Friday, 28 November 2014

79. The final VIP session

The very last drops of chemo
The drip stand beeps, the nurse comes to replace the blue-bagged chemo infusion with a flushing fluid, and that is it.

The end. No more chemotherapy. I'm all done.

There is relief, but also, strangely and unexpectedly, a sense of loss. I have become a resident patient here, I know the drill, I know the nurses, I know my way round. There is a comfort in this sense of belonging.

I can suddenly understand why people say that the period of time after the end of cancer treatment is almost as hard, if not harder, than the treatment itself. I've spent the best part of this year getting my head round being a cancer patient, being unwell all the time, being at the forefront of everyone's mind and attention. Always having more appointments in the diary, the next round of chemo to get ready for, coming up for air just briefly.

I have gained a new identity, and it's been hard-won. Now, suddenly, I don't have to go back. I hug my nurse (I've got Saviour Nurse for this final round, hurray) with a tinge of sadness.

I had thought that I would never, ever want to set foot on the chemo ward again. Looking at the armchairs squashed into the available space, surrounded by drip stands and an air of calm despite the business, I always have to fight the urge to run away. But now I am glad I work in this hospital. I can be reasonably sure that I will have dealings with this ward again in the future, if not as a patient then at least professionally. If your work involves people with intellectual disabilities who have cancer, you are bound to touch base with the cancer wards occasionally. 

Perhaps it is similar to the sense of loss we felt, my sisters and I, when we said goodbye to the nursing home where my mother died. Such sadness associated with the place, but these emotions are as strong and profound and necessary as joy (and aren't there always moments of joy to be found amidst the sadness?).

Those kind of places put you in touch with the raw essence of life, and leaving them (even if you are leaving them so that you can pick up the pieces of your happy old life again) takes courage. Because you know, really, that you won't get your happy old life back. What you need to piece together is a happy new life, made up of the old, but somehow accommodating the dying mother, the cancer diagnosis, the gruelling treatment.

Contemplating this unexpected perspective, I am almost glad that I still have radiotherapy to look forward to.

It may sound odd, but I am not sure I am quite ready to ease out of my poorly-patient-position and start picking up pieces.

I suspect that the daily trips to the Royal Marsden Hospital will be so grim and exhausting, that I will be truly happy when that's over. So let's hope I will be ready then to do the picking-up.

But then it's not over either. My chemo doctor gave me an appointment for the end of January, after the end of the radiotherapy, to start on hormone treatment. As my cancer was prompted into existence by hormones, I will need five to ten years of tablets. I hadn't anticipated that this involves careful thinking, more scans to see if my bones are strong enough, etc etc.

So perhaps there is no need to mourn the passing of patient-hood. Once a cancer patient, always a cancer patient, it seems.

The final round of chemo wasn't without a final episode of high drama.

Not quite as bad as that last on-the-spot collapse, but it came close. Despite the preventative anti-allergy drugs they'd given me just before, and the standard high dose of steroids to help the body combat its own instinct to shut down when the ridiculously strong Docetaxel makes an entry, I had another strong reaction some ten minutes after the chemo drip was turned on.

Like last time, it came on within seconds. Steaming hot flushes, breathing difficulties. This time, I brought Knee Owl Friend along to be my personal assistant. She looked in alarm at my beetroot face, "Should I call the nurse?" Yes! She should!

Saviour Nurse was sitting with another patient and was about to start giving her the slow-syringe treatment, but in typical Saviour fashion, got up at once to stop my drip, calling out "I've got a reaction over here!" Within minutes, other nurses had arrived with more anti-allergy injections, Piriton and Hydrocortisone. My flushed face and compressed chest settled at once. I wasn't worried this time. Saviour Nurse is calm and competent (even managing to talk to the abandoned patient in the meantime), so what's there to fear?

The only worry was that if I had another reaction once my chemo drip was re-started, they couldn't give me any further rescue medicine. So that, I assume, would mean that I couldn't have the final round of chemo. But all went well after this. I snoozed through the next couple of hours, courtesy of Piriton's soporific effect.

And that was that.

I am home now and I am fine.

I wasn't dreading this final round quite as much, because the previous cycle had been quite manageable. Very tired, yes; sore bones and muscles, yes;  but these things are simply dealt with by engaging with beds and sofas. Last time, I had a couple of days' grace before the tiredness descended, so I'm expecting the same this time round. So far so good.

And at least I know that things will look up again. The extra week before yesterday's chemo was a wonderful thing. Because right up to the day the chemo would have been due, I was still too tired to get out much, and I was secretly worried that it would be too difficult for me to get to Glasgow. But then my stamina came back in leaps and bounds.

Let me tell you, it was absolutely fantastic to be at my conference.

It made me feel like a normal human being again. It was a joy to be with my colleagues from across the UK. It was good to drag my forgotten professionalism out of my boots, to chair the day with reasonable success, and to be inspired (as always) by so many enthusiastic delegates and speakers. Everyone was kind. Everyone was telling me how well I looked, which was nice to hear.

Chairing the conference

And at the end of the day, when I had to hand over the chairpersonship of the PCPLD Network to Jason (not because I am ill, but because my six year maximum mandate has come to an end), they gave me an extraordinary thank you speech and a gift that brought tears to my eyes.

Perhaps it won't be so bad, after all, to finish cancer treatment and go back to work properly.

I am presented with a wonderful print as a thank-you for my six years as chair
Apparently, my colleages had been asked to send in some words they associate with me...
how kind and generous!
(I note that the words Forgetful and Stubborn are mysteriously missing from this collection)

1 comment:

  1. Lovely photo Irene- it made me smile! Delighted to hear that you've reached the end of this stage of the journey and wishing you all the best with the next part of your recovery.
    Karen, Dublin.