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Living with Cancer 1
The idea of living with Cancer is generally understood as that time to have started when you are told on that fateful day ‘you have cancer’. For anyone who has experienced that, there are many possible reactions but overall it could be described as a big change in your life.
It is my experience while listening to many cancer stories that each patient did not contract or catch cancer as a result of attending your doctor or medical person. Your doctor however has the un-enviable job of after exhaustive tests etc, by a multitude of other medico’s who have analysed, tested and have passed back to your doctor to give you the bad news which could be and usually is understood to be the start of you living with Cancer.
As you can see, the patient had the Cancer before the doctor told them, and probably had Cancer before any symptoms appeared to warrant seeking medical attention in the first place. The patient was not aware of it, that is all and these stories hopefully will start a conversation of learning about living with cancer.
The only experience that most of us have in regards to Cancer before our diagnosis is hearing about other peoples experiences. Apart from ‘that won’t happen to me’, we only hear the language of ‘breast Cancer survivor’, ‘all clear’, ‘she won her fight…’, ‘what a survivor’, ‘you’ll beat it’.
As comforting and reassuring as these sayings are they do nothing to educate the patient. However, for those who are going through that living with cancer stage, new means of treatment are becoming available each day which brings hope and a better chance of living.
Living with Cancer 2
Living with Cancer is similar to living with anything else. We have our preconceived notions as to what they are. However with this illness we find that life is a great teacher if we are prepared to learn but with cancer there is no option. You will need to learn.
So! Living with Cancer could be stated from a patient’s perspective as ‘learning’ while living with Cancer.’
All along the journey the learning is possible and desirable, even during that period before diagnosis it is possible to learn; to lessen the shock if not for your self but for someone else.
The alternative to learning is to use the metaphors stated in the first article: ‘survivor’, ‘you’ll beat it’, etc. These metaphors do not uplift the patient. Don’t give them more strength to deal with the journey of living with Cancer day by day, hour by hour. What helps cancer patients and their carers to deal with the minute by minute journey is the life learnt experiences of how other Cancer patient’s who have dealt with their minute by minute problems while living with Cancer and are prepared to share in the understanding, compassion and accepting environment what they have learnt and to hear what others have learnt.
People living with Cancer want to be treated and accepted as being valued and who have something to contribute to the health of the whole community.
Living with Cancer 3
Those life learnt small experiences gathered along the Cancer journey could be as simple as keeping up your fluids by adding a small amount of lemon to the water to give it a better taste [that is if you can taste anything anymore] or buying an artificial moisture for a dry mouth etc. Perhaps it could be a parking spot somewhere near the Peter McCallum hospital, or a back rest for the car seat to ease the pain on the journey to your next appointment.
When organising the appointment to see the specialist in Melbourne, try for an appointment time of between 11.00 am to 3.00pm to give yourself time to go the distance from Bendigo to Melbourne including all the traffic hold-ups along the way.
If you have had no learning or understanding of Cancer before you were diagnosed you may not know what is most important and what is less important and even to what question to ask and how to understand the answers when they come.
The culture of going to the doctor is, for example: If you are diagnosed with diabetes you will ask, ‘what do I have to do to get past this?’ but if diagnosed with Cancer then it becomes ‘how long have I got to live?’
One is calm the other emotional.
If when diagnosed with Cancer the patient is ready [has some prior knowledge on the subject] and therefore can really hear their doctor, they will find a wealth of medical information and options for them to start their journey of living with Cancer.
Living with Cancer 4
Diagnosis of cancer will change your life. You will experience things you never thought possible. Your understanding of your self, your family and friends will reach new levels and some parts of your body you never took much notice of will become focal points.
If you thought that by being diagnosed with cancer was going to bring on loneliness you are wrong, because of the doctors, nurses, oncologists and other medical staff, the administrative staff and the Pathology and other medical procedure places are all staffed by friendly helpful people who care for each and every one who turns up for an appointment.
If a patient finds themselves in a medical life threatening situation the Ambos are on the scene, the Palliative care nurses are on the scene and the emergency dept’s at hospitals are all staffed with first class people who care. You may not get to know all their names but you will remember their friendly faces. Also, the other patients you will meet will be understanding and interested in your journey, as you will be in their’s. Being diagnosed with cancer and its subsequent journey will open to you many really fantastic people who have dedicated their working careers to help, understand and appreciate what you are going through. The group of people who will need your help and understanding are your old friends and the general public who, as yet, haven’t learnt not to be fearful of cancer; have not yet learnt how to talk to someone with cancer.
Hopefully, these ‘living with cancer’ articles will change that!
Living with Cancer 5
In recent years, as numbers of Cancer patients has increased local medical facilities have increased with better services and equipment, staffed by very skilled people. At the same time self help groups have sprung up, as well as educational programs helping to bridge the gap between all concerned. These educational programs have helped hundred’s of patients and their carers to grow their knowledge and understanding of the workings of their body and the cancer that effects them. They have also brought total strangers together in an atmosphere of learning and of how to move forward on their cancer journey. Without the proper knowledge about cancer it is easy to imagine all sorts of problems and twice as easy to come up with remedies.
Without the proper understanding about cancer the normal fight/flight idea springs into action with predictable outcomes. The different options open to deal with cancer in the Loddon area, especially in Bendigo at this time, means that everyone gets help, all are catered for, even though there are many different types of cancer. However, when writing this article it is my understanding that children with cancer are still sent to Melbourne for much of their treatment.
This being the fifth article, the idea of proper knowledge and proper understanding should have surfaced by now as the key to living with cancer, whether as a patient, a carer, a medic in what ever section of the system, and you, the average citizen who as yet may or may not have been touched directly or indirectly by cancer, it is time for all of us to start our own journey towards understanding by gaining the knowledge of cancer.
“Yes we can”
Living with Cancer 6
If you wanted to know about science you would talk to a scientist and if you wanted to know about outer space you would talk to an astronaut, especially one who has been to outer space. If you wanted to know about a library you would talk to a librarian but if you wanted to know about a book you would read it. The same thing applies to cancer. If you want to know about cancer and its treatment consult your doctor or specialist, but if you want to know about ‘living with cancer’ find some one with your type of cancer and start listening.
In Bendigo there are a few thousand people with cancer covering nearly all the different types available. They are a fund of information and nearly all would be happy to pass on their experiences to who ever has the time to listen.
I am sure that doctors and specialists would be of help in describing how to live with cancer, but cancer is a bit like outer space, you need the experience to appreciate it.
It is easy to say: find someone who is on this cancer journey and just listen. When you have been diagnosed with cancer you could feel that outer space might be a good place to be.
To be diagnosed, even though you have been doing tests and you have had that feeling in the centre of yourself, when it comes ‘Yes’ you have cancer; its four o’clock on Friday, by the time Monday comes you have lived the worst three days in your life. No amount of knowledge will help this, only understanding by someone who has been through this experience and who understands because of their journey. Words can not describe…
Please, just find someone who has been through this experience. They will help you.
Living with Cancer 7
Why wait? Start your journey!… Read something everyday about cancer. Become a store house of information, coming in and going out and gradually you will discover the new language that cancer people use when they talk to each other. It is not a language of winning or loosing, or fighting the battle, as these words are not helpful. There is a need to re-evaluate how we talk about cancer and you can start by informing yourself. A good way to start is to be a listener to people who are on the cancer journey. People with cancer who have been on this journey have generally lost a lot, but mostly the energy just to do normal things. They spend a lot of their time going to have treatment and then lots of time trying to get over the treatment, but without the treatment they will die. Most cancer patients have studied the cancer they have and they have examined in detail the treatment they are using to deal with their cancer. They accept the great wealth of knowledge that has built up over many years that doctors use to treat them and even if the side affects are sometimes horrific, the tried and true way is better than unsolicited advice no matter how well intentioned.
Don’t wait! Start your learning journey! Everyone knows someone who has cancer who can teach you how to listen, how to be a store house. Be patient and you will gradually discover you are learning in a new way and by doing so, you will help others which in the long run will include yourself.
Living with Cancer 8
Each person is unique and different and we all process information differently, but when ‘living’ with cancer the most important word is ‘living’ not cancer. Because the word living comes first this is where the emphasis starts. This is what attracts you to the celebrity person who has cancer and their story is splashed across the papers. If they have been on that cancer journey their language is how to give, how to love and how to live. We are attracted to their spirit and their presence. We hear ourselves saying, ‘I’ve never met a person like… aren’t they strong?
You can and you are. Most people on the ‘living with cancer journey’, celebrity or not, have asked themselves very deep questions that they would never have asked, if cancer had not knocked on their door. Their whole family to some extent are with them on this journey. It’s a journey of re-evaluating, changing priorities, dealing with each new discovery as they come, and re-establishing strong connections of love and understanding with family and friends and the extended family who are all those ‘living with your cancer’.
As a patient ‘living with cancer’, if you have a carer who understands, that is a great help, but if you don’t then join a cancer support group where you will meet many others who are on this journey, and you can learn from each other, support each other and laugh together about some of the funny things that have happened along the way.
Living with Cancer 9
Life with cancer with a carer you would think should be a breeze; you with the traumatic illness and the sometimes horrific-side effects of the treatment to concentrate on, while the carer does everything else. At a quick glance the patient in bed or on the couch, watching TV, reading a book, having little snacks now and again, drifting in and out of sleep while the carer keeps it all on track. Sounds good doesn’t?
That is what happens with most illness and yes there is some discomfort for a few days but then comes a period of regaining your strength, give a bit of cheek to those helpers and then it’s back to the wonderful world of outside and all your familiar activities. Life goes on!!
Until you have experienced cancer first hand, it is hard to comprehend anything other than what was just described because except for a cancer patient losing their beautiful head of hair, cancer patients don’t look much differently from what they were before diagnosed with cancer. They may have lost a bit of weight but in today’s world most would be envious of anyone loosing weight.
The fact that the cancer patient has lost weight also means they have usually lost the energy to be out and about doing normal things, and so you will see them less often and you learn that out of sight means out of mind which means the patient and carer live much more isolated than normal. As the cancer gets stronger and the duration of the illness continues, so the twosome spend ever increasing time in hospitals and other medical places.
Cancer dominates everything with no end in sight.
Living with Cancer 10
Although appearances project a calm exterior there is an inner turmoil bouncing between the unknown of the future with the day to day life decisions which include the particular treatment prescribed for you by your doctor. It is not so much the side effects of the treatment as nearly every decision has side effects, but it is the duration which one needs to endure with what appears to be no lessoning or removal of the affecting cancer. The struggle just to live is what we all endure but while living with cancer there are additional burdens that are physically draining. It takes a strong spirit to maintain that calm exterior coupled with the confidence of an accepting, understanding and compassionate group of people for a person who is living with cancer to see hope.
Statistics show that people with cancer who attend a support group live longer.
It sounds like a group in a group without any signs of identification to distinguish them until you join the group [those living with cancer] and then you can see them, especially in waiting rooms of the oncology dept or attending the emergency dept of hospitals, or doing jigsaw puzzles in the radiology section of the hospital. They are generally quiet, keep to themselves people who will return a welcome smile to any acknowledgment, and a friendly disposition to any contact. People living with cancer have generally come to terms with many of the hard questions of life that the rest of us haven’t yet thought of, let alone started to address.
Living with Cancer 11
The carer of some one living with cancer has been mentioned only a few times so far in this series of stories but don’t underestimate their input or over look the role they play in the successfulness of the journey. It is my experience that most carers do not have a medical background and are just as bewildered as to how and where this cancer came from, as any one else. However carers must be motivated by some inner energy to help their loved one, to be there to help them live their life at what ever level they want or can achieve. A person living with cancer needs to focus on dealing with their cancer and it’s treatment, but with an emphasis on rest, intake of foods [water and nourishment] while at the same time maintaining a mental balance of optimism and reality while the carer helps this process by doing everything else.
For most people at the beginning of the cancer journey they haven’t had any preparation for their new roles. As the patient, while dealing with an illness that may ultimately lead to their death, they still have the right though to do things that are not necessarily in their best interests, but they still want to be understood and accepted as a mature adult. A carer can add to and even help the successfulness of this journey but in no way can guarantee any remission of or elimination of the cancer. All a carer can do is give understanding, compassion and acceptance of the path the patient is prepared to or has to take. It our hope the these stories may help find a better understanding of the new roles.
Living with Cancer 12
As with carers, family members of someone living with cancer have their role to play on this journey also. The length of time that the family members have known the cancer patient generally means there is no rejection, unlike the wider community where a lack of understanding of what to say, knowing how to show compassion or to generally have a normal conversation because, of their own fear. It is my experience that the above situation is very wide spread in the community, not because the community wants it that way but due to the lack of knowledge and the seriousness of the illness there grows a fear of cancer which is reflected in how we deal with it.
This fear is manifested in many ways and is hard to overcome, especially as it is not a conscious decision but an unconscious reaction. There is also confusion in the mix because not all cancer patients look sick or even much different, except if they have lost their beautiful head of hair. It would take a very game or stupid person to use the hair loss as the basis of a compassionate conversation, which doesn’t leave much to talk about. It is at this point the separation [rejection] comes as we all have this idea that we must start a conversation and if we can’t because we don’t know where to start then best not come in contact, which leads to the isolation of the patient. There is another way which will lead to acceptance, understanding and compassion. Just LISTEN.
Living with Cancer 13
The journey of someone living with cancer has taught them new things about themselves that can only be learnt by experience. Even though members of families or even a carer are close, it is only the patient who knows, who really knows and is in a position to positively pass on to anyone who wants to know what that journey is really like.
And so, here is the answer to the structure of that conversation mentioned in the last story and how it should come from someone who want’s to communicate with another person living with cancer, should be.
Be a listener and let the cancer patient tell their story the way they want, when they want. Also listen for what is not being said and try to appreciate their inner strength which is on display. You will not need to start a conversation, which is just as well because people with cancer have a different language to you. Just show that you are really-willing, ready and will be patient to wait for when the time is right for them to talk. In amongst the expressions of how they feel there will be a genuineness of how you are and you will hear a gentleness that may not have been heard before. There is plenty of scope to join the conversation and if you do you will gain, the person living with the cancer will gain and the other members of your family will gain. One to give the lead means many to follow and many to follow means the sooner the answer is found. The duration of this illness while on the one hand gives time for a new treatment to be developed but on the other can be such a heavy burden.
Living with Cancer 14
The sweet and sour of the journey of living with cancer is the duration of the journey. The sweet is I am still here and while there is life there is hope. Hope, in a long duration, means a cure could be just around the corner. Maybe I could learn something that would make a difference, if not a cure, but would help to keep me here long enough for a cure if there is to be one.
‘Sour’ is the continuous and high level of treatment, pain and debilitating sickness, of nausea, vomiting which brings on the very deep tiredness and exhaustion that only a cancer patient experiences and can appreciate. Don’t get me wrong, the treatment can be stopped, the pain can be medicated and the effects of the sickness can be mitigated but that will bring on an outcome that is not wanted either. There is a fine line to walk and while the patient has the deciding say it is generally the doctor who is the specialist whose expertise is used and relied on. As any budding chief would know, there needs to be a balance between the sweet and sour to give the meal the right taste and so it is with living with cancer. There needs to be a balance in treatment to have an effective and positive quality of life. There is a balance to pain with the right type and amount of medication administered against the side-effects and there is a balance of between the patients activities verses their exhaustion.
Each person living with cancer must walk this line and a carer or family member if they are to be of assistance to their patient needs to be understanding, compassionate and accepting of how they mix the two.
Living with Cancer 15
I can’t write from the perspective of a parent of a child living with Cancer because I have not experienced this situation myself. I invite anyone who has to write to me with their story c/o of this paper or the address in the back of this book. What I have written in previous stories are experiences, gained personally and through support groups so let’s continue with another.
Don’t assume anything!!
Living with Cancer is in the detail, the small and seemingly unimportant snippets of information, that in the life before Cancer, were discarded without a second thought. That nagging pain in your back can be dismissed as a recurring pain that usually goes away by itself, or that headache that comes and goes depending on the stress and strain of life. Sometimes they can be hidden behind the tiredness of older age or the acceptance that physical functions decline as years go by.
As with these and other symptoms we experience we assume they are just part of life so we don’t generally check them out, but with living with Cancer and facing it’s effects, every opportunity needs investigation.
One of the best ways to investigate is by becoming involved with other people who are living with Cancer and listening to their stories and learning from their experiences, and of-course a visit to your doctor is a must.
While checking some of the world wide support groups web sites and especially the chat rooms we have discovered a lot of helpful hints. As mentioned previously I heard that people who join a support group will live longer.
Living with Cancer 16
Fear is one thing people living with Cancer need to overcome and confusion is another. Everyone has their Cancer story about someone they know who has or had Cancer where they have seen first hand the Cancer journey be it long or short and which has left it’s impression on them.
To those close to someone living with Cancer it can have a most profound fearful effect on them.
But for the patient confusion has it’s beginnings when after many exhaustive tests have happened and your doctor says those fateful words, “you have Cancer,” research results show that only a very small amount of information is then absorbed by the patient as the fear of Cancer comes to the surface in disbelief. Suddenly panic not able to cope and then a shut down, happens. It is our experience that the next questions asked is, “how long have I got?” This is an important question and should be asked, but to whom and when is more important.
Living with Cancer recognises and even accepts that the journey will come to an end, but it is what happens along the way and the quality of the time spent along the way that is important- no matter whether short, medium or long.
As stated in the last story: People who join a support group live longer and somewhere else, “people die for the lack of knowledge.”
Stay calm and be alert! Great things are happening in research and each one of us can play our part whether a patient, a carer or a member of the general public. Be informed. Tell your story.
Living with Cancer 17
Fear is an inbuilt but confusion is something we do to ourselves.
We can control, modify, limit and even use our fear as a force for change and eventually growth. However confusion which is the hearing many ideas but not knowing which to follow, can only be overcome by a determined investigation of the subject for yourself and in the case of Cancer this learnt knowledge linked to an experienced doctor should result in the best outcome we can have. Sadly though, we humans have other attributes we need to overcome and one of them is a firm conviction that what ever it maybe it will not happen to us! As it is not going to happen to us why take precisions, why investigate the subject [of Cancer] beforehand, in readiness of the day; well it won’t happen to me!
And so! When that day, that fateful day does come and you hear those words ‘you have Cancer’ it is a shock, it is an unbelievable shock and it is always at a bad time.
Unprepared we join the queue, that ever lengthening queue at the oncology dept, the radiology dept and as the journey goes on then to the emergency dept of the nearest hospital with a sickness that is difficult to describe and unimaginable until experienced. Don’t misjudge what I am saying: I am not saying that if we had investigated before diagnosed that the road/journey would not be rocky. What I am saying is forewarned is forearmed which may not change the destination but could make a smoother road.
Living with Cancer 18
As mentioned previously getting a diagnosis of Cancer is a big change in your life. Not only a change of movement but for seeing as well, and for hearing to some extent also. When you join the queue you see what you didn’t notice before and you gradually start to hear and every now and again there is a ‘hello.. fancy meeting you here’. I had no idea you had joined us. How long have you been coming here?’ About 2 months now, what about you?’ My journey started 6 months ago. As my treatment is different to yours I don’t usually come on this day but I have changed my appointment to today because tomorrow is the local Cancer support meeting and I don’t want to miss that because I meet with many new friends who are also on this Cancer journey. You should come along, it won’t cost you anything and they have a good library of Cancer books and maybe some one will be there who has the same type of Cancer that you have and you can share your experiences, you’ll like them.
Ok! I will try, but this treatment has its effects on me the next day. Yes it does but is has its effect on the cancer at the same time. The Oncologist has access to many new drugs to fight Cancer compared to a few years ago and while some are used on a trial basis with the expertise of the Oncologist each patient is given the very best treatment. ‘How is your treatment going?’
Living with Cancer 19
Well the nurses in the oncology dept who give it are as kind and gentle as they can possibly be and after they have finally connected you to the medication with several tries to find the right vein you can finally go to sleep for a couple of hours only to be woken up with it’s time to go home!
Now where in your experience can you go to a medical appointment and have a two hour sleep? Only at Oncology, but be aware; when you go home after the treatment, sleep will probably overtake you again. It would be a good idea to have a carer to drive you home as well. Being tired to the point of exhaustion is generally the rule not the exception with living with Cancer as both the Cancer as well as the treatment drains your reservoirs of energy that rest does not replenish. Another aspect of this tiredness is that it sneaks up on you without you noticing it. Some early signs are, you become aware you haven’t done or gone anywhere for a few days, the house is a bit of a mess, you haven’t eaten and you don’t think of food as you use to.
You just want to sleep!
Having rested you feel a little better, but then it is time to go back and start the treatment all over again and I can write this and you can read it, but until you actually experience it, that is, the loss of who you thought you were and how strong; that inner strength we all think we have, then that experience is still in front of you.
It is my hope, and everyone who has Cancer, that you never experience this but if you do you would do well to prepare yourself to the best of your ability for this journey. You would not attempted a long car journey with out looking at a road map before leaving. Be prepared!
Living with Cancer 20
By now you would be aware that the beginning of this journey of living with Cancer can be quite an upheaval not only to you but your family but there is one kind of upheaval that is unique to Cancer. To illustrate this story we need to back track a bit to the culture of dealing with sickness in the past. You know, the one where you go to the doctor, the doctor examines, finds the problem, writes a prescription and usually one to two weeks later, with maybe a spell in bed with some physical discomforts but just around the corner you regain your strength and you get your life back again.
The journey with cancer starts with a visit to the doctor, the doctor orders extensive tests which introduces you to the pathology dept, to x-ray dept’s and maybe a couple of others which you need to take time off from work, sit in over crowded waiting rooms, to finally return two or three weeks later to visit the doctor who has those fateful words, “You have Cancer”, and an appointment is made for you to visit a specialist, it could be a surgeon or Oncologist and if you are lucky they are local otherwise it is off to Melbourne with all the trauma of travel, and time off work. Hopefully you will have a partner to help you understand what is said and to help you think of the questions you could or should ask so you can start to take control of this diagnosis and understand where it has come from.
Time has passed, you still have not regained your strength and your haven’t got your life back yet. Cancer is different to other illnesses.
This is happening to a handful of local people every week, and this is only the beginning.
Living with Cancer 21
In the past few articles we have been leading to a situation of co-operation as a definite course of action in living with cancer. The first mentioned was connecting your knowledge with that of the experienced doctor which should result in the best medical outcome.
The second point of co-operation is becoming involved with a support group where everyone’s experiences, no matter how small or seemingly insignificant they may appear, can be exchanged in an atmosphere of non-judgement and no one telling anyone else what to do or giving anyone advice.
The third point is to find others who are living with Cancer who have the same Cancer as you and learn as much as you can especially the appropriate questions you need to ask and to whom you need to ask these questions.
The fourth are the organizations, like the Cancer Council, the Leukaemia Foundation with specific types of Cancer.
I have listed these four points first because you will need a good grounding of information before you go to the fifth which is the Internet, where you will find a huge amount in many different forms and types of information.
Everything ranging from research papers to talk rooms full of people from all over the world sharing their experiences, telling their stories and generally supporting each other in ways that is specific to those living with Cancer.
Living with Cancer 22
So far we have dealt with the medical aspects of living with Cancer but there is the social aspect which plays a very special part in this journey. You have been diagnosed with Cancer, you have started your treatment, you have re-arranged your work schedule, you may have even applied for sick leave for those young enough to still be working, or in the case of a retired person you have put in place what you think is necessary for what is to follow.
The ability to drop in on a friend, have a cup of tea and chat for a while for those of us in the later years is an activity we take for granted, it is enjoyable and yet we don’t really see the special role it plays in our wellbeing until we loose the strength because of that tiredness spoken of in earlier articles, over comes us and we are restricted to lying on the couch and barely able to stay awake to watch TV.
If you are alone then you are really alone but if you have a partner-come carer then they are the only person you come in contact with except for the medicos of your treatment.
A carer is someone who although they have been the partner for years, taking the same things for granted with no experience of the Cancer journey and even feel traumatized by what is happening to their loved one, can struggle to make sense of what is happening.
Find a support group where you will meet others in the same position and journey together.
Living with Cancer 23
Up to now we have not mentioned money, not because it is not important but because to deal with Cancer it is my experience that there needs to be a balance between the important life aspects, and money will not buy you a cure.
Don’t get me wrong, it is necessary but self knowledge, the questions to ask, to whom they should be asked, the selection of the Cancer specialist you choose, the distance you need to travel for treatment and the relationship you have with your carer or friends who are going to help you later down the track are more important than money.
However money has its place while living with Cancer and the first is organising your home finances if and when you leave or loose your job and secondly becoming involved with fund raising for research etc.
Home finance is an individual thing and only you can decide or investigate what is to be done or who to contact for help. However fund raising by the individual is commendable but it is much more effective if the individuals come together with the wider community; like the Relay for life or the Shave for a cure or lately a Mo-vember, or a bandana day etc get more people involved and raise a lot of money for Cancer research. There are many ways of fund raising and dealing with money than mentioned here but as these stories are focussed on the beginning of and actually living with Cancer the self education and self empowerment will bring you a better outcome initially and facilitate a smoother journey further down the track.
Living with Cancer 24
This self education and self empowerment covers many aspects of the journey of living with Cancer and the relationship with your helpers must come some where near to the top of the list.
For most of our lives we have had the freedom to go and do as we wish with no personal help or support but with the exhaustion and tiredness brought on by Cancer or its treatment all that freedom could disappear. If this happens your relationship with your helpers and supporters shifts from a casual to a dependency support which while being necessary the total dependency is very difficult to deal with, especially as this situation could go on for months to years. Not only the patient but the helpers or carers who also have very little experience in such a close continuous dependency of some one else who could have been their equal for years, or even a child caring for a parent who has Cancer, or a husband caring for his partner when for all the previous years the situation was reversed.
My experience shows that it is the small decisions not the big ones that cause most problems. For a carer, it is the making of decisions that the patient usually or should make for them selves that could be seen by the patient as not only losing their health by Cancer but their ability and right to choose for them selves. A patient loosing their humanity is such a central aspect of being human. The carer should be there to assist the patient to achieve what ever they wish without censuring or controlling what they do or want to do. Self education is needed by all concerned.
Living with Cancer 25
Trying to decide which aspect of your life is the most important and therefore deserves your immediate attention is determined and controlled now by your Cancer and it’s treatment and not the way it was before you started living with cancer.
Money takes on a different value as does sex, burning the midnight oil, travelling far from home and other activities which were once part of the web of life we did without thinking about but just enjoyed as a necessity.
Necessity or not, with the exhaustion comes tiredness, the unknown, unpredictable ness about the severe sickness can then come upon you suddenly which not only makes these activities unpleasant but puts in doubt any future necessities.
As a result of the lessoning of activities patient and carer are in each others company for more and more time of each day putting extra pressure on the relationship and when this is added to the long duration of the illness of months to years and added to the gradual decline in the family financial situation, this can bring pressures, sometimes that are too great to manage.
This sounds bad and as bad as it sounds there is help to be found through other cancer patients and their carers. By look at the positive, encouraging the positive, developing the positive, and being open to hearing how others have dealt with this very difficult part of the journey of living with Cancer.
Self education is needed by all concerned but don’t become self focused, is my experience as it will not lead to the best outcome of living with Cancer.
Living with Cancer 26
As I sat here this morning thinking of what the next story should be about up came an email from one of the members of our support group with a message of some trivia or other which acts as a positive distraction as well as some humour and now needs a reply of a similar content which will boost their moral to face another day.
While living with Cancer it is the little things that make a difference, the little things that were missed or not seen before or not understood the importance of. Who would think that a stay at home people like us could one day be talking to people all over the world about our journey of living with cancer on a regular basis as if we are old friends and would miss their cheerful comments if for some reason communication stopped. To maintain a conversation on the internet is the same as a face to face conversation where both parties are to be respected, accepted, valued and cherished while both parties strive despite their health difficulties to offer the other the best that they can.
By now that you have a very broad knowledge of the Cancer could be a good time to look deeper on the internet for those who offer the best that they can and together with the exchange of experiences with a multitude of people you will become empowered with confidence and an enthusiasm that you have probably not experienced for some time.
Be careful, remember to maintain that balance and continue your relationship with your specialist who has helped you to get this far.
Living with Cancer 27
Now that the internet has joined this journey of living with Cancer let’s look a little closer.
It is our experience that living with cancer is a process and part of the process includes the internet, it could be a important part but it is not the whole. We have found very good information and received some heartening, encouragement, but without access to professional interpretation and medical application the Internet could lead to unfulfilled expectations, resulting in confusion and frustration.
We need to remember to focus on what is important which is the ‘living with Cancer’ and put everything associated with that in its place of importance and of its effectiveness to achieve that.
If you have been following these living with cancer stories you would know by now that you need to overcome your fear, to control or limit the confusion, maintain that relationship with your professional medical person and continue your close relationship with as many other Cancer patients especially those with the same type of Cancer that you have. There are probably other aspects of importance in this journey and each person living with Cancer needs to prioritize for themselves. The word ‘living’ is what the journey is all about and the quality of that living is influenced by what you know, what you can find out and how it is applied to you with the correct timing, the right application and with the confidence of the right outcome.
People die for the lack of knowledge.
Living with Cancer 28
Mention has been made in many of these living with Cancer stories about the desirability of a close relationship with other people with the type of Cancer that you have and it is now a good time to further explore the idea.
It is our experience that when you join that living with cancer group one major effect is your life changes especially the focal point which is, where you spend most of your time; and as a result you will spend more time with other people than the people you have in the past. This being so you new acquaintances should be selected for the benefits to you health wise. As much as personality, good looks, position and even wealth are attractive, when living with Cancer what you need is people who understand, really understand because they know how you feel, they know probably more than you because they have been there and know what is still in front of you, with some good tips for you and how you could deal with your journey of living with Cancer.
It is these little tips you get that give you not only the benefit but also the human closeness, someone who cares about you even though they are total strangers. Living with Cancer is a journey that is not like any other or any that could be imagined. It has all the dramas of what is possible in life and discovering to what heights we as humans can rise to. However the main tip that is passed on to all who ask is ‘do everything in your power not to walk through that one way door but if it does happen, remember ‘forewarned is forearmed’.
Living with Cancer 29
Now that we have opened the subject of close relationship and its effect on those who are living with Cancer let’s see what other aspects can be illustrated.
One big surprise that I experienced while accompanying some one who was living with cancer was the process of character change, of an openness and a no nonsense approach to life that is sought by many adults but generally not attained.
This process can be seen in the young where as a result of the cancer they have and the possibility that death is inevitable, they acknowledge the fact and with a maturity that amazes most adults they conduct them selves with such poise and understanding that calm and acceptance surrounds them. It is as if the fear and confusion that was spoken of in earlier stories is overcome and a new focus enables the young patient to see what is really important.
Which brings me to the surprise when my patient one day said that the only good side of the Cancer was the closeness we now enjoy because of the joint journey of living with Cancer for the last five years had drawn us closer than we had ever been. It came as a shock because I witnessed the distress and pain first hand and yet the relationship was more a focal point and not the distress and pain. I can also say that with out the detail, other people we know who are living with Cancer have also experienced similar changes to their relationships. It is easier to become friends, it is easier to find understanding and acceptance when associating with other people who are living with Cancer.
Living with Cancer 30
Another aspect of close relationships and there effects on those who are living with Cancer is the inability of some long time friend’s who cannot deal with the big ‘C’ word [Cancer] and these friends just close their eyes to what is happening, with the result that the closeness disappears. Those who are living with Cancer have no choice but to go on alone and with the usual lack of energy due to the Cancer and also some times from the treatment and a lack of real understanding of not only the Cancer but what to say to these friends to encourage and empower them to communicate, either new friends are made or isolation sets in.
In a future story of living with Cancer we will start to list some possible communication starters for overcoming this tragic situation but for now let us start with the most important question in regards to holding long term relationships together for the mutual benefit.
To my knowledge Cancer is not contagious. Again! It is my understanding that you can become infected with other illness through body fluids but I have not heard any medico state that you can become infected with Cancer this way.
Surely a long term friend is hard to find these days and deserves to be maintained no matter how strong the level of fear of that big ‘C’ word.
It is my hope, now and in the future, that these stories may help you to have a better knowledge of Cancer; a knowledge that will enable both you and the person living with Cancer to move forward together; to be able to talk the talk and walk the walk of all who are living with Cancer.
Living with Cancer 31
If you have been with us on this journey of living with Cancer for some time now I hope you may have noticed how the cancer patient while dealing with the Cancer and treatment and all its intrigues must also deal will all the other things in life at the same time. These other things in life that healthy people take for granted like; going for a drive to visit a friend and socialize late into the night, eat what ever we want, get drunk if we want, have a active sex life, have a job, play a sport, the list goes on but some of those living with Cancer find these normal activities are beyond them. As you can imagine being excluded from these and other activities would lead to isolation, no communication and loneliness. How do you think you would deal with this?
However in our case a close relative provided an internet connected computer and when better health conditions prevailed communication with other people living with Cancer world wide was possible. Although this form of communication is not the face to face type as long as there is respect and acceptance, the connection can be of value to both parties despite the health difficulties.
As stated in an earlier story, the internet can be a source of knowledge on Cancer but you will need that specialist to interpret and implement what ever is discovered and remember to maintain your relationship with your specialist who has helped you to get this far. If you are living with Cancer and don’t have a specialist, then get one!
Living with Cancer 32
Yes! If you are living with Cancer and you don’t have a specialist, then get one. Don’t just think that it will happen by itself or that the medico system will just turn up by itself.
When you get your specialist, listen to what they say; try to understand, take notes and talk to other people who are also living with cancer who will help you to understand.
The journey of living with Cancer; if it could be reduced to one word it could be stated as understanding.
It is the understanding or knowledge that the doctor has that the patient was diagnosed of the Cancer.
It is the understanding about the Cancer and it’s treatment that will enable each patient to travel that Cancer road.
It is the understanding or research that scientists spend lifetimes to find the answers, those elusive answers.
It is the understanding or your ability to communicate that is crucial to your living with Cancer, and it is the understanding and patience you have with family and friends who will love and care for you while you travel that Cancer road.
It is the understanding by the general public of just how wide spread Cancer is in the whole community that will lead to the proper re-sourcing of the research which leads to better treatment and maybe the eradication of this scourge on humanity.
It is the collective understanding that will lead to the best outcome for all concerned on this journey of living with Cancer.
Living with Cancer 33
Understanding comes from experiencing and from learning. In our case the living with Cancer was an experiencing journey with little to no knowledge before diagnosis. Five years down the track it is hard to recall with any accuracy of just what we did know before diagnosis with the exception of the stories that we had heard of other people who had Cancer ie family members or high profile people. [Hollywood stars etc]
Five years of this Cancer journey has helped us to focus on the living with Cancer, hopefully not to the exclusion of all else, but to focus on the learning aspect which when combined with the experiencing helps to build understanding.
However don’t miss understand what I am saying. I am only talking about the journey of living with Cancer, not curing or removing the cancer; only the journey and even then there is no guarantee that in your case or your friends or families case that the journey will be the way you want it.
The journey can be cruel not only to the patient but also to those loved ones who are caring and helping where ever possible, and I understand that to try and learn while experiencing what only a carer of someone who is living with Cancer knows, is very difficult and emotionally draining. However by staying focused appears preferable at the moment to returning to the whirlpool of experiencing only.
Living with Cancer 34
Let’s have a look at this word understanding from a different yet historical view point.
When it comes to understanding our health and dealing with each illness that comes along in the past we would go off to our doctor who would ask us a few questions, maybe examine here or there; take a pulse, look in the mouth etc, write a prescription and in a week or two when the problem had gone away we had forgotten that we had even gone to the doctor.
When we got Cancer that process needed up dating.
The first thing is the patient should become more involved, listen very closely to what the doctor is saying by trying to overcome that [Cancer] fear spoken of in an earlier story.
If you are diagnosed with Cancer your prescription will be to attend a specialist and the process will definitely go well beyond a week or two and you will never forget the day you went to the doctor as the problem sadly won’t go away; hence living with Cancer.
In some cases the Cancer won’t go away but with the advance of research and with new drugs it is possible to control it’s growth, as in our case, giving the patient not only a life but time for more research for a future.
The second thing is the patient and carer should become associated with other people who are living with Cancer so that they can learn from each other, ie the little things that will make life easier. By showing friendship you will receive friendship which will help you to grow that little bit stronger.
Living with Cancer 35
An other aspect of understanding is communication.
If you were a poor communicator before you were diagnosed with Cancer you won’t become a good one over night even though it would be in your best interests to do so.
However don’t be down hearted as a whole new world is about to be opened to you and communications will only be one of the possibilities you will need to face.
As stated in an earlier stories overcoming the shock, overcoming the fear and coming to terms with the necessary treatment and the tiredness and complete lack of strength and energy all have their particular tests but the changing of poor communicating habits that have worked or appeared to work will take real strength of character.
The focus is to recognise the need for a change. Most of us are driven by results not advice and until we see the good results of good or better communications we don’t think it applies to us. Or she’ll be all right, I communicate OK.
Oh I feel sick. When will this go away?
It may never go away but the journey could/might be smoother depending on what you do and how well it works for you.
You can influence that outcome!!
The power of the human mind to overcome adversity is all about us. However it probably won’t get rid of the Cancer but could control it or hold it in check while you get on with your life of living with Cancer.
Living with Cancer 36
One aspect of communication to influence understanding is laughter/ humour, and for some living with Cancer either as a patient or a carer, laughter can sometimes be all that is left when sadness, loneliness, hopelessness and a multitude of other emotions associated with Cancer drains you to acceptance. Laughter is an instant pick me up that can be regurgitated and bring a smile to your face, that inner face and leaves a warm feeling that great things can come, great adversities can be over come, could even lead to a calm and inner peace. This may appear to someone who has not been diagnosed with Cancer to be a bit far fetched but as I stated in an earlier story, it is the little things that make a difference. It is difficult to put into words that when we lose the resilience to over come the loss of strength and energy, to be sick for weeks at a time to eventually come to the understanding that this is our lot, laughter can be as welcome as a cold drink of water on a hot day or a smile from a friend or a listening ear who makes no judgement but removes that loneliness and deflects the sadness.
It is our experience that when first diagnosed with Cancer there is nothing to laugh about but as time goes by and you get to the stage of living with Cancer and you are mixing with others on the same journey, funny stories are exchanged and out comes a flood of pent up joy /humour that we all have whether diagnosed with Cancer or not.
Laughter signifies a maturing of understanding of living with Cancer.
Living with Cancer 37
Carer and spouse of 35 years, I suggested to him that he should get his PSA checked to make sure every thing in that area was OK. He was reluctant!!! Like any bloke he thought his general health was OK but eventually gave in and visited the GP for a PSA test. The reluctant Dr complied and over a period of 3 years and 3 tests with no feed back as to the results of these tests and he not understanding their importance didn’t ask. It wasn’t until he was taken to the emergency dept of the hospital that he had reason to be concerned about the prostate. The Dr on duty said he would like to examine him further.
I [the patient] knew what was coming. Even though he told me that it could just be an enlarged prostate, I knew then that I was in trouble. All sorts of things started going through my mind. I didn’t know if I should start preparing for the end, or just go on living my life. I was given several options for treatment. We both looked at each other dumbfounded and couldn’t answer. We then asked the Dr, which treatment did he think and we were guided by his comments.
I am now looking forward to the end of this treatment and am optimistic of a good result. I know I haven’t told her, but I am grateful for everything she does and for being there for me. I only wish I had taken more notice of her when she tried to tell me I needed to do something about a PSA check up, and that I hadn’t been so blasé about it when I did.
When someone so close to you is diagnosed with cancer your whole world is up ended. I could not believe it was true and that is was happening to us.
Living with Cancer 38
In public domain like your Medi-Bank Private office you can pick up pamphlets on an array of health subjects. They are free! Just go in and take one! I did take one the other day and I would like to quote from it. The pamphlet was not about Cancer but about “Safer Health Care”, and in the middle of the pamphlet there were 10 Safer Health tips.
The following 10 tips can assist you to become more active in your health care. We will highlight the heading only:
- Be actively involved in your own health care.
- Speak up if you have any questions or concerns.
- Learn more about your condition or treatment..
- Keep a list of all the medicines you are taking.
- Make sure you understand the medicines you are taking.
- Make sure you get the results of any test or procedure.
The next 4 tips are for people who are in hospital etc.
- Talk to your doctor or other health care professional about your options if you need to go into hospital, etc
- Make sure you understand what will happen if you need surgery or a procedure.
- Make sure you, your doctor and your surgeon all agree on exactly what will be done during the operation.
- Before you leave hospital, ask you doctor or other Health Care professional to explain the treatment plan you will use at home.
These 10 tips have been adapted from the US Agency for Heath Care Research and Quality patient facts sheets.
Living with Cancer 39
An other public domain is seminars put on by different arms of the Cancer fraternity.
You can get the information as to when and where they are held from the numerous news letters they put out and generally in the news letters there are either a phone number to call to register or a web site to do the same plus a multitude of information to help you. Most times (but not all) these seminars are in Melbourne which means planning is needed but I am sure you can deal with that.
I have attended many such seminars over the years and on the day it can be quite inspiring, and yes, the information can be over whelming. It is not possible to take it all in and retain everything that is important so I have learnt to summarise a presentation of 60 minutes down to half a dozen main points and write them down and also listen very carefully to the questions from the floor and write down the answers in away I can remember later. Also there are hand outs sometimes that make it easier, but you should make notes to yourself to understand the information on the handouts. It is a big task, so don’t take it lightly, your life could depend on it, or someone else’s life could hang in the balance.
If you have been following these little stories you would know that two heads are better than one especially if one is on treatment for their Cancer. In the group of Cancer patients who are on treatment, for example, Chemotherapy; it is common for some of these patients to refer to themselves as having ‘Cemo brain’ which refers to their forgetfulness, hence; if you want to remember then write it down.
Living with Cancer 40
To continue the theme of attending Seminars, the very first Seminar I and my partner attended after diagnosis of Cancer was ‘the living with Cancer’ sessions here in Bendigo.
At that time we attended the 2 hour sessions, one per week on a Tuesday for six weeks where we gradually started to learn about Cancer. Those sessions were attended by other people (ten altogether) who were beginning their learning journey at the same time.
The two social workers/nurses who facilitated the sessions were ever so gentle and over the six weeks they brought us to such an awareness that the class decided to continue this learning and the being together that we started the Bendigo Cancer support group.
That was 6 years ago and the original 10 people has now grown to over 100 on the mailing list.
Also, the living with Cancer sessions are still being offered to the general public by the same people.
There are one class sessions up to 4 class sessions, but they are designed to cater to the needs of people dealing with Cancer in someway or other.
In future stories we will highlight others.
As you can see there are many levels you can tap into to learn about Cancer. It all depends what you want but all who are offering this information say: “It is in your best interests to understand what this Cancer is all about, what it is doing to you, how others are dealing with the day to day effects, and how some level of well-being can be achieved again!!
Living with Cancer 41
To continue the theme of seminars with a final aspect. If the seminar is local then generally as long as it is dealing with Cancer then it could be worth while attending because even if you don’t learn anything new at least you will meet other people who are dealing with Cancer in your local area. Another reason is to get to know better some of the people (nurses Doctors and administrative people) who have been helping, maybe behind the scene but are just as important as those you come in contact with.
I mentioned in an earlier story that people living with Cancer use a different language to the general public while talking to each other and over the years I have noticed that the effective seminars or sessions are run by people who have learnt this new language.
Be patient!! Listen and learn and you will learn this new language. It is not a language of winning or losing, or fighting the battle, as these words are not helpful. If they have been on that Cancer journey their language is how to give, how to love, and how to live. As stated in story 8 ‘We are attracted to the spirit and their presence, but only after we have re-evaluated our language to hear what they say’.
As we close this story on the subject of seminars I want to say again that the more you can find out about cancer, it’s treatment, it’s side effects, what treatment might come in the future, etc at the end of the day it comes down to you, the Cancer and how you live with yourself and those with you on the journey.
Living with Cancer 42
Living with cancer as we have discovered over the last 41 stories can vary from simple to complex, to overcoming the fear and confusion to dealing with the pain to the tiredness, all have their particular effect on the person who is living with Cancer, but I have left until last (but with cancer there is no last) the hardest side effect that cancer can dish out.
It is hard to give it a name so I will leave naming it until the end.
It is that state of mind that we all have to some extent, of independence, doing for one’ self, not wanting to be a burden on any one, even going without because of not wanting to be beholden to anyone else.
In the real world we overcome to some extent this situation because we can bargain (if you do this I will do that) because we have our health, but most times it is not said but just done as both parties are equal and therefore it is just good friendship.
But when Cancer comes along this changes because in the eyes of at least one, there is no equality anymore. However this dependence leading to unequalness in the relationship is a gradual thing, and is felt first by the Cancer patient who probably by now is in no fit state to do anything about it.
So! The patient not only has Cancer and its side effects and the treatment, but now has the debilitation bordering on the humiliation of needing to depend on others for some of the simplest things. Not easy!!
Living with Cancer 43
This state of the cancer patient’s dependency on others for the simplest of things just to navigate each day, can be humiliating in its self but when trying to break out of this dependency with out the physical strength to achieve that, the result can be devastating for all concerned.
This aspect of living with Cancer is never talked about out side of the home but never the less its influence is felt.
Like nearly everything else to do with Cancer good communication is the way forward but with no history of this type of communication and the subject itself borders with the other taboo subjects of loss of that beautiful head of hair; any conversation on these two subjects can spiral out of control very easily.
One way to have good communications is to practice in small ways to get a feel of it. This may sound childish, especially to a couple who have been together for years before diagnosis of Cancer but with the only outcome that is acceptable is a ‘successful result’ then practice, it is.
The second and complimentary strategy to put in place is the idea of stop, start again concept.
This works on the principle that both patient and carer have not been in their new roles before and so they are both learning how to navigate and as such will sometimes take the wrong turn or say the wrong thing at the wrong time, but by using the stop start again concept, allows each to go back and start again without causing up set in the other and without blame.
The right way then will have time to be found with success as the outcome.
Living with Cancer 44
This stop start again concept mentioned in the last story is generally understood to be applied to the conversations between people but it also has its application in other aspects of life.
When Cancer patients reach that stage of exhaustion but not completely debilitated this human attribute of independence is still as strong as ever. However by applying the stop start again concept the carer can help facilitate their patient to continue to do for them selves to the level they can achieve. What is needed is good communication skills, to recognise the humanity of the other and the patients to hold it all together.
Knowing one’s physical capacity while living with Cancer is difficult to gauge not only for the patient but also for the carer. Remember the patient and carer have only just recently inherited their role and are hopefully trying to balance everything.
In the meantime it seems that the patient tends to over estimate their capabilities while the carer does the opposite. This period of time of achieving that balance can be not only a very difficult process but can sometimes take a long time. It is not as if finding that balance is all you have on your mind because at this stage of the Cancer journey confusion reigns supreme in nearly every aspect of your life.
Oh! For the lazy, hazy days of summer! Would certainly be preferable to this! Just a minute, it is more difficult for a Cancer patient to keep cool in summer, than it is to keep warm in winter. Or is that the other way?
Living with Cancer 45
In 1994 at the age of 66, I was diagnosed with cancer in my left breast, resulting in a lumpectomy and removal of some lymph nodes. In 1999, due to my family history (my great grandmother died of breast cancer, my mother died of breast cancer at 52, and her sister died of ovarian cancer at 49) my oncologist referred me to Peter MacCallum Familial Centre in Melbourne for genetic testing. This confirmed I carried a fault in the BRCA2 Breast Gene. Of my five siblings, my younger sister also carries the fault and subsequently had her ovaries removed to reduce her risk of cancer. She attends Perter Mac for regular check-ups. My two sons also inherited the BRCA2 fault, as did their two daughters. All of these family members have regular check-ups also. Sadly I lost a son to cancer in 2007, aged 55.
In 2003 my cancer returned at which time I had a bi-lateral mastectomy. My family is one of Peter Mac’s research families. My husband and family have always been very supportive as have my GP and staff at Peter Mac. It has bee a long 15 years.
I am 81 years, in reasonable health, and lead a busy daily life.
Apart from my family, my main interest is our cancer support group which has played a big part in my life for the past 14 years.
My reason for writing this?
I urge ALL women to be vigilant with their health and know their family history. If your story resembles mine- do something about it. First stop is your GP!
Living with Cancer 46
In 1994 at the age of 66, I was first diagnosed with Cancer in my left breast which with some lymph nodes was removed. In 1999 because of my family history [my great-grandmother died of breast cancer, my mother at 52 died of breast cancer. My aunt died of Ovarian cancer at 49] my Oncologist referred me to Peter Mac Callum … Centre in Melbourne for genetic testing.
This confirmed that I carried a fault in the Brac2 breast Gene giving me a 60-80% chance of developing breast and/or ovarian cancer. Of my five siblings, my younger sister carried the faulty gene and she subsequently had her Ovaries removed to reduce her risk and now attends risk management clinics for regular breast checks etc.
My sister and I are fourth generation with this fault. Of our children, some carry the fault and some not and of the next generation my grandchildren some are carriers and of my great-granddaughters they are at this time two young for testing as the test age is over eighteen.
In 2003 my cancer returned at which time I had a bi-lateral mastectomy. I have regular check-ups at Peter Mac cancer clinic. My family is one of their research families.
Sadly we lost one of our sons to cancer in 2007 at the age of 55.
This has been the worst part o my cancer journey.
I am now 81 in reasonable health, and lead a busy life with my husband of 60 years. Apart from my family, my main interest is our cancer support group which has been a big part of my life now for 14 years. I urge all women to be vigilant with their health and if your story resembles mine, do something about it. First stop is your GP!
Living with Cancer 47
As stated in the story 39 different arms of the Cancer fraternity have information that will help you. For example the ‘Loddon Mallee Integrated Cancer service have launched an information pamphlet for newly diagnosed Cancer patients.
They state that ‘each’ person has individual reaction and response when told they have cancer’, especially if you have been diagnosed on a Friday afternoon with no one to talk to. A whole 3 days with feeling like an eternity with all sorts of ideas about what is going to happen to you and no friendly face to help you.
Well! There are lots of friendly people who not only will understand what you are going through because they themselves have trod that path, but they will answer if you call any of the numbers listed in the pamphlet and they will help you.
You may be asking: What is Cancer, can it be cured, where can I get information about Cancer, is there anyone in my local area I can talk to about cancer, are there local cancer support groups and how can I tell my family, friends, employers that I have cancer.
In this pamphlet there is a list of names of the Loddon Mallee Support Groups and contacts- and are contactable at any reasonable hour.
Visit our Cancer Support Website or speak to a cancer nurse on the Cancer Council hotline 13 11 20. It is easier to become friends, is easier to find understanding and acceptance when associating with other people who are living with Cancer.
Living with Cancer 48
Another arm of the Cancer fraternity is the Bendigo Cancer support Group. Let us have a look at their pamphlet.
Their aim and purpose is ‘To facilitate open communication and personal experiences to enable participants to create the environment to be able to share cancer experiences together as a patient or carer.
A big emphasis is ‘We do not give advice and we do not make judgements,’ and one reason for this is please note; We are not professionals or experts in any field. We are ordinary people sharing personal experiences and knowledge only.
Benefits from the group:
There is always someone else who understand what you are going through. There is always some one that wants to hear you because they were heard at the group as they walked the walk and talked the talk as a patient and carer.
People meet others that have the same type of cancer and they can share and compare experiences of what have worked for them.
Apart from what the support can do for you, you will bring your experiences to the group. This helps others for no matter how big or small your contribution, every bit of information is valuable to the group. This group pools the collective knowledge, contacts and experience so that everyone in the group can make progress in dealing with the cancer or caring for those we love.
This group provides understanding and strength for you and the challenges you face.
Living with Cancer 49
In the case of an incurable progressive disease, the emotional strain on family members starts well before they become carers, as there is a period of uncertainty, confusion and worry to negotiate . What follows, in our case is a desperate sense of futility; no matter what I or anyone else does, no matter how hard you try, or how tenderly you look after your loved one, it seems nothing can stop the disease, it means the grieving starts early; as the weeks and months go on so much is lost that can never be regained.
The hard part of being a carer is ‘feeling their pain’ or ‘in other words seeing them suffer’. Other ‘hard to take times’, were the self-centeredness repetition of stories, hard of hearing the responsibility of knowing when to contact the hospital, the hormonal sweats, one minute being too hot and taking a cardigan off to the next being cold and putting it back on.
…there are several areas of angst that I am sure every carer feels: Carer burn out, the monetary crises that besets everyone and the anticipated grief, while at the same time trying to put on a good positive upbeat and uncomplaining attitude. I wonder who is most affected by depression from this diseases, that carer or the patient.
Being a carer is very hard. Physically caring got very hard very quickly. We learned on the run for virtually every day presented a new challenge. I was seized by panic at the time.
It’s been a life experience I’ll never forget, never wish to relive and wouldn’t wish on my worst enemy, because unless you’ve lived it you don’t really know what it is like.
Living with Cancer 50
I was about learning something that you know only to well: being a carer is very hard. Physical caring for my partner got hard very quickly,. We had to learn new skills of lifting, showering, dressing and feeding. We learned on the run, for virtually every day presented a new challenge.
It is my belief the nature of the carers journey leads to a cumulative effects on stress levels which is sometimes suppressed.
The effort to go out to make small purchases was enormous. Checklist included oxygen cylinders, oxygen conserving device, wheelchair, Roho cushion, mask as well as nasal prongs, morphine, Ventolin, mobile phone in case of breakdown, it seemed endless.
For a doctor’s appointment at 11.00, we needed to make a start at 7.30. The care was constant. While for a couple of months we were able to leave the patient at home alone for about half an hour, as time went on, we all felt increasing discomfort leaving the patient alone and made sure someone was there all the time. At this late stage three of us provide care, if we were to remain sane.
I wasn’t coping very well with the long hours being confined to the house and I finally approached palliative care for respite. This was offered as either moving the patient to a hospital for the week or alternatively they would send a carer to the house once a week for the afternoon.
Living with Cancer 51
Stories of Palliative Care
Care for husband with Cancer
The palliative care service working in tandem with our doctor gave me the confidence to see this thing through to its inevitable conclusion. Nothing was too much trouble for them and they gave me advice any hour of the day or night. When I was able to collect my thoughts later on, I had this tremendous feeling of satisfaction that I had been able to do this for the man I loved due mainly to the confidence Palliate care gave me.
God bless Palliative Care.
Care for husband with prostate Cancer
Consideration and support given to me during that difficult time by the whole palliative care team could never be overstated. They also encouraged us to join the Cancer self-help support group and friends from there were a great comfort after my husband’s death. The loving friendship formed with my volunteers continue. If I’m able to bring comfort and peace to any client, my work for palliative care will have been worth while and I feel I have repaid some of the commitment shown to me.
Carer for brother with bowel cancer
The help of the family, palliative Care team, family doctor and the local nursing community helped my brother die in the manner he wanted, by taking control of the last few weeks of his life. We certainly had some pretty amazing times together in those last precious weeks.
Living with Cancer 52
Carer of mother with Renal Cancer
I need to stress that caring for mum has been one of the most rewarding thing I have ever done- it was a beautiful experience and one that I will value and cherish always. It has made the grieving journey harder in ways, but I am left with the most wonderful memories of my mother whom I got to know in a way that was much deeper than I could ever have imagined. It was a privilege and a joy, and I hope that many others may take this path and reap the same rewards.
I feel that every factor every experience, no matter how difficult all added to the total experience and enriched me. I could talk about the negative things, but these seem out of place without balancing them with the positive- and the positive far outweighs the negative.
Care for my wife.
I have the deepest admiration for carer’s for I now know what they have to cope with in many cases for much longer periods of time than I had to. Few people ask to be care’s in the sense in which you use the word. But being a carer is one of the greatest gifts we can give to those we love- even though we wish it were a gift we never had to give.
Carer for father with prostate Cancer
Many people today on hearing about palliative care think of it as full of sadness- and there is this element of it- but actually it’s also holds many light moments of joy and pleasure in meeting relatives, sharing a joke- recipes… I did my palliative care training after my dad died and I am continuing as a palliative carer.
Living with Cancer 53
Carer for my wife with MND.
How do we convey to those outside the world of cancer the physical, mental, financial, emotional and moral mountains that carers have to climb. You might feel that carers’ don’t get the publicity they deserve and you would be right.
Getting publicity in the media however is a highly competitive endeavour. We have to deal with the media the way it is- ‘fairly tough’ – but so it is for people with Cancer fairly tough and it is tough for carers also, and as it is said; “When it gets tough the tough get going.”
The formula for success is to start talking about your cancer. Tell your story, don’t hold back, you will feel better and because you tell your story others will be empowered to tell their story.
If you we diagnosed a few years ago there did not appear to you that there were many others on this journey but today that has all changed. The oncology dept now has three extra doctors with all the backup staff they need and to get a seat in the waiting room sometimes can be quite an ordeal. It is my guess that well over 5000 people in Bendigo with cancer will blow out to unimaginable levels putting strain on people who can hardly bear the cancer let alone everything else.
Cancer people who have been on this journey know the road and its pot holes. The way forward is to improve community understanding by talking about what you have experienced, you may be surprised who hears you, so that carers work and patients needs are not invisible behind the walls of their homes.
Living with Cancer 54
Hello, my name is Sheilah and someone has just issued me with a challenge to tell my story in no more that 250 words.
This could be fun depending on how you look at it, the story I will tell commences in 1985, in late July that year I became aware of a peculiar happening to my left breast, following on from a visit to the GP who was also the surgeon and the biopsy he did, I was diagnosed with Breast cancer and by the end of August I was lopsided. I do remember that when I was told what the problem was that my main thought was how am I going to tell my husband and my children, I had this guilty feeling that it was my fault.
Since then I have become more balanced loosing the second breast in 1991 and for that effort going through chemo and radiotherapy, I survived all that even managing to hang on to my hair though I think it probably became about two thirds of its mass. In 1997 I was visited again and now there is less of my large intestine than I was born with, the surgery went well and I was told the results was a Dukes A!!! I have not found out yet who the Dukes is but it meant I did not have any follow up treatment.
I now have no gall bladder, all the interesting female parts are completely gone so I can not understand after all the missing bits how come I am still over weight.
What I think is that you should never put off checking anything that you think may be unusual as speed is one of the ingredients to survival. All this started 23 years ago, so take heart as I am still here, though, from time to time since I think it was all just a bit rough.
Living with Cancer 55
In an earlier story the idea of fight/flight as a first reaction to a diagnosis of a bad news was mentioned and while the general opinion is that women deal with this better than men, however when you stop and listen to the stories that is everyone’s stories, you will find that is not the case.
It is my experience when my wife and I first joined this cancer journey we knew nothing about cancer and actually nothing about the different departments in a hospital. The last time we were both involved in hospitals of any duration was nearly 40 years ago when our children were born, but even then it was my wife who was in the hospital and I visited her 3 times a day.
Sure, we have had our visits to the doctor and even had some over nights in hospital in that 40 years but when you get outside again with the normal things one does who remembers the visit to the hospital.
Both men and women are part of the fight/flight system as a first reaction after diagnosis. What is different between men and women whether diagnosed or not is that women talk about their health whereas men do not. It is not just health that women talk about. They talk about everything but men are selective of what they talk about and selective to whom the talk.
Both women and men have to deal with what ever bad news comes their way and they will either stand and fight – for information on how to effectively deal with this- or – flight; there’s nothing wrong with me- that doesn’t mean I actually have it; I am sure that isn’t a big deal. Oh! don’t let the pain get any worse.
Living with Cancer 56
We all have rights, despite illness
The ‘PINK LADY’
People with cancer and their families are still the people they have always been, with the same right to be treated with respect and as unique individuals.
Sometimes in the bustle of treatment and care, these rights can be forgotten or pushed aside.
The following Bill of rights is a guide of the patient, their family and friends.
Bill of rights for Cancer and Chronically ill patients.
I have the right to be told the truth about my disease.
I have the right to feel bad if I receive bad news.
I have the right to talk to my doctor and my family about my cancer and I have the right to not talk about it if I choose.
The fact that I am sick does not give others the right to make decisions for me.
I have the right to be treated as a person and not merely as an object.
I have the right to think of other things besides my cancer, I do not have to allow cancer to control every detail of my life.
I have the right to ask others for help with things I cannot do for myself, within reason.
I have the right to hope- whether for a full cure, a longer life, or a happier life here and now.
It’s OK to sometimes be angry around people I love. My anger does not mean I have stopped loving them.
I have the right to receive the best possible pain relief.
I have the right to cope with my cancer in my own way, and my family has the right to cope with it in theirs. Our ways may be different, but that’s OK.
Bill of rights for family members and friends.
I have the right to enjoy my own good health without feeling guilty.
It’s not my own fault that someone I love has cancer.
I have the right to get outside help for the person with cancer if I cannot manage all of the responsibilities of home care myself.
I have the right to get help for myself, even if others in my family choose not to get help.
I have the right to choose who I will talk to about cancer. If other people feel hurt because I do not want to answer all of their questions, it is not my fault.
Even if I am a child, I have the right to know what is going on in the family.
I have the right to be told the truth about cancer in words I can understand.
I do not always have to agree with someone just because he or she has cancer.
Sickness does not stop someone from being a real person.
I have the right to feel what I feel now, not what someone else says I should feel.
I have the right to look after my own needs, even if they do not seem as great as those of the person with cancer. I may take time out from cancer without feeling disloyal.
It’s not what we give, but what we share, for the gift without the giver is bare.
Wishing you all good health.
Isobel belongs to this cancer support group. Well done Isobel