Dear Kate
By now you’ll know exactly what you're dealing with. The turmoil, the pain and waiting for various results is over - that is one of the hardest things you’ll ever have to go through. Keep those close to you tight, pull in the friends that can hold you together, the one or two that know you so well they’ll just listen and be there for you no matter what. Each one of your friends will be there for you but in different ways, you get to manage and choose who will help you in varying situations/times over this next period. Don’t feel pressured to get in touch with anyone, your memory and ability to retain information outside of ‘cancer’ is difficult and no one should expect you to be anything more. Feel free to quietly ignore those that don’t understand, and when you're ready to deal with outside situations that are all too much you can.
Do your research, find an oncologist and surgeon that best fits you, ask questions, find people that have also worked with them and make sure they are the best match for YOU. If you are someone that likes to research and find the latest for your specific cancer, ask them if they are open to these ideas but also let them know you value their opinion too. Don’t be afraid to change if you are feeling uncomfortable and it’s making the process harder for you. Find out as much about them as you can at the beginning, this can help to reduce awkward and uncomfortable situations while trying to get your head around an already massive upheaval. Ask a family member or friend to help you with this.
Don’t over organise too much, write a list of things you might need over the next few weeks, the following are very helpful when you start chemo, learn to delegate, or get a little crew together (friends or family), that will sort this side of it.
Calendar for you and/or family - big one so everyone’s appointments/activities are altogether.
Organise someone to come during the week 4-6pm (however many times you need them), even a student to do washing/cleaning kitchen/quick vacuum. Motivation levels are low around this time, and any energy you have may need to go on the kids/exercise for yourself.
Meals, these are incredibly helpful, although you might feel like this is easy, often by the evening a meal is the last thing you feel like. Organise however many meals (you feel you might need) a week, through friends/family or if you don’t want to rely on others, buy a cheap small deep freeze and fill it with frozen meals (also handy if others are making meals).
Encourage anyone who offers to help to drop off healthy salads during the day for lunch/sweet stuff for those afternoon energy dips. Focus on being healthy.
Have some non-alcoholic low-calorie drinks on hand for the afternoon, only so many peppermint teas one can have.
Organise a cleaner once a week, it’s hard to have the energy to do this especially if you’re still working, this could be a friend or family member or something people can put $ towards. Also getting a family member to change sheets, wash and bring back to change again each week - last thing you feel like given energy levels.
Keep a section in your notes for
Oncologist questions
Things to remember
Important dates
Presents, what they are and who from. Nice to look back on and for sending thank you texts when you’re up to it.
Chemo brain - this is real and hard to get your head around. You will forget a lot of things and sometimes two reminders in your phone are just not enough. Tell those closest to you that this is a real thing, often explaining to others it’s like ‘baby brain’ on steroids can help. Ask them to send you reminders of important events/dates/school and after school activities. Remind people that if you don’t get back to them to always follow up, you can read something and 2 seconds later it’s gone never to be thought of again. Ask your family/support person to be patient and help remind you.
Name your tumour - this is so cathartic and helps many friends and family who find it difficult to understand or what to say, be part of your process. For some people it’s easy to use humour in these situations.
Exercise, this is important, try to set goals every week depending on what sort of chemo you are doing. A 20-40min walk, even out to the mailbox on those rough days are HUGE and make a massive difference to energy levels and fatigue. Make this a priority and choose a day every week to set your goals.
Drink H2O more than you ever have, it helps so much to flush out the chemo and any inflammation on the way, you will feel so much better, increased energy levels to boot! Drink two bottles of water before and after chemo.
Food, don’t get too hung up on food, eat what you need to stay as fit and healthy as you can through chemo, but also know there will be days when you just feel like a burger or a bar of chocolate and that’s ok. Everything in moderation. The only things professionals tell you is to limit red meat to once a week, try to consume as many vegetables and fruit as you can, incorporate plant-based meals often and drink lots of water. Sugar doesn’t feed cancer and if you’re eating everything in moderation then stay on that path. If you’re not and you need some advice, don’t be afraid to reach out - it can really help with chemo side effects eating the right foods.
Research - when you’re ready, choose baby steps, but research your diagnosis, find out everything about it so you leave no stone unturned, this is your life, and you get one shot at doing it right - KNOWLEDGE IS POWER. If you’ve heard of the latest drug that might help you, ask your oncologist and surgeon about it and don’t be afraid to advocate for yourself and get second opinions. You’re not there to be their best friend, you’re there to get the best for you. Their professional opinions and thoughts are valuable and will help to guide you through the process but also know that you need to be heard. If you’re not happy at any point, change and find someone who suits your personality. If you find it hard to read anything incase it sounds bad, try telling your brain that, that won’t be you, you will be the person who defies all odds. Be prepared, realistic but at the same time take all the positives from any negatives. It can take some time to have the courage to read stuff that you might not want to hear, don’t push it and ONLY read up to date articles from the year before or year of - know and believe that the internet can’t keep up with the latest, it’s happening so fast, more and more drugs and options will be offered in the next few years.
Children, this is tricky but do what’s best for you and your family, if you choose not to tell them for various reasons then be confident in doing so and don’t let others tell you otherwise. If you choose to tell them, there will probably be some changes in their behaviour, their body language, and their personalities. Try not to get too hung up on these, easier said than done, but continue to be open and honest about what’s going on, check in every now and then and ride the wave for a bit. It’s new to everyone and you will see some changes. Hair loss, chemo, the unknown, potentially a fear of mortality can be big issues for children, keep telling them what’s happening and guiding them through it. Eventually things come back to normal, especially once you’re in the rhythm of treatment. Don’t be afraid to reach out to counselling, chats and cuddles before bed can always be just as helpful. Don’t rush into anything, give them time like we need time as adults to comprehend the turmoil that’s just hit us, plus we have more knowledge about cancer and that it doesn’t always mean a death sentence, kids often only know of people dying of cancer, they need reassurance.
Starting a blog, writing a diary, social media, whatever you choose to do, document the roller coaster of a ride. Being able to see/read how far you have come since the beginning is extremely rewarding and helps you see the progression over time. If you have a friend or family member who can setup a blog on your behalf, this can make things easier to get started.
Breath work or meditation is incredibly supportive during chemo, there are many anxious moments throughout the beginning to the end of this process and it’s important to find that one thing that helps you to find your inner calm in those moments. Whether you can find an app, learn to meditate, or attend a breath work seminar - all can be worth it to have a lifelong tool that will help in so many situations.
There are going to be so many up and down days, days where you’ve had enough and the thought of getting out of bed is too much. On those days, allow yourself and your body to rest, tell yourself that you can lie in bed and binge watch Netflix and the next day set yourself a couple of small goals. Ring a friend for a few laughs, run yourself a magnesium salt bath, walk to the mailbox. Don’t be hard on yourself - every day is different, listen to your body.
DON’T COMPARE yourself to others, every single cancer diagnosis is different, every single person's body is different and react in different ways. You can only do the best or be the best person YOU can be on any given day. What, might seem like the same chemo plan as someone else, can end up being completely different to yours. Some people have kids, some have more help, some have been dealing with other issues within their family while still going through chemo. Some peoples support people work long hours, some don’t - so many reasons to only concentrate on YOU and how you’re feeling. Be KIND to yourself.
Try to stay as positive as you can and use as many tools as possible to help you get through this, in the beginning tell yourself that negative emotions feed your tumour, of course it won’t and it’s perfectly ok to have negative thoughts/days, BUT shifting your focus can be massive and the thing that gets you through the day!
It’s a period in your life, and a sh#tty, one at that, but no one ever said life would be easy - you can choose to make that path easier or harder.
Lastly, remind your self and others that when you get to the end of your chemo, it’s an amazing feeling and something you should be proud of but we don’t just bounce back after a week, there will be many mixed emotions and getting back to our old selves will take time and lots of energy, more than ever we will need support, the long term effects of chemo can hang around for awhile.
Love, been through chemo before
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