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!

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.

The Greek Dyno-Rod

⚠️ Epic post alert ⚠️

We had been in the Isle of Wight for a few days and I noticed I was getting more and more breathless.

Rob, the doggies and I went for a lovely coastal walk along the cliffs, but it involved scrambling, stairs, stepping stones, pebbles along the beach and steep climbs. The end of this walk was a steep hill, and at the top I was so breathless I thought I was about to vomit and/or pass out.

In the end, just walking from the bedroom to the toilet in our holiday flat was leaving me out of breath. Rob made me go to a local GP on the island and thank goodness he did.

I got to the GP and she examined me and then requested I do a blood test called a D Dimer as she was worried I might have a pulmonary embolism! They were able to do it then and there in the doctor's surgery. So they did the test. The result came back in 20 minutes. Normal results are less than 500µg/L and mine was 1,200! My heart rate was also about 135. That meant a trip to A & E.... 

We rushed back to the flat and let the doggies out to pee and then headed off to the island’s only A&E in Newport. We waited for a small amount of time and then after triage I was taken straight to the ER beds where I had to have a blood test and a cannula.

Then I had an x-ray of my lungs. Basically the result was that I didn’t have a pulmonary embolism but I did have something called a pleural effusion:

Pleural effusion, sometimes referred to as “water on the lungs,” is the build-up of excess fluid between the layers of the pleura outside the lungs. The pleura are thin membranes that line the lungs and the inside of the chest cavity and act to lubricate and facilitate breathing.

Image from pedilung.com 

So that explained my shortness of breath. Basically as the effusion grew larger, it meant there was more fluid in the lining. It meant it was getting harder for my left lung to expand and therefore more difficult for me to breathe. There was chest pain because the pleural lung was irritated. 

The xray results showed that I had 2.2l of fluid on my left lung! That’s over a big bottle of cola in my lung. Think how heavy that is. And I’m only 5ft1! No wonder I was breathless and sore....

The procedure to get rid of the liquid is called a thoracocentesis, basically they insert a ruddy great needle into the pleural space around my lung and then drain off the fluid. Sounds simple enough but pretty ruddy painful. Now you should understand why the post is named Greek Dyno-Rod!

The only drain option on the IoW was a slow drain and I would have had to have been in that hospital until Sunday. Our accommodation was due to run out on Friday, this was all happening on a Wednesday. We had the dogs so obviously would have had to have found dog friendly accommodation. Therefore we put our foot down. We wanted to travel home. The doc was unsure as if there was an issue on the ferry I would have had to have had a helicopter called out! He asked his consultant who gave us the okay to travel. As soon as we got the okay and they had contacted East Surrey to arrange the op there we were out of there!

We rushed back to the flat, Rob heroically packed it all up and we drove to the ferry terminal, crossing fingers all the way that they would let us on. Thank goodness they did.

We turned up bright and early at East Surrey on Thursday only to be told there was no-one there that could do the op!! As I was breathing without oxygen they told me to go away and come back the next day! So as we were on holiday still, we made the most of it and went and saw the new Avengers movie 🙂

Try again! Friday we turn up at East Surrey and this time they say we’re on the list and can come in! Rob and I wait for a while and then I’m sent for another x-ray. Normally when you have a scan of any kind the people taking the images are pokerfaced and say nothing. This time, the man takes the image and then says "how long have you felt this poorly?" I say "oh a few days, I know about the fluid as I have had a scan already". He then says "Ah okay, I was wondering! Most people complain about fluid at 300ml, you have 2,200ml; you're hardcore!"

I then go back to Kingsfold Unit, wait for about an hour and then go through to a side room. The doctor and a trainee explain the procedure, ask me to sign a consent form, give me an ultrasound over my ribs so they know where to shove the ruddy great needle and it begins!

The doctor gives me an anaesthetic and some oramorph and then puts the 15cm screwdriver type needle into the pleural space and attaches a drain. Loads of liquid begins to drain out and I'm taken to the recovery ward.

Just a small needle.... 

The liquid continues to drain out and then the pain begins. As the liquid dissipates, my left lung begins to reinflate. The pain is fecking hideous and I roar and shout a lot. I also cough continually as the air begins to fill back in. It hurts so much.

The doctor comes over and gives me some more oramorph. The morphine makes me feel groggy and I have a sleep. About an hour later I wake up and we're told we can go home.

Here's a photo of me smiling (wtaf!) with the drain in, the 15cm needle and the liquid, which I promise you is not pee!

Thank you Mish xx

CT Scan

Colin drove me to East Surrey for my early doors CT scan. I had to be there for 08:40, which meant rush hour traffic - lovely. When I arrived I had to drink a litre of water. I was asked to change into the lovely hospital gowns and was taken to a waiting room.

After about 10 minutes I was called through, I lay down on the bed, fearing the worst after last weeks' scan and they then told me it would only be 15 minutes long - huzzah!! They also got the cannula in first time - double huzzzah!

I had the scan with contrast which was the giant polo that I have had many times before and then headed back to the waiting room. Once I'd peed and showed them I was having no reaction to the contrast, I was allowed home.

Results from this and the MRI are due next Thursday. Scanxiety time.

The Operation

Rob drove me to East Surrey hospital and we arrived at 7am. Just as we were checking me in to reception, I was called by a nurse to register me. She went through various questions like allergies, got me to sign a consent form, measured me for my lovely anti-DVT stockings, took my blood pressure and got me to wee into a cup.

Then I met with the two surgeons (I had met one of them at the gynae appointment just 11 days ago) who explained the whole procedure to me. I found out the official name for my op is a bilateral salpingo-oophorectomy which is where they remove both your Fallopian tubes and ovaries. My surgery was scheduled to be laparoscopic (aka keyhole) but they did warn me that if anything went awry (bowel damage or anything unforeseen) it would need to become open surgery. The surgeons explained that they would make two cuts in my abdomen and one in my belly button. They would then put a tiny camera in one of the incisions and do the surgery through the other holes. The camera would transmit an image onto a big screen in the theatre for them to work from. They take the ovaries by almost putting them in a fishing net and then pulling them out through each incision. Then they would stitch up the holes using dissolvable stitches and that would be that. Christ.

Next stop I met the anaesthetist who explained to me how that would work, I've had two GAs before so I'm used to the procedure, but I told her I had shite veins and also I was sick both times before when I came round from the GA so she noted that and said she would make sure that I would be given an anti-emetic.

Then I was sent back to the waiting room and was told I was due in third so could expect to be waiting until about 11am. Rob and I waited for about forty minutes and then at 09:10 I was called for the op. Rob and a nurse walked me to the pre-op waiting room, Rob had to leave me here. Through tears I kissed him and he left.

I went into the pre-op ward, gave my details and I then had to change into a gown, take out my contact lenses and put my lovely stockings on. It was then that I fully burst into tears as the realisation of the imminent op hit me. The nurse there was lovely and chatted to me for a bit and then an anaesthetist came and wheeled my bed through to the anaesthetic room. There the anaesthetist that I'd met earlier put a cannula in my hand, asked me what job Rob did, what I did, about Denbies (!) and the next thing I knew I was waking up on the immediate recovery ward.

My throat hurt like anything from the tube being down there and my right arm was incredibly sore. I felt nauseous so they gave me the anti-sickness drug straight away and then little sips of water. I vaguely remember people speaking to me and one of the surgeons telling me everything had gone well. After some time passed, I have no idea how much because I was in and out of being with it, I was taken to the main recovery ward. I asked them for my glasses because not being able to see was just compounding my confusion.

On the recovery ward I felt very groggy and my stomach was rock hard. In order to access everything during the op, they fill your abdomen with air, the only way to get over this is to apparently fart as much as I can over the next few days! My arm was feeling more and more painful and then the anaesthetist came to see me. Apparently during surgery my veins weren't playing ball so they moved the cannula to my wrist, which subsequently leaked into my veins! So my poor veins are bruised inside.

The ward sister then offered me tea and a sandwich, but where my throat hurt so much, I just wanted something really soft, so they brought me a jelly. I managed the jelly and then Rob appeared! I was so happy to see him. I hadn't realised but I had actually been in surgery longer than expected, it's supposed to take about an hour but mine was more like 2. Rob had been waiting at home for the phone call to come and get me and as almost 4 hours had passed (including my time on the ward) and he'd still not had a call he just turned up. Then my Mum appeared too and I cried. I wasn't allowed to leave until I'd been to the toilet so once I'd passed urine I could go. Mum and Rob helped me get dressed, Mum brushed my hair and then I hobbled to the car.

Rob drove home very carefully, dropping Mum at CH station to get her car. He helped me up the stairs and I got in to bed. I had mashed potato and baked beans for dinner and don't really remember much more of the evening other than my arm being unbelievably sore and my stomach being rock hard.

Another step done, goodbye cancer fuel.

WLE #2

Today I had my second WLE which I needed because they didn't quite get clear margins on the first op. Mum, Rob and I checked in at 07h00 and this time (because of the massive wait last time!) had prepared ourselves for sitting in the waiting room for a long time.

I was taken to register with the nurses at about 07h45 and as last time, she ran through various questions with me & measured me for some sexy anti DVT stockings and got me to wee in a little cup.

About 08h30 I met with my surgeon who explained exactly how the operation would work. Then I met with the anaesthetist who explained to me how the GA would work. He said they would put a cannula in my hand & then I would have the GA injected. He explained my arm would ache a bit & then I would fall asleep. As before, I told him that I was nervous because my veins aren't very compliant now after having had chemo, & he assured me they would be gentle! I also told him that last time I came round from the operation I was sick and he said they would give me extra antiemetics this time.

I then sat down for about another 45 minutes and then was called in to have my operation. It was a bit of a surprise as last time I didn't go through until about 14h00. I was taken through to a room to get changed. I had to leave my knickers on but take everything else off, put on my sexy stockings, hospital gown and then also my slippers and dressing gown which you are told to bring to hospital with you.

I went upstairs (in the lift) to surgery and then lay down on the hospital bed. The anaesthetist talked to me for a little bit and tried to put two cannulas in my hand (where the veins were not playing ball) and then on the third attempt my veins obeyed. The GA felt a little cold going in and then the next thing I knew I was waking up (it was 10h50 so the operation lasted just over an hour) on the recovery ward.

It felt like I was waking up from a massive dream and the first thing I asked was if I had a drain in, and I didn't - woo! I had an oxygen mask on for about half an hour and was also given some painkillers by drip because my wound felt a little sore. After my mask came off I was given some water, and then about 40 minutes later I was taken to the day surgery ward.

At the day surgery ward I was given a sandwich and a cup of tea and told to rest for a while, and that Mum and Rob could come and collect me about 14h00. One tip I'd give anyone reading this, is to take something to read, because just lying there waiting is very boring! Last time, because of the norovirus outbreak and lack of beds I had to just wait on the recovery ward (rather than go to the day surgery ward) and therefore I thought the same would happen again this time so brought nothing to read with me, mistake!

The lady from Medi-Home came to see me and said they would visit me at home for the next few days until they officially discharged me.

Once I had got my strength back up, I got dressed and sat in the chair in the day ward so that my bed could be made up for the next patient. Mum and Rob turned up about 14h00 and we waited for my BCN Carole who had a brief chat to me and gave me my follow-up appointment letter for 01/02/13. Fingers crossed for clear margins this time!

By 15h30 I was home, much better than the 21h00 last time :)

The Op

Mum, Rob & I checked into the hospital at 07h00. We were there for about 15 minutes when a nurse came through & explained how the day would work. Then about 07h30 I was taken through to register with a nurse who ran through various questions with me & measured me for some sexy anti-DVT socks. Then I met with my surgeon's registrar who explained exactly how the operation would work.

About 09h30 I went down to the x-ray department. I had 2 mammogram photos taken & then 2 local anaesthetics (ouchy!) in lefty. They then inserted 2 wires, one in the area of the marker coil, the other in the area of microcalcifications. Feeling pretty tender I walked back to the waiting room and about an hour later I met with the Home Care nurses. The HCNs will be coming out to the flat for as long as I need them to check the wound, keep an eye on the drain, dressings etc & once they are happy I can officially be discharged.

About an hour later I met with the anaesthetist who explained to me how the GA would work. He said they would put a cannula in my hand & then I would have the GA injected. He explained my arm would ache a bit & then I would fall asleep. Having never had one before, I explained how nervous I was & he told me I would be very well looked after.

Then I met with my BCN Carole who gave me a pressie (shower gel, tissues, Polos, a pen, notepad, chocolates & a Get Well Soon card) & explained next steps (exercises to strengthen the shoulder & arm & that I was to relax lots) & that I might be a bit smurfy (blue face for a day or two, smurf wee for a day & blue boob for between 2 weeks & a few months) after the op due to the blue dye used in the SLNB.

About 13h30 I was feeling pretty hungry & thirsty having been nil by mouth since 20h30 last night. Then I was called to go for my operation. Eeeek! I kissed mum and Rob & walked down the corridor to get changed into my hospital gown, dressing gown, sexy anti-DVT socks & slippers.

I then walked down the next corridor & into the operating theatre. I lay on the operating table & they tried twice to put a cannula in my hand before finding a good vein. Once they had it in the anaesthetist chatted to me about my job & the next thing I knew I was coming round from the operation.

I don't remember falling asleep from the GA so it felt bizarre when I came round to be told it was all done. I vaguely remember Rob calling the recovery ward about 16h25 but was so foggy I couldn't be sure (later found out he did call & I wasn't dreaming). I was surprised to see I had a drain in as with WLEs you often don't need them but they told me I had a fair bit of oozing (yuck!) during the op. not sure how long it'll be in for but I can ask the HCNs tomorrow. After about 5 minutes I was sick a few times but this is a fairly common SE of having a GA.

The recovery team bought me water, a cup of tea, a sandwich & some jelly & ice-cream. I had a pretty sore throat from having had a tube in my mouth so couldn't really eat the sarnie but the ice-cream was great! Then after dozing a bit more I was taken downstairs (about 18h30) to see mum & Rob.

After waiting in the discharge lounge (sounds gross!) for about 15 minutes & having a smurf wee I was free to go home :) Michelle & Leanne kindly did Fagin duties so there were no stresses there whilst we were away.

I have a follow-up appointment on the 4th January to ensure they got 2mm clear margins otherwise I'll need another op. Fingers crossed!