Answers to the questions that I had in the beginning

Sophia Rossi
May 17, 2019
13 min read

Updated: May 18, 2019

This post is for anyone who has just been diagnosed with cancer and feels like they are manning the sails of a raft in a tsunami.

Don't worry, I've been there and it does get better. I promise. When I was diagnosed, I was awash with questions: "Can I play lacrosse? Can I do my degree? Can I get drunk?" As soon as I knew the answer to them I was hit by another splash of questions: "How does the Chemo go in? What should I bring? Should I be reading up about it all?" Then I was slapped by more: "Why are some people avoiding me? Will I loose my hair? Is there anyone who understands what I'm going through? " In an attempt to help someone who has recently been diagnosed, I have answered the questions that I had in the beginning. I've included some small pockets of advice and recommendations that helped me when I was diagnosed.

What are the next steps?

After you have been diagnosed you will probably have to have more tests and scans - yes I know you've already done loads. This is so that they can find the best way to target the cancer and treat it efficiently. Personally I had a PET scan where they pump you with a really small amount of radioactive liquid and you are moved in and out of a tunnel. They wait about an hour after they’ve given you the substance to do the scan so you may want to bring a book or an iPad to pass the time as you are left alone. If you struggle with claustrophobia here are some tips to help you get through:

Close your eyes and breath deeply in through your nose and out through your mouth, counting your breaths up to 10 and loop back to 1.
Picture a happy place and focus on its small details
Pick out 5 things you can see, 4 things you can touch, 3 things you can hear, 2 things you can smell and 1 thing you can taste.

More info on other scans can be found in the links below.

After the scans, your healthcare team will come up with your treatment plan and you will probably have another meeting to discuss the plan and they will give you a start date. For me, although my healthcare team were fantastically efficient, it felt like the time in between being diagnosed and starting took forever. You just have to be patient and use the time off treatment to do exactly what you want to do! This is also a good opportunity to sort out any admin and small jobs like:

Last minute trip to the dentist
Find out if you are liable to extra benefits
Buy a notebook to help you get organised
Buy a soft toothbrush
Buy hand sanitiser
Sign up to any supporting charities like Trekstock

Treatment

What happens with treatment?

Everyone has a different treatment plan. Even if you are having chemo you may be having different drugs or at different times so this is something to ask your HT (Healthcare Team). However, don't forget that you are in control of your recovery so don't be afraid to ask for a second opinion if you feel uncomfortable.

You cancer may be treated through:

Chemotherapy
Radiotherapy
Surgery
Hormonal therapy

Personally, I have only had chemotherapy and will have radiation so here is some information on them:

What is chemotherapy?

"Chemotherapy uses anti-cancer (cytotoxic) drugs to destroy cancer cells. Cytotoxic chemotherapy drugs disrupt the way cancer cells grow and divide but they also affect normal cells." (Macmillan)

Some people have to stay in and have it over a few days whereas others just go into the day treatment unit, again chat to your HT.

*A Brief history* Chemo was derived from the mustard gas that was used in WWII and the 1940s. Yale pharmacologists, Alfred Gilman and Louis Goodman examined the therapeutic effects of mustard agents in treating lymphoma. I find it very interesting that something that was once used to end lives is now used to save them, very Yoda. Philosophical porn really.

How does it go in?

You can have chemo via a drip or in pill form. If you are having drip then you can have a Port, Hickman or PICC line fitted where a tube gets put in your arm or chest and sits in a vein. They use this to insert the drugs and take your bloods. If you are uncomfortable with this then you can just have a cannula fitted every time you go in. I have a PICC line and I don’t notice it at all even when they were putting it in. You can't get it wet which is slightly annoying but it means you don’t feel like a human pin cushion every time you need your bloods done or want chemo. More info can be found below.

What happens on the day?

To put it simply:

Register at desk and find your chair for the day
Nurses check/take your bloods* and temp etc. to assess whether you are fit enough to take it
They hook the drugs up
You wait
They flush your line (run saline water through to clean) and change your PICC line dressing if you have one.
You leave.

*you can have your bloods taken a few days before either at the hospital or with the district nurses so you don’t have to wait.

What should I bring?

Blanket as can get cold
Water bottle
Book/knitting/puzzle/iPad/laptop for entertainment
Yummy snacks
Lip balm and hand cream
Comfy socks
Your pills and your pill schedule
A friend

What should I wear?

Depends on how you feel. Definitely something comfy, I have been known to go in in my PJs, no make-up and fluffy socks but some times its great to kick the doors open in your floral dress, docs, Bald Move headscarf and red lipstick.

Do I have any other pills?

To help you deal with the chemo you get given some wicked anti drugs. Like:

Anti sickness - if they don't work then ask for some others
Antifungal
Antiviral
Antibiotics

You will get given a pill schedule that you have to stick to, it can get confusing but you get used to it with time. They have to tell you all of the side-effects but don't get scared as its different for everyone and you may, probably will be fine.

What are the side effects of chemo? How will I feel?

OK, first take a deep breath. I'm about to go into the scariest bit but before I do remember that everyone reacts with the drugs differently (such an annoying thing to say, I know). I even react differently every time I have the drugs. Sometimes I don't notice it at all and go on a 5k run 2 days after and others I'm in bed for three days tripping out over the buffoonery of Game of Thrones.

When I had ABVD, I had chemo once a week for 2 weeks: I generally felt uneasy days 1-3 and then gradually got better and by day 7, when I was almost back to normal. Sometimes it wouldn’t hit me until day 3 so you just have to react to your body and give it the rest it needs - it's going through a pretty tough battle.

On BEACOPP I have a three week cycle where I have to go in Monday, Tuesday and Wednesday in week 1, then Monday of week 2 and rest for week 3. After my first cycle, I felt awful day one but then I got some new anti-sickness drugs and was much better day 2 and I slept for 12 hours when I got back. Then on day three I felt better but drowsy. I can't tell you how the rest goes because I haven't done it yet but I will update when I have.

Here is a list of the main side effects:

These are the main side effects that I experience and what I do to manage them:

Chemo brain. Having foggy thoughts. I spent a lot of time feeling confused and this makes it hard to make yourself feel comfortable. Unfortunately, there's not much that you can do to make this go away but rest and drinking water can improve it.
Anxiety and depression. I definitely struggle with this and it comes and goes with no rhyme or reason. I have recently been working on having a positive mental attitude where if I say to myself encouraging words like "you can do this" it can make things seem clearer. It is also a good idea to ask your GP to refer you to a councillor, sessions are like having a cast for a broken leg. Get outside and try exercise - read my last blog!!! Download Headspace - really helps me the morning of my chemo sessions where I get really anxious. Just 5 minutes helps me to calm and gain a level head.
Constipation. Prunes and dried apricots. Get that fibre in - can buy fibre orange drinks that help to smoothen things out, Coffee and exercise helps too.
Nausea and sickness. Ginger is a natural anti-sickness, when I feel really sick I chop It up into small cubes and bite on a few and I feel better within 20 minutes. Ginger tea and biscuits are brilliant
Cracked nails. Buy nail stregnthening polish. This is the one I have: https://www.amazon.co.uk/Sally-Hansen-Miracle-Thickener-Packaging/dp/B004PU3LYI/ref=sr_1_fkmrnull_3?crid=23PDBNLD0O269&keywords=nail+strenthener+polish&qid=1558099010&s=gateway&sprefix=nail+strent%2Caps%2C185&sr=8-3-fkmrnull
Dry skin. Aveeno moisturisers are brilliant as they have no added chemicals and are sensitive to you r precious beautiful skin.
Dry mouth and sores. Suck on frozen pineapple. Don’t ask why it just works so well for me.
Low immune system. Wash your hands lots

Here is a video on chemo:

Cancer treatment: all about chemotherapy

Last notes :

On my worst days I just feel confused, uncomfortable and anxious and I don't know how to make it better so I try to get outside and go for a small stroll or I give myself some rest. Your taste can go a bit weird too, it tastes metallic and you can't taste much but try to remember your three meals a day as weight loss can compromise your treatment. A biscuit is better than nothing.

Here is a quick video on radiotherapy:

Cancer treatment: all about radiotherapy

Life

Do I need to hide in my room protected from the world and it's nasty germs?

You can still live your life. This is the most important thing as its so important for your mental health. You have not stopped living you just have to be careful. I was SO distraught by the fact that my life had just been ripped away from me but you don't need to be. You can still do the things you love but there are just new limitations (unless you love smoking or doing crack then stop that). Yes, you may have to give up some things. For me, it was lacrosse but you just have to find replacements. Explore hobbies like cooking, sewing, painting or even tai chi. Since treatment I have been to parties, gone running, got into yoga and I'm walking 10 miles on Saturday for Trekstock. So I wouldn't say that’s not living.

Some chemos leave you with low immunity and therefore you do have to be aware of infection and disease. Some people go all out and take up a neutropenic diet by avoiding raw fish, undercooked meat or eggs, quitting bio-yoghurts and paté whilst others (namely me) don't take much notice because your soldiers can't be dunked in a hard boiled egg. Here are a few tips to keep away from germs and infection:

Wash fruit and veg before you use it
Don't eat anything past it's sell by date
Wash you hands lot and lots and lots
Avoid travelling in peak times - take hand sanitiser
Avoid large crowded areas like clubs and swimming pools
Rearrange and say no to ill friends and children *remember to tell your friends that you can't be around them if they're ill.

Can I get drunk?

When I asked this, my doctor told me that no-one should get drunk as its not great for us but a celebratory drink here and there won't harm you. If the night runs away with you don't begrudge yourself just chuck it in the f*** it bucket and be more careful over the next few days to be healthy.

Remember you have to look after your mental health as well so if you want to do something but you feel it's a bit naughty then have a discussion with your HT and weigh up the benefits versus the risk of getting a temperature and ending up in hospital delaying your treatment. I often think about the fact that you can just as easily catch an infection from your own gut bacteria than being around others. You HAVE to put your health first.

Work and Uni

Should I carry on with uni or work?

Again, you have to do what's right for you. Some people manage to carry on and maintain normality and just do less hours. It is important that the first thing you do is talk to your employer or uni tutor about it first.

I chose to take a pause on uni as I wanted to have treatment at home and I went to uni 3 hours away. I also felt that I wouldn’t be able to consistently produce the top quality work that I would have done if I wasn’t under going treatment (top-ish anyway aha). You also have to consider the germs that are around in student digs and work places. Looking back now I am happy that I've made this decision but it was hard at the time.

You may want to look into what benefits you can claim if you are working and have to stop: https://www.macmillan.org.uk/information-and-support/organising/benefits-and-financial-support/benefits-and-your-rights

Research

Should I be reading up?

DO NOT GO ON TO DOCTOR GOOGLE. There are some scary stories out there that do not help. I understand that finding out more does ease anxiety and stress and helps you gain more control but ask your doctor for information pamphlets and documents or stick to websites like Macmillan, Cancer Research or NHS. My doctor gave me a small book on Hodgkin's Lymphoma by the charity Lymphoma Action and it was informative, factual and it really eased my mind.

Don't let statistics mess with your head, you are an individual, every case is different statistics are not the last word.

My Body

Will my body change?

I want to write a bigger post on this but here are a few things to get you started.

Unfortunately, your body will change but for the first time in my life and maybe in yours you just have to not give a damn about what you look like. I know it is hard but you have to think about the bigger picture. You're body needs rest and recovery. Food, light exercise and sleep is the magical trio that helps you give your body what it needs.

Should I change my diet?

Here's a picture of my healthy and yummy breakfast

Some people gain weight and some people loose it. You have to take each day as it comes and try to have 3 balanced meals a day packed with fruit and veg. Although I don't like my body as much now as I have gained weight due to constipation and a slower metabolism, I feel that I have built up a bit of a buffer which will be needed if things go pear shaped.

Should I exercise?

YES! Read my other blog.

Will I loose my hair?

Some do and some don't. I think what I feared the most was losing my hair as I used to view it as a part of my identity and it's strongly connected to female beauty but there are ways to combat and deal hair loss.

Cold cap - cap that freezes your head and stops you hair falling out
Get a cut - take it off in stages

I got a Ruby Rose short on the sides, longer on the top power cut and it was one of the happiest days of my life. Luckily, they are VERY fashionable at the moment and it did wonders for my self-confidence. I saw the shape of my head and felt more comfortable about going bald, I found happiness in the fact that I wouldn't have done it if I didn’t have cancer - silver linings and it has slowed down the process of my hair falling out as its not being weighed down. Also having the quiff hides any bald/thin patches. It's been 3 months and it's still there so definitely consider it.

Friends, Family and Support

How do I tell them?

First of all, you don't have to if you don't want to. I took a morning to ring some of my closest mates and family and got it out of the way. By the seventh sibling the crying had stopped and it came to the point where I was saying:

"Hi, just ringing to let you know that I have cancer but I'm not going to die so you don't need to worry"

Looking back now that was extremely insensitive of me and I'm sorry to everyone. Telling people massively helped me as their supportive words and gifts (especially the food ) really made me feel better. I felt like I was gathering a team to help me kick cancer's ass. It may be a good idea to have one mate or family member that you tell all the updates and let them tell the rest as it can be quite tiring. Or better yet, do what the rest of the world is doing and start a blog!

Is there anyone who understands what I'm going through?

YES! If you want it there are loads of support networks for people with cancer starting with charities like Maggie's, Macmillan and Trekstock. Maggie centres are normally next to the hospitals and they are a brilliant place to go and chill in a living room environment and talk to people who understand. They run yoga, drawing and writing classes among many others. Trekstock is a brilliant charity aimed for ages 20-35. They organise style nights, beer nights and help people get moving after they've been stopped in their tracks by cancer. you also get a years free subscription to headspace- ace.

you can also join support groups on Facebook where you can ask for advice or just rant. I'm on Cancer Chicks (https://www.facebook.com/groups/1990171101057652/?ref=bookmarks) but just give it a search and there will be one right for you.

Why are my mates being weird?

Cancer has a big stigma and some people don't know how to cope or how best to help. They may be struggling with their own health fears or have struggled with cancer through a family member previously. Just because someone doesn’t message does not mean they don't care, there is always a reason. Vice versa, if some people just want to do as much as they can and this can be overbearing. The best way to deal with them is to be honest and give them specific ways to help e.g. visiting on a chemo day with a puzzle or giving you a lift to an appointment.

I know that it's rubbish and unfair that it's happening to you but when it comes to family members and close friends remember that they have the battle of it happening to their sister or girlfriend and they don't know how to help. The best thing is to be patient, considerate and thankful. Obviously, true mates won't run away but don't give them a reason to be distant. Help them to help you.

I want to use this opportunity to thank all my mates and family for being a never ending support I have so much love for you all.

Thanks for reading through. would love to hear your thoughts too.

All my love, Sophia x

LINKS AND SOURCES

PET scans

https://www.cancerresearchuk.org/about-cancer/cancer-in-general/tests/pet-scan

https://www.nhs.uk/conditions/pet-scan/

https://www.macmillan.org.uk/information-and-support/diagnosing/how-cancers-are-diagnosed/tests-and-scans/pet-scan.html

History of chemo

https://www.news-medical.net/health/History-of-Chemotherapy.aspx

Picc line etc

http://www.projectbreastcancer.com/portacath-hickman-and-picc-lines.html