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.

Cycle 1 - Halfway check

So I've just had my two week check for my first cycle on my trial drug. Rob drove me to Guildford and we met with Avril (the research nurse), she sent me off for my blood tests. I had to wait for about an hour for my bloods to be taken and once they were done we met Avril again. I was feeling really anxious and shaky, we chatted about the side effects I've been having and I was then sent off for an ECG.

Common issues from my trial drug at this point are low blood counts, rarer are issues like heart problems.

We were waiting to meet TC when Avril came to see me and told me there is an issue with my heart rhythm. Fuck. The QT something or other was too high. I had to wait for an hour and then have another ECG.

We were waiting for ages to see TC, and when we were finally called in, my second ECG also showed that the QT rate was too high. The rate had reduced since the first one, but not enough for the trial parameters or to actually be safe. Therefore they've taken me off the trial drug for a week but I still continue with letrozole. 

TC said not to worry and that at the start they will always play around until they get the dose right. Easier said than done though. I guess it makes sense, as why would a dose for me be the same dose as say a 15 stone woman... I have to go back in a week for a repeat ECG and then they will look at what to do, probably reduce my ribociclib dose down. I've just got to hope this is what happens rather than getting taken off it all together.

I also told TC and Avril about my lack of sleep. Although when I take the diphenhydramine I manage to sleep fitfully (as in I still wake multiple times a night but I manage to fall asleep again after the night sweats), it still isn't good sleep. So he's prescribed me something called zopiclone which I will take tonight:

Zopiclone boosts the effectiveness of a chemical in the brain called gamma-aminobutyric acid (GABA). GABA blocks transmission across nerves in the brain and has a calming effect. By boosting the effectiveness of GABA, zopiclone improves sleep.

Then yet more waiting until I had my adamantium which was pretty much the same as last time, apart from the fact every chair was full of different people receiving treatment. When I last had it, I had the ward to myself. I've just got to hope I don't get the horrible pain tomorrow like what happened 6 weeks ago, please please!

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.

Update

So this week has been all about getting strong for chemo #5.

Came out of hospital to some lovely flowers from Amanda & Paul:

 

Felt well enough to go to work on Friday & it was great to go back in & get a sense of normality.

Sunday was Amanda's birthday meal at The Bull & I wore Erika, still not 100% convinced it doesn't look like dolly's hair tbh!

When we were there Amanda gave me my amazing quilt that she's been handmaking for me over the last month. It's Cath Kidston style, snuggley & absolutely fantastic :) Thank you Amanda :) xxx

 

Monday-Wednesday I went to work which was busy & fairly tiring - used lots of spoons! Saw Michelle on Tuesday night which was fun, good girlie night!

Today I went to St Luke's & had a blood test ready for chemo #5 tomorrow. I really hate blood tests! Never liked them but now my veins are becoming pretty hard so this time it blimmin hurt! We had a bit of a delay to see the BC nurse but as we had to wait, it meant my blood test results were back & the BC nurse said they were really good, better than last time even, so chemo tomorrow is a go.

Big thank you to Sandra for my Sanctuary Spa Treats gift set, I'm saving this for my achey bone time next week after T:

 

Also received a v colourful postcard from my ever thoughtful friend Hannah who has sent me a card ahead of every chemo I've had, thanks Han: