3. Coming Home

Coming home was wonderful.  I’d never been so happy to be there.  On the first afternoon at home I went upstairs to the bedroom, lay down in my own bed for the first time in 10 days and as my head touched the pillow I felt my entire body relax.  It was blissful to be in my own bed, with my own sheets, no monitors or alarms, no nurses coming in and out, just complete peace and quiet, except for the quiet chirp of birds outside. 

 The family was also happy to have me home.  Madeleine was terribly excited, and Lucia was too, although she was still very wary of me and kept her distance.  She didn’t want a cuddle, but at least I could sit on the sofa next to her, and watch her play. 

 My mother was still staying with us, and seeing how ill I still was she agreed to stay on for a few more days.  I could barely shower myself, and couldn’t get myself food or do anything for the girls or Andrew.  I was eating purees and drinking water, so I was getting stronger and feeling better each day, but was stunned at how difficult the operation had been and how much time it would take to recover. 

 I was still in a huge amount of pain, although strangely, not in my mouth.  Once the packing came out of my nose there was really no more pain in either the mouth or nose, and I just had the odd feeling of a huge soft palate that felt like a giant marshmallow.  It would shrink over time, but for now it seemed to take up half my mouth.  I could feel stitches too, poking out around my mouth, although these would dissolve eventually. 

 The one place that really hurt was my arm.  The enormous bandaging had been removed before I left hospital and replaced by much smaller bandages.  It had been interesting to see the scar, which ran from my wrist to about five centimetres above my elbow.   It was still in its early stages of healing and the two angry red edges of the scar sat next to each other, pressed together but not melding yet.  There was a large black suture every centimetre or so, and the odd speck of green pus oozing from the scar.  All in all, I was glad to see it covered up again.  The pain was almost unbearable however, and didn’t seem to be getting any better.  It felt like a knife was being plunged into my arm and twisted.

 My leg also hurt, where the skin graft had been taken.  That scar was a very neat square, about 15 centimetres square, on my left thigh.  Miraculously, about two weeks after I got home, it suddenly stopped hurting.  My arm did the same about four weeks later; it seemed to reach a point overnight in its healing process where the pain stopped.  My quality of life immediately improved.

 Before the pain stopped, I shuffled around as best I could, trying to be a mother at least some of the time but sleeping most of the time and spending the rest of the time moving between couch and armchair.  I sent a cheery email to all my friends a week after getting home, telling them I was on the mend, still swollen and speaking strangely but up to visitors.  Luckily, they had the good sense not to come rushing at once, because in truth I really wasn’t that well and not particularly ready for visitors.  I was very embarrassed by my new voice, which sounded very nasal and muffled to me.  I was also having huge trouble with my ears, which seemed to be permanently blocked.  I thought my voice and my ears would improve when my nose cleared – I still couldn’t breathe through my nose.  Sometimes while sleeping I would stop breathing completely.  Andrew was in a permanent state of anxiety, listening to my snuffling and choking until eventually he would wake me up. 

 Thankfully, not long after getting home I was able to breathe through my nose: unfortunately it made no difference to my voice or my ears.  Still, one thing at a time.

 Mentally, I was still coping with the fact that the operation hadn’t been as successful as hoped. It wasn’t until about a week after surgery that Andrew gently told me that ST could not get ‘clean margins’ around the tumour.  A ‘clean margin’ is the best outcome when removing a tumour, and means that the surgeon has removed not only the tumour but also an area of tissue around the tumour that is cancer-free.  If you have got clean margins, you can be pretty certain you’ve removed the entire tumour.  In my case, to achieve clean margins ST would have removed so much of my mouth I would never have been able to speak or swallow again.

 I found this prospect deeply shocking.  Although ST would never have left me so debilitated, somehow the fact that only such a terrible outcome could have removed all the cancer bought home to me what a dire situation I was in.  ST felt positive that the rest of the tumour could be dealt with by radiotherapy, and I did try to take comfort from that, but it was an uphill mental battle.

 We still had Judi, our fulltime nanny, and she was brilliant with the girls and very understanding about my limitations, but I worried constantly about the way my illness was impacting on how I dealt with the girls.  

 

 As in the beginning, I could hardly bear to be in the same room as Madeleine and Lucia, but also wanted to just hold on to them and never let them go.  It was a little better after surgery, but the same feeling, of needing some space from the girls was still there.  

 

 I went and saw a counsellor at the Cancer Society, who suggested it might be partly some sort of self protection.  When I was with them I couldn’t help thinking about dying and leaving them, so emotionally it was easier to be away.  She also suggested it might be partly that small children take up a lot of emotional energy and I didn’t have much emotional energy to spare.

For whatever reason though, I found myself not engaging with them as much as I used to and I felt terrible about it.  I still played with them and read to them and hugged them, but I knew it was less than I should.

I went to see PB my ENT to see if he could unblock my ears.  He was full of bad news.  My eustacean tubes were blocked, were likely to be an ongoing problem, would get worse during radiotherapy, and in fact I might temporarily need hearing aids.

 He had more gloom and doom to dispense.  He said unexpected things happening (eg hearing problems) was inevitable when doctors push the envelope as they were doing with my treatment – the surgery and the upcoming radiotherapy (in fact he called it “radical” radiotherapy which didn’t make me feel any better) – and this was all “cutting edge” treatment.  I supposed that meant they are using the most advanced methods, but I really wished I were having bog standard treatment for a bog standard problem, not new innovative problems that people didn’t expect.