Kim's Top Tips for Chemo (and living with a Cancer Diagnosis)

Originally this post was just going to be about tips for chemo, but I ended up on a bit of a roll, hence the title.

Hair

• I thought I would start with this one as this is the first thing that springs to mind when “Chemo” is mentioned right? If it’s confirmed that hair loss is a given, I think it’s best to prepare yourself by cutting it in stages like I did. I did this because I could not bare the thought of my long hair falling out in clumps. I went chin length, short and then grade 2.

• Noticeable hair loss will start to happen just before Chemo round 2. It’s an emotional time when it falls out no matter how well you prepare. Sort out wigs and scarves beforehand. I practiced scarf tying techniques’ prior to my hair falling out. There are lots of tutorials on You Tube.

• Most Cancer Hospitals provide a “Cold Cap” if requested. The Cold Cap is basically a helmet filled with ice and can prevent you from losing your hair. (The theory is that the most cell damage occurs whilst the chemo is being administered. Freezing the hair follicles prevents damage)  It doesn’t always work though so be prepared. The cap goes on during Chemo administration and as you can imagine can be quite painful as you will basically have a bag of ice on your head for about 2 hours. I decided against this as I didn’t want the stress of wondering if it would work or not.

• You may be surprised to hear that hair loss does not just occur on your head!!! Hair loss happens everywhere, yep everywhere, even the hair in your nose!  Typically the least amount of hair loss happens on your legs (I know, shit isn’t it) but regrowth on your legs is very very slow. 

Nausea

• I have been very lucky in terms of nausea but I know that most people really suffer with this.

• Take the anti-nausea tablets provided. You will also be given as and when tablets if it gets bad. Apparently ginger helps in any form, raw, tea and biscuits.  If all else fails “Emend” is the king of anti-nausea meds which can be provided by your Cancer Hospital. It works wonders apparently. They don’t provide it straight away as it’s expensive, but if you are struggling they will prescribe it.

Mouth Care

• Go to the dentist prior to starting chemo for a good clean. Explain to your dentist that you are about to start chemo and they will give you a prescription for Flouride toothpaste and mouthwash. During Chemo a dentist will not touch your teeth due to the risk of infection so it’s really important to get your teeth it tip top condition beforehand

• Chemo can make your mouth really sore but it hasn’t been too bad for me. I believe that this is because I was well prepared. I bought Biotene toothpaste (for dry mouth) I have been brushing my teeth with it after every meal. I also got some Difflam mouth wash which I use if ulcers start to appear. Really good stuff. For painful ulcers which I have had on the tip of my tongue Oraldene gel is amazing. The mouth wash and gel can be prescribed by your GP.

• Another trick is to suck on ice lollies just before, during and just after chemo. This theory works in the same way as the Cold Cap (see hair section). I did this and as I said I have not had too much trouble with my mouth. On the one occasion I didn’t do this (because Clatterbridge only had Calipos in stock which I couldn’t stomach at the time – too sweet) I spent the next two weeks with a manky sore mouth.

Veins

• As soon as I was diagnosed my veins went into hiding. Can't blame them really. All of a sudden I found needles painful. Unfortunately chemo wrecks your veins. The FEC regime in particular. FEC strips your veins of their elasticity and so can make them hard and sore.

• I chose to have a PICC line fitted just before my third chemo, but I so wish I had had it from the very beginning. The PICC is basically a cannula which is inserted into a deep vein in your arm and remains there until you finish chemo. Yes it isn't exactly a good look but it saves so much pain and bother. I highly recommend having a PICC line!!!

Skin

• Chemo can really effect your skin, but again this is different for everyone. In my case the skin on my face is probably in the best condition it has ever been in, really clear and smooth. Chemo can make your skin dry though so it’s best to use something nice and natural. I’ve been using organic coconut oil all over including my scalp. It’s lovely.

Hydrate, Hydrate, Hydrate!!

• Drink plenty of water the day before chemo and on the day. This helps to flush the nasty drugs out. That may sound odd but don’t worry you won’t flush the chemo drugs out so they don’t work. The drugs very quickly attack the fast producing cells (hair and cancer). You won’t affect how chemo works by drinking loads of water.

Food

•  Your taste buds will change. Foods that you loved before may make you want to vomit and you may all of a sudden crave foods you don’t usually like. I was told not to eat foods that I really enjoy on chemo day and the few days after as apparently I would go off them. I thought this was absolute rubbish, but actually it’s true. I ate a bacon sandwich during my first chemo session and now the thought of a bacon sandwich makes me feel sick. Strange huh.

• Many people put on weight during chemo (yeah I was surprised too). This is due to the steroids, water retention (another reason to drink lots of water to help flush it out), inactivity and comfort eating. I have put on about half a stone, so have actually done quite well. I’m told this will fall off once chemo is over with.

Exercise

• Is definitely recommended. I did a lot of exercise prior to being diagnosed but now unfortunately spinning and running is out of the question. It is recommended that you walk for half an hour a day. I would be lying if I said I have managed this. Sometimes the motivation just isn’t there. However I have found that a little walk makes me feel better. During chemo week, try your best. Take someone with you, hold on to them and close your eyes. It really helps.

Nails

•  Chemo can affect your nails, depending the regime you are on. There is a possibility that they will discolour, go ridgy and fall off. One way to prevent this is to paint them a dark colour. Apparently the damage is caused by UV rays and so painting them dark stops the rays getting through. I’ve kept mine painted throughout and also used OPI Nail Envy which helps to strengthen them. My toe nails are tingling so I fully expect them to come off at some stage. If your nails do come off they usually come off a month or so after treatment has ended, but apparently it doesn't hurt. (Tut – chemo the gift that just keeps giving)

Eyelashes and Eyebrows

• These will start to go after Chemo number three. I have been using Rapidlash (cheapest on Amazon) on my lashes and eyebrows every night. I know of one woman who used this but didn't use it on the bottom lashes which were the only ones that fell out so it must be good stuff.

• Once my eyebrows and lashes started to come off I looked ill. This is a pretty horrible point for us girls. I highly recommend booking yourself onto “Look Good Feel Better” where you will be shown some really good makeup tricks. Many women report that attending these sessions was a “turning point” for them during their treatment. Its true if you look good, you feel better.

Sanity 

• Being diagnosed with Cancer is probably the scariest thing you will ever go through in your life. It is a complete rollercoaster. There is so much to think about and you are thrown into a world you never knew existed.

• Chemo drugs play havoc with your hormones but for some reason not a lot of information is provided on this. (A definite gap for pre-menopausal women)  

• Being emotional during this time is completely normal. We are all different and will handle it in our own way. I have gone from being super strong, an emotional wreck, extremely positive, extremely negative, every day is different. There is a lot of support out there though

• Counselling is not offered to young women with a Breast Cancer diagnosis (which is f**kin ridiculous).  My advice would be to ask for it soon after diagnosis and ask for specialist counselling in terms of Cancer. Your Cancer hospital will have this service but you have to ask for it. Do it, you need to talk to someone about what you are going through. Talking to a stranger is really helpful as you don't have to worry about protecting them from those fears and concerns rushing around in your head.

• There are lots of places you go to for alternative therapies. Many Cancer Hospitals have a Maggies centre, Hospices provide the service. It’s all free so take full advantage. This has really really helped me, plus it’s nice to have something to look forward too and helps to fill your time.

Friends and Family

• This is a really difficult time for them too. Watching you go through this must be really hard on them. But this is the time when you have to be really selfish; you have to put yourself first. Do what you need to do, talk, don’t talk, laugh, cry, get angry, and scream, whatever.

• At first you will be bombarded with attention but this reduces over time and this in itself can be hard to cope with. People soon get bored/forget/ have to get on with their own lives and this is absolutely fair enough. Those who don’t have or who have never had cancer cannot comprehend how you feel or the world you have been thrown into. There is information for friends and family out there, so point them in the right direction. Also ask for their help. People often don’t know what to do for you; they want to do something but don’t know what. So now is the time to be cheeky, just ask.

• In “cancer world” people often say that you find out who your friends are and this is very true. I have heard some really sad stories about friends and sometimes even family members disappearing off the face of the earth when cancer is diagnosed. Some good friends become acquaintances and some acquaintances become good friends. I believe that in many cases friends assume that you are doing well and just getting on with it and so they leave you to it. However most people don’t see you when you are gripped with fear, delirious, hallucinating (yep you heard me), in pain and emotional they only see you when you are out and about with your makeup on, wearing a false smile and so they presume that you are “fine” when actually you are far from “fine”. This is an incredibly lonely time and so support in terms of visits, calls, texts and generally cheering you on are so so important for your recovery.

• My opinion is that if anyone lets you down, is not there for you, or just doesn't seem to be able to find the time while you are going through this, then you really should evaluate if they should be in your life at all. If there was ever a time to bin off those who clearly don’t give a shit about you this is it. 

Support

• There is a lot of support out there. MacMillan, Breast Cancer Care, online forms, local support groups and so on. I have taken full advantage of this. BCC have a brilliant service called "Someone Like Me" whereby they buddy you up with someone around the same age who has been through the same treatment. You can choose to have contact with them by phone or email. I have not used this service but think its a great idea and is something I plan to volunteer for when my head is back on straight.

• I have sobbed on the phone to MacMillan, I always pop into the Macmillan centre at my hospital when I’m there for a chat, I spend a lot of time on my online support group of choice, and I will be attending a Younger Womens event early next year.

• You really need to be proactive and get yourself out there. Meeting and talking to other people with cancer is really important, they get it, those who have never had cancer don’t.

The best piece of advice I can give is to talk to someone who has been through Cancer and Chemo. This experience is unimaginable and indescribable. Only those who have been through it can comprehend it. I have heard about people who have “sailed through it” but I’m sorry I don’t believe it. I have spoken to many many women who have been through and are going through this and not one of them have described it as easy. Yes our experiences are different, side effects can be different, less severe or more severe but all would agree that chemo is tough, really tough but it IS doable. Women really are amazing creatures, we can get through anything.