Background
Medical
Jaw cancer (squamous cell carcinoma) diagnosed in April 2001; operation in June
2001 at Addenbrooke's in Cambridge, followed by 33 sessions of radiotherapy.
Excellent recovery, but cancer recurred, requiring major operation at St
Bartholomew's Hospital in London (7 August 2003).
Lifestyle
Age now (summer 2004): 60. Live alone (in Cambridge).
Occupation: freelance editor and translator (mainly on computer).
Leisure activities: keen walker (if possible in hills and mountains), tennis
(not competitive, but I have always played a bit, all year round), kayaking
(new skill learned in 2000, so far only on the Cam, i.e. placid not white
water). Cycle everywhere (the Cambridge norm; I have not driven a car for 20
years).
The surgeons reckoned that I would eventually get back full use of my right arm
(I am right-handed), but I was not optimistic about kayaking and tennis. I was
thankful that my legs had been deemed unsuitable for the graft (poor
circulation).
Hospital experience (St Bartholomew's)
After op, r. arm strapped to my side for about 1 week. After that, it was hard
initially to use my hand/arm for anything (e.g. writing - I am very
right-handed), but 10 days post-op I was able to wash and dress myself (albeit
awkwardly, mainly with l. hand). Started eating with teaspoon (after 14 days).
Could lift my r. forearm only with upper arm held to my side.
Inevitably, physios on Henry Butlin were mainly concerned with
trachy/chest/breathing, then getting me back on my feet (first steps 8 days
post-op, walked to end of ward alone after 10), rather than with shoulder
(seemed more the doctors' domain). Physios emphasized the importance of scapula
setting, then making circles with palm of hand (arm lowered, hand horizontal),
rolling shoulders. Once out of bed, I started inching my r. hand up feed stand,
then a bit of "walking" my fingers up the wall (nobody explained the importance
of "walking" down again until much later), but found this very difficult. Also,
there are so many things to cope with at that stage - above all, learning to
speak and eat despite new impairments - which seem more essential to returning
to some kind of normality.
Before being discharged, I asked the physio whether it would be ok to ride a
bike and (rather to my surprise and relief) I was given the go-ahead. Was given
sheet of exercises to do and told that if I wished, I could arrange via GP to
see physio in Cambridge.
Returned home: 27 August 2003 (3 weeks post-op).
Coping with home living (first month)
Since I live alone, and it wasn't clear what state I'd be in when discharged,
an old friend from USA volunteered to stay with me for almost 3 weeks, but did
not arrive until I had been at home on my own for three days. In fact, in
practical terms I could have managed quite well on my own, but it was a good
thing to have her company, above all to force me to eat "in public" and speak,
as well as generally to help with shopping, cooking, housework, entertaining
visitors, etc.
Personal care
Shower: washing mainly with l. hand. Cleaning teeth difficult - no
strength in r. arm, awkward. Alarming to see scapula poking above my shoulder
as I move.
Dressing: can do up bra behind my back, but relying mostly on l. hand.
Awkward to put on or take off any garment (e.g. t-shirt) over my head - to take
t-shirt off, have to cross arms, grip lower edges and use the strength of my l.
arm to pull over my head while r. is dragged along.
Eating: at first awkward to eat with anything but teaspoon in r. hand
(cannot raise elbow).
Housework, etc.
Made up beds alone, pegged out washing with some difficulty. Virtually every
task in kitchen has to be done with l. hand (washing up, reaching for dishes,
etc. in cupboards). Cannot carry anything in r. hand (which limits how much
shopping I can carry).
Getting around
Rode bike half-mile into town the day after getting home, somewhat
precariously, esp. on corners (I get off to make r. turns across traffic); next
day cycled 3-mile round-trip across town to GP surgery. Cannot take hands off
handlebars/signal or manage any gradient. After that I mainly walked everywhere
because my visiting friend reluctant to cycle.
| Dates |
Exercises |
| 28 Aug - early Sept |
Same exercises as in hospital, incl. "walking"
fingers up wall several times per day, facing wall; lie on back, clasp hands
and raise both arms |
| First appt. with physio (10 Sept) |
Add: "push-ups" against wall x 10, twice per day; use
l. arm to raise r. arm as high as poss. |
Coping with home living (next 3 months, October-New Year)
Personal care, etc.
Discouragingly little change, amount of movement and strength in r. arm very
limited (e.g. find I cannot lift full teapot from far side of table while
seated). Now 100% on my own to cope with housework and garden (no outside
help). Friends offer lifts to go shopping at supermarket but I manage ok with
bike. Still doing far more than usual with my l. hand. Dressing and washing
still awkward. Cannot push/pull open heavy shop doors with r. or lift heavy
books (e.g. dictionaries) off floor or shelf.
Getting around
More confident on bike (very good exercise for shoulder), but still cannot
signal properly. In London, I'm anxious on jolting buses (cannot rely on r. arm
to steady myself as I move along bus or on stairs). Two trips to Paris alone by
Eurostar; in early Oct, carried only light hold-all (on l. shoulder), in late
Nov (4 months post-op) could carry hold-all plus light rucksack.
| Dates |
Exercises |
| Physio appts (24 Sept, 8 Oct) |
Add: kneel on all fours, set scapula and shift weight
onto r. arm (x 5, 3 times per day); lie on stomach on bed, r. arm hanging over
side, raise arm in small movements |
| Check-up Barts (15 Oct, 12 Nov) |
Mr Hutchison NOT pleased with progress, insists on
"walking" fingers up wall HOURLY, also sideways to wall; get someone to help
raise arm [not easy if one lives alone*]. Only in Nov is it made clear that
"walking" fingers down wall just as important as up |
| Physio appt (5 Nov)
|
Physio very encouraging (contra Mr H!), surprised at
hourly regime (reckons that as an active person, I am using my arm a lot in
daily life). Add: lie on l. side, bend r. elbow and raise r. forearm (no
weights) |
| * |
After several unsuccessful attempts to get friends to
help (hard to make them understand what was required), I started using a
long-handled duster to force up r. arm with l., and mimic kayak paddling
movements. Also use stair banisters to support r. arm as I raise it sideways;
lying on back, make "angels' wings" on floor with both arms. Walk fingers up
wall 8 x per day, other exercises 2-3x |
Things start to improve at last (5-6 months post-op, Jan-Feb)
After very gradual improvement for weeks, everything suddenly much better and
easier. By end Feb I can raise r. arm in front of me to head height, so can now
wash and comb hair with r. hand, washing up is less awkward (e.g. putting
dishes in drainer at r. of sink). Have to cope with builders in house from 9
Feb, which means taking down curtains and putting them up again (still v. hard
to hold up r. hand), shifting furniture, much cleaning. Can clean windows with
r. hand. Still hard to use bicycle pump with r. hand.
| Dates |
Exercises |
| Physio appts (7 Jan, 18 Feb) |
Add: lie on l. side, bend r. elbow and raise r.
forearm with small weight (1 kg); stand side-on to wall, roll tennis ball
against wall with fingertips; push-ups against waist-height counter |
| Check-ups at Barts (7 Jan, 25 Feb) |
Even Mr H pleased as I can raise and lower r. arm
slowly. |
Continued progress (7-9 months post-op, March-May)
Daily life much closer to normal: can lift dishes and bowls out of cupboard at
head height, take books off high shelf. DIY again possible (using heavy
electric drill at shoulder height; change bike wheel, pump up tyres),
gardening. Can travel almost as normal, although still not carry hold-all on r.
shoulder or lift anything heavy with r. hand.
Out in kayak for first time (31 March) - not far, but part of challenge is
getting in and out of boat, r. hand on bank taking part of my weight, lifting
heavy boat out of water, as well as paddling itself. Cannot open clubhouse
shutter door using both hands or open upper mortice lock with r. hand. Kayaked
to Grantchester (40 mins each way, 14 May), then paddling often. No problems at
all of pain or stiffness in shoulders (but legs and buttocks sore!).
| Dates |
Exercises |
| Physio appt (5 May) |
Add: lie on back, bring arms alternately through 180° then back round to
starting position, as if semaphoring, then reverse after a few times. Attempt
to do version of push-ups on floor, with hands and toes on floor, thought too
hard. Practise tennis strokes without ball. Ready to be signed off, but
possibility of last appt before physio leaves UK at end June.
|
Back to normal (10-11 months post-op, June-July)
Can now function absolutely normally again - conscious only of very slight
weakness on r. side compared with left. Only occasionally do exercises now
because I feel I am exercising the shoulder in everyday life. Did not in fact
see physio again after May because she was fully booked before leaving (she
came to GP surgery only one day per week).
Leisure activities
Solo walking holiday for week in French Alps (June). Day walks (8 hours +) with
day pack, not hut-to-hut, but carried normal rucksack load (with care) while
travelling. Climbed on average 1000m (max 1250m) per day; occasionally had to
haul myself up rocks, cables, etc., take weight on stick in r. hand, esp. on
steep descents. No pain or stiffness; regained pre-cancer energy levels.
Kayaking: paddled to Haslingfield and back (total about 4 hours),
including portages (with heavy plastic boat). To Grantchester and back in
2-person racing kayak (first time ever!). Can open and close clubhouse shutter
door, open and close mortice lock above head, etc.
Tennis: no opportunities till mid July because usual partners away/busy.
Hit balls back and forth with visitors, not proper game; no problem with
forehand or serve (though not strong), backhand very tentative, instinctively
keeping upper arm close to body. Needs more work.
I must admit I was sceptical when the surgeons said I'd get back full use of my
arm, especially around New Year, but they have now been proved right!
What was important in recovery
1. Physio support after I came home was extremely helpful - this was
presented as optional when I was discharged, but I feel it should be encouraged
more forcefully. I was lucky that the physio (Cornell Eksteen) was very good,
very thoughtful, and really worked with me. I saw her only seven times in all,
but every appointment was time well spent. She worked on strengthening the
shoulder as well as regaining movement.
2. Cycling (and later kayaking) turned out to be excellent for
strengthening the shoulder - I am glad I was not discouraged from getting back
on a bike. Physio also encouraged me to swim, which would have been very good
too if there had been anywhere quiet that I could have gone to practise.
3. Being chivvied by Mr Hutchison to walk my fingers up the wall every
hour was no bad thing, though I wish the importance of walking them down again
had been made clear from the outset.
4. Motivation: as an active, outdoorsy person, I wanted to get back to
my normal range of activities by the time summer arrived, and that spurred me
on to work at the exercises through the winter.
Update from Leo Cheng, Consultant Oral and Maxillofacial Surgeon
September, 2004
Ann has been able to enjoy her kayaking and tennis in the summer by taking
active part in both wet and dry conditions. She also told me that she can now
enjoying cleaning window, reaching the top shelves and so on. Her encouraging
life-style and forward-looking attitude despite all the unpleasant treatment,
reconstruction and rehabilitation has allowed Ann to live life to its fullness.
I have learnt a lot from Ann as she joins me and other brave patients in
sharing their unique and unparalleled experience in conferences and meetings in
order to raising the awareness of oro-facial cancer and its treatment.
|
