Tuesday, 4 August 2015

Cancer Trajectory - what I learned in last 3 years.

When a cancer diagnosis is received - the terrifying trajectory is a whirlwind of scans, biopsies, blood tests, scary conversations, then a schedule of treatment remains to be decided , hopefully agreed on by the team of doctors - surgery and chemo +/ - radiation therapy and anti-hormone therapy.

The other day a casual friend, recently diagnosed with breast cancer , saw me after a gym class and asked me a few random questions about chemo, radiation and the Cancer Trajectory.

Three years ago , after a breast cancer diagnosis I started my first round of chemo. I still remember it like yesterday. Just over a year ago I finished Radiation for Sarcoma.

Over coffee I sat down and tried to make some sense of it. Some like to catastrophize everything (like I did initially) , I tried to be honest yet not frighten or bore her. Though when my husband faced chemo (he didn't have it though) the person giving the information made it sound like a facing a firing squad.

1. Focus on one day at a time.
Yes, you will want to know it all NOW and race towards the future, wondering if you will even be a part of it. Get through each day, one moment at a time if you have to. There is time enough for tomorrow to take care of itself.

2. Don’t Google the sh*t out of everything on the internet

Tempting as it may be to read in-depth medical websites and compare your cancer stats and survival rates , it can be misleading and frightening .
I didn't spend much time Googling odd symptoms and long unpronounceable words – I spent countless hours , including lurking on cancer forums too. I cannot lie, I was a nurse for many years and I had to know. None the less it can drag you down and leave you rocking in a corner. Remember everyone has an individual response, your body’s reaction or side effects from one treatment to the next will be different, and very different from your friend’s cousin’s Aunty who died or the internet random.

3. Write down questions that confront you between appointments. 

Take notes in a diary or use a phone app - if in #2 you do come against something that worries you or interests you. Ask when you see your oncologist or [breast] oncology nurse – nothing is crazy or sacred. In the case of intimacy questions or toilet habits, a most fascinating topic too – relief is never far away.
They have probably heard it before. There are also countless online hangouts, private facebook groups to join and connect with others going through the same thing. Ask away or lurk.

4. Decide ahead of appointments whether you want someone with you (and who).

Sometimes receiving medical reports or scan updates is confronting . Often I preferred to be alone, to ask the curly questions without upsetting my nearest and dearest. Remember it is also common to completely forget what you have been told ; another pair of ears, and hand holding is useful and comforting.
Don't fret if they leave you in a consulting room to go and check your scans ...for up to 30mins or longer. Generally, they have forgotten you or been side tracked with another patient - don't  catastrophize delays.

5. Bring someone to chemotherapy with you . Initially.

My husband was more than happy to come, a friend came to one treatment to give him a break. After the first 4 x3wkly cycles, the long haul of 12 x weekly chemo set in. I preferred to read or sit with my iPad. I also felt comfortable chatting with the nurses or snoozing. I was well enough to drive myself there and home (15- 20 min drive) with second round of chemotherapy.
It isn’t always necessary to have someone to sit by your side for the duration of the infusion, so don’t stress if you want some solitary time –it’s normal. Sometimes a visitor (bearing chocolate or cake) makes all the difference.

6. Carry a e-Tablet /iPad (and charger) with headphones, book , Suduko puzzles or your knitting with you to treatment and appointments.

Oncology clinics are rarely on time and then chemo runs a trajectory according to the drug and hospital protocols. Reading, catching up on your favourite drama or sci-fi series is a great diversion when you are surrounded by potentially life and death matters or seeing other people confronting your worse fears.
Many libraries now have free magazine downloads or e-books to take advantage of too.

7. Take the medications they offer you

Most especially the anti nausea - after asking any questions you have. Even if it feels challenging if you feel crap tell them. They have other options. Do think about it in terms of not putting yourself through unnecessary suffering like you possess a superpower of some sort. Always ask about other over the counter medications in case of interactions.

8. All offers of help should be snatched up immediately.

Early on give your caring friends and family a tip – “Please don't ask 'Is there anything I can do?' Just do it” (within reason). If meals are offered – suggest the best nights and a list of what not to bring (ie -no – one likes Tuna Mornay or has allergies). The easiest meals are delivered warm and ready to eat (my husband said the best meal they got while I was having radiation was chicken legs and a hot potato dish +salad- delivered in a foil tray so no dishes need be returned).

9.Arrange a cleaning service to do the bathrooms and floors

Call on friends to ferry the children to sport or after school activities or to the movies or park for a couple of hours on the weekend (especially when you don’t get the break school provides) .

10. Get enough sleep.
Take sleeping pills should you need to when the anti-nausea drugs like Dexamethasone or worry leaves you wide awake at 2 am. Ask your specialist for a script if other DR ‘approved’ herbal or over-the-counter drugs cannot give you a good night's sleep. Sleep is vital for healing. Daily naps are a must.

11. Keep just busy enough.

Find an activity to focus on in between treatments, something to help you keep calm and do it as often as you can. Gentle exercise, walking, practice yoga, blog, photo journal, a new hobby or swing in a hammock. Google “the Spoon theory” it will help you understand a little about what to expect in terms of energy. What you may be able to manage on different days.

Still plan ‘good times’ ahead and strike out the days you know you’ll be crashed on the couch overcoming the last cycle of chemo. If your immunity is low - you need to stay away from people , you may feel well and you'll need mental stimulation.

12. Ignore the insensitive comments or 'Everything is awesome' crowd.

You positively cannot be kick ass the whole time nor can you worry if people see you upset. It’s as normal to cry, swear, or flip the third finger as it is to laugh about the fact you are getting a free Brazilian thanks to Chemo and looking forward to a perky new rack (not me personally because I couldn’t face the thought of more surgery /pain).

13. Forget the blame game

Often nothing you did caused your cancer.The pressure to listen to the latest cures, the medical profession and big pharmaceutical$ are keeping from us, and the all pervasive spread of misinformation about chemo being poison and radiation deadly , is plain wrong.
You cannot cure yourself of cancer just by positive thinking, a special diet or even praying for a miracle. By all means if it makes you feel better just do it (check with your oncologist before taking herbal & vitamin supplements). I certainly went to several prayer / healing sessions where 3-4 people prayed for me. No one knows in the end what makes you turn the corner. I received several random emails from strangers and even well meaning friends about many different CURES.

14. Keep calm and stay strong - use the community brains trust

Unpleasant as the treatments can be, it will hopefully be over before you know it. If you are not coping ask for help.
Counseling and peer support groups, financial or legal help, transport or home help is available from  Cancer Council and Nurses , other cancer specific organisations. Government support can help financially too.
Cancer Council NSW 13 11 20 Information and Support is a confidential service.

Looking back you will see how far you have come and you will get on with your life, albeit a different life on so many levels. Some days all you can do will be to sit there with tears in your eyes, others you’ll cry with laughter .