Patience

Last Monday I thought about writing this next blog and was worried it might be a bit tedious for the reader used to the high drama of diagnosis and first treatment.  I had got through the worst of the pain of the first chemo and only had my wig appointment to look forward to last week.  Much as I am apprehensive about losing my hair, I’m not agonising about it, not yet. It’s not something I relish, but equally it isn’t something can really do anything about except be practical.  I have written about 'being practical' before, I thought about these things before, this is not new territory for me, and there I was, pondering what might appear in the next blog.  There is a lesson in that, one of those that could be converted into a syrupy meme with a hazy picture of a sunset as background.  Never worry about tomorrow, enjoy today.  If only I had known.

Looking back, I can see why the nurses didn’t make a big fuss of the injections I had to give myself.  As I discussed in the last blog, chemotherapy is a highly individual affair.  How each person responds is different and although there are broad themes that are followed, nobody can tell you how it is going to be for you. 

The pain that came with the chemotherapy was just about being held at bay with paracodal, and although the box of prefilled syringes came with a vast list of side effects for each condition it could treat, there was nothing to indicate that pain might be the big issue with these injections, any more than any other of the ten or twelve items in the side effect list.  Nevertheless, pain was my main side effect and it’s along time since I endured quite such intense pain.  The trouble with pain is how you deal with it.  Some schools of thought suggest dosing up before the pain hits, therefore sabotaging it before it overwhelms.  The problem with that is you must know what is coming.  I didn’t.  The injection itself, whilst unpleasant to contemplate, was straightforward.  The needle was small and sharp and sprang back into the body of the syringe once your finger was off the plunger.  That roll of fat round my stomach I have so despised in recent months has a use and was an excellent site for the injections.  The process was painless.  Maybe it’s because there was no pain at the time of injection, I perhaps expected this to just be something that happened after the worst was over.  My nurse did not tell me to expect any side effects, or perhaps she would have told me had I asked.  The pain began in the afternoon, many hours after the injection, so there was nothing to link them together, except I hadn’t felt this type of pain before, except perhaps in the middle phases of childbirth.  In childbirth I had been particularly affected by pain on the outside of my thighs, drawing, deep pain, which I believed was my muscles contracting with the contractions of my pelvis area.  However, this time, this pain was joined by deep pain in the small of the back and hips.  It came sometimes in sharp, paralysing shots, so I had to stop moving and breathe through it.  I found lying down uncomfortable, sitting down more so, so in the end I could only stand, slightly leaning and breathe.  The paracodal was giving relief for about an hour, and with four hourly gaps needed between repeat doses, it was clear I was going to need some help.  God bless the NHS and my GP practice.  I phoned to ask for my GP (who has said to contact him whenever I might need to) to be told he was unavailable but could the duty doctor help.  Within twenty minutes a kind sounding doctor phoned and with gentle precision questioned me about what was ailing me.  She prescribed stronger painkillers, sent the prescription to my chemist, told me how many to take and, this is the bit that comforts so, finished by saying ‘if there is anything we can do, please ask’.  

The tablets worked, and next time I shall know how to dose myself, and that I don’t have to be super brave and I won’t be dismissed as making too much of a fuss.  Such characteristics having been inculcated as a ‘good thing’ through my childhood, and probably yours.  Knowing when to ask for help is a difficult thing for me, and I know I’m not alone in trying to get the balance between stoicism and asking for help right.  

Taking your temperature is an essential part of caring for yourself when receiving chemotherapy.  It’s one of the non-negotiables, and something everyone receiving chemotherapy must do. It’s the first indication that you may have an infection, and with a diminished immune system, the chances of the infection escalating to something life threatening are not to be underestimated.  Whilst the nurses have been imprecise as to the nature of the side effects, the one thing they are firm on is taking your temperature.  It’s the first thing my nurse said as I settled myself into my comfy chair in the chemo ward “Now, have you bought your thermometer?”  I had and had been taking and recording my temperature every day, even before the chemo started to establish a base line.  My note book is gradually filling up from the back forward with daily recordings, which may seem a tad over cautious, but the events at the end of last week showed to me that such attention to detail useful, not overly self-absorbed.

My temperature had been up a little bit all the days I had been giving myself the injections, but last Thursday it went up again.  Not to danger levels but as I knew my baseline, I was concerned this wasn’t quite right.  I took it at ten-minute intervals but still it rose.  My thermometer has a fever warning function and sure enough, after the third measure over it went.  I waited another ten minutes and it was even a bit higher.  Nothing for it but to phone the acute oncology service.  I had no symptoms but the temperature.  The nurse on the other end of the phone was kind and helpful.  They had better see me.  I checked if it was ok for me to drive, and as I had no other symptoms it was concluded it was safe.

The acute oncology ward is a side ward off another one.  I never did find out what that other ward dealt with, except I know it was a ward where no flowers were allowed for hygiene reasons.  I was settled into a comfy chair and my temperature was taken.  It was down, but they were not for sending me home without a thorough check over.  Another cannula went in and bloods were taken and a dose of IV antibiotics administered.  I was sent for a chest x ray. Off I went across the hospital to yet another small windowless waiting room.  I worried about sitting near people who might be ill.  A tension grew within me, it would be so rude to make a fuss about being near other people, but should I make that fuss? How vulnerable was I?  Just as I was debating within myself, the anxiety rising inside, my name was called by a fierce, tall, grey haired radiographer.  He looks quite severe I thought to myself as he handed me my gown and ushered me to my cubicle for the inevitable disrobing of my top half.  Much has been written about the humiliations of hospital gown, it is such a stereotype, I was determined not to make a fuss, but I could only find one arm.  I didn’t want to disappoint the austere radiographer, but the nerves gave me the giggles.  ‘I’m really sorry, but I’m having trouble with my gown’ I uttered from behind the cubicle door.  I open to show my off the shoulder look and the radiographer viewed me with disapproval. ‘ah’ he said promptly and without a smile, ‘the last patient only had one arm’.  I changed promptly.  What is it about your body on the beach that looks really rather good, oiled and tanned, poured sleekly into a well-fitting bikini, and yet that same frame under the fluorescent light of a radiology changing room looks saggy and a bit past its best?  However, despite this rather depressing thought I did get the giggles.  This surprised my radiographer, and in rather a good way.  Gone was the set, professional face, and he smiled, transforming into rather a nice middle-aged man.  A divorced one as it happens, who has taken to lyrcra.  That explains the flat stomach I thought to myself and smiled up from under my eyelashes in my best Jilly Cooper heroine stance.  No, of course I didn’t get his number, nor did he ask for mine, most unprofessional, but amid all this I felt like Sarah the Person, just for five minutes.

I got back to the Acute Oncology Ward and waited for the doctor.  When she came over she had the details of my results.  My urine test was clear, my temperature was ok, and my chest x ray was clear, but my blood test had revealed the presence of infection.  I was given anti biotics to treat the infection.  Apparently, my white blood cell count was as expected, not too low and the doctor was happy for me to go home with my antibiotics, but it was very important I didn’t do things like wash up, deal with the rubbish and avoid contact with anybody with a cold and particularly, chicken pox.  The doctor also reassured me that the pain I had in the last week was side effects from the injections and it was safe to assume I would have the same reaction every time I had the injections.  Forewarned is forearmed I suppose.

Of course, I was not alone on the ward.  Apart from the staff there were a selection of other patients, one young woman with her two young sons, and husband in tow.  From what I tried not to overhear, her cancer has spread too far to be cured.  An older couple were in with the wife being treated for something.  We chatted briefly whilst waiting to be seen, she describing her husband as a rock.  He looked vaguely embarrassed in that way Englishman do.  You could almost hear him say ‘don’t be silly, what else would I do?’ but he looked sheepish. I can understand his diffidence.  In the face of the extraordinary courage and humanity of both the medical staff and these patients dealing with coming to the end of their lives far too soon, just to be there alongside someone seems nothing.  But without the professionals, friends and loved ones caring for those of us with this diagnosis, we might yet be facing a harder fight to make to a day without cancer, if we made it at all.  For that care I thank you, and hope with all my heart that day without cancer comes sooner than we can dream.