C is for… Chemo Shmemo

20 Nov

Everyone reacts differently to chemo but the majority are surprised to find it’s NOT NEARLY AS BAD as you had expected it to be. For me, it was like a bad hangover that lasted for a week or so after each chemo session. Actually, I guess that’s exactly what it is – although this time you’re flooding your body with poisonous chemicals to zap those pesky cancer cells rather than poisoning yourself with 2-4-1 cocktails. So basically you get the hangover without the preceding fun. I was never sick but felt very queasy, headachey, tired, fuzzy and emotional. The only thing that made me feel a bit better was eating!  And, like a hangover, salad and fruit just didn’t hit the spot – it had to be as carby as possible.  I, along with many others, had expected to lose weight on chemo (the only silver-lining to it all as far as I was concerned!) but no! Most people pile weight on due to the steroid-induced munchies and queasiness and I was no exception and piled on over 2 stone…

dep_6700130-Cute-chubby-girl

For primary breast cancer, the drugs prescribed differ. FEC tends to be the most common one, but you might start off on AC or EC. These are the ones that can make you feel queasy (and also give you red pee…!). Some people are continued on these for 6 or 8 sessions, while others switch over to T or TAX (Paclitaxel or Taxotore). These drugs don’t cause sickness but can cause aches and pains. All of these cause hair loss. The letters are acronyms for the drugs that make up the regime. If you click on the links it will take you through to the Macmillan website where they explain them in depth. A couple of less common regimes are TAC and CMF. Some drugs are given weekly, others fortnightly, but most 3-weekly. The drugs you are prescribed will vary on your pathology and your oncologist – so check with them if you want to know why they have opted for your specific treatment plan.

The chemo nurse administers the chemo either via a syringe or with a drip, depending on the drug. They will access your veins either using a cannula (where they will need to access your veins at each session), or you might be fitted with a central line, PICC line or portacath. They start off with your anti-sickness meds and steroids (which make you feel as though you have ants in your pants – weird feeling) and about half an hour later will administer the drugs.

My top tips for coping with chemo are as follows:

diary

1) Keep a diary. For the first session of each drug type, just take it easy, listen to your body and make a note of any side effects you experience. This way you can bring them up with your GP, breast care nurse or oncologist which will allow them to adjust the drugs or prescribe something to ease the symptoms after your next session. By keeping track of your symptoms you will also soon learn which days you want to hibernate (and therefore get help with walking the dog, picking the kids up etc) and also which days you feel good (and can book FUN things to look forward to – seeing friends and family, meals out, weekends away, shopping trips etc). Of the ladies I have met during my treatment we all reacted in different ways. Some worked on their good days, others took it easier. You’ll soon suss out what works for you.

vomiting-cartoon

2) Sickness. You shouldn’t be sick. I HATE being sick (would go so far as admitting to a vomiting-phobia) and couldn’t believe it when my breast care nurse PROMISED me that there would be no vomming! I thought chemo = days with your head down the loo or in a bucket. However, anti-sickness meds are excellent nowadays, although it does seem as though they start you off on the lower (and cheaper) meds and increase it if you need it. So if you are sick or do suffer from severe nausea, let your breast care nurse or oncologist know. I felt really sick for the full 14 days after my first chemo (had mine every 2 weeks), but was given Emend for the remaining sessions. It was my saviour and stopped the queasiness instantly. That and comfort food and Queasy Drops!! Others swear by morning sickness remedies such as eating little and often and eating ginger. And others used motion-sickness bands and Nux Vom. If you’re a bit of a sickly person (ie get travel sick and prone to morning sickness) or if you hate being sick, like me – it’s worth telling your oncologist and asking them to prescribe the stronger anti-sickness meds from the start.

no hair

3) Hair. I think the 2 scariest side effects associated with chemo are the sickness and the hairloss. Now, while you shouldn’t be sick, most breast cancer chemotherapy agents do, unfortunately, cause hair loss. Everywhere. And yes, hair grows back, but that doesn’t make you feel any better about the prospect of losing it. And it’s the obvious tell-tale sign that you have cancer. I managed to hold onto a bit of head hair by using the cold cap which freezes your head, shrinks the blood vessels and therefore allows less chemo to reach the hair follicles. As the hair loss thing is such a big issue, I’ve given it it’s own posts. See K is for… Keeping Hair – Cold Capping for my experience. Another friend who was much more gutsy than me and embraced the clippers has shared her experience under H is for… Hairloss.

4) Other side-effects and symptoms. The list of possible side effects is quite daunting and ranges from constipation to diarrhoea, mouth ulcers, flaking skin, acid reflux, pain, headaches, insomnia, fungal infections, hot flushes, depression, early menopause, weight gain etc. Most will suffer from very few of these – the unlucky ones will get quite a few. But DON’T SUFFER IN SILENCE. If you get any nasty side-effects after your first chemo, see your GP or oncologist who will be able to prescribe remedies for most of the above. My physical symptoms were limited to severe acid reflux (I spent one night sleeping sat upright as it felt like I had molten lava coming up my throat when I laid down) and mouth ulcers – but I booked to see my GP immediately who gave me a script for tablets and a mouthwash that soon cleared both symptoms up. And remember if you’re feeling crappy – those pesky cancer cells will be feeling even worse. Also see post M is for… Menopausal Symptoms for tips on dealing with being thrust into chemopause and W is for… Weighty Issues about weight gain on treatment.

5) Steroids. The steroids given to prevent allergic reactions to chemo and for their anti-emetic properties unfortunately have some unpleasant side effects of their own. For me, each chemo session was accompanied by a constantly scarlet face and a manic steroid-high followed by a dramatic comedown when I sank into the depths of despair and cried for 24 hours non-stop, only to awaken the next day feeling OK again! Not much fun, but it only lasts a few days, and if you’re keeping a diary and you’re expecting it, you can ride through it with the confidence that you’re not going doolally.

6) Avoid your favourite things on chemo-day. Although I was never sick, my body obviously realised it was being poisoned and developed weird connotations. Imagine the feeling you get when you think of the alcoholic beverage that tipped you over the edge (sambuca = bleugh). I now get the same feeling when I think of cheese and tomato sandwiches, green tea, nougat, Chanel Mademoiselle perfume (used to be my fave) and a couple of items of comfy clothing that I frequently wore to the chemo unit. Maybe you could use it to your advantage if you have a particularly prevalent mars bar/crumpet/pickled onion habit that you’re looking to shake.

7) Drink LOTS of water. Lots and LOTS of it! At least 2 litres a day. Not only will it flush the poison out of your system quicker but it’s also good for your parched skin. Tennisgirl was also on my water-consumption case and arranged for a lorry-load of Highland Spring to be delivered so I could monitor how much I was drinking. About 800 litres were delivered to my door!

powerport

8) If you have measly veins or hate needles, consider a port, central or PICC line. I had a PowerPort (so American!) which was situated on my chest and sits under your skin so you can wash and swim as normal. (Unfortunately the first one went a bit wrong and I ended up having an emergency op to have the tubing removed from my neck and heart – but that’s another story and is a very rare occurrence ). Needles are still involved as the chemo nurses have to use a small one to access it, but it was numbed first so I never felt a thing which was a relief after so many fumbled attempts by nurses and doctors to access my skinny, little, deep-set veins. My chemo and Herceptin were administered through my port and blood was taken from it for my fortnightly blood tests. I’ve since met girls who had their ports in their arm. I wish I’d had the option as hate the scars on my chest – so that’s something to bear in mind if you’re considering one.

Pills

9) Take all of your medication as instructed. After your first chemo you will leave with a bag full of various tablets. Take all of them as instructed – you have been given them for a reason – mainly to reduce the number of side-effects and to make the whole experience easier. For example, don’t decide not to take the anti-sickness tablets because you’re not feeling sick and don’t feel that you need them. You don’t feel sick because they are working! And if you stop taking them and then get sick, you wont be able to keep them down long enough for them to start working again. ‘Nuff said.

10) Neutropenia and infection. Your white blood count (and therefore immune system) will be abnormally low normally 10-14 days after your chemo and it is recommended to avoid very public places (public transport, theatres, restaurants, swimming pools etc), eat according to pregnancy rules (no raw meat or fish, shellfish etc) and obviously do your best to avoid ill people! Wash your hands regularly and carry an anti-bacterial gel with you for occasions when you can’t. You will also be entitled to the flu jab. If you feel unwell or if your temperature rises to 38 degrees or above, contact your Breast Care Nurse or chemo unit immediately – or if they are unavailable, head straight to A&E. Inform the receptionist that you are a chemo patient as they will then do their best to isolate you from more germs! I ended up in A&E being neutropenic after my first chemo. I was givin IV antibiotics and sent home. For my following sessions I had to administer a Neulasta injection the day after my chemo and was invincible for the remaining sessions! My bloods were higher than they were before I started chemo.

Taste Buds Chemo

11) Weird taste buds. I have NO idea why – but chemo affects your taste buds and can give you a constantly yucky taste in your mouth which then makes food taste pretty gross too. Queasy Drops were my saviour – the sour raspberry ones really cut through the icky taste. Pineapple tasted really good (in any format) as did spicy food (although some doctors recommend not eating spicy food when having chemotherapy treatment as the chemo affects the stomach lining). Boiled citrus sweets and mints also took the edge off it. Unfortunately there doesn’t seem to be a miracle cure. It’s annoying – but it passes – and certainly didn’t put me off my food!!

12) Plan something to look forward to for the end of chemo. The day of your final chemo session is a bit of a let-down as you feel as though you should be celebrating, but know you still have the remaining side effects to get through. The day that you REALLY feel as though you can celebrate is the day 2-3 weeks later when you would have been having the next session if it had continued. The relief is amazing. And every day you feel stronger and healthier and hairier… So, plan something fun for a week or 2 after your final chemo. You totally deserve it. I went to Cornwall with my friends for a week of good food, bubbles and board-games and then with Mr B for a spa weekend in a luxury hotel. It lovely to have something to look forward to and to escape from the constant hospital appointments for a while.

to-do-list

13) Be aware that some side effects last after your final chemo. Unfortunately the side effects with chemo don’t stop with the final treatment. Naively, before starting chemo I thought it was all about vomiting and hairloss. I didn’t realise that there are other side effects during and for a long time after chemo. I really, REALLY struggle with chemobrain. My brain is mush. I used to be an intelligent, efficient, multitasking, thoughtful person with a practically photographic memory (if I do say so myself!). I am now so forgetful it’s not even funny.  I have zero concentration and multitasking is now a thing of the past. It is rather confusing, inconvenient and bloody frustrating. I mention this, not to scare you, but to make you aware of it, so that if/when it hits you don’t think you’re going mad (like I did! Had obviously diagnosed with early onset dementia or brain secondaries!). All we can do is embrace the to-do list and wait for our little grey cells to start behaving again! I also struggle with eyesight, severe fatigue, menopausal symptoms and my weight and fitness levels. See I is for… I’ve finished but I still feel rubbish.

12 Responses to “C is for… Chemo Shmemo”

  1. insahmity January 9, 2013 at 3:15 pm #

    I especially like your tip about keeping a chemo diary. I was so sick after my first chemo, I don’t remember exactly what happened when, yet I managed to write down what happened daily (sometimes catching up the day after). Now, preparing for my second chemo, I can discuss with the oncologist exactly what happened when, and plan side effect meds accordingly. Great idea!

  2. Jon son June 18, 2013 at 8:27 pm #

    I can discuss with the oncologist exactly what happened when, and plan side effect meds accordingly. Great idea!

  3. anne bouras September 3, 2014 at 10:38 pm #

    What a great piece. I had my third cycle of FEC yesterday and had more or less all the side effects you mention. Emend was prescribed for prior to the Chemo and for two mornings after – soooo much better than last cycle – great med!

  4. Rachel ingram May 30, 2015 at 8:26 pm #

    Thank you so much, I don’t have breast cancer I was diagnosed with Hodgkin’s lymphoma and I swear this whole post describes me in a nut shell minus a few differences!! Thanks I needed to know it was someone out there with me

  5. Debbie June 25, 2015 at 3:54 am #

    thanks for you frank hints. I am about to start my first round of chem and I appreciate all the commonsense ideas and strategies you have given.

  6. Jeza August 1, 2015 at 9:31 pm #

    Hi. I’m 41 (FL USA) and was just diagnosed with IDC ER+ PR+ June 25 2015. Lumpectomy July 24, 2 lymph nodes affected. Awaiting staging now. I inadvertently stumbled upon your website interestingly enough while looking for information on chemo and its side effects – specifically in regards to eyebrows and the drawing them back on. You are SO real and SO witty and SO eloquent and I’ve laughed more in “Chemo Schmemo” than I’ve laughed since June 25. I will now be starting from “A”… Thank you so much, so grateful to have found you. xx

  7. Jeza August 1, 2015 at 9:45 pm #

    Correction: I just left a reply with an unintentional mistake a moment ago… I meant to say I’d read and laughed and appreciated your wit with “B is for Beauty Tips” ( not “Chemo shmemo) -pardon 🙂

    • chemo for beginners August 2, 2015 at 4:46 pm #

      Hi! Thanks for your lovely messages. So sorry you’re going through this too. Good luck with your treatment. Do let me know if you have any questions I can help with at any time. xxx

  8. Sam Fisher August 13, 2015 at 7:44 am #

    Thank you so much for putting this blog together. I start chemo next Thursday and reading this has really helped me feel better prepared. You are a very inspirational person and I wish you all the best with your recovery xx

    • chemo for beginners August 18, 2015 at 1:28 pm #

      Is it this Thursday coming? Hope it all goes well. Just take care of yourself for the first round. xxx

  9. Pixie April 27, 2016 at 2:02 pm #

    Hi… I also had a Power port…. as I would be having 6 chemo and 18 herceptin and they decided my veins wouldn’t cope. Mine also got infected after round one and i ended up being rushed into surgery to have the dratted thing removed.The wound then continued to ooze for the reminder of my treatment. I then went on horse strength anti-biotics for 2 weeks before being taken back to surgery for Power port number two fitting. Like you, I have scars high on my chest and wished i had had the option of a port being fitted in my arm. I am now expert at finding evening dresses with high necks! Everything I have learned about cancer treatment came from other women being treated, found the medical profession avoid telling you an awful t of stuff.

  10. nellyandherdaughter May 2, 2016 at 5:37 pm #

    Hi there! Four years further down the line I so enjoyed your blog. I have 2 more FEC’s to go and feel absolutely bloody awful. No strength in my legs at all and even walking my miniature dog for 20 minutes is a huge challenge. Hey ho, it’ll pass. Hope you got yer brain cells back. Mine are over there somewhere. Love from Nelly. X

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