I decided to put all my breast cancer blogs together in one book-ette. It will be available on Kindle in the next week or so. Isn`t the cover fantastic! Thanks to my editor/publisher, Andrew Sparke for his encouragement and support.
I had my sixth and FINAL chemo yesterday and I am still quite high on happiness that this part of my treatment is now over and also the steroids make me feel quite happy. The feeling reminds me of when I was a young gal and used to smoke a bit of pot with my mates and then get the munchies. Steroids definitely give me an appetite although I know they don`t suit everyone. Another really nice side effect of my treatment is that one of the drugs, steroids probably, stop my hip arthritis from hurting so for the last two weeks of each cycle I have been arthritis, sciatica and bone ache free which is wonderful.
Anyway, I thought I would write about the side effects I have experienced because I have had messages from a growing number of people who, like me, are living with a cancer diagnosis and quite a few people have fed back to me that my blogs are helpful so here goes………
The first three treatments I had were a drug called Taxotere or if you are in the UK it`s often referred to as Docetaxel (dosi-taxle.) This made my bones hurt a lot but I quickly remedied that with large mounts of Ibuprofen. Having checked with my doc` if this was ok, to take 800 mgs in one dose in the morning and then the pain would go away all day, with a little smile playing about his lips he said it was fine and wouldn`t kill me so that is what I did. I took a co-codemol at night, 500mgs for around 5 days. You really don`t have to put up with pain and I urge you to seek the advice of your doctor like I did. Other than that, the Neulasta injection which is self injected to increase your white blood cells, also increased my bone and back ache but all of these side effects go after 7 – 10 days so even when you are at your lowest ebb and weeping in the park (it`s where I go to have a good cry) you can comfort yourself with this common fact for the majority of people.
I tried not having the Neulasta injection last month. I told myself I would boost my immunity naturally with a good cancer diet. I ate a ton of Kale, beetroot, garlic, ginger, cumin, etc etc. and immediately developed netropenia where your white blood cell count drops dramatically, in my case to nearly none at all. I got a rotten infection in my gum, my temperature soared to that of the sun and I went to hospital for four days. Sigh. Now I just have the injection.
About 17 days after my first cycle, I lost all my hair even the hair on my poonani. Gross. I wear turbans, (not on my poonani) I like them and they are cool in warm weather. I don`t want a wig but everyone is different.
Both treatments give me chronic constipation which is shit. Take lots of Movicon, I mean LOTS and it does help, or buy a spade.
My finger and toe nails have thickened and become ridged and yellow. I look like I smoke forty fags a day using my feet. New nails will eventually grow back. Some of my toes have permanent pins and needles but it`s not too unbearable and should go eventually.
I had a sore scalp for the first few weeks but this wore off. I use Johnsons baby shampoo as I find it soothing. I get really dry, sore eyes each month for about a week. My doc` gave me some pretend tears and they are very soothing.
Taxotere made everything taste like metal for about a week. FEC makes everything taste sickly sweet. Drink PLENTY of water and I lace mine heavily with a cordial of some kind, or the occasional gin! Brush your teeth plenty too as this will also help take the taste away and suck mints or hard fruit sweets or toffees until you get your taste buds back. I like soup and I love granola, two of the few things that remain tasting lovely no matter what.
FEC makes me feel sick but this is very easily remedied for the majority of people with Emend, and Domperidone. Insist on having the two drugs, they are a life saver for many people including me.
FEC makes your wee go pillar box red for about 3 days. It`s a bit disconcerting if no-one has explained.
The most unpleasant side effect with FEC is that it makes my muscles very weak. I love to walk with my dog but I have to ensure I am walking somewhere where I can sit down or I feel like my legs will give way. I also get a bit breathless and that`s because the drugs affect my red blood cells as well, and they`re the ones that take oxygen around my body but I know it will all pass. This too will pass as God and Buddha remind me every day.
About 5 days after my treatment I usually have a day where I feel terribly emotional and have a good cry. It helps, I kick myself up the arse and remind myself that there are many people who are so much worse off than me and crack on with living in the moment instead of worrying about the future.
I have a bit of chemo brain but I play on that! Chemo brain makes your worms come out wring and you can forget stuff and feel fuzzy in the head. A bit like a mild hangover.
I`m going to have my surgery, a lumpectomy in my left breast, some time in July and then some radiotherapy so I`ll get back to you a bit later. Please email me in the comment box below with any questions, I will reply to everyone.
I am so glad I have managed to do all six, I nearly gave up on number four, chemotherapy makes you feel rubbish there is no doubt. But it`s manageable if you find out what works for you and I have been left with a sense of achievement, a bit like when I walked up mount Snowdon with the Australian but that`s another story. As the doc` said when he gave me my diagnosis, “you have a long road ahead of you.” Finishing the chemo helps me to feel like I have given myself the best possible chance of remaining here on this wonderful planet, a while longer.
I went for a scan last week and the nurse said the tumours have shrunk but not a lot. I slipped into the slough of despond for a bit and had a very bad day, hence the title of today`s blog. When I spoke to a registrar this week he said that until the tumours are removed and biopsied they do not know how many live cancer cells I have remaining so I do hope the feccin` FEC has done the trick. I have to have radioactive dye injected quite soon so not only will I have super powers but this will tell me if the cancer has spread to my lymph nodes. The dye will also make my breast go blue apparently so I am considering auditioning for the follow up to Avatar, or changing my name to Helen Blue-tit. Whaddya think?
I just had numero four of my chemo treatments. The one I was on for the first three months, Taxotere, is known as “The Batterer” in the unit I attend. The nurses assured me that the final three FEC treatments would be “a walk in the park” in comparison. Taxotere certainly has a reputation and in my case, not entirely earned although it made my body ache horribly, I found it was manageable with copious amounts of Ibuprofren and the occasional gin.
FEC is so different, I don`t think there is anything to be gained by making comparisons. For the first four days FEC absolutely floored me, I have felt so weak I could hardly get up the stairs to go to the loo and yet here I am on day five, I`ve been to the park on this beautiful morning and walked my dog oh joy and feel a gazillion times better. I consider myself very lucky as many people have horrendous side effects with FEC, the most severe one being chronic sickness and ulcers in the mouth and gullet. So hurrah but by golly I shall be glad when it`s all over! My nails are weird, ridged and peeling but not yet blue as some people`s nails become.
Yesterday I felt very low, in my depressed state I decided that I wasn`t going to have any more chemo, enough is enough and it simply isn`t worth it, the quality of my life is so different in comparison to the robust human being I was at the beginning of the year, why prolong the agony? FEC it! I shall have the surgery and takes me chances.
This morning though, feeling better and after a really good sleep (I am sleeping incredibly well, it`s very odd) I see it all a bit differently and rearranging my thoughts, I will of course optimise my chances of remaining well in the long term by completing my chemo course. Chemo I find is a bit like childbirth (sorry men, it`s the best comparison for me) and once you begin to feel better your body has a marvellous way of placing it all aside and filing it away under “rather challenging experiences it may be prudent to forget.”
And that`s my continuing message to anyone undergoing chemo. You will get through it, and once through it you can crack on with your life.
So take heart, stay positive, if you feel as rubbish as I did yesterday then I promise you it will pass. Try and say so and ask people for a bit of help. My friend Annie called to see me yesterday and chatted to me for an hour and that was so lovely and made a difference. If you are facing chemo on your own then in the UK you can always ring the MacMillan nurses and they are ACE!
And by the way…….. JOG ON CANCER!!!
Four down and two to go! 🙂
In previous blogs I have referred to my breast cancer as breast banana in order to disempower it. Well it seems to be working as I had an examination the other day and after just two months of Taxotere (otherwise known in the UK as Docetaxel) the only bit of the smaller banana that the doc` could feel was the titanium marker and the other banana has shrunk a lot and is now soft to the touch, which is GREAT and what the doc was hoping for. She said she was hoping to cure me and I told her I like that word. Cure, what a great word!
So – that`s the first three months done and dusted thank you very much! Taxotere is pretty aggressive on the old white cells and also affects your red blood cells to an extent and can make some people feel really tired and a bit short of breath. The good news is that like me, many of us have a very good tolerance of Taxotere and experience few and quite mild side effects which I have discussed in an earlier blog. Also, the body is so amazing at adjusting to chemotherapy, that after about 10 days, I certainly feel much more like me and by then of course it`s nearly time to see the doc` about the next treatment. Ho hum.
For me the worst aspect of banana therapy this far has been an injection of a drug called Neulasta which isn`t actually chemotherapy, but is given after Taxotere and some other treatments in order to boost the white blood cells. The main side effect of Neulasta for many people is bone ache and there is no prettying it up, it`s bloody horrible and I have to take a lot of pain killer, usually Ibuprofen or Co-codemol in order to manage it. It lasts for about five days. Many people on chemo also suffer from MAJOR constipation after a treatment, again very common and easily remedied with Senacot or Movocol. This lasts for two or three days. No-one should put up with being uncomfortable and I speak to my pharmacist at Lloyds Chemist if I`m worried. He is great. I can never get hold of my consultant, I`ve only met him once and I see his registrar she is lovely and very reassuring. My next three treatments are called FEC T, and I will no longer need the injection so hopefully it`ll be a bit easier from then on. We shall see, everyone`s chemotherapy journey is different.
The doc` says I can go back to work from May onwards as my immunity will be on the up, she has no problem with this. As my contract with my current employer finishes in April, I am on the lookout. I get bored so easily at home and being at home gives me far too much time to Google which is never a terribly good idea when you`re feeling low. All offers of work gratefully received! Of course I still have a journey ahead of me, a bit of surgery, maybe some radiotherapy, hormone tablets for several years…. but I remain optimistic with the occasional bad day which is to be expected. People always say, “Stay strong!” or “Keep positive!” but it ain`t always so easy when you`re on the receiving end. Sometimes you just need a good blart.
To fill my time I have been finishing a small book about an intriguing man I once knew. I have found a publisher which is rather serendipity and he is going to get it up on Kindle for me so I am VERY excited. I won`t make any money to speak of however, it isn`t about money so watch this space as I am very nearly at the conclusion. I won`t put any spoilers here……. you will just have to wait!
Meanwhile, I continue to receive requests for bald impersonations which I put up on Facebook. So far I have done, Sigourney Weaver playing Ellen Ripley in Aliens, Sinead O`Connor with some new words for Nothing Compares to Chemo and Walter White out of Breaking Bad.
This weekend I`m doing Kurtz from Apocalypse now……..
Have a great weekend, it`s a beautiful day! 🙂
Eleven days after my first chemotherapy treatment, thank the Lord life is pretty much on track again. The first week was absolutely horrible as anyone who has undergone chemo will most likely tell you. Actually, I have discovered that some people positively relish telling you the most unpleasant bits you may have to look forward to. Ghoul like drool slathers down their chins as they describe the various toxic side effects of chemo while they check out your reaction. My take is that they were probably already toxic, hah! Anyways, clear off down yer own end ghoul face. Then you also meet the sad survivors who gaze at you, doe eyes gathering sparkly tears in the corners as they whisper quietly in mournful tones….. “it`s your journey Helen and only you can travel the path….” Yes well bugger off if you don`t mind sad person, jog on.
So far my path hasn`t been that bad. The worst things to put up with have been aching joints (nothing a good dose of co-codamol can`t deal with) and itchy skin. I asked my local chemist what would be the best treatment for my itchy skin and he said E45, so I asked him why and he said, “because it`s really cheap!” He`s not wrong and although it took 2 or 3 days to work, to my huge delight it does. Hurrah. It`s a case of trial and error and I realised quite early on that I don`t have to lie on the sofa all day feeling miserable, there is an antidote to almost any discomfort. Talking of lying on the sofa, the house I live in is old and large and draughty so most afternoons I wrap myself up in a rather nice teal velvet throw to get warm and have a doze, my head poking out at the top. My little dog Alfie lies beside me like a small, hairy hot water bottle. The other day this harmless action led to Mr. Inman (who I share the house with) entering the sitting room with a nice cup of coffee for me. His greeting? “Hello my little blue maggot, how are you today?” It`s a good job I don`t offend easily.
My taste buds have altered, I can no longer drink tea which is very odd as I have been an avid tea belly all my life. Like a pregnant woman I long for porridge and cereal (weird) I chuck gallons of water down my neck every day, I want rice, plain rice and soy sauce. I`m being led by my body and I`m losing weight. I can`t eat any processed food at the moment as the result is raging indigestion and I eat a little white meat and plain fish from time to time. My favourite thing to slurp is gluten free, organic lentil soup which I found in Sainsburys. It`s called Amy`s Kitchen soup. It`s delicious and I could live on it, I practically am and by the way, the next person who calls me Helen Longfork runs a serious risk of being head butted. (Joke!)
So all in all, may this manageability continue with my second treatment which is due on March 11th. A few days` blissful respite before the next bit but bring it on! I really mean that, no honestly I do! 🙂
I had my first of six chemotherapy treatments yesterday. One down and five to go (ok but you might be rubbish at math`s!). I am just beginning to get a glimpse of how things may not always run smoothly in an incredibly busy ward like the one I visit. For example, when I arrived my nurse said, “so you had your steroids yesterday and this morning right?” I said, “what steroids?” I noted an incredulous expression on his face as he repeated, “you weren`t given your steroids yesterday.” It was a statement, not a question. “Well, that’s no problem,” he said sighing quietly, “we can give them to you now…..”
I was at the hospital about two hours as first they flushed the steroids through and then the chemo. To me it seemed very innocuous. I didn`t experience anything untoward other than the site where the medicine goes in through the canula in the vein in my hand, it feels really cold. I read a magazine, had a doze, played upsy – downsy with my electric chair until I got told off. I talked to the lady next to me about alternative treatments, gin and tonic being the favoured one. I ate a hospital provided lunch (cheese and tomato, or tuna sandwiches, strawberry jelly and cake with tea or coffee) and piled high with various anti-sickness pills, a self-administered injection to encourage my body to make lots of white platelets, anti – indigestion tablets to be taken over the next few days I drove home. I felt good, I felt happy to be here on earth, I felt joyous after a wait that seemed ages to me, at last I`m doing something.
When I got home I took Alfie out for a drizzly walk down by the canal and met a few other dog walkers and some nice dogs. Went home, pretended to fall down with anaphylactic shock for Binman, oh how we laughed! For tea I ate two slices of ciabatta with what I thought were olives. Turned out to be jalapeno and they were so delicious I ate them anyways, slathered in butter. Helpful hint number one: do not eat jalapeno following chemotherapy, repeat – DO NOT etc etc…..
Woke up at half past midnight with rather alarming stomach cramps but to be expected and nothing that a nice cuppa (caffeine is good for cramps) and a visit to the fleur de loo cannot sort out. So all in all, not a hugely horrible experience, nothing at all like I was expecting so if you are about to embark on this treatment or need it at any time up ahead then rest assured, there`s nothing to be gained by worry, honestly, worry ye not! I`m treating it like a massive journey of life transformation for the better, one day at a time sweet Jesus. I haven`t had a fag, I haven`t had any alcohol since last weekend and I am slowly losing weight which is good, because I was four stone too heavy and that`s the alcohol let me tell you! GOODBYE FOUL LIQUID!
And jog on banana.
Independent Blogger of the Year, The Comment Awards 2016 & 2017
A series of letters to my mother Etti who died when I was 18. Years on I found myself wanting to tell her about my life. Some of which happened when she wasn't looking, and some of it when she was.
A welcoming space for resistance to the forces of oppression and hegemony.