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

A Mighty Hike

Guest post from Rob.....

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.

Tietze Syndrome

Cancer is the gift that keeps on giving. I'm currently really suffering from something called Tietze Syndrome. As I said in January I was shitting myself as I had swelling in my chest but the docs said it was nothing to worry about and diagnosed me with costochondritis. Well since this appointment, it's become more and more painful, at one point at work I sneezed and it hurt so much that I cried out in pain. It's been a struggle to get myself dressed, to drive, to just walk around as normal, it's really painful :( Because my costochondritis is accompanied by swelling, I actually have Tietze Syndrome.

I ended up going back to the doctor who has prescribed me a two week course of naproxen which is supposed to reduce pain and swelling, let's hope it helps!

Wikipedia says:
The main presentation of the syndrome is significant, acute pain in the chest, along with tenderness and some swelling of the cartilages affected, which is commonly palpable on examination. Perceived pain is often exacerbated with respiration, although many times it can be extremely painful, to the point of being debilitating.

Illustration By Henry Vandyke Carter - Henry Gray (1918) Anatomy of the Human Body

The reason I started this post with "cancer is the gift that keeps on giving" is because I have found out:

Patients who have had radiation therapy to the chest/breast will often experience this syndrome which can occur shortly after therapy or years later

Thanks universe, I must have been a right shit in a past life....