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

The Next Best Thing

7th June - I had a very painful night, I was dosed up on IV painkillers and was screaming out in pain a lot of the time. My back is so so painful. God this is so shite. 

Mid-morning I have a chest x-ray to see if the fluid on my lung linings is behaving or not. After my chest x-ray Michelle and Rob come and visit me. I have been missing Fagin and Poppy terribly and the lovely Michelle brought me a cushion as a pressie! She said if I could not go to the borders then she would bring them to me in cushion format! The next best thing - thanks so much Mish - you rock!

My awesome cushion!

That evening, the book club girls come to visit. Because I can't go to book club at whoever's turn it is, they bring book club to my bedside! We chat about the book for a tiny bit and then spend the rest of the time gossipping. Such a nice idea - thanks girls.

That evening I have the most dreadful sleep. In the ward next to mine there is a man with severe Alzheimer's. He calls out his wife's name over and over again. He also shouts "nurse, nurse, nurse" constantly. The nurses go to him and he asks where he is and why he's there. They gently explain but then 5 minutes later the same thing happens again. It's absolutely heartbreaking, but selfishly it's also annoying as i really need to sleep. I feel hideous saying that. He then asks to leave, many many times. He starts offering bribes to the nurses and to people each side of him. People tell him it's not possible and he starts to get really angry. He starts talking about killing people. He talks about his past as a "gangster" and says he is going to get his people to follow everyone in his ward and the next and kill them. He also says he is going to "start killing at random unless he's let out". Now I know this is his Alzheimer's talking and that he is unable to get out of his bed, let alone kill anyone, but it's still a pretty scary thing to be listening to.

8th June - Today I was determined to actually make a real effort with my walking. I manage to walk (with my walker) all the way to the end of the ward. I am bloody proud of myself.

Because of the amount of blood i keep having taken from me, I asked one of the nurses to find out what my blood type is. No reason other than curiosity. I'm 34 years old and have never found this out, so i might as well take the opportunity where I can. Turns out I am B+, the same as my mum .

Back in February, I had an appointment where I found out I had neurofibromatosis type 1. The doc at the time said it was highly likely I had it based on my skin. However they wanted to test me to 100% confirm. Today I got the news that they were somehow able to test the 3 tiny drops of blood they got from my shitty veins and it's been confirmed that the reason I have NF1 is due to a gene mutation. It changes zip, but I suppose it's nice to have the explanation. Dr P will love this for her write up of me for her case study!