Thursday, 27 July 2017

Bone scan, new drug & a bit of a blow

Today I went to Guildford for my bone scan for the trial. First we had a chat with the trial nurse Avril who wanted to see how I was and also wanted to discuss my new hormone therapy drug letrozole. We spoke about my anxieties about eating and my nausea and also about my pain in my left hip and back.

Avril then revealed some sad news to me, the cancer is also in my spine. Fuck. It's in my lower lumbar region. I can't begin to explain how devastated this makes me. I know it won't change my treatment plan, but just knowing it's somewhere else is a complete hammer blow. To me, spine damage means more risk of paralysis so I am beyond terrified.

Then I had to go down to the nuclear medicine room for some bloods to be taken (again from my sore arm!) and have a radioactive injection for the bone scan. Both went without a hitch thank goodness and then we went back up to wait for my meeting with my trial oncologist TC.

We waited for about an hour and then had my meeting with TC. He again waxed lyrical about the wonderful ribociclib drug, gave me lots of advice on nutrition and spoke to me about my fears about the side effects. I also explained how devastated I was to receive the news about my back. He told me  that it really didn't make a difference to the plan and that I was just to control any pain with painkillers. It's hard because I'm so scared about it, but he seemed not to be concerned.

After the meeting, I went down to nuclear medicine for my bone scan. I lay on the bed and the camera came very close to my face. It took about 35 minutes. I could see some images on the screen near me. Now obviously I don't know how to interpret scans but I could see my skeleton and bits on it that were lit up. Last time I had a bone scan I saw loads of lit up areas all over my ribs, I couldn't see much at all there this time so hopefully that's a good sign and means the rads worked. I could still see the sternum shining and a bit in my shoulder area, but the new bit I couldn't see last time that I could this time was my hips and lower back. So with the news I'd just been given about my back, this makes sense. Last time I didn't know I had secondary cancer, this time I see the areas and it's just a case of being more informed.

After the scan I went back up to find Avril who gave me my prescription of letrozole. Earlier I had explained to TC how scared I was about the side effects of this drug. He said that yes I may get some SEs but that if I took the pill that afternoon, by bedtime, cancer cells would be being killed. Blimey.

We got home and I took the first pill. So a difficult and overwhelming day, but at least the systemic fight has started.

Monday, 24 July 2017

CT Scan

Today is a week since my operation, I'm recovering physically and mentally a small bit each day but it's been very tough going.

I had yet another scan today, a CT scan at East Surrey. This one is to establish baseline results for my trial. We got there for 09:30 and I was ready to drink my 600ml of water in half an hour to ready my body for the IV iodine when I was called into a side room. "Mrs Clarke you need to have a blood test,  we need to make sure your renal function is ok, it has to have been in the last 6 weeks and the last one we have for you is 7 weeks old". Me, bugger. Because I've had lymph nodes removed in my left arm and therefore am at risk of lymphoedema in that arm, it always has to be my right arm that's used for bloods, IVs, blood pressure tests etc. I.e. My sore and painful arm.

The nurse there tries to take me blood but my veins aren't playing ball. After being stabbed in my poor sore arm, I go to phlebotomy where they get the bloods, it's sodding painful though. We then head back to the scanning waiting area and wait for a while until the bloods come back. Eventually they do, all ok and I can start drinking the water.

I'm then called into the CT scanning room, I know the drill, asked lots of questions, I try not to scoff/cry when they ask me if there's a possibility I could be pregnant.... I'm asked to lie on the bed and the team leave. The scanner whirs around me, takes a few images and then the team come back in to the room and cannulate my poor arm. The iodine dye is injected and I feel like I've wet myself, totally normal apparently:

When the iodinated contrast is injected, most people will get a strange metallic taste in the mouth and feel a warm sensation through the body. This warm sensation may concentrate around the groin or buttock region and can feel like you may have wet yourself, even though you have not. Do not be concerned if this happens, it is a common sensation and usually goes away within a couple of minutes.

I then have a number of images taken and have to hold my breath at certain points. After about 10 minutes it's finished. They remove the cannula from my poor pin cushion resembling arm and I can go home. I have two days' respite now and then on Thursday I have more scanning and tests. Tomorrow and Wednesday I need to try and recuperate some more.

Tuesday, 18 July 2017

Post-Op Recovery

Woke up this morning feeling very weird and spaced out. My arm was super sore, red, hot, swollen and I couldn't bend my fingers. I spent most of the day with ice blocks wrapped around it but it wasn't helping. Because of the building work being done on the house, I spent the whole day in the bedroom. Eventually when I emerged downstairs at 17:30, I asked Rob to call the GP for me. My arm just didn't feel right. We ended up getting a very last minute appointment and as a result I now have a weeks' worth of antibiotics (flucloxacillin) as the GP agreed we should do something about it just in case.

My poor arm!

Monday, 17 July 2017

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.

Saturday, 8 July 2017

Ovary Scan

Today I had a phone call from East Surrey hospital saying they had a cancellation and could I go in that afternoon for the scan on my ovaries. Not an ideal way to spend a Saturday afternoon but hey, if it means things get moving quicker then let's get on with it.

We arrived early and as there was no queue I was seen straight away. It was a fairly "invasive" scan but was over in under 10 minutes. The lady doing the scan very kindly told me then and there that everything looked normal meaning I didn't have to wait for any results. It's definitely the little things like this lady's thoughtfulness in telling me straight away that make this journey just a tiny bit easier.

To add a bit more polish to the shiny news, the car park ticket didn't charge us for parking either - small wins!

Thursday, 6 July 2017


Today I had a meeting with the gynaecologist to discuss my oophorectomy (pronunciation is they title of the post!) I was not feeling great anyway because of a spike in pain (presuming because of yesterday's zometa) that had me writhing around, so combined with a mentally stressful meeting it was not a fun day.

We arrived at the gynaecology waiting room to discover it was a shared waiting room with antenatal. How fucking insensitive can you get?! Dear Cancer patient who will now never be a mummy, please sit here with beaming pregnant women whilst you wait for your appointment to discuss taking your ovaries at 33, plunging you into the menopause and fucking with your life plans. Kind regards. I know it's a question of space and that the gynaecologist would look at a variety of conditions but seriously, it just made a shite day even more shite.

First steps towards the oophorectomy will be having a scan on my ovaries. Providing everything is okay with that scan, I will then be booked in for the op. It looks like everything will happen over the next few weeks. My oncologist is very keen for it to happen asap, so I think they may get involved and do some pushing. Once I've had time to digest the information they've given me I'll blog about what the op actually is and involves. It's just all a bit too much at the moment.

Edit: Have had a call and it looks like my op will be on the 17th July if it goes ahead at East Surrey. If it can be done quicker, as in next week, at Guildford, I'll have it there. I bet sod's law means I get an oophorectomy for my birthday.....

Wednesday, 5 July 2017


Today I had a check-up with my very lovely "trial" oncologist at Guildford. He's so kind and patient and really takes the time to explain things and reassure me. He seemed surprised I hadn't had my oophorectomy yet, but I reminded him I only finished rads a week ago and he said I should try and get it done asap. I have a meeting with gynaecology tomorrow so hopefully I'll have a date then.

I then asked him about the PET scan I had back on 17th June, my first piece of good news for a while, there has been no progression! I was terrified that the bastard had been silently spreading, invading my organs, so this is a very, very good thing.

Then I was told I would be having my first zometa that afternoon. Zometa (aka Zoledronic Acid) is going to be my adamantium. It's a bone strengthening drug which you receive by an IV which takes 15 minutes. I'll be having it every 6 weeks. The nurse walked me up to Chilworth ward and I have to admit my resolve crumbled. Although yes I've had my rads marathon, somehow, even though I know this drug is a good thing, having an IV drip makes everything real again. I'm not in denial about this whole shit sandwich of a situation, but I am trying to find my new normal and having an IV is like cancer smacking you in the face and shouting at you.

Chilworth Ward & Rob's knee!

Mum, Rob and I waited in that boiling room for about half an hour before my notes arrived and then I had a cannula put in and the drip, drip, drip of the drug began.
Adamantium time

When I heard the familiar "pfft, click, pfft, click" of the machine I fully burst into tears. That noise just took me right back to my chemo days in 2012. Although the oncologist had told me this was a low toxicity drug, it doesn't come without side effects which frighten me. Osteonecrosis of the jaw is probably the most terrifying one. Thankfully I went to the dentists yesterday and they said my teeth looked perfect so I am hoping this won't happen to me. The 15 minutes seemed to last for hours but eventually it was done and (armed with some daily calcium tablets to take) I was free.