Oof. Keeping subject light for the first blog post ay Amber?
For those who are unaware, on August 19th 2019 I was diagnosed with Acute Lymphoblastic Leukaemia. This, as to be expected, meant a plethora of things which even those unfamiliar with cancer would generally be aware of. These including ; a nine month course of intensive chemotherapy followed by 2 year maintenance , the loss of all facial and body hair ( twice may I add) , multiple long term hospital stays, and obviously a bombardment of sympathetic head tilts and stuffed animals.
However, it has come to my attention that many people outside the ' cancer world' will be unaware of many daily and regular occurrences that are fundamentally only experienced and understood by those with and/or treating someone with a life threatening illness such as this. So, If you are a fellow cancer survivor yearning for some relatability , or simply looking to be informed- I will discuss many of the aspects of cancer which in my personal experience, seem to be overlooked.
1) Cancer Muggles
UGH. Where do I start?
What is known as a 'cancer muggle' refers to people who advise obscure medical cures for cancer such as coffee enemas and kale juice. These creatures also insist that chemotherapy is a way in which doctors slowly kill all cancer patients for 'population control' ( essentially, the type of person who believes the earth is flat and pigeons are government spies).
Unbeknownst to me before my treatment, but these opinions are far more common than you think! Just a few days ago I had an Uber driver suggest my acidic environment induced my leukaemia and insisted I drink alkaline juice(Safe to say he received a one star rating).
2) Chemo brain/Chemo craving
These neurological responses to the affects of chemotherapy are lesser known than the more obvious vomiting and diarrhoea. (lovely imagery I am aware).Although, it is common for cancer patients to experience both of these bizarre side affects.
Have you ever found yourself unable to remember a celebrities name or the correct meaning of a word so-much-so that it horrendously irritates you and you have to google it? Well, that essentially encapsulates this experience..
This hidden side affect manifests itself through utter confusion and delirium particularly within early cycles of chemotherapy, when the body is 'getting used to' the treatment' ( Although poison isn't necessarily something the body ever gets used to really). In my experience, this included memory fog and struggling to focus on multiple things at once, I can't tell you how many times I misplaced literally, EVERYTHING! For me it got so intense that I would leave post it note reminders scattered around the perimeters of my bedroom, only to find them and have no clue what I was attempting to remind myself about.
One side affect I personally was not expecting AT ALL , was the concept of chemo cravings/how taste buds are affected during treatment. Not only does your mouth essentially taste like cardboard when adjusting, but this also takes a toll on cravings as well as irradiates previous affinities to particular foods. For example, I was under the impression that coca-cola, a prior favourite beverage of mine, tasted like carbonated milk and I was repulsed. Whereas, I constantly seemed to crave mouth-burning extra hot sauce over almost every meal I consumed and I mean EVERYTHING.
Despite this, 'chemo cravings' is actually the bodies way of expressing which nutrients it is lacking due to chemotherapy causing such lasting damage. Therefore, it is crucial that cancer patients maintain a healthy, well balanced diet ( But who can blame us for wanting to indulge in a share bag of chocolate once in a while?)
3) Weight Gain
Surprisingly, when speaking to friends about my journey this is the one they are most confused about! I guess this boils down to the stereotypical imagery of someone withered and rather underweight in a hospital bed- but for many patients, this is not the case.
When speaking with other cancer patients, it is apparent that many of us actually GAIN significant weight whilst of treatment predominantly due to variations of steroids. These can be used for actual treatment of the cancer itself and have also been found to reduce symptoms such as nausea and inflammation. BUT, and its a big but, many of these medications commonly prescribed such as Prednisolone and Dexamethasone cause rapid water weight gain which frustrates many of us. Not only have you got to fight a life threatening illness but now I can't even take any bald bikini pics for instagram? How rude.
Luckily, the water retention seems to come down after the initial large doses and extra weight is then easier to shed (Thank the lord). However regardless of steroidal prescription, many survivors also report weight gain due to lack of general activity associated with managing severe side affects.
4) Chemo Curls and Colour
Probably self explanatory from the title itself, but as shown on myself to the left chemotherapy for many patients makes their new hair follicle curly!
Before treatment, my hair essentially had no wave pattern to it what-so-ever, so it can be rather difficult adapting to a completely new hair routine. This new routine involves combatting frizz, new 'curly girl' products and defining curl clumps. Having said that, chemo curls is probably one of the more desirable side-effects, to myself anyway.
Besides curl pattern, a multitude of changes to hair can happen due to chemotherapy. One of the more notable changes being that of pigment/colour. Chemotherapy can in some cases, diminish the pigment within hair follicle- leaving perhaps a more dulled down version of someones previous virgin hair prior to cancer. This is also applicable to all types of body hair , many patients noticing an alternate pigment within eyebrows also.
5) Lingering Side-affects
This may seem obvious, but this is genuinely what I consider to be the thing that is least understood by friends and family regarding the longer term affects of cancer.
Typically, when someone finishes intense treatment, like I did last year, or if someone even finishes treatment entirely and rings the bell ( Which I'm hoping to be doing in November) , people assume this means everything is back to normal, this is far from the case.
General health typically isn't said to go back to average levels until two years after your final drop of chemotherapy. Along with general immunity and health levels being low, other health problems which come along after courses of chemotherapy include; Dental problems, Early menopause, Heart problems, Increased risk of other cancers, Infertility, Loss of taste, Lung disease, Nerve damage, mental health problems and Osteoporosis ( along with other general bone pain, TRUST ME ON THAT ONE. So, if you take one thing from this- never assume someone is a-okay just because chemotherapy is over.
6) Health Anxiety/ Fear of relapse
Unfortunately, this is extremely common amongst survivors and can be an extremely intrusive and detrimental for mental health recovery.
Obviously, health anxiety is expected from a life-threatening health issue of any sort. In terms of former cancer patients I know/have read about- this mainly occurs due to the high rates of relapse, which is stated by doctors during diagnosis.
For example, in Acute Lymphoblastic Leukaemia it is expected that 20% of patients relapse after achieving full remission. Patients are put into categories based of their likelihood of relapse, which in this particular cancer is based on age of admission
( the higher the age, the bigger risk of relapse) As well as which type of Cell cancer you were diagnosed with.
These rates although they seem positive, and vary from cancer to cancer, cause extreme anxiety and fear that every cough, lump and low energy, is the cancer relapsing. This therefore can lead to compulsive disorders in which anxiety flusters patients so-much-so that it takes over their thought process.
I think every survivor can agree, no matter how far into or past your treatment you are, it NEVER leaves the back of your mind.
7) It can create a completely new life/mindset
Despite the odds, a Cancer diagnosis has genuinely changed my entire attitude towards life. Although I would not wish this on my worst enemy. I, and many other patients, have experienced an awakening to the moments you spend with those you love, how you look after your body and most importantly how you chose to spend your time on earth.
The moments you feel your lowest are the times we tend to develop and appreciate prior normalities. Simple everyday things and experiences to everyone else, are yearned for by cancer patients whilst on treatment, making remission that much more enjoyable as nothing is craved more than a sense of normality.