This is what my changing room experience led me to ponder (thanks to the accompaniment and inspiration of Mel C singing “Things will never be the same again”) …………….
There is one certainty about a cancer diagnosis – I know that things will never be quite the same again – ever. The only certainty is that the whole future becomes uncertain. Things taken for granted, simple plans and assumptions are all thrown into doubt. No matter how good the odds are on a full recovery, once you have heard those words you can’t go back to the way it was before then. Sinister and frightening thoughts and worries come at me, particularly in the wee hours of the night when I’m feeling at my most vulnerable. I know I can never take my health for granted and will always have a nervousness about screening and health check results.
So listening to Mel C belting out “Things will never be the same again” really set me thinking about how much really does change with such a diagnosis. It also made me ponder on what feels as if it will never be the same, (especially right now in the thick of the heavy duty treatment), but one day could see a return to the pre-cancer days.
Sitting with my bald head, many clothes now unwearable and working solely on blood counts and treatment as a basis for planning anything at all it feels as if so much has been taken out of my hands. And it has really. If I want to meet a friend I cannot be sure where I will be and for how long as it depends on the treatment and recovery progress. I can’t commit to be available on certain dates for family or work, even months ahead. I don’t know when I will see family again as long haul travel is out of the question while my immune system is so weak. I can’t even confirm that I can meet up with friends in case one of them is unwell. It is also hard having to avoid contact with children as unfortunately they tend to pick up bugs easily through school, play and other contact.
That should all be temporary though. Once I am the other end of the chemo and radiation courses I will be able to get life back on track, assuming all goes well and the Docs are happy with my response to the treatments. (And we are certainly throwing everything possible at it, with a combination of surgery, chemo, radiation and then hormone treatment). There will be check-ups and follow up to monitor my health and keep an eye open for any signs of recurrence.
However, this illness and the treatments are so overwhelming and all consuming, as are the side effects, that it is hard to imagine life on the other side – though trust me. I am trying very hard! I also have to be realistic. Some things will never be the same again and I have to think of tactics to handle that. Here are a few:
Things that really never will be the same again
- Bra shopping!! That’s for sure! Though to be honest it was never a high street experience for me – but it will be a good bit more complicated and choice will be extremely limited from now on.
- My left arm. Good old twang arm is actually really improving and the twang sensation is much less. However, there was considerable nerve damage and movement is still pretty impaired. I think it will never be exactly the same again, no matter how hard I work to get as much mobility back as possible.
- Health and travel insurance. Hmmm – I am not sure of the implications and hope they are not too horrendous as I have no plans on retiring any time soon!
- Using a computer. There is no doubt that using a computer annoys twang arm and I am using the wonders of technology to minimise aggravation. However, I do think that I will always have to be careful and in this online and electronic world I cannot assume I can use email and computers in the same way as I have for many years now.
- My wardrobe. Thanks to the surgery, and to twang arm, a revision of my whole wardrobe is necessary. Luckily living in Asia means that I should be able to do a lot through alterations and tailoring, but at the moment I can’t wear around 70% of my clothes.
- Being spontaneous. Long distance travel now will mean certain preparations and health checks so spontaneity will be seriously curtailed. I love doing things spontaneously and taking advantage of opportunities which arise, so it will be hard to restrain many of the things I do.
Things which feel as if they will never the same again, but which might well be one day…………..
- Being able to plan a visit to see family, a night out, weekend away, holiday ……. This one is so hard. I think the thing which distresses me most is being unable to get back to see family in the UK. The thought of being able to plan anything and being fit and able to do so many things feels very far away, yet something I yearn terribly for.
- Having a choice of things to order from a menu. Choosing food anywhere, whether in a shop, café, restaurant of even at home is so restricted. In Bangkok I usually discount most of a menu. Chicken, dairy products, processed foods, most meats, most soy products, fresh uncooked fruit and vegetables, seafood, peanuts, sweets, chocolate, barbecued food (??!?), white bread and many more delights are all prohibited or seriously restricted. I am not sure if I will ever be able to drink coffee again or whether after chemo it will be allowed. Oh for a frappucinno!
- Scratching my ankle without getting shooting pains under my arm! The nerve damage has been quite extensive and long lasting. It is the weirdest sensation – if I scratch another area, the nerve system seems to be incredibly well connected and an echo answers immediately with a screeching pain where those lymph nodes were removed en masse. I do notice though that the numb areas are decreasing and the sensation is slowly returning to some left arm areas so maybe, maybe I will one day lose this pain symphony.
- Walking to work carrying my lunch box and umbrella. Walking to work would be good, as would going to work. Working from home is lovely but it will be good to get back to a routine of normality. The thought of carrying two things at the same time – in other words, one thing in each hand, also feels a long way off just now. Hubby J may well have to escort me to work, holding my umbrella over me to protect me from the sun, while I carry my own lunch box! That sounds like teamwork, if not independence!
- Dancing. Wouldn’t it be wonderful to be able to have a good old boogie? One day……
- Sleeping in a position other than flat on my back with a pillow under twang arm. Since the beginning of October I have slept flat on my back with twang arm resting regally on a pillow like some kind of precious, bejewelled mace on a velvet cushion. (Twang arm has consistently displayed ideas well above its station!) Briefly I tried sleeping on the good side, but it kind of squeezes the port and feels really gross so that is off limits just now. Once the port is removed that should be possible again, but I am not sure if will ever be able to sleep on the twang side again.
- Going to the hairdresser. And buying shampoo. (Sometimes I tease J by putting shampoo on the shopping list!) And dyeing my hair.
- Travelling on my own. Being dependent is really difficult when you have been used to travelling in all forms of transport independently. Twang arm will always have to be careful about carrying any bags so it will take a good bit of time to be able to manage travel again.
- The taste of water. Will I ever be able to drink water again without having to disguise it with lemon? In fact so many things taste horrible I wonder if my taste buds will ever return and if tastes will be the same?
- Having a pedicure and massage. These are not allowed – pedicures and manicures bring the risk of infection and massage (especially in Thailand) apparently can do risky things to the blood while you are on chemo.
- Looking forward to a trip to Bangkok. I used to be excited about a visit to Bangkok but now it brings dread because it means facing the next round of treatment and the side effects. I really look forward to the day when a trip to Bangkok is something to truly look forward to again.
- Measuring time in units other than 3 weeks. Everything revolves around the treatment schedule – and right now it’s every 3 weeks.
- Being able to dress myself in clothes which go over my head- at the moment this is pretty much impossible and obvious in the limited repertoire of clothes I am wearing.
And what about the things I have always yearned to do but not got round to yet? I can’t take it for granted that I will be able to. So much depends on how I come out of the whole round of treatments. I’ve done some amazing things and lived in and been to fascinating places, but there are still a few pipe dreams. I’m not worried about things like bungee jumping, white-water rafting or sky diving (in fact I have never been remotely tempted by that kind of thing). The things I have in mind are more like:
- Taking the wee ones for their summer holidays, introducing them to life in Asia
- Seeing a kangaroo in the wild
- Visiting Bhutan
- Learning to paint and draw
- Seeing an iceberg
- Having one of my writing indulgences published
- Sailing through the Norwegian Fiords
- Seeing the Aurora Borealis
Now one of them would make a really good treat and incentive for once all the treatment is over.
So when I next hear Mel C, or indeed just catch myself humming “Things will never be the same again”, I don’t need to remind myself that things will indeed never be quite the same again. In particular, there are many things I really can not and should not take for granted. However, in time and with good treatment results, many things should slowly return to how they were before everything changed, and perhaps I can change my tune to “It’s all coming back to me now”!