I've woken up to the last day of 2016 feeling sick as a dog, but otherwise unusually sweet and grateful.
2016 is just too darn easy to slag off so I thought I'd notice some good things that happened.
Jane got married to a really nice guy and the wedding was a hoot.
Ali and Johnny smashed their A levels and have just done a term at uni. Different unis, but close enough that they can keep an eye on each other.
I found out that some of the friends that said they love me actually DO LOVE ME. Like a proper person, not just an unusual ice-cream flavour.
My Mum and Dad looked after me and made me stews and organised my pills and urged me to do some things.
My Mum and Dad looked after my poorly dog Ted in his last few weeks. They bought him a giant bed and took him for walks and put up with him barking.
My brother wrote "love from" in his Christmas Card and drove all the way from Portsmouth to supervise me for a bit.
The NHS decided to spend ££££££££ on the chance of giving me a few more months. I am actually humbled by that. It does not make business sense.
I met the Sue Ryder angels at the Duchess of Kent hospice. They scraped me off the floor, fed me up, sorted out the dire financial situation, gave me a glass of wine when I felt like it, made me face some deadlines and listened to me moaning on.
I survived.
Happy New Year.
Saturday, 31 December 2016
Friday, 30 December 2016
Chemo Pump
My pump.
My pump, my pump, my pump
Check it out!
Notice how it looks like a baby bottle. Oh please, don't mix it up with the baby bottle. That is not going to end well.
This is my favourite show and tell, but we're going have to cover the general idea of chemo first.
When you are put on a chemo regime you get a cocktail of drugs mixed specially for your specific cancerous situation. I am on a regime called FOLFIRINOX (always in CAPS because it's so toxic).
FOLFIRINOX is a combination of 4 different drugs and some other chemo bits and bobs like steroids, anti-sickness stuff, glucose and a really hurty anti-diarrhoea jab. So every 2 weeks it's off to the Royal Berkshire hospital for chemo day. I've been allocated 6 cycles initially and I've done 5. After that some boffins will think what to do next. I'm guessing it's going to be more FOLFIRINOX.. There they deliver everything except one of the chemo drugs via a drip.The whole thing takes about 5 hours with a bit of luck.
The stuff in the pump is called fluorouracil though I much prefer its other name 5FU. This is special because it takes 46 hours to go in. Rather than leaving you sitting in the ward for 2 days they put it in a pump and you take it home.
I know! It's amazing! If you are the show-off type you can go to the shops and tell strangers "Look! I'm chemo-ing as we speak".
I am so impressed by the design of this I'm a chemo-pump bore. Apparently in the old days chemo-pumps had to have batteries.Till some genius worked out if you blow up a thick balloon just right it will come out at the right rate. 46 hours to the minute. Well, not to the minute but close. And the playfulness of colouring the top pink.
The tube coming out the top goes through your clothes and attaches to the PICC line in your arm. More of the PICC line later, but it's a semi-permanent route to a main vein in your chest.
So you have to carry your baby bottle around for two days. In practice, this is much less of a drag than it sounds. They give you a funky little bum bag to put it in. At night, you rearrange it to come out the top of your clothes and put it under the pillow. The main hazard is tossing and turning in the same direction. This may strangle you gently. Also it's possible to get out of bed forgetting that you're not carrying it. Then it falls to the floor with a slightly sickening tug on your PICC line. The PICC line can take it though.
After 2 days a district nurse will come and disconnect it, and chuck it in a huge scary bin marked Infectious Substances.
Here's a big tip for cancer newbies, though hopefully it will be better where you live. I live in Reading, UK.
The first time you have chemo you get babied and the chemo ward arrange the district nurse for you. She turns up bright as a button Friday 3pm and looks shocked at the state of your house. Don't worry she'll get over it.
The second time you're supposed to arrange it all by yourself but nobody has told you this. They didn't give you any phone numbers or clue. The first thing you notice is that your magic nurse hasn't turned up and it's 6pm.
This ends in a crazy game of ringing the hospital and being transferred and not being rung back and then being told off for not following procedure and ends with a cross and officious nurse at 11:30pm coming in and opens with "Who smokes? Does your dog bite? I don't like dogs?".
There are lots of secret procedures in Cancer Town and I've been told off loads of times for violating them. It's a bit like starting a new job or joining the Freemasons.
As an exercise in humility, I am including this deeply unflattering photo of me sporting my chemo-pump. Hopefully my inner beauty is somehow suggested.All the best
Helen
Tuesday, 27 December 2016
Reluctant Heroes
You might be the biggest soppy wimp ever but cancer will make a hero of you.
Suppose for example you are offered chemotherapy. Your oncologist explains it like this -
Chemotherapy is a terrifying strategy, where we pump litres of highly toxic chemicals straight into a vein. It will make you feel like hell and it's all a bit vague so we might accidentally kill you, please sign this waiver here and here. Unfortunately there's only a small chance that it will make the damnedest bit of difference, We propose to do this every 2 weeks, so when you're just feeling slightly human again, we'll knock you back down to barely alive. And your hair will fall out, your tastebuds will fry, you'll throw up lots, get the diabolical squitters, your hands and feet will get pins and needles and you may develop tinnitus, possibly on a permanent basis. Though of course permanent is not very long in your case. How about it?
Perhaps you are the kind of hero who rejects this dodgy offer. You have decided to face this alone. You may have the most loving family and the dearest friends, but they can't truly help. Can you imagine the courage it takes to step into that deathly void all alone? The doctors say you have a few months and you start to hate the word "few". Even "several" would be better. You are braver than you've ever had to be. You are squaring up to death and looking it straight in the eye. Respect, you are a hero.
Or if you are the gambling type, like me, you grab the chemo option. Bravado shines from you as you ask "How bad can it be?" with a mad high laugh. Can you imagine the courage it takes to agree to systematic poisoning in exchange for a chance of a few more months? And even then those few months might be so horrible that they weren't worth it. Maybe you are trashing your last precious weeks on the earth. The stakes are high, the odds are poor but you're doing it anyway. Respect, you are a hero.
There is no third option. The other decisions you've made in your life now seem babyish because they didn't involve death. There was always the wimp's option, The do-nothing alternative. The "lets leave it a few months and see how we feel then" method. Cancer has taken away shilly-shallying and made you face a horrifying future where you have to choose between hideous paths and you don't even know if that choice will make a difference.
Terminal illness is full of these Hobson's Choices.
Should you make your children laugh by trying on wigs? Or go bald and shine your head all over town? Just one year ago, that decision would have seemed like your worst nightmare.
Should you give your dog away because you can't walk him any more? Or let him get fat and keep him to cuddle in bed?
Should you guilt your children into spending every second they can with you? Or blow them kisses as they disappear over the horizon into a future that doesn't have you in it?
So, non-cancerous types, find a friend with a poor prognosis and let them know you've realised what a hero they are these days.
Suppose for example you are offered chemotherapy. Your oncologist explains it like this -
Chemotherapy is a terrifying strategy, where we pump litres of highly toxic chemicals straight into a vein. It will make you feel like hell and it's all a bit vague so we might accidentally kill you, please sign this waiver here and here. Unfortunately there's only a small chance that it will make the damnedest bit of difference, We propose to do this every 2 weeks, so when you're just feeling slightly human again, we'll knock you back down to barely alive. And your hair will fall out, your tastebuds will fry, you'll throw up lots, get the diabolical squitters, your hands and feet will get pins and needles and you may develop tinnitus, possibly on a permanent basis. Though of course permanent is not very long in your case. How about it?
Perhaps you are the kind of hero who rejects this dodgy offer. You have decided to face this alone. You may have the most loving family and the dearest friends, but they can't truly help. Can you imagine the courage it takes to step into that deathly void all alone? The doctors say you have a few months and you start to hate the word "few". Even "several" would be better. You are braver than you've ever had to be. You are squaring up to death and looking it straight in the eye. Respect, you are a hero.
Or if you are the gambling type, like me, you grab the chemo option. Bravado shines from you as you ask "How bad can it be?" with a mad high laugh. Can you imagine the courage it takes to agree to systematic poisoning in exchange for a chance of a few more months? And even then those few months might be so horrible that they weren't worth it. Maybe you are trashing your last precious weeks on the earth. The stakes are high, the odds are poor but you're doing it anyway. Respect, you are a hero.
There is no third option. The other decisions you've made in your life now seem babyish because they didn't involve death. There was always the wimp's option, The do-nothing alternative. The "lets leave it a few months and see how we feel then" method. Cancer has taken away shilly-shallying and made you face a horrifying future where you have to choose between hideous paths and you don't even know if that choice will make a difference.
Terminal illness is full of these Hobson's Choices.
Should you make your children laugh by trying on wigs? Or go bald and shine your head all over town? Just one year ago, that decision would have seemed like your worst nightmare.
Should you give your dog away because you can't walk him any more? Or let him get fat and keep him to cuddle in bed?
Should you guilt your children into spending every second they can with you? Or blow them kisses as they disappear over the horizon into a future that doesn't have you in it?
So, non-cancerous types, find a friend with a poor prognosis and let them know you've realised what a hero they are these days.
Monday, 26 December 2016
Fighting
Shortly after your diagnosis, someone will be along to tell you how you must FIGHT cancer. They will no doubt have some stories about friends who were given 3 weeks to live and went on to prosper for another 40 years.
Though they definitely mean well, these people are thoughtless. They are implying that if you die it is all your own fault for not fighting hard enough. I'm not really sure what they mean by fighting and perhaps they don't either. Is it turning up at the office party with a big smile on your pale and skinny face? Or running 20 miles in a teddy bear costume? Or hosting dinner parties? Or having lots of kale smoothies? All of these things will make your friends feel better but won't do that much for the cancer victim, who would rather be sucking their thumb under the duvet.
The idea that you can have a fair fight with cancer is a fairy tale. You are facing a secretive, cruel and unpredictable opponent armed only with a balloon on a stick.
Your cancer started when a cell mutated into a variation that has never been seen before. The mutant cell fell in love with itself and started dividing at a rate of knots. Pretty soon, it made a spot. The spot got above itself and became a tumour. Pleased with its progress, the tumour got bigger and invaded some other organs nearby. Maybe it hit upon a lymph node. Lymph nodes are like underground stations that link the whole body. So cancer shot off through the lymphatic system and went to colonise somewhere new, possibly a long way from the mother ship. (Science might be a bit wrong here but it works for me.)
It can get quite a lot of this work done without anyone noticing a thing. Sometimes the cancer is in a body part near the surface and the first sign is a lump. My own tumour started in my pancreas and nobody has felt it yet, though at the last count it was impressively huge. If you have a lump that is hiding, then the first sign is that it hurts. A lot.
Cancer is so sneaky. Modern medicine has some gob-smackingly advanced tools but even these can only catch shadows. It shows up as a dark area on a scan. As a cluster of cells taken with a terrifyingly huge needle (biopsy). As a debatable antigen in your blood, assuming someone has figured out which blood test to do.
So if you are going to fight, be aware that you and your oncologist are fighting in the dark.
On the other hand, if you have cancer and are still alive then you are fighting. You are fighting with a courage and a determination that you didn't know you had. This isn't optional. You have been forced into it.
As usual, this post got too long. Verbal diarrhoea c'est moi. So I'll tell you how you're a hero in another post.
Tinkerty-Tonk
Helen xx
Though they definitely mean well, these people are thoughtless. They are implying that if you die it is all your own fault for not fighting hard enough. I'm not really sure what they mean by fighting and perhaps they don't either. Is it turning up at the office party with a big smile on your pale and skinny face? Or running 20 miles in a teddy bear costume? Or hosting dinner parties? Or having lots of kale smoothies? All of these things will make your friends feel better but won't do that much for the cancer victim, who would rather be sucking their thumb under the duvet.
The idea that you can have a fair fight with cancer is a fairy tale. You are facing a secretive, cruel and unpredictable opponent armed only with a balloon on a stick.
Your cancer started when a cell mutated into a variation that has never been seen before. The mutant cell fell in love with itself and started dividing at a rate of knots. Pretty soon, it made a spot. The spot got above itself and became a tumour. Pleased with its progress, the tumour got bigger and invaded some other organs nearby. Maybe it hit upon a lymph node. Lymph nodes are like underground stations that link the whole body. So cancer shot off through the lymphatic system and went to colonise somewhere new, possibly a long way from the mother ship. (Science might be a bit wrong here but it works for me.)
It can get quite a lot of this work done without anyone noticing a thing. Sometimes the cancer is in a body part near the surface and the first sign is a lump. My own tumour started in my pancreas and nobody has felt it yet, though at the last count it was impressively huge. If you have a lump that is hiding, then the first sign is that it hurts. A lot.
Cancer is so sneaky. Modern medicine has some gob-smackingly advanced tools but even these can only catch shadows. It shows up as a dark area on a scan. As a cluster of cells taken with a terrifyingly huge needle (biopsy). As a debatable antigen in your blood, assuming someone has figured out which blood test to do.
So if you are going to fight, be aware that you and your oncologist are fighting in the dark.
On the other hand, if you have cancer and are still alive then you are fighting. You are fighting with a courage and a determination that you didn't know you had. This isn't optional. You have been forced into it.
As usual, this post got too long. Verbal diarrhoea c'est moi. So I'll tell you how you're a hero in another post.
Tinkerty-Tonk
Helen xx
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