Taking ownership of your treatment

I realised early on in the process of being diagnosed and put onto a unique and very individual “schedule of works” during my situation that taking some level of ownership of my treatment would be a positive to be found in a sea of worry and potential negativity.

The idea was not  pretend to know more than the individual doctors or staff dealing with me at any point in the process, but to be able to hold a reasonably lucid conversation with the professionals about the best way forward. 

I started off just making sure I turned up at all appointments on time and with any relevant information that may have been requested at hand. Also to know what current medications I was on and what effects they may or may not have been having. 

The clinic appointments form the bedrock of the treatment plan, but you may also see any consultant from the team and not necessarily the same person as last time. A plan that was devised and agreed with one person may look very different two or three weeks later when life has happened in between appointments. 

When I turn up in the office therefore I will start the conversation off with a positive recap of what was agreed last time, then move on to how things have changed or developed since the last visit. 

This approach really helps to keep things going along in a positive manner. As time has passed over the last three years you obviously get to know the consultants very well. They are a positive group of people anyway but I find adding to the positivity of what’s going to be done next also helps them to remember how you like things done. 

The caseload these guys must have is presumably massive and varied, what will make one patient stand out from another is also going to vary enormously. What I was never going to do was be a grouch patient. The limits of the NHS budget and time constraints are well documented, going into a clinic appointment moaning that you have had to wait well past the official time is of no benefit to anyone I would avoid that at all costs. 

One of my good friends sent me a quote daily during my hospital stays , usually positive thoughts from famous people. I looked forward to them very much. One that still resonates with me relates to time . 

“Don’t ever give up. Don’t let frustration knock you down. Don’t let fear stand in your way. Don’t let time get in your head. Your only competition is yourself and when you finally succeed, the struggle will be all worth it “

When I’m going to the department I’m there to be seen when it’s my turn .. If the direction of the situation means I’m in the office being seen for two minutes or two hours makes no difference. I haven’t called in on my way to the bingo and need to get going as soon as possible afterwards, the appointment is the reason for the visit, giving it the respect it deserves works really well. 

Taking ownership has worked in a really positive way since my treatment has been handled from 2018 by two major hospitals.I realised that the communication loop between them about my progress was fragile at best. Therefore acting as my own go between in ensuring information gets updated is vital. 

One hospital does my quarterly bone marrow biopsy and then gives me the results directly.. I then contact the other place to let them know . It works the other way for normal clinic appointments, I relay my current blood stats to my liaison member of staff in London, to ensure both ends of the loop are sorted. It might seem unnecessary but I feel being involved in the process ensures nothing gets missed. 

So in summary ,ownership is attending appointments on time with information.. communication with individuals and the organisation as a whole when required..The uniqueness of my individual situation is exactly that , unique, it’s a little unfair I feel to expect everything to be done for you with no input coming the other way!

  The system in place works well and has done so for three years I see no reason it won’t continue to do so. 

BIOPIC TIMELINE

March 2016 

Diagnosed with Acute lymphoblastic leukaemia.

Treatment : Chemotherapy, Radiotherapy and Bone marrow transplant.

In remission

February 2018 

Relapsed

Agreed to do a trial at UCLH, CAR T-Cell therapy..  

July 2018 

In remission 

September 2019 

The journey continues.....