Updated: Dec 24, 2021
How to get the help you need
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IF A CANCER PATIENT HAS SENT YOU THIS LINK: By sending you this link, they might just be hoping you will help take on the challenge of finding people who would like to help. If you are willing to help designate the roles below, let them know.
Not everyone has this, and some people only have this to an extent, but a support system will make a major difference in your cancer journey. One thing to remember though, they are human and they are most likely hurting from your diagnosis as well. They are confused, lost, and scared too. They might need some guidance as to what you need from them. And since this is quite possibly your first go around with cancer you may not know exactly what you need either. So, let's talk about some important support roles and tasks that can be beyond beneficial to you.
Tip: Don't feel like you need to figure out your cancer crew all by yourself. Involve the people close to you, ask who they suggest to lend a hand, see what they are willing to help with and who they think would be a good fit for other positions.
The Note Taker
A lot happens at your oncology appointments. It's easy to go into information overload with all of the medical jargon (those weird long words you've never heard of before), important dates, and treatment plans. The good news? All of these things can be written down to google or reference later. My sister was the designated "Note Taker" and man was it a game changer. You will want someone who will be attending all the appointments, can write legibly quickly, and feels comfortable interjecting during the appointment to ask "Can you say that again?". To learn more how to effectively use a good quality planner during treatments read this post here.
Tip: It is best to give them the planner while you're in the waiting room, so that they have time to look over your questions and become familiar with them. That way, they can keep track of which were asked, write the answers, and ask the oncologist the questions that you would have forgotten to ask. This role is most important during the oncologist appointments, not so much for treatments. But remember, they are human and stressed too, so be graceful if something gets overlooked or isn't quite clear.
This one covers several aspects that might be best to not be on just one persons' shoulders.
Depending on your course of treatment you will most likely be "down" and unable to take care of chores at home for extended time periods. You'll need to consider the fact that you will need help doing things around the house. My chemotherapy was rough. I was living alone and I didn't realize I would need all of these roles fulfilled until someone actually stepped in and offered the help. Looking back, I see how very crucial the help was. Here are some chores that can easily be given to designated "cancer crew" members:
Laundry - I had a coworker who took my laundry weekly. I would simply carry it to my car and she would grab it out of my car at work and return it the next day fresh and folded. As chemotherapy continued and I grew weaker, and she came to my apartment to pick up and drop off the laundry.
Meals & Groceries - I also had other coworkers and even wonderful strangers bring me precooked homemade meals and groceries. Grocery shopping was rough (it got to where walking was exhausting) and this was before Walmart Grocery Pickup.
Cleaning - My mother would come and clean out the litter box for my kitty (if you are undergoing chemotherapy - don't clean the litter box, it increases the risk of infection), and vacuum once a week
Bookkeeping - Try asking someone you trust to help organize your important files, write down key dates for bills, or even keep track of all of your test results if your Oncologist prints those off and gives them to you.
I think you get the point here. You're going to be tired if you're having chemotherapy/radiation and you're going to get even more tired with each treatment. If you live with someone they will most likely pick up the slack, but again, remember that they are human and stressed. If they are doing all the housework, they will also be tired. Consider asking family to come step in for a few chores now and then.
The Medicine Man/Woman
After my hysterectomy, I was sent home with so many bottles I felt overwhelmed and so very under qualified. There was a whole slew of pre-chemo meds, post-chemo meds, antidepressants, pain killers, anti nausea, and I even had meds to make me gain weight (because apparently they do not want you to lose weight during treatment). Not only was there a large number of medicines to take, but the regimens were all wonky and weird. The pre-chemo pills and eye drops were to be used the two days before chemo. The post-chemo pills were to be taken only after certain treatments for a certain number of days. There was a lot of particulars to keep track of...too many for one person who is distracted with the fear of death.
Chances are, you're going to compile a lot of bottles too. The labels will most likely say when and how to take the medicine, however it doesn't say what it's for. And sometimes the doctor's instructions vary from what is written on the bottle, so that leads to even more confusion. My sister (once again, props to the sis) asked the doctor what each bottle was, when to take it, and what it was for. She took a pen and wrote on each and every bottle. I never had to worry about "what is this for?" or "which one am I suppose to take today?" because she took the time to be diligent.
If there's one thing you take from this post today, I hope this is it. Simply ask someone to take on this responsibility for you, you'll thank me later. It quite possibly could have been an actual life saver, because let's be honest...medicines aren't really something you want to mess up on.
I really do not recommend driving to treatments, or appointments for that matter, for a number of reasons. First, your nerves are going to be shot, especially at the first few or the extra worrisome ones (where you mention that new bump on your wrist). Second, you don't know how you're going to react to the meds and chemo. I drove once, it was miserable, bad miserable. It was a dumb dangerous decision. Third, I had a panic attack at my first chemo (my fault for staying in denial too long - we'll cover some tips on how to avoid doing what I did - (Join the newsletter to be notified when this post goes live) and was definitely not able to drive afterwards after the slew of medicines they administered to me to help calm my nerves. Then the last reason is, the less responsibility you have the better. Don't put yourself under the stress of driving, lighten your load and ask someone else to drive you.
For me, this was my mother. She drove to every single appointment except the one. That's a pretty big undertaking considering they were weekly appointments 2 hours away, and I am forever grateful for it.
Tip: There are resources out there to help pay for gas if you travel for cancer treatment. I applied and received a $100 gas card, which was only allowed once if I remember correctly, but every little bit helps and there may be more resources out there by now.
I unfortunately had a hysterectomy before I had children, therefore I did not have to worry about this aspect, but it is definitely something that needs to be mentioned, as a lot of you do have children. I have quite a bit of experience working with children, as I was a teacher for many years, so I believe I am able to give some advice you might find helpful.
You are going to be exhausted as treatment trudges on, even more than you are now. Remember that you are human, a human put in an unbelievably hard situation. You need to allow some grace for yourself, as well as for your child. No matter the age, children are very receptive and will also be feeling some "icky" feelings. It's normal to have rough days, individually, and as a family. And it's okay to need a break.
Now, not every day is a rough day, I'm not suggesting you find a foster home for your child, but I highly recommend having someone on stand by as well as implementing some routines as soon as possible.
Some key times I recommend planning on utilizing that babysitter?
The entire chemo day and night. Possibly even the day after to give yourself some recoup time.
On those days where it's just harder than normal to get out of bed. Don't feel guilty for asking for help on these days, the healthier you are mentally, emotionally, and physically, the better parent you will be.
Children thrive in routines, so I suggest easing into the overnight stays by following this routine here. This will help get the children familiar with spending time away from home, establish expectations during transitions, and give you some needed "you" time.
The Morale Booster / The Shoulder
I know, I know...I rolled my eyes when my oncologist told me that my mental health plays a role in my survival. My mental and emotional health was really the last thing on my mind considering the fact that I was literately fighting for my life. But, honestly, he was right.
Think about it this way. You have a lot of negativity going on right now. And all of the sourness can wear you down even more than you already are, making life even harder. You need some positivity, and as much as you can possibly stand. So much that you get tired and annoyed with all of the positiveness (which will happen, yes). I once was so annoyed with my mother and sister's "fun" banter at an oncology appointment that I snapped at them to shut up. But am I glad looking back that I had those annoyingly happy people with me? Yes. They helped me laugh even when I didn't want to laugh. They helped distract me in a positive way. And they just helped keep things a little brighter during the darkest part of my life.
This role will hopefully be filled in a variety of ways. Having someone call, just to check on you and talk about their cat running into the glass sliding door will help you remember that you're not the only hot mess. It also helps you feel as though you're still a regular human who talks on the phone, not just a blob of chemo laying around the house all the time. Laughing at a funny movie will help relieve some stress and provides a great distraction from your own misery. And chatting with your neighbor about how they found your puke on the sidewalk will either embarrass you to laugh at later or help you remember that dogs don't only eat their own vomit. My point? Life sucks right now, there is nothing fun about what you're going through...but...try to remember that there is a reason you are fighting for your life. And that reason is to enjoy it, laugh, and have fun. And my goal is to make your life easier and less stressful. Believe it or not, life is a little easier if you smile every now and then.
On the flip side of the coin, you also need someone whose shoulder you can cry on. Someone you feel safe with. Someone you can trust not to judge your thoughts and emotions. If you don't have someone you feel comfortable with, I suggest considering a therapist.
It was suggested to me that I go to some cancer group meetings, yet I refused. Looking back I am 100% positive I would have gained so much peace of mind and sense of belonging had I went to even just one meeting. There I would have found that I wasn't as alone as I felt. I would have realized that I wasn't the only person being told "you're too young for cancer." I would have discovered so many other people feeling the same dark scary thoughts I was having. It would have brought a sense of belonging that I was so very much longing for.
I suggest you go. Or at least talk to your Aunt Bettie who was diagnosed a few years ago. Just find someone who knows what you're going through and can relate to your journey in one way or another. It's priceless. It truly is.
Shameless plug here: I actually found a sense of connection by reading a young ladies blog who was about my same age at the time of her diagnosis. So, actually you may just have your survivor role filled by connecting with me here OR better yet, by reading one particularly messy story, A Cancer Made Mess, written by, well...me. It's my story. Interested? You can find it here.
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