I am so sick of being on treatment. Do not misunderstand me, I am eternally grateful to have access to a drug that wasn't widely available 5 years ago. This drug has undoubtedly saved me from being doubly incontinent and possibly without the full use of my right leg. It has given me time, time to raise my children. But I am exhausted by side effucks. These range from; a sore, dry mouth - sometimes so sore I struggle to brush my teeth, a permanent sore throat, the inside of my nose has a permanent sore patch which crusts over and then bleeds. I feel sick, I am sometimes sick. I oscillate between shitting Maltesers to poomageddon (or Mamarrhea as Pukey has named it), I have very little appetite and my taste buds have totally changed. Sweets, refined white carbs, yogurt, cake have replaced my previous taste for curry, steak, cheese, crisps and veg. I felt I needed to add veg to show willing. Most shocking of all...I can take or leave wine/gin/whisky/champagne. I probably drink once a week now, if that. And my feet hurt, bits of skin fall off, I have sore spots around my right heel. And I am tired every single morning. First thought of every day is "when can I squeeze in a nap?" I am 44 years old. I sometimes take 17 tablets every night before I go to bed, more than often I am in bed by 2000.
I rarely have all those enviable side effucks at any one time, although the fatigue is a constant. They come and go, seemingly at random, especially the shits. This makes it hard to plan. I have lost count of the number of get togethers I've pulled out of at the last minute. I am guilty of having a good day, making loads of plans and then having to cancel them all. This is not a great quality in a friend and as a result, some of my friendships have changed, not for the better. Perhaps I am not open enough about how I am really feeling but equally a conversation which goes:"morning Fiona, how you doing?" me: "I’ve got the shits, a scab up my nose the size of a cornflake and I’ve just puked in my mouth“ isn’t exactly chapter 1 of "how to make friends and influence people". Either way, I suspect people forget or don't realise what I deal with. And you know what, the longer I live this disease, the easier it is for others to push it to the back of their minds. I am aware that this makes me sound contrary - in one breath I say I don't want people to treat me any differently, I don't want to talk about cancer all the time, yet I am also saying, hey don't forget I have cancer, cut me some slack.
Of course, I have tablets to help manage the side effucks caused by other tablets, but these side effuck managing tablets come with their own side effucks. I take tablets for tablets, if you like. I'll give you an example:
I have cancer so I take anti-cancer drugs. They give me the shits. I can take Imodium for that, but it makes me (even more) tired. I can also take codeine for the shits, but it makes me feel queasy so I take an anti nausea tablet, which makes me sleepy. Imodium and Codeine are great at stopping the shits, but if you don't get the dose quite right, hello constipation. etc etc etc. Its side effuck splat the rat most days.
Honestly, I am so over it. I am staring down a tunnel of never-ending treatment and its wearing me down. It feels like a life sentence with no chance of parole, which is effectively exactly what an incurable cancer diagnosis is, now that I think about it. I have thought about discussing other treatment options with the Wizard of Onc, could I take a break for a while, and by a while, I mean months but aside from the fact that I know this would mean my cancer would, in all likelihood, start a massive party inside me, it would also mean I would lose NHS funding for the drug. The funding stipulates that if you stop the drug, you can’t restart it on the NHS. Plus, it’s not like there is a shopping list of other treatments available for advanced radio iodine refractory poorly differentiated thyroid cancer. The issue with this type of daily oral chemo is that my body never really gets a break. The toxicity gradually builds and builds, making the side effucks progressively worse.
Goodness me, what a rant. Well done for getting this far. As a reward, I will share with you possibly my best side effuck story:
We were staying with my long suffering aunt and uncle. I went to bed feeling "blasty" (as friend's Irish mum says). I popped a couple of Imodium in anticipation of a disturbed night. Reader: they did NOT have the desire effect. I woke to a small "accident" - got up, sorted myself out and went get a change of underwear from the suitcase to find....I hadn't packed any pants for myself. Fuck. I fished out a pair of Wakeys (she's 11) and swiftly discounted trying to put them on. Fuck. Rummaged around in the suitcase and decided the only option was to wear a pair of the Wingman’s. It was indeed a blasty, disturbed night and I had to repeat the same "process" a couple more times that night, getting through the Wingman’s entire stash of pants for the weekend. In the morning, I said to Wingman (wearing my best, most alluring smile), as he bought me a cup of tea, you have a job this morning - can you go to the Next down the road and buy me some pants as I didn't pack any and you'll need to get yourself some too. He looked confused until I explained not only had I shit in my only pair of pants, but all of his too.
Off he goes to Next only to find that they are going through a store reorg. This meant rather than just casually browsing the ladies lingerie section (looking particularly shady in a face mask), he had to ask for help. Now, like most men, he hates asking for help even in manly stores like B&Q so asking for help to buy pants caused him to almost choke on his own tongue. The sales assistant started asking what type of pants, colour etc. Obviously he said black (he’s not an idiot!) but when she started saying what style; tanga, brief, thong, high rise, low rise...all the Wingman managed to blurt out was "just think Bridget Jones". Exactly the kind of pants I required. Brownie *snigger* points all round for my enterprising husband.
Sorry, not sorry, for all the shit chat, but this is the warts and all blog about living alongside an odious disease that even when its being managed and controlled, still finds many many ways to fuck you up.