injections

In The Purple Zone

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Far from people not talking about cancer, I have found people are happy to talk about it if they know you have joined the club.

Someone I don’t know very well asked me to stay behind after a club Zoom meeting, personal not club business. I was puzzled and everyone else felt obliged to leave. I have noticed at paid for Zoom meetings, not the free sort where you get timed out after forty minutes, there are people who just disappear, others who wave goodbye the moment it officially ends and then there are  ‘only the sad and lonely’ left, reluctant to leave, keen to squeeze out a last bit of conversation or gossip about those who have already left…

Anyway, it turned out her husband had been diagnosed with prostate caner and was due to have radiotherapy. The fact that he was having it in a totally different place, body and hospital, did not put her off asking about my experiences.

In the middle of our busy local little Sainsbury on a Saturday morning I bumped into one of my neighbours who had an update. It was only falling off his bike and breaking his pelvis, that resulted in hospital blood tests revealing a rare blood cancer. We had a long chat about chemotherapy between the chocolate biscuits and the food bank.

Apart from the daily tiny anastrozole tablet and the twice daily huge adcal tablets, fortunately chewable, I have to have six infusions at six monthly intervals of Zoledronic acid. A week before is the blood test and booking that is wonderfully efficient at my hospital. Phone up oncology outpatients blood test line. They answer straight away and book you an appointment with no fuss.

The same nurse does blood tests all day long and soon calls you in. I feel like I know her and assume she knows why I’m there…

‘Have you got a blood form.’

’ No, I thought it was all on the computer.’

‘Who’s your consultant?’

My mind goes completely blank.

‘What are your ailments?’

‘Ailments? I haven’t got any ailments.’

‘Where was your cancer?’

‘Oh.. that..  breast.’

She narrowed the choice of consultant down to two and I recognised the name. A quick phone call and she knew what was being tested. We lay people think ‘a blood test’ will miraculously reveal all possible medical problems and presume there are at most three different kinds of tests, because they usually take three phials of blood.

The following week I headed confidently to Yellow Zone A, where I had the previous two infusions, only to find the waiting room in darkness and the desk deserted. There was a note pinned to the window. TIU unit moved to Purple Zone Level Two Cardiology Department. I don’t know what TIU actually stands for or why it would be in cardiology. Back down the corridor, back past Costa coffee, WH Smith and the toilets, down another corridor, up two flights of stairs. There were signs along the way, but once you leave stairwells and main corridors you are confronted with a series of swinging double doors and are not sure how far to go without ending up in an operating theatre or resuscitation room. I found a waiting area that said ‘wait here till called’, but how would they know I was here and what I was here for? I pushed some more doors and found a large room with an island in the middle and a person.

I was in the right place and had a nice young male nurse, who unfortunately couldn’t get the needle in. That always happens and I feel guilty for putting them under stress, you can’t go away and leave them in peace to concentrate. If you have had all your lymph nodes taken out, you are not allowed to use that arm ever again for anything, needles, even blood pressure band. So I only have one arm for them to use and my hand is the only part they can get into. Eventually he had to ask one of the other nurses who took a few tries. I wonder if it’s universal among the medical profession that patients are always told we will just ‘feel a little prick’ whatever is going in or coming out of our veins. I asked her if they are ever defeated and she said ‘No, well hardly ever…’ I suggested a scenario where the desperate nurse can’t find anywhere to put the needle except… ‘I’m just going to pop the needle into your jugular, just a tiny prick…’

Hot Line

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When we had our beginners’ chemotherapy group chat I was sure I would not be calling the Hot Line, despite the long list of reasons we were given for calling it. I don’t like making phone calls or bothering people. First reason is if your temperature is above 37.5 degrees Celsius ( 99.5 Fahrenheit ) or below 36. A high temperature may be sign of an infection and if you have just had your immunity zapped this can lead to the frightening sounding Neutropenic Sepsis. My expensive Boots thermometer handily beeps once for normal range, three times for 37.5 or over and goes berserk if you hit 38 degrees.

The first time I rang the hot line, early on a Sunday evening, the nurse asked me lots of questions and I answered No to all of them. I thought I had got away with it, then she said ‘I’ll just chat to the doctor and call you back.’

She rang back and said ‘Come straight to Accident and Emergency and bring an overnight bag. Our team are on till eight o’clock and we’ll meet you there to do emergency blood tests.’

WHAT, I was getting a whole team to myself?

She soon rang back to tell me to come straight to the oncology ward. My son had been about to serve up dinner…

Blood tests are to check for infection and you have to wait for results. An injection of antibiotics straight away, just in case and a thorough check up with the doctor who said I looked well. Because it was only seven days since my chemotherapy and week two is when your immunity is at its worst, they had decided to call me in. If there is an infection it means an overnight stay on an antibiotics drip. Yes you guessed, my blood tests were all fine. I asked how often I should take my temperature, they said once a day was fine.

I kept an overnight bag ready after that and it wasn’t long before I had to call again when my temperature was 38degrees. ‘Can someone bring you in?’

I looked out of the window and the road was completely deserted. Neighbours and friends are always saying  ‘Don’t forget if you need any help, lifts etc’ but of course you don’t actually know what everyone is doing on the spur of the moment… working from home, but probably doing a conference call to New York… It occurred to me that I could just call a taxi (memories of elderly relatives saying ‘oh yes, our taxis are very good’ ).

They are very good, even though a robot answered. It knew my address, creepy, I have only used them a few times ever. We soon established where I was going, the fare and then the robot said it would be there in four minutes – the taxi not the robot. Frantic dash to lock up the house and get ready.  Perhaps the fact that there are always several of the company taxis parked up in a quiet road round the corner helped.

This time I had missed my lunch, but I did get a sandwich, luckily as I was there all afternoon. Fortunately the bloods were fine again and all that was left to do was a urine sample, with complicated instructions involving a bowl and a cardboard bed pan in the spacious disabled toilet I was sharing with two men in our bay. But I was getting off lightly as I heard a nurse saying to a chap in the corridor ‘Wee in the bowl and the poo goes in the paper bag.’

I was relieved to be going home, especially as I had forgotten to put my Kindle or any book in my overnight bag, that would have been a nightmare. It was now 5.30pm, a call for a taxi produced a message saying there was a forty five minute delay, so as I was feeling fine and they said I was fine I just crossed the road to the bus stop.

My third call to the hot line was for a tender spot on my upper chemotherapy arm and I asked if it could be blood clot, the nurse said it was just a bit of inflammation. I should have rung back again sooner, but several days later I spent the afternoon at the hospital. I was in a bay with three other ladies, the eldest of whom looked very grumpy. Blood was taken, but when the doctor came she was sure it was a blood clot, not an infection and I needed an ultrasound, but she couldn’t book me in till 8am tomorrow.

Luckily, after a while there was a flurry of activity and a nurse came to gather several of us to go down to ultrasound. Grumpy Lady suddenly piped up and said ‘I’ve been waiting seven hours for my kidney scan.’ No wonder she had looked so miserable.

It was a peripheral blood clot, not serious like deep vein thrombosis. Back on the ward I had the first of two months of blood thinning injections. I administered it myself to prove I would be able to do them at home. As I was getting ready to go a nurse came to Grumpy Lady and told her she was ready to take her down to the ward. She looked surprised as no one had told her she was staying in overnight.

Needles

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Week Three after my first chemotherapy session included an appointment to oncology outpatients to see a nurse. I told her how fit I was feeling and she reassured me the fatigue would get worse each time  ( perhaps she said slightly worse )  and it was amazing how fitness levels dropped. She also said this was the week when hair thins… but she did order me mouth wash for next time; sore mouth and food tasting like mashed cardboard is probably the worst part. But like the fatigue it had suddenly got better and food tasted wonderful.

Sure enough, two days later my hair did start falling out; yay, no need to bother with the cold cap next time and I could get out my collection of colourful scarf/hat Chemo Chic wear, mostly ordered from Hannah Bandanna. It didn’t all fall out and I look rather like my grandmother, who even when I was young had very sparse wispy white hair. We just took this as being what a grandmother looked like, along with the large pink plastic whistling NHS hearing aid box that hung on her chest. Now I wonder if the hair loss was upsetting for her and was it the stress of bringing up three children while Granddad was away in World War Two ( away in Southport with the civil service, not on the front, he had already done that in WW1) or perhaps genetic, her sister was completely bald and hung her wig on the bed post overnight.

May not be accurate representation of Tidalscribe

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Sunday ‘chemo eve’ I went with my son to the beach hut and we had a swim in the sea. He probably got more than he bargained for; walking along the cliff top we met a couple I know, who hadn’t heard about the big BC. He has lung cancer so lots to chat about!  On the way home, walking along the promenade, we met more friends at their beach hut and she recalled her bowel cancer   treatment…  You’re never alone with cancer!

In the ward on Monday was the young lady from last time with a full head of hair and about to put on the cold cap, proof it can work. The lady opposite me was sitting quite happily with her bald head uncovered. They were trying to put in her canula, while she repeated she didn’t usually have any trouble. At the chemo group chat the sister had said they can always find a vein. I gather putting a canula in is a nerve wracking rite of passage for medical students and I would certainly not like to try putting a needle into and not straight through a thin or even invisible vein.

Smugly I assumed mine would go smoothly, but my nurse also had trouble. I have only one arm they can use – the arm of the lymph node removal is apparently out of bounds for everything including doing blood pressure. Inevitably the desperate tapping of veins etc has to be performed with the patient looking on, which can’t help, but third time lucky. Meanwhile it was about fourth person lucky, a nursing assistant, who managed to get into the vein of the lady opposite.

The ‘red poison’ is put in slowly by syringe; it is so strong they must keep a close eye to make sure it doesn’t go into surrounding tissue. The second drug just goes in by drip and was only supposed to take fifteen minutes, but no sooner had I messaged my lift that I wouldn’t be long than the alarm beeped. The drip had come to a halt; much tapping of the tube and fiddling with the box the tubes feed through between the bag and the arm. In the end the nurse removed the yards of plastic tube, dumped it all in the bin and started with a new length of tube; an idea I had been tempted to suggest myself. All was well until just two minutes left when it stopped again, luckily she was able to restart.

Soon I was ready with my bag of prescriptions to take home, the large bottle of mouth wash making it deceptively heavy. I followed the WAY OUT signs, but luckily paused at the entrance to rearrange my stuff and glancing in the prescription bag realised the seven day course of injections ( which stimulate white cell growth ) was missing. The centre is actually in temporary accommodation in a large ward while the regular place is being upgraded; I had great difficulty finding my way back through the maze of desks, little rooms and other bays till I found Bay Three. My needles were still in their fridge.

At home three days later I was waiting for the district nurse to come and do my first injection, they can call any time between 8am and 5pm, but I had this funny feeling the hospital may not have contacted them and phoned up before noon to make sure. No they did not have me down and did I have the prescription form? NO, I had not thought to look in the bag and check. They cannot do injections without the oncologist’s prescription form on which they have to stick a tiny label peeled with difficulty from the syringe and write the date. What number to ring? After searching through my bundles of information I had no idea, but actually phoning the main hospital number and working through the options is the easiest approach and I did end up in the right place. The nurse said notification should have ‘gone to the hub’ and then out to the district nurse. I was home alone and no I couldn’t send anyone to fetch the forgotten prescription. Fortunately she agreed to phone the district nurse and email them the form…  I wasn’t totally convinced and had almost given up hope when the nurse turned up at 4.55pm.

Now my aim was to learn to do injections myself, it looked quite easy. In the stomach is not as bad as it sounds, subcutaneous, under the skin, just a matter of taking a fold of fat skin. I’m sure there are many people out there used to doing injections on themselves for various conditions, but this was my first time. The next day I did it under supervision, no problems, yes I would manage fine by myself tomorrow.

The nurse said the cap on the needle point is very stiff so you have to grip tightly and pull hard. Next morning I did exactly that… the plunger came out and liquid sprayed into the air. I had broken it. I took out another syringe and made sure I gripped the right part, success. Perhaps I would keep quiet and not tell anyone about the broken one…