asleep which meant another pain spike.

District nurse came to dress my skin infection about 2pm which hurt so much because they had to clean the ming first 😭

Got out of bed about 3pm. Then we got the call about my haemoglobin and blood transfusion.

Also they said as I have an infection I need to monitor my temp, if it goes above 37.9 I have to go to A&E. It's currently hovering around 37.7 😞

I just feel like I cannot catch a break. Every time I think I will have a day where I can relax it doesn't happen. And every time I think things are finally going well I get shat on.

It feels like a never ending shower of shit.

In good news, I am now allowed to take oramorph (oral morphine) for pain and a side effect is it makes me sleepy! So I have taken some and I am off to bed to hopefully bloody sleep.

Blood transfusion needed 76 normal 115

Transthoracic ECG, St Caths, Onc Meeting

Today I had a transthoracic echocardiogram (TTE) at East Surrey. This is to check the fluid around my heart which best case we want to have reduced, next best stayed the same. On the scan, we could see there is definitely some fluid still there. On the last one of these I had, the fluid level had dropped. So fingers crossed the fluid we can see on the scan is even less again. 

Next we had a meeting with Dr H at St Catherine's Hospice in Crawley. She was excellent and can help me with lots of aspects of pain management. St Cath's are able to be a liaison point between the oncologist, my GP, the heart team, the physio team etc which will be very useful.

Dr H looked at my leg with the area that I just cannot move and she believes it is a damaged nerve that we can hopefully restrengthen. She has organised a physio team to come to the house to help me with this. This team will also look at my "living conditions" and see if they can do anything to make things easier.

Dr H also told me that my kidney and liver bloods show their function is now totally normal hooray. This means I can take more painkillers as I was restricted before.

Finally she looked at the skin infection and groin area that has been sore. She thinks it is very strange. She says she does wonder if it is some kind of skin mets combined with an infection. She will let Dr P know her thoughts.

Then we had a meeting with Dr P in Crawley Hospital (Rob has done a lot of driving today!) about my skin infection and if I could start chemo tomorrow as planned. When I saw Dr P on Tuesday, she took a swab of the infection, so we're waiting to see what it actually is. Re whether there are any skin mets... She looked at the scans on her screen and is convinced there are no mets in the area. They have not shown up on an ultrasound of the area, a CT of the area and an MRI of the area. She says there is nothing there to biopsy so she wouldn't even know where to take a biopsy from. So this is good news. 

Then she looked at the skin infection. The erythema present around the area on Tuesday has improved slightly but it has not improved enough for me to start chemo because I cannot start chemo with any sort of infection 😓 She wants me to finish the original course of antibiotics plus a few more so it's totally cleared up. That means all being well chemo has been deferred and will start next Thursday instead.

Finally, Dr P said that means I had to have another blood test because the other bloods I had done through the horrid cannula experience will be too old. She told me to have a quick drink of water to help my veins. I got out my Love Island water bottle (thanks Jem!) and both her and the nurse smiled and told Rob and I they were Love Island fans - hilarious!

That meant we had to zoom to Comet Ward at 16:26 for bloods to be taken from my left risk arm. The reason we had to zoom was that the final blood transportation of the day is 16:30 and if we missed that then the bloods would be for nothing. Rob rally drove me in my wheelchair, the chemo nurse raced to get the bloods. Mercifully the hard, sore veins in the at risk arm gave blood on the first go and we made the transportation with minutes to spare!

So basically no chemo tomorrow, but I will collect it on Thursday 5th July and start it on Friday 6th.

Skin Infection, Potential Chemo Delay & Book Club

Meeting with Felicity went well. She has signed me off as sick for 2 months. I have sick note to give to work.

Ultrasound of left groin as area which felt like lymph nodes or mass, US shown no abnormal lymph nodes and no discrete mass but does have pus discharging through the skin. Dr P belives it is a superficial skin infection. 

Given course of Flucloxacillin. If swab shows any unusual bacteria I will need a change in antibiotivs.

Re area in groin. No mass so no additional cancer - brilliant. However, it is an infection, I have a small abcess there. This is a mini fly in ointment. She has started me on a very fast acting dose of antibiotics for the skin infection. If the infection does not clear up by Friday then we have to delay chemo until it is clear because I cannot start chemo with an infection in the first place. This is because the chemo can cause your white bloods cells to lower, putting you more at risk of other infections... She thinks the antibs will work fast tho. We have to cross fingers it clears

#[19:33, 6/26/2018] Joanna Clarke: Re CT staging scan. This is the scan I had to see where the cancer is now and what point we are working from...

[19:33, 6/26/2018] Joanna Clarke: So seeing as I have not had any cancer treatment for the month I was in hospital and I was obviously terrified it was running wild, it's actually not too bad at all. Also, I was going to be changing treatment to E & E anyway because of some progression (never started this because then all the drain issues kicked off), so some of this I knew already. First the good news, the area in my spine that they were not sure was better or worse is actually better than before! It could have been that it was always improved or the radiotherapy that I had whilst I was in hospital improved it, either way it's better - huzzah! Worse is my skin, we knew that anyway. There are new cancerous lymph nodes, 1 under my right armpit and one in my abdomen but Cape will tackle these. There is a mini mark on both my liver and lung they want to investigate but Felicity says it does not look like progression, more like damage from where my liver failed and my lungs were repeatedly bruised through the drains.

So in summary after 4 weeks on no treatment I have improved spine, a few more lymph nodes and the skin mets, which is pretty bloody fantastic xxx

I just imagined it was eating me alive

 So it's amazing really

T 26 - skin scan. Ouch nurse rips. Dr P signs me off. Skin swab. Antibiotics. Use WhatsApp. Harry. Book club. Cheeeese. Photo LI water bottle.

First Fall

Iiiiiiii Sharon

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.