It reminds me of many a hospital stay. I am now day 9 with a brand new hip replacement from inflammatory arthritis. It was the gift I was given a few months after chemo ended, affecting mostly my hands which recently took away a bone in one hand – a mighty painful reconstruction this year, through which I kept working. I must say I am getting a bit tired of the “but you’re so young for this” phrase! And if I feel tired, it may be because I am healing or lacking 4 units of blood that I happened to give the hematoma in the side of my thigh and the sucking machine in surgery, but as my husband cooks lots of good food I can recover knowing my trajectory is upwards – not that looming chemo every time you felt a bit better. Of course I am lop-sided with swelling in length and width of my hip. Yes, looks like I got a curvy silhouette all of a sudden. Immobile as I am, I am now clearer of mind and able to do most things as long as I don't move which means teleconferences and a wonderful locum to cover my patients for 6 weeks (doctor’s orders!)
Finally, home Wednesday night, I have strict instructions not to bend past 90 degrees at the hip or it may dislocate. Alone Thursday, imagine staring at the toilet paper roll fallen the floor when the laxatives I was given just started working. The picker-upper tool was magic, the platform walker saved me with my right sided weakness and managed to get me around the kitchen for the day and I collapsed into the recliner I had reclaimed from the basement from my chemo days.
It came to me that from the challenges, we can be prepared. Throw away the thoughts of what others may think because, actually, they probably wish they had the guts to do it. I came up with my little “Be prepared patient list”:
1. The occupational therapist told me to wear my phone at all times – brilliant idea. A nice little pink bag crosses my chest at all times. A few close calls since my brain does not believe I can’t walk properly.
2. Get all the gizmos to help you – the leg lifter gets my bad leg into bed and the 2 ft grabber is great, especially when you go shopping in the Walmart scooter and pick things off the shelf!!! My friend told me to get a recliner for chemo which made me feel like I didn't spend all day in bed. My long handled shoe horn is nifty for the next 3 months of restrictions. Lots of easy dresses to avoid struggles in dressing. The shower stool is amazing. Showers make you feel great – longer the better so sit down and relax, even when you are weak. There are camisoles in the mastectomy stores with little pockets for the drains – wish I had known. It is really hard to get this stuff after surgery so be prepared ahead and many places deliver free (imagine my teenage son signing the raised toilet seat arrival!)
3. Plan for your caregiver to know where your stuff lives before surgery. When you are in the hospital or flat on your back and you ask him to get your favourite blanket or wrap by instruction only – plan where it is. Your caregiver may do the laundry but putting it back can be a nightmare too. We are an interesting team – me with my 2 ft grabber pairing socks and my husband putting it all away. How do your pillows go? 5 -7 pillows dutifully arranged after my double mastectomy reconstruction propped me up at night. So plan the cupboards, wardrobe – you can’t do it all, help those who can.
4. Assistive devices. Cane, Smartcrutches (that’s what I have - revolutionized forearm crutches help my mobility and gait), walker, platform walker. Put away the embarrassment and start mobilizing. Actually you will be surprized how helpful people are. Yes, I even shopped the Home Depot warehouse in the electric buggy – totally fun. Find a way, don’t stay at home.
5. Rest. Allow yourself to recharge. Immunity improves with sleep and I need a load more red blood cells to make too. Pain improves and energy is conserved for the next task.
6. Watch tennis. Well that’s my fav. Wimbledon is near my old hangout and I have never had a chance to follow it at work. I remember the summer of chemo, I ordered the t-shirt in my sadness. Now, I can’t play tennis so I am a fan. I expect to be allowed to play doubles which between hip and neuropathy seem a mountain away. But I have done mountains…..
7. That takes me to the next step, physio and fitness. Before this surgery, I was left with one sport: Aquafit! Dig it folks! Can’t walk, can’t work out much , no yoga… get buoyant. Here’s hoping to get back to my aquafit gang and of course, I totally know how to aquafit in the lake now….what a new trend! Waiting for wound approval later this week.
8. “If there’s anything I can do for you, let me know.” You’ve heard it before from the most sincere hearts but you don’t have the energy to think or it’s easier to not do it. This website is your help: http://lotsahelpinghands.com It was recommended to me as a doctor for patients going through illness – cancer, sudden loss, illness or accidents. You can create a community of help that is specific to the individual’s wants. They may list to pick up their child from school, drop off a meal, find a hairdresser to come to the house, take the dog for a walk and the community is approved and known to the patient – all the volunteer has to do is check off a task to be helpful.
9. Stay ahead of pain and & other symptoms (constipation, nausea.) I use an app called Pillboxie but there are many more. Just because you now feel well, doesn’t mean it won’t come back. LEARN FROM MISTAKES – THAT’S WISDOM. Be kind to yourself.
10. Say thank you. Unsung heroes need to hear it when they now add picking up anything dropped and irretrievable due to my 90 degree rule, I can’t carry a mug with crutches, there’s cooking, cleaning and mending things that go wrong (Murphy’s rule)
11. The Whiteboard. There’s one in your hospital room – insist that the doctors, my ortho surgeon, fellows/residents, nurses, physio, occupational therapist, respiratory therapist, pain team members and crew put their names on the board. That interesting name lasts a few minutes in short term memory till the drugs you are on, help it dissolve away, never to return. Add the date too, which can also blur days into each other. On that topic, have a whiteboard at home with the important specialists, CCAC contacts and upcoming appointments. Know that you will forget and you will not get angry at your chemo brain.
12. Bring back the Soap-on-a-Rope! Is that dating me? Losing the soap in the hospital shower, most people have little desire to reuse it after retrieval. I can't break my 90 degree rule which woud include picking up soap. Get a giant soap from Homesense (the kind that is way too big for any other use) Have your nice friend or spouse or if you are handy, drill or skewer a hole in the top 1/3 and put a shoe lace through. Voila! You smell fresh and clean sitting on your safe relaxing shower stool.
So here’s to the Can’s not the Cant’s because we are warriors and get through these things we must. Resilience is post traumatic growth. Inspiration is what we radiate. Allow people to help you because they benefit from giving too.
I have decided to count well days now. We overlook them – its all about perspective.
At 47, I was diagnosed with simultaneous bilateral invasive breast cancers. My world as a busy mum and doctor was in a tailspin as I underwent bilateral mastecomies, reconstuction, node sampling then axillary dissection, chemo then hysterectomy after significant BRCA mutation results. I then helped family members through BRCA testing and the difficult decisions. I made positive thinking cards to help me out of every hardship, push me forwards. Finding balance is hard after breaking my arm twice since then - I have difficulty with the slow down part! I am so grateful to be back at work, able to help people through the emotional side that comes with cancer - from Both Sides.