Saturday, 11 April 2009

55. Progress and challenges

So here I am, 3 weeks and 5 days on from surgery. I didn't to document every up or down day as they happened, or spend all my time fixed to my screen either. That's a good thing in itself as it shows me that I am not focused on one thing anymore, that life is returning to me and I have taken off my blinkers. Probably a massive relief to all who have to interact with me frequently! I'm sure that it got a little boring but that is what support is, being there, listening, for as long as it takes.

So, as I said before, here I am. Here is far enough away from surgery that I have little 'pain' and the discomfort that was pain is now just discomfort that I have become used to. That takes some time to adjust to, in knowing your limits you can find a smooth rhythmn of getting through a day rather than hurting yourself.

Dressing myself
2 weeks ago I could barely put my arms far enough behind me (not much past the backs of my hips) for my husband to get the arms of my clothes on. Now, with 3 daily physio spurts (which take less than 5 minutes each) I can get my arms behind me at a 45 degree angle or out horizontal. This means I can dress myself and have been doing so without assistance for about a week now. At first it was a juggling act but not it is so much easier. Socks are still tricky to get on but it is possible but I don't ask for help now.

I am unfortunate in that I don't have a shower but wish I did. Getting out of a bath is tricky, needing to pull myself up to get out. I can't wash my back still and my husband has to do this for me. Now I am healed really well and risk of infection has pretty much passed, I will invest in some back scrubbing device that I can manage. I don't like the fact that they are sat around drying out after use and the bacteria that forms in such items worried me at first.

Drying Off first it hurt to touch my body, especially around my armpits. My husband would wipe my skin down with a towel, much less aggravating than rubbing and the way they do it in hospital. I couldn't dry my bottom - very frustrating - I could actually only just reach (and with pain from stretching) wiping after the loo. That is not too much information for those considering the same surgery as me so for those of you who are reading and don't have to worry about such things, it's completely fine for me to say such things. It is one of the things I worried about - would my husband have to wipe me after using the loo? No, he didn't but I worried he would! All dignity would be lost in such a moment but he was prepared to do that for me because he loves me and we are married, exercising the vow 'in sickness and in health'.

Hair Washing
I was so desperate to get it washed that I found a way to do it when I wanted it done. I washed my own hair within the first week of being home. I filled the bathroom sink and could dunk my head in and use a plastic jug to pour water over and rinse. At first it was a massive effort and I hurt a lot after but it was worth it and all part of physio. Now I can sit in the bath and use the shower head off it to wash my hair as I can raise my arms above my head vertically with my elbow bent.


Oh dear. Sleeping. I have had one night of full sleep, 7 hours straight. I was so tired I slept quite literally like a log, without moving all night. I was numb and stiff. Naturally in your sleep you fidget and move around your bed. I couldn't and can't. This week has been better as I can slightly turn on my side for some light relief and it is a small thing - so small but it is huge for me. I have spent 3 weeks led like a log propped up on 2 overlapping pillows with a V pillow (nursing pillow) on top and another pillow for my head. My body could take 3 hours led like a log with pain killers taken at the point of laying down, waking as my body had had enough and my pain killers had worn off. I would wake up, plump my pillows as best I could and take some pills to find comfort enough to fall back to sleep. Now I take my painkillers before going to bed and when I wake up in the night, which is still once or twice, I just plump my pillows and go back to sleep..I've dropped the painkillers. My body seems to have adjusted though, I am not losing sleep at all, just having disturbed sleep every night because my body gets numb laying in one position. Of all the things I want to change, sleeping has to be number one. I cannot wait until I can sleep on my side, lie flat even, sleep on my front again. Sleep is key and I want it back.

Helping Myself
I can now reach the bowls and small plates in the wall cupboards in the kitchen. We have a small house with a small kitchen and so everything has pretty had to stay where it is. I am lucky that I have had my husband here to help me recover, without him things would have been very difficult indeed. He would have had to lay out all the things for my day that were too high to reach and then I could manage well enough until he got home.

A week ago I tried to chop up an apple. The downforce required took almost all my effort and I just gave up. I would end up cutting myself or making a right hash of things so I decided to give it a week before attempting chopping again. Last night I challenged some carrots and an onion and won. I made a fantastic chilli which was greatly appreciated by my wonderful hubby who had been out for a sea kayak paddle with his mate JB. He needed a break from me and for his sanity - so I showed him I can cope now and that when he goes back to work he doesn't need to worry about me. It was good to eat my very own meal. It's been almost a month since I last cooked a meal. The microwave is broken too so no instant meals for us. More expense we can't afford. Maybe we don't really need a microwave at all. I might try to live without it. More space in the kitchen.

I was sent home with Paracetamol and Ibuprofen initially, which was just beyond me after I left the hospital that very day after taking Codeine and Morphine!! I had to call my Health Clinic and request Codeine and Movicol (morphine and lying in bed and not eating for 4 days messes up your system..and after 10 days I needed help to go to the loo!!). I was taking the combo of all three every 4 hours in week 1, then dropped some of the Codeine for night time only and day time when I was really feeling it. By week 3 I had stopped Codeine in the day and saved it for getting to sleep when my body was tired from the day and hurting. Week 3 is Paracetamol and Ibuprofen 3 times a day but next week I will try and take Ibuprofen only just for the fluid that is still on my back and in my body. As an anti-inflammatory I figure it is the best one to keep taking but it MUST be with food - it can cause stomach ulcers or bleeding alone, as can Diclofenic. Codeine is now only an occasional thing and only when needed. I don't take any painkillers during the night now but everyone's pain threshold is different and mine is fairly high.

Three times a day and less than 5 minutes - they are simply exercises that make a massive difference. Anyone too lazy to do these after surgery will pay for it with a much longer recovery. This is the leaflet I was given (.pdf) --> Breast Cancer Care - Physio

Round up of simple yet difficult tasks include:

Lifting and filling a kettle
- life without tea? OMG!
Opening the pull ring tins - pulling anything is difficult still
Opening jars (done up with man strength) - this must be how elderly people see jars! Impossible to open!
Getting dressed - socks and pulling up fitting jeans are hardest still but arms were the impossible to start with.
Wiping my butt - Manageable now but I am a size 10/12 and reaching around is still hard work - it would be harder if not impossible if I was a bigger size)
Washing hair - arm reach is crucial and not getting scars wet.
Walking - yep, walking - week 1 and 2 at home wore me out. I ventured into town but after 30 minutes standing on my feet I was dragging my feet. Walking is something to do nearing week two.
Eating - Eating? Yep, having to lean forward towards a plate of food and lift a fork into my mouth..wobbly.

It's a different story now. Nearing 4 weeks on, my life is so much easier. My husband has fed me, collected many things for me, reached for things I couldn't, come to my aid many times, washed me, dressed me, massaged my scars twice a day with Bio-Oil, cleaned the house, done all the washing (and I produced lots in wear once to eliminate infection mode), fed the cats, done the food shopping, watered my plants - all with his own pain. He is amazing and he has suffered for me so that my own suffering was as minimal as possible.

Chris, my dearest husband. I love you. Thank you x


Teri Smieja said...

Thanks so much for posting all of this. It is very helpful to those of us so many steps behind you, to know what is down the road. Seems like attitude is key to a speedy recovery, and having a wonderful support system like you (& I) do can make a world of difference. Great job on being so strong, so open with your experience, and so brave. :)

Linda said...

How I recognise your stories about sleeping, washing, cooking etc. You're doing a great job. As you noticed you can do more and more each day. And you learn what you can do already, and what not. And one becomes very inventive to solve problems. I used my hairdryer to dry my back and armpits, as indeed the towel was too paifull and I could not reach my back properly.