50/50

As all the books and help guides suggest, each individual’s experience of Cancer can vastly differ, whether that is because of the type of Cancer they have, the treatment plan, the length of treatment, the doses of Chemotherapy and/or Radiotherapy, the individuals approach/attitude, and inevitably their chance of survival.

Regardless of this (incomplete) list of differences, I feel that many patients must be able to relate to each other, whether that is mirrored in thoughts/emotions that you feel you can only share with someone who has/had Cancer, or sharing experiences of nasty side effects, or simply being able to admit how scared you are without the worry of scaring/adding more stress to a family member/friend. I suspect not everyone would have the desire to share their experiences and personal emotions, and I can appreciate that, however I have found it extremely useful and comforting to talk openly to others who are currently fighting Cancer or are now successfuly in remission.

As expected the most comforting and relatable conversations I have shared have been with those that have/had the same Cancer as me, Acute Lymphoblastic Leukaemia (ALL). I recently came across a support network called B Positive, set up to support those diagnosed with ALL. This network was set up by Jonjo Rooney, who was diagnosed with ALL, aged 23, and throughout his treatment was frequently told to ‘be positive’ by friends and family, in addition his blood group is B RH positive (same as mine), and so this became his mantra throughout his treatment, which then evolved into a network to help support those affected by ALL. This is a great website and twitter account to follow, which shares individual’s stories, hosts events, and more.

Alongside connecting with individuals and support networks, I have watched a few Cancer related films/documentaries. Some may not agree with this decision, but I found it be a very therapeutic process. Last night I watched the film 50/50, for those that haven’t seen it, or haven’t heard of it, the film follows the journey of a 27 year old guy diagnosed with a unique back tumor (a Schwannoma Neurofibrosarcoma to be precise), who learns that his chance of survival is 50/50. It is interesting how your opinion of a statistic can change when they are associated with chances of survival. I thought this film perfectly captured some of the situations and emotions I had experienced since being diagnosed, and after researching the film I learnt that it was written by Will Reiser who based this film on his own experience with Cancer, definitely worth a watch.

This week I went to Southampton General to have my first meeting about the potential of a stem cell transplant. I must admit, this was a lot of information to take in and I got a little hung up on the duration of treatment, potential side effects, and statistics. Though I have a good understanding of statistics and the importance of a homogenous sample, in that moment in time when I was being told the statistical outcomes of stem cell transplants and the chances of staying in remission, I was a little overwhelmed. I guess this post started by highlighting the benefit (in my opinion) of being able to relate to other’s experiences and being able to openly share your emotions in a less pressured environment. On the other hand, I think it is important to also highlight that there can be negative implications of reading too much into other’s experiences or reading too much into what you should/shouldn’t expect in terms of side effects and potential outcomes. There is a fine line between positively relating to other’s experiences and the information you read or are told, and assuming that this is definitely going to be the case for you. This is something that I neglected to remember in this meeting, I lost my positivity and was caught up in the statistics, specifically the chances of relapse and mortality statistics. I appreciate that in these situations, doctors have to prepare you for the worst case scenario and give you all the information available. However, this can be a lot to absorb and digest in one sitting, and I can see how many can be discouraged afterwards, as I was! It wasn’t until I was back in my hospital room and one of my doctors took the time to sit down with me and fully explain the statistics and discuss my concerns, that I felt better about the whole process. We are still waiting to hear the results of my MRD (Minimal Residual Disease) test to confirm whether I will go for transplant or not, but it is good to get to grips with this treatment plan earlier rather than later, as it is quite intensive and involves moving hospitals.

In terms of my current treatment, I am on day 24 of this 28 day treatment plan, so not many days left of drugs. The last three and a half weeks have flown by, which I am very grateful for. Once I have completed the treatment days, we then wait for my blood counts (mainly my neutrophils) to come back up, and then I will hopefully be allowed home for a week or so (might just make it out for my birthday). This week I had another two units of blood (taking me up to 11 transfusions in total), my first platelet transfusion, and the usual intravenous and intrathecal Chemotherapies. Nothing else to report really, I’m feeling good, and I have had lots of lovely visitors keeping me company and bringing me lots of good food, even a Wagamamas take out!!

Remember…. “Be positive”