Um, probably not cake then?

My bloated belly continues to give Cake vibes (if you haven't read the last post, none of this is going to make sense) but has failed to exhibit much more than a crumb of evidence of its genuine cake-ness.

Rather then flogging the analogy to death, here is what I know:

I have ongoing ascities - fluid filling up in my abdominal cavity and giving me a lovely rotund tummy (think Vector, from Despicable Me).

I drain the fluid off myself every other day by attaching a bag to a tube that is dug into my side. Around 2 litres of what's know as "straw-coloured fluid" (how many people these days have ever even seen straw?) comes out and I throw the bag in the bin. The tube is only about 15cm long and rolls up under a little dressing, so it is not very obvious.

I have been doing this now for 8 months. 

Everyone assumed the fluid was coming from cancer, but now it seems it might be a result of my liver packing it in after years of surgeries/radioactive attacks/chemotherapy and the odd bottle of cava. 

I had a liver biopsy which confirmed that I have portal hypertension and liver fibrosis, also known as the early stages of cirrhosis. 

I have some of the complications of cirrhosis already (besides the Vector-gut) - my protein levels are low (all right Instagram, yes, I should bave been listening to you all along) and I am losing muscle mass, so I am scrawny around my neck and my upper body. I get bad muscle cramps, in my feet, calves, thighs, fingers, which means that I am sometimes locked in painful twists that I cannot undo. I am breathless because some fluid has built up at the lower part of my lung, over my liver, so I wheeze and cough if I try to speak and go upstairs at the same time. 

My belly hurts if I stand up for too long, and my scar tissue gets stretched by the fluid, meaning I am generally clutching one bit of me or another to try to massage the pain away. 

I don't have to take chemotherapy any more for the moment, because no one can find any decent bit of cancer for it to zap.

I have started to take blood pressure tablets to see if the pressure in my liver will come down, but they don't seem to be making much difference so far. 

I have entered a new world of outpatients waiting rooms and multidisciplinary teams, which are focussed on dodgy livers rather than cancer, and I am interested to see how the vibe (and stigma) differs. 

There is an assumption that not having visible cancer is a good thing, so I will go along with that.  

Is It Cancer?

There is a show on Netflix called Is It Cake?

It is exceptionally irritating on many, many levels. The host shouts. The guest judges appear to have been drugged and kidnapped. The competitors give Nice But Dim vibes. 

The main premise is that you make a cake look like an everyday object, and put it on a stand next to said everyday object, and see if you can fool the judges into thinking that your cake is, in fact, an actual teapot/basketball/angle grinder. Shouty Host shouts "Is it cake?", and everyone is stunned when it turns out that yes it is. 

The only slight problem is the very loose, very American, use of the word "cake". Each one of them is a hideous melange of UPF ingredients, lit up in horrendous colours and slathered in corn-syrup matter described as "frosting". 

On this show, even the cake is not cake, not really. 

I am on more chemotherapy for cancer for the last four months or so. Except that no one is entirely certain that is definitely cancer. It looks very like it on the scans, but mostly because there are fuzzy spots in funny places in my peritoneum, and I have stage 4 cancer, so the fuzzy spots must be cancer, right? 

The Fuzzy Spot experts were pretty sure, when they had a look. 

The General Cancer in Sarah expert was fairly sure, but accepted that they could just be Fuzzy Spots of Unknown Origin (in medicine, we have a few conditions that we are totally content to entitle Of Unknown Origin, and pat ourselves on the back for our clever use of words). 

I have been very happy to go along with treating the Fuzzy Spots on the assumption they are cancer, because Safe/Sorry/Etc.

Except that, a bit like cake, if you leave it out in the world long enough, you can be pretty sure it would start to change. Soften. Crack. Get mouldy. Get maggoty. Stink. You get the picture.

My Fuzzy Spots look remarkably similar to what they looked like in August. And actually, if you squint a bit, they look quite like how they looked the previous August. 

Even the most additive-filled confectionary is bound to start looking a bit rough around the edges after 18 months. 

So while it looks like cancer and should be cancer, it is not behaving in a very cancery way. 

But if it is not cake - I mean cancer - what is it? 

And can someone please explain to me how I am supposed to get my head around living in a very very long episode of the most irritating show on Netfllix? 

Have Yourself a Neutropenic Christmas

Neutropenia is the fancy name for when your neutrophils, which are the bacteria-fighting cells in your blood, get obliterated by illness or treatment. 

Many types of chemotherapy cause neutropenia, which is why cancer patients are often immunosuppressed. We remember those immunosuppressed folk from Covid - the ones that gave us a sigh of relief when the death numbers were published because they had Underlying Conditions, and were therefore Sitting Ducks, and didn't count. 

Having little or no ability to fight infections is a pretty serious situation to be in. We all know what it is like to feel a cough or a cold coming on, and to feel sorry for ourselves for the impending few days of snottiness and general urgh. But if you get an infection and you have no internal ways of killing it off, you will need some other kind souls to intervene. Usually, this will end up being the kindest souls of your local intensive care unit, who have skills of life-saving that David Hasselhoff could only ever dream about. 

The advice for people who are taking chemotherapy is to check their temperature every day (with a thermometer that works) and if it goes above 38º, then they must go straight to the hospital. The recommendation is to be seen and treated within one hour, as this is the magic window before sepsis overwhelms your entire system and you basically shrivel up into a dying purple heap on the floor. I am aware of many fellow cancerheads who have had a number of what they call "blue light" experiences, where they have hollered for an ambulance at the first sign of a fever and hightailed with all the bells and whistles (literally) into the nearest emergency department. I don't actually know anyone from Cork who has done this, as I think we have an additional protective factor when it comes to invoking the emergency services. The weight of Morto can often far exceed the weight of I Am About to Die in our critical thinking strategies. Better to have your cold purple heap scooped into the back of a hearse than to disgrace yourself by calling a false alarm.

But that one-hour golden window is an interesting one to contemplate around Christmas time. Will I check my temperature before I put the turkey on the oven and if it's high, risk an even more cremated bird than usual as I nip off for a quick resuscitation? Will I bother with the thermometer at all on Christmas Eve, in case I miss out on Santa? Will I ignore every possible symptom of ill-health and decide that only a coma is a good enough excuse to ruin Christmas for everyone? 

Also, people with low neutrophil levels are supposed to: 

• avoid crowds
• avoid close contact, such as hugging or kissing
• avoid soft cheeses, undercooked meat and poultry and the skin of raw veg
• avoid fast food or takeaway food

Have you ever seen a list that more encompasses the spirit of the festive season? Kissing people in a huge crowd while eating deliciously manky burgers? That's the Christmas party out the window so. Hugging snotty children while munching on a brie and cranberry sandwich? Nope. Rooting around in the 5-day-old turkey trimmings for a final tasty little morsel? Out of the question. 

I tried to navigate the chicanes of immunosuppression this Christmas, but it was very hard. Yes I would love to see you, but no I can't hug you or sit near you if you sniffle. Yes I will go to see the Frank and Walters, as always, but I will stand with my coat on at the side of the room, trying to pretend that the scarf wrapped around my face is a stylish fashion choice. Of course I will go and enjoy the festive spirit in the Marina Market, but only by standing in a freezing draught and keeping my Ninja-ears peeled for the vaguest hint of a cougher. 

It didn't help that influenza was rampant, and as usual people were very blasé about it - until they got it, of course. Then they wail and gnash their teeth and say "never again!" - but forget about the vaccine again next year. 

I survived a trip to London, on planes and trains and buses (not the Tube though, I am not insane) and it all went well until I suddenly panicked about the flight taking more than an hour, which meant that if I started going septic as we were taxiing, well then I would surely be dead by the time we landed in Cork. But as long as no one noticed until we were in Irish airspace, at least I wouldn't end up in an NHS hospital...no E111 card will save you there. 

If I have a choice, I will choose not to to be neutropenic at Christmas again. It's a real humbugger.