A realists guide to preparing for chemo - My Top 10 Tips

When you get the diagnosis that you have the ''C''' word, or as I like to call it - Evil Edna, it can be life shattering to say the least, for both you and your loved ones. You immediately start to think about the worst possible outcomes, all the distressing scenarios of what might happen to you suddenly begin to spiral out of control in your mind, and you turn to 'Doctor Google' and haunting images begin to take over your life.  Planning what flowers I was going to have at my funeral seemed like the logical thing to do. 

It took me about a week or two to digest the diagnosis, the longest 2 weeks of my life, then quickly I had to try to begin the process of  moving forward with a plan. The plan consisted of what I needed to do to keep myself from going insane, and what I HAD to do to both mentally and physically prepare for the next stages.

Flash forward to today, two and a half months later, Sunday 30th July 2017, and everyone I know, and now meet have commented on how positive I am and what an inspiration to them I have been.
It warms my heart to hear all these lovely complements, but getting to this point wasn't the easiest and maintaining it isn't any easier. The truth is, I have no choice but to be positive. Stay positive and keep living my life. I'm 31 for crying out loud. I could easily sit at home, and as the Grinch likes to put it, 'wallow in self pity' but why? What will that be achieving? What value would that be adding to my life and, the people I care about the most ? None. 

I had to prepare to get ready to fight the biggest fight of my life...or.... let it beat me. Anyone that knows me knows how competitive I am, so losing is no option. In fact the way I have to see it is I've already won. How I hear you say? Ive already won because it hasn't taken my spirit. Edna that bitch hasn't made me stop living my life. In certain aspects I guess it TEMPORARILY has, but if I can do something or go somewhere I will. 

So below are the main things I did to prepare. You might stop reading at this point and think that this won't apply to you because you don't have something tying to kill you embedded in your perky breast....but its not just about having an Evil Edna, it might be something else, another battle you are facing. Something that alters your body permanently too. Id like to think that this post might help someone, someone you may know. Someone who perhaps has recently been given the diagnosis and not dealing with it very well. So please feel free to share this with them.

Lets get down to business.

1

Don't play hide and seek. This isn't a Fugees song

Its sooo easy to lock yourself away and google everything and get scared about whats going to happen etc etc. The thing is, you don't know whats going to happen, but what you do know, is what you do now, today, this minute, that WILL and and can make things easier.

Honey go to that party, meet your friends and talk to them about it. There is no easy way of telling people so why leave it to a phone call? 'Hi so I'm calling you to tell you I have cancer' - who the hell wants a phone call like that??
What did I do? Well to be fair the people that knew about the initial stages during biopsy etc may have received that phone call...so...oops sorry about that ...I was wallowing in self pity is my only excuse.
So, I created a Whats App group for my nearest and dearest and told them that way. I figured it was easier to bulk message it rather than have to repeat the same thing a billion times over.

I arranged a get together, had drinks down Brink Lane and sat and spoke to my pals.  It helps saying it out loud, Trust me. The more you bottle it up, the quicker your mind will start to cannibalise. 

The truth is, some of your friends and family members won't even know what to say. They won't know how to deal with it either. So be straight with them. Tell them not to treat you any differently and if there is some event going on, to still send out that invite. Just because you've got cancer, doesn't mean you stop going out. Hell you ain't even started chemo yet! Keep making jokes about it,  laugh rather than cry, and even name that son of a bitch. You own it it don't own you right..!

Also a word of warning, be prepared for the 'I cant face you friends'. Trust me they sadly exist. They are the people who might not even send you a text until they are ready to, or be forced by someone else to come and see you. 

They can be weird and not know how to communicate anymore, best way to describe it...they stand there looking at you like you have a dementor standing by your side...yep a confused Ron Weasley maybe. But there is a way to deal with them. Continue to meet and continue to be social if they mean a lot to you, OR, you can tell that selfish son of a gun to do one, didn't even send me a text. Idiot! ;)

But seriously guys, staying social will beat Mr Anxiety too. Trust me when you start chemo they'll be some of that mofo floating around, and when treatment begins and you are having a good day, as in energy levels are high like styles P , keep seeing friends, it helps a lot!

2 

Buy Buy (in your Mrs Doubtfire voice)

When you start your treatment its hard to know what to expect. Dr Google I'm sure has given you the low down on the side effects, but the best thing to do is to find out as much as you can from your oncologist and from good forums. (More about forums below so keep reading before you join any old one).

Make a list of what you need and with that list take it to the shops gurrrrl!

Retail therapy can be an amazing thing, its literally a no regrets about spending your hard earned cash fantastic way of dealing with your diagnosis and preparing you for chemo.

When I asked my nurse about the side effects of my type of chemo, the first thing she mentioned was 'you're going to lose your hair'.  So when I went out to buy my list, albeit straying a little ...I also went into clothing shops and bought things that would look good for when I'm bald. Bald heads rock dude, the only thing I don't like is this breeze I can constantly feel, according to my husband its normal, and that is why he hates shaving his hair in the winter when I tell him its getting too long. My bad....

Retail therapy is also a great way of helping your friends come to terms with it too. Take your best friend with you, it will educate them and help them understand what needs you might have later on, basically lets cut the shit,  the presents they can buy for you.
No but on a serious note, taking people with me on different shopping days helped us all so much. I didn't rush to buy everything at once. I saved certain purchases such as wigs to go with different friends. Believe me, you have more love around you then you know. Health issues are sometimes a sick blessing in disguise, the real friends step up and your relationships with them grow a whole heap stronger. Love you guys.

3

Don't do...nothing

They say keeping busy would help. Well it did.
Dealing with an illness is similar to a bereavement, that's the only thing I can compare it to. Going back to work when a loved one passes away keeps your mind distracted for a few hours. Treat this as you would a loss. Before starting treatment, the perfect time to find out what else you love doing or discovering hidden talents you may have is now. Take advantage of the time you have off from work and do something you enjoy. It is also therapeutic! I have met so many women who started their dream jobs because of the time they had off work.

When treatment starts, you may be in the house several days in a row in between your cycles, so, having something to do is not only a positive way of passing time, but it keeps your brain active. If you have done your research, then you know you will experience a thing called 'chemo brain' and I swear to you it exists. The past few days have been rather annoying as my memory has been ridiculous, but this will pass and keeping that brain healthy is keeping it busy. Read books, write a blog, write poems, paint, the list is endless so get cracking. If you get bored of one thing, move on to another. Do not do nothing. That's my only warning today.

4

Work work work can wait wait wait 

 Work is  the one thing normal in your life that you won't be doing for a while. Depending on your treatment that is. But I for sure wouldn't last an hour let alone a working week at this moment in time. 

Fortunately, I have great employers who have been very understanding and most people I have met going through the same thing, seem to have similar experiences too. 

Having such a massive health issue entering your life, like a dirty little cockroach in your hotel room whilst on holiday, can be hard for some to people to deal with, but this is the time to focus on you and you alone. 

Find out everything you can about your company sick pay or if you have major concerns about finances Macmillan are great to talk to and have grants that help. They can even connect you to people that can advise you on benefits you may be entitled to. Don't worry, you are not a benefits scrounger and won't be on the Jeremy Kyle show in 5 years so get that out of your head right now.

Believe me cancer can cost you ALOT. You'll quickly find that the lifestyle change or everyday essentials you need add up. Like I said before, its important to find out side effects and prepare for them, and even if you do decide to go back to work shortly after treatment, be aware that sometimes trying to stay normal and keep up appearances at work might not be the best thing. Germs for one are not our friends. Work environments are a breeding ground for dirty germs, hell i don't want any infections...especially during certain times of the year, so bare that in mind.

So discuss work options, phased returns, going part time, and keep in touch with them throughout.  Can you tell I work in HR...

5

Dr. Google is an idiot

Yes as it states above.  Leave any questions or concerns you have to the experts or your oncologist.

Dr Fucking Google is an idiot. Not qualified. I tell you that because that is what I did, Googled everything in the first week after diagnosis and scared the crap outta myself. Fortunately I was one of the lucky ones, I stopped, sadly we lose a lot of sanity to search engines, so don't be one of them.

6

Don't Decay

Basically, you want to go get your teeth checked, so book in to see your dentist asap! If there is anything wrong you need to get it sorted out while you have some time, that is if you have a few weeks before your treatment begins. I left it late, however I was lucky as my teeth are perfect....ching.

Chemo can cause havoc on your gums and mouth, so make sure you get some mouth wash too.  

The GP can prescribe this free on the NHS, remember your prescriptions are free for the next 5 years! 

7

Mama was wrong, always talk to some strangers

So as I mentioned above, joining a forum is a useful tool. However, there are so many cancer forums that are generic, you'll be confused about where to join and end up knocking on the wrong persons door.  Please don't join those. I did just that, and boy did it scare my tits off even though I haven't had any surgery yet.

You'll soon find out from your Doctor exactly the type of cancer you have, so go join forums for that type. For example, if you have Breast Cancer, try to avoid a Breast Cancer forum, instead, find a forum that relates to your type. You'll find that most people on the forum will be experiencing similar, not the same, side effects that you might experience. Go introduce yourself to everyone and openly ask how other people prepared and how they are coping. It can be a great comfort. Your chemo and treatment plan will not be the same as another persons and chemo affects people in different ways, so if you are worried about anything, turn to your buddies on the forum, they will understand what you are going through and give you tips about how they have coped with night sweats for example. Visit your doctor obviously if there is something else worrying you, I wouldn't want to be responsible for you not seeing doctor now would I...

Sadly not all our friends will understand so speaking to complete strangers is a great way of chewing someones ear off who understands, it also makes you realise that you are not alone and actually, your type is not as bad as some other peoples. And besides, making new friends along the way can only be deemed a good thing.

8

Hair today, gone tomorrow? 

Yes, the hair situation. I'm bald FYI.

Firstly find out if the chemo you are going to be taking causes hair loss, remember not all chemo do,  so don't go buzz cutting if you don't need to! That would be funny. But if you ARE going to lose it, don't worry! Wigs nowadays are amazing. 

A few weeks ago my hair starting shedding, a lot, but because I prepared mentally for it, I didn't cry, not once. Even though I knew it was going, I thought I'd hang on until enough came out to ensure it was falling out..for definite! I do admit, I thought my body would outdo modern medicine and my hair would stick around, but no it didn't, although my Turkish arm hair is still very much in tact.... Jeez.

Prior to the shedding, I kept imagining what I would look like with no hair. I started wearing scarves to get used to the idea. I slowly began to detach from my hair and started planning a party!

 Instead of visiting a hairdresser and bidding my split ends an emotional farewell, I flipped the script on evil Edna and had a BBQ instead. Yes that's right, I invited my friends over and had a shaving party.  A few of my close friends decided to brave the shave with me, so it turned out to be a nicer experience then some others I've seen flying around on the net. We did all look like the cast of American History X by the end of the night though...

Now, you'll probably be told this a million times, but your hair WILL grow back. Remember to keep the 'life' part before anything else at the forefront of your mind. That is what got me past the point of caring about my bleached out split ends. We are at war right now, so if it means losing your hair, let the bastard take it, but your life is way more important.

If you have, like me, shaved off your hair already, you'll know that actually its quite fun playing and experimenting with wigs and scarves. Ive been rocking the crap outta my scarves and have received so many compliment on how chic it looks. You can wake up with a different coloured wig everyday and my gosh, let me tell you, having a shower without worrying about wetting your hair in the morning is amazing! Water bouncing off my bald head and massaging my scalp every morning, ooh yeeaaa. I tell you the boys have it so easy. Why can't we?

Enjoy it, remember its part of the process and if you do have an emotional attachment, please try to separate yourself from it. Find a way that works for you. The emotional distress will eat you up otherwise. Speak to someone if you are really worried. You got this!

9

You know that OCD, yea you know me

When preparing for any treatment, the best thing to do are these 2 things. Well the best 2 things I did at home anyway. 

First off, get into the habit of using hand gel. You will get sick of that smell at some point yes, but this little pot of bacteria killing lube will potentially prevent you from getting sick. 

The second thing is, clean your unsightly house and make it a haven. 

The last thing you want to do or even think about is any heavy duty cleaning whilst you are recovering. Wanted to paint little Timmy's room, do it now. Don't wait till later on, you don't know how you are going to feel, so anything major that needs doing, do it. Oh husband said that burst pipe was going to be done yesterday, well sonny Jim, get your skates on and fix it. 

The amount of repairs and redecorating we did was redonkulous but, I'm glad we did. I'm not really in any fit state to be painting hallways right now....although that is one job we didn't do...but husband has the paint brushes out in the shed...I'm pretty sure they haven't gone missing....

10 

Final note 

Keep note of your experience. Record vlogs, write blogs, keep a diary, do some paintings. Putting thoughts down is a form of therapy and personally, I never thought blogging would be my cup of tea, but now, I'm hooked. I started a charity called 'Wigs for Heroes', and have now created a blog in connection with it - yep the one you are reading, to help others that the charity cant reach. 

Remember your experience is yours, no-one else will go through your journey but YOU. You never know you, you may even get published?!

In the beginning when I got given the news,  I kept a video diary, but looking rough the majority of the time soon put a halt to that....just kidding. Because I had started the charity I wanted a way of helping others online due to time spent recovering at home. Hence the twitter, Instagram and blogspot. 

Think about it, you might like it. Keeps the brain active that's for sure. 

If you would like to connect to my other social media accounts check out the Bar at the top of the page, they will direct you to where you want to go Frodo.

So guys I hope you found this of some value, or even just fun to read. Remember that going through chemo can have its bumps in the road, but stay strong. It will be over soon.

I hope you get through what ever battle you are facing right now with positive vibes and happy memories. 

Over and out

Kaz 

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