A Mighty Hike

Guest post from Rob.....

First Cape

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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