3rd September 2914: London, United Kingdom
Relationships were mentioned last week. Essential to any relationship is communication, and for people experiencing Cancer, this is a pivotal matter. Personally, a degree of frustration was experienced today, yet, some points can also be highlighted from this chain of events to form a discussion. A quick summary of the situation results from my current stay in London, and the need to visit St Bartholomew’s Hospital for checks, particualrly when high levels of nausea and lethargy for a period deem a check essential. Both points ultimately lead to a worry about the illness returning or toxicity from chemotherapy. Results from tests undertaken showed that the form of chemotherapy I receive (Mitotane) was not within a recommended therapeutic guideline. Consequently, the doctors in London instructed me to increase my dose. Rather than following the advice, I informed the staff in the first instance I would prefer the point discussed with my doctor in Sydney. My reasoning being that I am in a research project, with the specific objective to ensure I receive optimal levels of Mitotane. Furthermore, the message reinforced my alignment to the doctor whilst also showing a respect for his professional opinion. The only issue was that a response from Australia had not been obtained for eight days, maybe not so long, however, it seems an eternity during times whereby I am crippled with nausea accompanied with feelings of fear. I have always wanted to ensure any follow up related to my care and treatment is addressed at the nearest possible time. Over the period of eight days, the London team had sent one email and I had sent two emails, one included his secretary into communication. On the eighth day, the following email was exchanged, immediately relieving my stress due to my objectives being achieved. Just to note, I have blocked out both all names for purposes of confidentiality.
Just a follow up note to convey I am aware of the demands you have from your role and recognise there are many people who would be requesting information and assistance from you.
I am not expecting an immediate response every time I have a query, however, am hoping for some clarity specifically on the matter of increasing the Mitotane. The email from the registrar at St Bart’s showed my current Mitotane levels were below the therapeutic guidelines. I am aware the plan was to slowly increase this dose, and now after approximately four months, I am concerned that the drugs that I am putting into my body aren’t performing their intended function.
Obviously, I have no knowledge about this so am just asking for clarity and reassurance, as I’m not certain whether a clearance is needed from Newcastle prior to the increase in dose, whether the recommended therapeutic dose is at all applicable (previous conversation about there being no-standardised level for Mitotane use) or if there is another reason I am unaware of?
Similar to previous requests, I do not intend to come across in a critical manner. I would just like to be more informed about my care and treatment, as understandably feeling uncertain on specific matters causes me to experience a level of stress.
Thank you for your time
It is not my intention to suggest this is the best example available. Rather a basis to show how I went about getting my objectives completed and to also outline some points for others to consider when communicating with doctors:
– Direct contact with the doctor is desired in comparison to communicating via a secretary or administrative worker. This is not always going to be possible. Ask at an early stage to obtain the mobile phone, email and what to do in emergencies.
– Providing a request in writing allows you the time to put together your points without missing any information. At times, you can hangup the phone, then have the moment of ‘ahh, I didn’t say’.
– An email allows you to get someone to check it prior to sending for corrections and suggestions and is a reference point, with clarity on timeframes for when it was sent, the content of the email and what was agreed.
– The email example above shows an understanding of the competing demands of the doctor all requiring his/her immediate attention. Therefore, it is essential to be mindful of how you get your message across as you don’t know what sort of emergencies he/she has to encounter.
– Be concise, assertive and use specific questioning to outline what is concerning you. Hostility is not going to achieve anything, nor is a lengthy document. Keep it short, clear and simple, assuming that he/she has a number of patients to see plus all the emails that will be waiting in the inbox.
– Don’t be afraid to follow up on points when you don’t feel the response has been adequate or the timeframe in getting back to you is too slow.
Some points to consider in face to face meetings include:
– Be prepared, having notes and a folder containing all your information. One of the most important points is that you need to be your expert, of course you are not to have all the medical knowledge, however, extensive reading of your specific area of inquiry and numerous quesitons should be asked in each appointment.
– Ask those around you for points about what you plan to say and ask for suggestions for anything you may have missed.
– Explore research possibilities, it is better for you and the Cancer community should you be involved in a study.
– Explore what other care and treatment options are available, including other treating practitioners.
– Think about the varying people providing support along the journey. Consider taking someone, close, i.e. spouse/parent/sibling/son/daughter/relative or friend with you to each appointment.
– Finally, remember it is your body so take charge and utilise the medical knowledge available plus look to increasing your knowledge about other factors to be discussed at later stages, i.e. nutrition, movement/exercise, meditation/mindfulness, stress reduction, relationships, religion/spirituality & the surrounding environment.