Musings – Off the hook for another 8 weeks

“Be thankful for your allotment in an imperfect world.  Though better circumstances can be imagined, far worse are nearer misses than you probably care to realize.”
Richelle E. Goodrich

It happens every eight weeks. The check-up date is circled in my calendar and the hospital appointment letter is stuck onto the fridge with a sheep fridge magnet (lest I forget). Then a couple of days before the appointment, I receive a text from Tallaght Hospital to remind me that I have an appointment. It invites me to phone the hospital to cancel it, if I have any signs of cough, cold etc. In eight years I have never missed one of these appointments. They are like my security blanket telling me that all is well.

I usually drop the kids to school on my way and I drive myself up to the hospital. The journey usually involves radio breakfast shows or whatever my current CD music crush is. Last Thursday it was ‘1989’ from Taylor Swift. I sang the lyrics badly all the way up. I’m still convinced she says Starbucks Lovers in her Blank Space song. Have a listen and see what you think!

I have found a shorter route to the hospital in the last six months so I take that and swing into the front avenue leading up to the hospital. The car park is a multi-storey one and it has very tight margins for the ramps. I could do it with my eyes closed at this stage but I am careful with my new Beetle as I make my way up to level 1. I even have my regular car parking space down at the very end of the row overlooking the A & E department.

My first stop is to phlebotomy and the urgent blood queue where there are only ever three or four people in front of me. I pass over my blood forms – one pink, one white and one green. They will take five to six vials of blood from me and check everything – a full blood count, renal, liver and bone counts and then they do the really important one – the free light chains – which is the indicator of whether there are Myeloma cells present.

They all know me at this stage. Margaret is the receptionist and coordinator and she is really chatty and pleasant. I don’t even flinch as the needle goes in. I know the vein to direct them to – it has never failed to give up it’s red treasure in all the years it has been pricked.

The vials are filled and the date of birth and name are matched to the labels. The bloods make their way to the lab so as my consultant will have the results before I sit down in front of him at about 11am. One one recent visit the phlebotomist queries how many vials of blood are needed for the free light chains test. I tell her it’s one red vial but that most times two red vials are sent off for free light chains. She looks at me curiously and checks it anyway in her notebook. I am right but I am still glad that she double checked. She asks me where I am working in the hospital and I tell her I don’t work there. She asks me if I am a nurse and I tell her I am not. She wonders where I get my medical knowledge from. I wouldn’t call it medical knowledge but you pick things up when you are doing the same rituals every eight weeks.

muffins

Next comes my little hospital treat – a chilled apple juice and a banana and walnut muffin. I never eat muffins at any other time but on these hospital visits. I sit in the cafe space and savour my treat. I take part in people-watching as I sit with my back to the wall. I imagine all the stories going on around me as staff, patients and family members mix and mingle in the cafe. I know that many of them are carrying worries about results just like I am.

Even though I have been doing this ritual for eight years I am still nervous about the results. How will my kidney function be? Did I drink enough water the last few days? Will there be any sign of the Myeloma? Will this be the time I get bad news?

After my cafe visit I head upstairs to level 3 to check in for the rapid access hematology clinic. They know me well too and I know my hospital number off by heart which helps to speed up the check in there.

Next comes the waiting – I have to wait while my bloods are checked and the appointment time is never what it says on the letter. I know that 11am means 11.30am or 11.45am. I don’t mind. The worst thing to be in this situation is stressed about time. It doesn’t matter what you have planned for after the appointment, it’s all irrelevant as your appointment will happen when it happens.

I pass the time by knitting, reading or chatting to other patients. Sharon or Roisin – two of the nurse specialists – will stop by for chats if they get a chance. I might see a patient who was transplanted when I was and we will catch up with each other and measure progress. I might see another familiar face who is on the same journey I am. I will always see new patients with fear and pain etched onto their faces. I am aware that I don’t see John any more or Julie. Sometimes I will ask and I will be told very gently that they have passed away. Sometimes I won’t ask because I know what the answer will be. I have seen many of my Myeloma ‘friends’ pass away. I know I am one of the lucky ones.

My appointment time comes and goes. Then my consultant arrives and I know he has just come from a meeting or a bedside visit to someone having their transplant. He’s hurried and busy. I can wait. I can always wait.

butterflies

The butterflies start to flutter in my stomach when I see him take my hospital chart (I am on my fifth or sixth chart by now ). When he disappears into the office I know he is sitting in front of the computer calling up my blood results. I know how long it takes so if there is any delay I start to wonder is it bad news.

He comes out of the office and calls my name. I look up, take a deep breath and I walk into the office.

I know by his face that my results are okay. I sit down and he says the words I long for each visit “Your bloods are all fine and there is no sign of any Myeloma”.

I physically relax and all the butterflies disappear.

My consultant knows that I like to make a note of every result so he calls out the blood results one by one and waits as I take them down. I know all the official abbreviations by now. I note my platelet count, my hemoglobin, my calcium, my creatinine, my white cells, and my neutrophils etc.

IMG_7377-0

Then we chat about any problems I have had – infections, lumps or bumps that shouldn’t be there.

He fills out new blood forms. We agree to meet again in two months – I say that as though I have a choice! (smiley face 🙂 )

Sometimes we talk about my remission being so complete and so steady. I am a ‘good patient’ in terms of outcomes to date and it must give the team a lift to have a success story like me.

We sometimes talk about what will happen when the myeloma comes back. I am reassured by him about all the option I will have once that happens.

We shake hands and off I go. The consultation lasts about ten minutes.

I am off the hook then for another eight weeks.

That was exactly the case last Thursday when I was in for my July appointment.

The rest of my day suddenly becomes relevant again as I head away from the clinic.

candles

I sometimes take a few minutes to visit the chapel in the hospital to offer a short prayer of thanks. It’s nice to be there giving thanks rather than asking for something.

“Those blessings are sweetest that are won with prayer and worn with thanks.”
Thomas Goodwin

I head back over to the car park to my Beetle. I take a few minutes to breathe out a few times and to allow my sigh of relief some space.

Then I turn the key in the ignition and head back to my life.

Chalk words

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