Thursday 1 November 2018

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.

Robert Clarke.

Thursday 30 August 2018

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.

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

Wednesday 29 August 2018

Thursday 2 August 2018

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

Monday 23 July 2018

Multiple Medication


My super useful medication pots

So many pills!

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

Friday 13 July 2018

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 😃

Thursday 12 July 2018

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.

Friday 6 July 2018

First Cape


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! 

Thursday 5 July 2018

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.

Monday 2 July 2018

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

Friday 29 June 2018

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

Thursday 28 June 2018

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.

Tuesday 26 June 2018

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.