I decided to post some observations and suggestions that I have found helpful, in the hope that others may benefit from my mistakes. My main goal here however is, to emphasise the need to be attentive to your own recovery, treatment, life etc.
Firstly, this post is not intended to denigrate the incredible professionals that make up my health care team; but rather to underscore the need for you ... the patient ... to be 'actively involved' in all facets of your treatment.
I do realise that the health care professionals who look after my treatment; are: 'run off their feet' and that our Health Care System here in NSW, is in crisis through lack of resources i.e. in: finance, number of patient beds, state of the art equipment etc, but most importantly - trained and experienced STAFF!
In what follows, I want to mention just some of the 'things' that can 'fall through the cracks' in regard to our quality of care if we are not attentive - this is not an exhaustive list, merely representative.
Some Thoughts
(A) Apart from the obvious; i.e. asking questions; I would also recommend that all patients conduct their own research into possible treatment options and the 'pros and cons' of each. I would also recommend that you conduct research regarding the medication/s that you are offered.
You should discuss any and all concerns, raised by your research, with your doctor. As an example of the importance of this ... twice now my Radiation Oncologist has prescribed a dose that was twice as high as (usually) recommended - which was subsequently reduced - after the fact.
When I changed from Anandron to Androcur, I realised that I still had some tablets at home, left over from prior to the LHRH analogues being introduced. These were 300mg tablets (the appropriate dose for that occasion) which at the time I tolerated well for 4 weeks. The Radiation Oncologist felt that such a dose would be OK. However, the usual dose is 150mg. When I brought this to the attention of the Radiation Oncologist's registrar however, she immediately halved the dosage - after conferring with the Radiation Oncologist.
On the second occasion the Radiation Oncologist had discussed the introduction of 'Flomaxtra' and recommended I take two tablets, two hours before bed, and immediately after food. He also suggested that if I found that the night-time urinations were 'under control' but not so the daytime, then he suggested I take one in the AM and one in the PM.
(B) One of the most difficult aspects of 'living with cancer' is the sense that your life is 'out of control! I believe that conducting your own research and discussing this with your doctor/s, is one way that you can take back some measure of control and at the same time feel like a valued member of the health care team affecting your treatment.
Remember you are entitled to be respected as an individual; you are NOT simply a disease with a number! You are also entitled to maintain your dignity at all times and to be informed of any change that might affect your treatment - in advance!
I am very fortunate to have such a skilled team of professionals looking after my treatment! But, I realise that these dedicated men and women, have limitations - like the rest of us! For example:
Most often, each team member is 'highly focused' on their particular speciality' and there-in lies the possibility of certain 'things' falling between the cracks.
For example, I wanted to discuss an anomaly, that was noticed on the CT Scan, re my lymph nodes. My Radiation Oncologist however, replied:
"Sorry I'm not interested in tumour masses ... I'm treating this disease at the cellular level".
I wanted to respond:
"And I want to be treated with some respect ... this is important to me"!
But I didn't!
However, I will next time!
(C) There's something about our culture, that tends to place doctors (among other groups in society) upon pedestals; we tend to feel as though these authority figures are never wrong and should not be questioned! This is ludicrous when you stop to think about it! If something about your treatment is causing you concern, you have every right to demand an opportunity ... first: 'to be heard' and second: 'to have your concerns appropriately dealt with'.
(D) I am aware also, that the various streams of medicine that comprise the team that are part of my health care team DO meet regularly to discuss my treatment from a more holistic perspective; but I am not privy to such meetings and receive NO feedback as to what is discussed. In fact sometimes having your questions answered, is like 'pulling teeth' i.e. very painful! This is even more reason for the 'patient' to be vigilant towards his or her own treatment regime.
Further examples of how easy it is for 'things' to fall through the cracks (taken from an actual weekly review with my doctor):
I needed to remind the doctor that I should have had a 'liver function test' ... weeks ago! This I knew ONLY because of my own research! Oh ... ah ... YES, let's do that today. (The pathology request was marked URGENT).
When you have no 'Case Manager' looking at your treatment from a 'holistic perspective', your treatment can suffer; as the various specialists tend to focus (mostly) upon their own field of expertise - therefore 'things' can be missed!
What can I do about the increased fatigue and subsequent breathlessness? I'm afraid there's not much we can do about that. But you should begin to tolerate that portion that can be attributed to the Radiation in about another week or so.
Today I discovered, that there IS something that can be done! In fact there is MUCH that can be done in regard to fatigue. Apart from the obvious ... watch your diet, get enough sleep, pace yourself as necessary, take your meds on time AND exercise ... YES believe it or not, exercise not only assists with fatigue but also aids in controlling bone density loss!
For example, today, I tried a 'protein drink' (recommended by a doctor - my daughter) one that athletes use to increase their energy levels. Not only did it taste good, but I experienced an almost immediate increase in my sense of well-being.
Now don't worry, I wasn't about to rush out and attempt the very next triathlon event in the area; but with wisdom this supplement gives you energy in reserve as well the improved sense of well-being!
I will discuss my entire diet with the Nutritionist next week. I have not seen a Dietician previously, but now with my new found appreciation for diet etc, it has become a MUST!
For those wondering: "yes I have been on a strict diet prior to the Radiation Treatment; but this treatment restricts your dietary choices very considerably".
What about the 'confusion and memory loss'? You have so much 'on your plate' right now; it's no wonder you suffer a bit in this area!
While it is true that I have much on my mind, there are also a number of things that can assist in regard to 'confusion and memory loss' - just take a look around and find what works for you. For example:
I found that for me I need to undertake such activities as will stimulate my mind. The old adage: 'If you don't use it ... you lose it' ... applies very much here! But I also make sure that I have sufficient breaks!
My weight gain (9kg) concerns me is there anything you can suggest? I'm afraid not ... it goes along with the treatment ... particularly the Hormone Treatment.
While true, there remains some things that can assist in this regard. Firstly, it is recommended that we achieve certain nutritional and exercise goals. Care should be taken not to over-exercise when undergoing Radiation Treatment, but generally some walking and 'resistance training' would be suitable. Further weight lose can be achieved AFTER you have recovered from the Radiation Treatment.
In that case would you think that seeing a Nutritionist is advisable? Yes ... I think this is an excellent idea. I'll ring through now to obtain an appointment.
Now this response begs the question: 'Why was I not advised to seek such assistance before i.e. before my own research pointed this out?
Night time urinations have actually increased despite being prescribed 'Flomaxtra'? We might have to double your dosage.
My research tells me that Flomaxtra doesn't really kick in for about 7 days; and since this is day 7, would you suggest we wait another week? Yes that would be very sensible.
I think I have said enough to hopefully motivate all patients (particularly those fighting a 'terminal illness) to be more attentive to their own treatment regime. Afterall, no one will take as much interest in your life as YOU!
