Long term follow up service. We have arrived. We unceremoniously departed oncology care and are now members of the Tuesday Club at the Royal Marsden. Tuesdays are all about long term follow up. You join the Tuesday Club after five years in remission, ie five years since the end of active treatment with no relapse. This is very good, a good club to be a member of (if you have to be a member of a club in the first place).
After years of ‘fighting’, curing and looking out for cancer, today’s appointment was not at all about cancer. The long term follow up specialist nurse introduced herself to us and talked us through what these clinics are for. Not at all about looking out for signs that the cancer has come back, but instead looking forward to living with the history of a cancer. After years of addressing merely issues that related to Vega’s initial diagnosis and treatment, we are now with a team that, in comparison with the oncology team, has a much more holistic approach. We are presented with a ‘Paediatric Worry & Memory Thermometer’, one for her one for me. A two page survey to complete which asks questions like ‘How have you felt today, yesterday and last week? Tick all that apply.’ and then offers options like happy or worried or angry.
The parent survey also includes questions about what I am worried about- myself? my partner? my other children? I find myself thinking that these questions seem rather late. I feel as if I have spend five years putting myself together again, in a somewhat makeshift form, something that resembles my former self but really only looks like it rather than feels or functions like it.
I am asking myself whether I appreciate these questions now- better late than never sort of thing- or not. I feel vulnerable in this form I have pieced together and am worried it might break if I actually put down on that paper that I am still worried, yes even five years on. I feel angry that they are making me think about it and foolish for not having a better grip.
Once we completed the surveys we are seen by the long term follow up doctor, who talks about our responses. I am pleasantly surprised that she listens to my concerns about Vega’s ongoing stomach issues sincerely and in a way that the oncologist team have not done before. We discuss options and a possible treatment plan and Vega is prescribed an anti-acid medication again to see if this will help with the pretty much constant pain she is experiencing. We also talk about Vega’s stamina and lack of leg strength and balance issues. Long term follow up is all about long term side effects which are a large part of surviving cancer treatment, so we are presented with a Care Plan that summarises all of Vega’s treatment and outlines possible long term effects by organ- pretty much.
Heart problems- somewhat likely. Medication Vega received listed and the possible investigations required.
Lung problems- unlikely. As above.
Kidney problems- somewhat likely. As Above.
Endocrine problems- likely. As above.
Fertility- unlikely. As above, plus some guidance on extra investigations that might be required during pregnancy and birth (mostly- see heart).
Gastro problems- likely. Known problems. Investigation and supportive care ongoing.
Memory and learning problems- unlikely. As above.
And so on and on.
As we talk through the plan, and I see before me all the medications again, black on white, names I haven’t brought to my own attention for quite some time now, dates of administering, interventions, treatment protocols… I suddenly feel really dizzy. I am glad I filled out that worry survey before, because now I feel like I suffer from PTS. But both Vega and I have become good at getting on with it and so we do.
Because of Vega’s recurring stomach pains we are being sent to the Day Care unit for some more test, urine, blood sugar, blood pressure, stuff.
We have to sit in the Day Care unit waiting area, which is different to the Outpatient unit. Day Care is the place where chemo is administered, where you have ‘the magic sleeps’, the intrathecal methotrexate- and I am surprised I still remember the name for this. The children in this waiting area are currently on treatment, little bald heads all round, feeding tubes, tiredness and steroid tantrums. A sweet little girl is playing in front of us, too quiet for a child of this age. Vega spots her ‘wiggly’ sticking out from under her shirt. I can sense the moment Vega really sees the girl and I realise that she knows that that illness was a big deal, not like having the chickenpox or the flu.
I am acutely aware of the large size of the child sitting next to me, whose body but also whose awareness has grown over the last years, looking at a very little person who is going through the same thing that Vega did when she was at that age. Her realisation of the severity of her illness is radiating from her. She is nervous, and stressed, seeking physical contact with me by leaning her 10 year old body into mine, like she wants to crawl into me. Disappear from this place. Familiar feelings for me too, the desire to take her away from it all, get out, never come back, while I am trying to hold a space for both of our huge overwhelming feelings. It is tiring and I feel nauseous.
While all this possibly sounds overly dramatic and whining, I am also thinking of us as a picture of hope for the other parents and children in the waiting area. I am trying to bring that feeling to the front of all the dizziness and anxiety and think about what a splendid job I have done to put this Humpty back together again. I guess a certain required gentleness when handling is really not something I should beat myself up about.