5th April 2020

I finished my latest quilting project this week…my “recovery” quilt.  I’ve made many quilts over the last few years, always for other people.  This one was for me.

It’s odd in a way, as I started it the day before I started chemotherapy.  Ironically, I finished it the day after I was told my chemo was stopping.  My bilirubin blood test is still too high to restart, having had chemo suspended for the last month because of this.  It’s a recognised side effect but it’s just taking too long to come down. It’s still double what it should be.  Chemo needs to be continuous to be effective. If I was to restart, the dose would need to be reduced and that is before we get onto the corona risk with asthma and immunosuppression.

Risk benefit ratio is now too high to continue and I am devastated.

Right now I guess one of the biggest challenges for me is I feel that rather prematurely I am having to enter the next phase of recovery…preparing to return to normality.  Again, I accept it is me rather than my family and colleagues doing the pushing.  But that is the way I am – superwoman, I guess, trying to make her come back.

The process of recovery is far more complex than I first thought and is multi-stepped.  There is obviously physical recovery and this, for me, came quickly.  Fuelled largely with anger initially, I am now able to run, swim and cycle faster than I have in years (not that there’s been any swimming since lockdown).  I have realised for just how long, physically, I was below par pre-diagnosis. My inability to run to the end of the road without stopping was the trigger to getting my bloods checked at work back in December 2018.  I’d been getting progressively slower, and more frustrated, for the six months prior. 2019 was manageable fitness-wise largely down to iron infusions.  Finally I am at a level I am happy with.

The emotional and mental recovery is more complicated and unpredictable.  I am left wondering what people do in terms of the emotional recovery if treatment is purely surgical?  The diagnosis is no less devastating…but there is no guidance on when you are expected to just get back in the saddle and crack on.  

Recovery is multi-stepped…

Just as grief has no time scale, neither does the emotional part of cancer recovery.  I realise that now, and I find myself stuck somewhere in the middle of this stage with no idea as to how long it will last.

As mentioned previously, I had always thought of myself as being able to keep things pretty much together…only a few minor wobbles in my 39 years on this earth.  Cancer has just knocked me sideways in ways I would never have predicted.

Superwoman is still missing in action and I’m still mourning the loss of control.  All sorts of expectations have been shattered….admittedly, these are largely self-imposed.  I think as a GP there is an understandable expectation that we are going to be healthy individuals.  People come to us to “dispense health” after all, don’t they?

In an almost perverse way, it was a relief to have chemotherapy.  It provided a time and space to legitimately start to come to terms with things.   There was no immediate pressure to return to work.  

I was however hoping that I would have longer to come to terms with things before having to contemplate how I navigate the return to “normality”…whatever that is. 

Especially in this new coronavirus infected world, the GP land I return to is going to be tough, and so very different to the place I left in November.  Psychologically, particularly, it is going to be hard.  The grief alone, that families are going to be experiencing as a result of coronavirus is hard to comprehend.  The injustice of it all, the denial of loved ones’ funeral wishes being granted, the inability to be with loved ones in their final hours.  GPs are going to be picking up the emotional pieces for years after corona finally runs its course.   I am going to need to be ready to face the challenge.

I have to be completely honest and admit there is also the issue of trust I am yet to deal with… trust in “the system”.  As a GP I need to have faith in the NHS.  99% of the time, the system works brilliantly.  We are so unbelievably lucky to have an excellent, free at the point of delivery, health service.  However, there are times when it just doesn’t go as it should.  No system is infallible, and I still struggle to accept it took as long as it did to get diagnosed. 

I’m scared about what happens next. I’m especially scared about being discharged into follow-up in a corona world where there seems to be no “routine” anything happening, and no end in sight to this horrific state of affairs we find ourselves in.  Corona is truly awful, and it is right that resources are diverted to the fight against it, but other diseases and health problems don’t stop.  Everything non-corona being put on hold for months is going to have huge ramifications.  I’m scared about getting lost in the process.  And I haven’t enough positive personal experience through this process to assure me “it’s all going to be alright”.  

It is so easy to look at the facts and think, “ok, you’ve had cancer, it’s gone, move on”. Don’t get me wrong, I am so grateful it has “gone”.  I have a beautiful family and I have everything to live for.  I need to keep reminding myself that if I’ve got through this, I can get through anything.   And I know I can.  I’m just a bit stuck with the practicalities of the “moving on” bit.

So now, I guess, begins the process of readjustment thinking about how I return to “normality”. Cancer certainly makes you look at your priorities.  My 7 year old daughter said to me a few weeks after surgery, “You know Mummy, I’m really pleased you had bowel cancer…not that I’m pleased you had bowel cancer, but it’s just so nice to have you at home”. 

I knew exactly what she meant.  I felt so incredibly guilty for all the school events, the teatimes, the bedtimes I have missed.  Seeing my babies grow.

If there is one thing I am grateful to cancer for, it is the time I have been given to truly appreciate, and be present with, my family.  It’s made me realise that I maybe haven’t always put my family first. Don’t get me wrong, I love my job.  I always have.  I am so lucky to be able to say that.  Yes, it’s stressful, and pressured, but I have thrived in this environment and it is so incredibly rewarding.  Perhaps though now, I need to rethink the work-life balance.  I thought I had it right, but now I’m not so sure.  

There are so many decisions to make in the weeks ahead, but I guess right now, I still need to take it one day at a time.  I’m still healing.  Baby steps.  One foot in front of the other.  Recovery, especially the emotional and mental recovery, is a long and winding road.  I’m definitely on my way, I can see that now, but I’m not there yet. 

Recovery…a long and winding road

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3 thoughts on “Recovery…a long and winding road

  1. Dear Claire,
    It says above this box, that this reply will not be published, but if it was (and anyway) I’d say…

    This GP, this mother, this woman is wonderful, talented, a compassionate leader of people, a light and a beacon of common sense in any gathering – listen to her, hear her story and be attentive to her insights, her good sense, her experience. She will lift you. Her life is precious and, through this blog, being seen in all its wisdom, care and outreaching generosity. If you believe in God, then God-ness is very close here. Listen, learn and let this blog help you to blossom in response as Claire has herself grown from bud to the full green of life-deepening experience under the light and sunshine of whatever/whoever causes anything to grow.

  2. This is so moving and so helpful to those of us, that love and care about you Claire, to get a better understanding of how you’re feeling. I hope it’s helping you a little too. Much love and virtual hugs XX

  3. Claire I was devastated to hear of your diagnosis from Verna. I used to love catching up with you and your beautiful family at Mummy’s Star birthday parties. You have always been so incredibly lovely to me and you would always ask how I am getting on. I know Mair thought a lot of you too.
    I love your recovery quilt and just want to wrap you in it for you to feel embraced in healing and nourishment.
    I wish cancer had not been part of your journey. And I hope that you have now turned that corner where the rest of your path is kinder and more joyful. You will get there, in time.
    In the meantime I know you are embracing time with your beautiful family.
    Next year I very much look forward to giving you a big hug at Mummy’s Star birthday celebrations xxx
    Thinking of you, love from Louisa xxx

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