Dear Readers
Thank you for reading my blog.
As mentioned before, my cancer has returned with a vengeance. Unfortunately it hasn't responded to the new cycle of chemotherapy I started in October. I have had 3 sessions of the then planned 6, however, results weren't as expected. More information has been posted on the Facebook Page "My Friend Retha Viviers".
In a nutshell: I have now started with a new treatment plan on 29 December in Cape Town in the hope that the huge tumours will shrink so that surgery will be possible. In total I have now completed 11 rounds of chemotherapy since February 2020. My next one is scheduled for 19 January.
I am finding the "recurrence" of my cancer difficult on various levels. Although I remain hopeful and am putting up a fight as before, it is as if it is more difficult emotionally. I don't know if this time of the year (Christmas/the beginning of a new year, a continued pandemic) is more difficult when facing a serious illness.
It reminds me vividly of how much everybody with chronic illnesses suffers on a daily basis. As often is said no matter your suffering, for the individual it remains a mountain they HAVE to climb on a daily basis. The image below explains different types of days whilst having a chronic illness. The thing is you never know in advance what kind of day tomorrow will be.
I am in contact with many M.E. and and also quite a few cancer patients and have learned so much from them. I have also joined a support group on Facebook for arthritis as I am really struggling with debilitating pain and my left hand's functionality is deteriorating.
How does one continue living with:
* unbearable symptoms from M.E., cancer and or chemotherapy
* severe pain 24/7
* scary not well-known symptoms even seizures, paralysis whilst having M.E.
* the fear of getting worse or even dying (it can happen to cancer and M.E. patients)
* not being able to be the partner of parent you once were
* loved ones' emotions and uncertainties
* the inability of so many people to understand how serious an illness M.E. is, that it impacts on your whole life?
Personally I believe the answer lies in having the RIGHT SUPPORT, ACCESS TO GOOD MEDICAL CARE & HAVING REALISTIC HOPE. The absence of any of these three impacts negatively on your quality of life, prognosis and future.
SUPPORT
I so often hear people say
* you must just be positive,
Obviously being negative all the time is definitely not good, but I am a firm believer of allowing yourself to feel what you feel.... it is okay to be sad, scared, angry, feeling hopeless, etc. at times.
There is something called TOXIC POSITIVITY - it means that negative emotions are seen as inherently bad. Instead, positivity and happiness are compulsively pushed, and authentic human emotional experiences are denied, minimised, or invalidated.
Hence, it is crucial to support someone with validation and hope.
Source: https://www.good.is/articles/support-and-positivity
Source of image
The way I see it, toxic positivity is almost an easy way out. Someone says something and instead of truly engaging with that person a reply or reaction is chosen showing very little interest. So often a person asks a chronic illness patient how they are, without really wanting an honest answer. It is as if the chronic illness patient should somehow be used to being ill, in pain, scared, concerned, etc.
It boils down to the ability to LISTEN. The saying "we have two ears and one mouth for a reason" is extremely valid. Often words aren't needed, a gentle hug, a soft smile can go far, just sitting with an ill person is extremely comforting. LISTEN and SILENT are spelled with the same letters!
Sharing how you are feeling
Of course nobody wants to listen to someone complaining ALL the time and it is important for us as patients to not do that. Granted, this can be very challenging when you are feeling extremely ill. Must we only share how we feel with people we know really care for us and truly try to understand?
What should we as patients do when someone asks us how we are? Do we say we are fine or do we tell the truth? Life has become so fast that we often don't have the time or energy to meaningfully engage with others, even as healthy people. I have often seen this issue being discussed in support groups on Facebook and observed there were a wide variety of viewpoints. It is almost a rhetorical question. I won't pretend I have the answer to this issue but EMPATHY from a healthy loved one, a family member, a friend or even a health care practitioner warms our hearts and often validates our suffering.
ACCESS TO GOOD MEDICAL CARE
I have been extremely fortunate: wonderful people have contributed financially to my cancer treatment after things went very wrong in a state hospital early last year. I don't have enough words to thank these kind souls let alone a benevolent anonymous fairy godmother. My heart breaks for those who can't access good medical care for their cancer. It is important to note that although there are treatments for cancer there are no guarantees that they will work. It remains a wait and see scenario, a journey of great uncertainty and ups and downs. One can also become very ill from the treatments. Fortunately, medicine has come a long way in treating cancer.
HOWEVER, medical care for M.E. patients is a complete different scenario, the reasons being:
* There is no cure yet for M.E. (there is quite a bit of research going on and we are really holding thumbs for breakthroughs)
* There are different subsets of M.E. making treatments even more difficult
* Some symptoms can be treated with medicine and supplements but these treatments are usually expensive and out of reach of the majority of patients
* Unfortunately the majority of health care practitioners don't have updated knowledge of M.E., hence treatment will be completely wrong and most likely detrimental to the patients' health
* Many patients are so severely ill, a visit to a doctor could literally kill them or worsen their M.E. substantially
* As in my case, many patients run out of funds, have to stop working, poverty becomes a reality for so many and there are NO funds for symptomatic treatment.
HAVING REALISTIC HOPE
The quote below resonates with me during this uncertain time in my cancer journey. It tends to give me peace of mind and I am hanging onto realistic hope. The truth is we have no idea what the future holds for anyone, only time will tell. I believe this quote encourages us to LIVE IN THE MOMENT and to accept that the outcome is currently unknown to us and that it is OKAY to NOT know. For me personally, it is a different way of looking at things and admittedly a difficult one as I am very analytical and prefer to identify the potential unknowns well in advance, to mitigate risks and to have back up plans in place. HOWEVER, it has now become part of my journey to trust the wait.
I won't lie to you; I am a work in progress, I succeed sometimes and I fall off the wagon a LOT, but I am trying and that is good enough for me.
Love and best wishes
Retha