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. https://www.healthline.com/health/esophageal-stricture-benign#causes


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

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.

Oncology Meeting

Rob and I head to Crawley where I have a meeting with my oncologist. Obviously there are no results from the MRI yesterday. However there are some results and in truth they aren’t great. A year to the day since my secondary diagnosis it would appear the pesky cancer is on the move. 

The CT that Michelle took me to that I was so nonchalant about has shown that my letrozole is no longer working and the cancer has broken through. So I got about 10 months on it after everything I went through with the trial.... 

I don’t really know how to feel. The bastard cancer has now additionally affected some paraaortic and retrocrural lymph nodes and also some of my skin. 

I already knew about the skin though, I could feel it getting more noduley and hard around my lower left boob.

It has also caused the pleural effusion.

I'm frustrated that I only had the MRI part of these scans yesterday because it means we don’t know for certain about bone progression. 

We discuss a new treatment plan, basically switching Letrozole to another AI. The new plan would be Exemestane and a protein blocker called Everolimus.

I feel strangely okay about this. It’s not in my organs, it could be a lot worse. Yes the new drugs will come with their side effects but I’m ready to keep fighting.

Dr P takes me through to the room where they give you a feel after “the chat” and I show her the area of skin I was concerned about (which has been picked up on the CT scan anyway). I also tell her about my wish for palliative rads on my back and thank feck she agrees.

In that side room she listens to my chest, she is concerned some pleura fluid is re-accumulating on the left side again and wants me to have another drain. She says there is actually a possibility for me to have it tomorrow and wants me to go for it. Once I have it, I can start the new E & E treatment next week.

"Sure" I say. Despite everything I’m feeling good, let’s go, get it done, then I can have a day to recuperate and then go to LWTF. I love LWTF, I missed it last year due to the secondary diagnosis shock. This year I want to go, to be there, to see people, to interact, to do my job.

I tell Dr P of my intentions to go. She tells me she doesn’t think it’s a good idea. She advises that I perhaps go for just a day later in the week and says she thinks that may even be too much 😥

She asks that I go and have bloods taken so they are ready for tomorrow's drain op. I hate bloods so much. However I strike gold and get the lady who always gets them first time. Small mercies.

Then finally I go up to Comet ward to have my Denosumab injection and for the first time the injection bastard hurts. Rob and I eventually head home and I crash out on the sofa exhausted.