This was written by me july 2016 when I finished my 6th Chemo
About myself-I am a 56 year old working woman happily married with one
son
What this write up is about
This write up is about my cancer journey.I am certainly not a good writer .But I have just penned my experience and my emotional state during this phase.If it can help people I would only be too happy.I want people to be more aware about their body and give at most priority to health
My cancer was totally asymptomatic but cancer is a very silent disease so knowing your body and being aware of your body is very important. Even a little change could possibly be something that’s happening
The scariest part of cancer is the unknown, but we can fight the unknown. More than anything we have to change our view that “cancer is a death sentence.”
Phase leading up to the diagnosis
While I am penning this I have just completed my 6th chemo cycle. I may have a long way to go before I complete the full treatment but I am glad that I have gone through 6 cycles with grit and positivity.
My Cancer diagnosis happened almost by accident. It was 14thFeb and I was getting all set to leave for Srilanka with my friends a week later.
It was a Sunday, Valentine’s day. I was having a slight discomfort in my back and had a little vomiting. I blamed the vomiting on my previous day’s snacks which I had at a mall and left it at that. By afternoon the pain in the back increased which made me reach out to my family Doctor. He prescribed some medicines which made me feel better. I went to work next day but by afternoon the pain cropped up again. I was having constipation. Doctor suggested a sonography to rule out any gall bladder related issue.
So I went for a sonography on 16th. The sonography technician was not very happy with the results and suggested a CT scan for better clarity. She did not spell out the problem. I have always enjoyed peak Health for all the 55 years, and had an active life style. I have never been ill or taken many risks where my health was concerned. So I was not too sure what to make out of the results and was a bit worried but never believed it could be something serious
So I went for a CT scan on the same day. For CT scan you are asked to drink a bottle full of a coloured liquid tasting weird and then you lie down on a narrow table, and lay your hands above your head. The table slides into the "doughnut hole." You have to lie still when the scanning process is on They inject a dye through an IV, and it just feels warm, as it moves through the body.
I didn’t go to see the doctor with the report perhaps out of fear of having to hear some bad news. My hubby collected the report and went to see my family doctor. Family doctor suggested that it could be cancer and I may have to undergo a uterus operation urgently.
Me, my hubby and my son were all dumbfounded on hearing the news as this was certainly totally, unexpected. I felt swamped because Cancer has such scary connotations. Me and my hubby both broke down and it was our son who managed to pacify us.
Our next step was to plan for the operation and also to visit a top oncologist for a proper line of treatment. Based on the suggestion of my company CFO, we decided to see a top oncologist, Dr. Sachin Almel, in Hinduja.
With the help of my brother in law, we were lucky to get an appointment for the very next day. Next day me and my hubby and my sister in law went to see the oncologist.When we spoke to him he suggested that we repeat the test and also do some additional tests at Hinduja, so that the diagnosis was perfect. This sounded ok.
So I went through a Biopsy wherein the test was conducted after administering anesthesia. The room had quite a few people and the procedure took about 30 minutes. They had to take several samples. Luckily it was not as scary as I thought it would be.
I also went through a pet scan after 2 days.A Positron Emission Tomography(PET) scan is an imaging test that allows the doctor to check for disease in your body .The purpose of a PET scan is to identify areas of high metabolic activity .Cancer causes high metabolic activity.
For the PET scan ,I had to be on empty stomach.We reached the hospital at around 9 Am.the process is very similar to CT scan.you are asked to drink a bottle of liquid and then they take you for scan to a room.You need to lie quietly without moving or talking.During the process an injection is also given which suddenly makes your body warm.When all the necessary images have been recorded ,you just slide out of the machine.They ask you to wait and in case they have any doubts about any image they may redo the scanning for few more minutes
We were told that the reports should be available after 5 days.The days when we awaited the results must have been the most anxious days of our life, filled with dread, fear and at the same time hoping against hope that the earlier diagnosis would be wrong.
Feb 26th, a day that will be etched in my memory. When we went to collect the report and visit the oncologist, I was shattered when he confirmed that I was suffering from Lymphoma- Cancer of the Lymphatic glands.
From the time he pronounced the "C" word ,i honestly dint hear much of what eh was saying
Somehow, I gathered my strength and knocked myself back to my senses. May be my fears were a bit eased when doctor said that it is treatable.The Doctor suggested that I need to go through 6 chemo therapy sessions each with a gap of 21 days with the first chemo to start immediately. He ruled out the need for any immediate surgery which was some relief.
When we hear the three earth shattering words “You have Cancer “our world turns upside down. That moment and those words are the dividing line between life before cancer and life after cancer.
Cancer- the dreaded “C” word is almost always equated with death and that makes this disease most scary. The very name of Cancer pushes the entire family into a state of gloom and mourning.
Despite the ground-breaking medical advancements that have been made in cancer treatment, cancer still remains a scary disease to accept emotionally, because it is still so commonly associated with lot of suffering, and the possibility of death. So many questions start to crop up in your mind as to what kind of cancer do I have? How much has it spread? Can my cancer be treated? What is the chance that my cancer can be cured? Etc.
For the next few days we continued to be in state of shock, not knowing what to do, how to react.
Perhaps my hubby was more hit than me. It was more of disbelief followed by shock. With my health record and my life style I should have been the last candidate for this disease. I had shown no symptoms at all. It was absolutely asymptomatic cancer. So it was truly difficult for us to accept this dreaded reality.
All through this it was my son who remained calm and positive and gave me the much needed strength & confidence. He was a pillar of strength and took the whole thing philosophically and with a lot of positivity.
When my colleagues got to hear of this they were shell shocked and there was utter disbelief in their minds.many did not know how to react and some of them broke down.
Soon I realized I should accept and come to terms with the fact and have to move forward with strength and I realised that that being in a depressed stage or being in self-pity will not take me anywhere. I realised that I could not control the disease but had the choice to control my reactions. I had the choice to impact my thought process.I decided to fight Cancer with grace, dignity and a positive attitude.
We all know at same level that life is finite. But somehow we never think of it as frequently or as concretely as after the diagnosis of cancer.
I recognized mortality in a way I had never done before.
More than wondering if I would survive the disease and the treatment, I was worried if I would be the same person as before, would there be any permanent threat to my way of life, would there be any permanent damages etc.
To keep the things moving in the right direction, we immediately appointed a yoga teacher to come home every day. I knew yoga and had been practicing on and off. But to be regular and focused, I knew I needed someone to come home and make me do it every day. So the practice of doing yoga and meditation started immediately.
Suggestions for others
At first, you need some time to adjust to the fact that you have cancer. It is emotionally a very hard time. But don’t let the panic button hit you and take you on a downward spiral.
And be practical and understand that this can happen to anyone. This has not happened because you have done something wrong to your body.Your emotional state can make it harder to take in and understand and collate all the medical information shared by the doctor. Grieving, feeling sadness, fear, anger, or going through crying spells – is a common reaction to learning you have cancer.But these feelings should not last for a long time and you need to snap out of such feelings.
Never once let go of your positive attitude because that is half the battle won. Be positive because that is the greatest weapon you have.At the same time don’t be ignorant and say that there is nothing wrong. There are so many people making an effort to make you come out of the dreaded disease. So it is important to follow your doctor’s instruction well.
It’s up to you to decide if and when you want to discuss your cancer diagnosis with friends and relatives. You need not go out of the way to inform everyone but it is better to be frank with people who are close to you .Keeping cancer a secret can lead to more stress at a time when you need the support of others. So reach out to close people and discuss. It is not an illness that you need to be ashamed of.
Cancer treatment can be very expensive and many many unexpected financial burdens can arise as a result of a cancer diagnosis. Take into account the cost of treatment, medicines, traveling for treatment etc. and be prepared. If you are a friend of a cancer patient, allow the patient some space to reconcile to the shock of the diagnosis. Do some small act of kindness .Stay in touch but accept the fact that they may not always be in a mood to talk or share their feelings. Respect their feelings.
People dealing with cancer may wish to talk about it at times, but they do not want the focus to be on their cancer all the time.
All cancer patients should be prepared for physical changes. Cancer treatment methods like surgery, chemotherapy and radiation can bring about many changes in your body including complete loss of hair. Surgery may cause scarring and disfigurement.
The Treatment Phase
Chemotherapy did bring with it a lot of fear and the experiences of other people that I had read on the net were shocking .But I had to tell myself that I will face it bravely.
My first chemo was scheduled for March 1st at 12.30 pm. I had an early lunch and post lunch, I reached the hospital well in time. I was taken to the chemo room. I was told that, I would have to go through bone marrow test before starting chemo. I was given a local anesthesia, as bone marrow aspiration, in particular, can cause brief, but sharp, pain. I was fully awake during the procedure, but the aspiration site was numbed to reduce pain.The area where the doctor would insert the needle is marked and cleaned. The bone marrow fluid (aspirate) and tissue sample (biopsy) were collected from the top ridge of the back of a hipbone. Then that place was bandaged and I was told to wear the bandage and keep it dry for 24 hours.The process was painful in spite of anesthesia, as the needle goes into the bone to collect the marrow sample.
After the Bone marrow test, the first test dose of chemo was administered to check for any allergic reactions. I did react to the medicine and had rashes all over my face. So anti allergens were given and once the rashes subsided, chemo was started. The entire process of injecting the chemo medicine through IV lasted for 8 hours. Since it was well past 12 o’clock in the night, I had to stay put at the hospital and to be discharged the next day.
My chemo reaction started the very next day. Though I had done a lot of research on the net, I really didn’t know what to expect. In chemo, there is no one-size-fits-all story. Each one’s experience in different and each one has a different story to tell.I suffered from nausea, metallic taste in the month, severe mouth ulcer and constipation. The constipation led to very severe Cramps in my stomach.
The cramps became worse after the 7th day. Finally on the 10th day after chemo, it was so unbearable that I was just holding my stomach and sitting up all the time.I had applied my own logic that this too was just a chemo reaction and that it would go away. Hence I did not mention the severity of the pain to my hubby. My son was away in Kashmir. Finally On 11th day I could take it no more and had to be rushed to the hospital. I had to be rushed to the emergency ward on a wheel chair.The doctors conducted some tests and we were told that I was having neutropenia where the WBC counts drop drastically. Because of this I had contracted stomach infection.
Later I learnt that some level of neutropenia occurs in about half of the people with cancer who are receiving chemotherapy. It is a common side effect of chemo therapy .Mine was worse as my count dropped very drastically. When neutrophil levels begin to drop it depends on the type or dose of chemotherapy. Neutrophil counts generally start to drop about a week after each round of chemo. The count then starts to rise again as the bone marrow resumes normal production of neutrophils.
I truly wish my doctor had pre warned me or at least given me some idea about this and that I had been told about neutropenia. I would have been better prepared for it and would not have delayed getting admitted to the hospital.
I was hospitalised for 6 days and was administered antibiotics and injection to boost the blood count. The injections were given on the stomach. While in the hospital, I was almost quarantined and no visitors were allowed because you are most likely to catch infections.After the discharge form the hospital, I slowly limped back to near normalcy and got back to having a little bit of energy.
The chemo had robbed me of my sleep and gifted me with extreme fatigue. Chemo fatigue or Chemo lethargy drains you emotionally, mentally and physically. It is tiredness which cannot be explained. You are too tired to feel tired.
I was unable to eat normal food as I had metal taste in my mouth and nausea. But since I had to have energy for next chemo, I used to eat whatever and whenever I could.After 21 days, it was time for my second chemo. The reaction to the second chemo was more or less the same. Mouth ulcer, loss of appetite and more fatigue.
This time again on the 8th day after chemo, I had abdominal cramps. I was devoid of all energy and had no strength to even stand. Since we had a fair idea from the first chemo experience, we rushed to the hospital the next day. It was the usual story. I was again hospitalised for 5 days and was discharged after the WBC Count started returning to normal.
My third chemo was no different. The only saving grace was that we were well prepared and the minute I felt weak, I got myself admitted to the hospital. In fact this time the doctor had given a booster dose before chemo to avoid neutropenia but to no avail. Every time the count would drop around the 8th day, and would start returning to normal only around the 17th day. Those 10 days were truly tough.
With each chemo though, my side reactions like mouth ulcer, nausea was slightly better but my fatigue got worse because of the cumulative chemo effect. The lethargy was frightening. Just the idea of having to walk a few steps made me scared. Many things we take for granted became difficult or impossible for me to manage on my own. From having a shower, handling utensils, to getting dressed, I had to depend on someone’s help.
I am not an individual who is easily brought to tears or feel depressed over difficult situations in my life. However watching my life turn from that of a super active independent person to depending on people for the smallest and simplest of activities in less than 2 months was very tough to digest but I accepted this phase and carried on. When I was admitted to the hospital after the 4th chemo for neutropenia, I had to be given blood transfusion as my hemoglobin count had hit rock bottom.
I started to develop severe flatulence and developed bladder control issues. Bladder incontinence can be very embarrassing and tough to manage.
After my 4th chemo, a pet scan was again done to check the progress .The prognosis was good and the doctor was happy with the report.My 5th and 6th chemo produced the same reactions. Both the times it involved blood transfusion and injections to boost the blood count and all types of antibiotics. My fatigue had gone from bad to worse. I felt drained of all energy. In addition, I developed severe joint pain and extreme sensitivity of teeth. This caused unbearable pain in my teeth whenever I would bite anything especially sweet or anything even moderately cold.
Whenever I suffered from this neutropenia problem, I would rush to the emergency ward of Hinduja hospital. But it was a huge task to get a room in Hinduja. So invariably I would be in emergency ward for more than 6 or 7 hours. As luck would have it, there would be no bed in the emergency ward also and I would have to sit on a wheelchair for hours and hours with an IV on my arm. This was truly a very painful process.
At the end of 6 chemo's, I have lost count of the number of injections that I have taken. They number at least 70 . I don’t remember how many times I have been pricked for blood test. I don’t remember how many times I have had an IV for pushing antibiotics, chemo medicines. I do not know when my energy level will be back to normal. I have no idea as to when my joint pain would go, when my teeth sensitivity and pain would reduce, when I will have my complete strength back or when my hair would grow back. But I am truly thankful that I am alive and I am thankful that I can walk, talk, eat & laugh.
My suggestions for others
If you are a working professional, take time away from work. Health should be the main priority at this point. Be prepared for physical changes
Chemo therapy can have many upsetting side reactions which may include affecting the bowel movements , bowel and bladder incontinence, body pain, fatigue, and sensory changes.
It is important to follow a proper diet. Choose a healthy diet consisting of a variety of food. There may be days when you have no appetite or you may not be in a mood to eat anything. But make it a point to eat small meals. It is very necessary to have lots of fluid intake so that the body can rid itself of waste and toxins.You have to ensure that you get adequate rest in order to help manage the mental stress and fatigue which may result due to treatment.
Chemo therapy can make you very very susceptible to infections. So it is essential to maintain high levels of hygiene.Maintaining a healthy life style is very important and this also improves the energy level.
It is important to do something that you enjoy. Exercise helps the mind and body to be active. You may not have the energy to exercise every day but it is important to know that even if you are experiencing fatigue, even light exercise can help you feel better. Yoga and meditation and other relaxation methods can help to a great extent.
Don’t feel embarrassed to seek help. Chemo fatigue can make you incapable of doing even the smallest task on your own. So accept the fact that you may be dependable on others for help and seek help when needed. Please don’t shy away from seeking any type of help. Please don’t hesitate to speak up your problems.
Encourage your family to accept help if it's needed. Cancer diagnosis affects the entire family and adds a great deal of stress, especially to the closest family members.Above all, stay positive and cheerful and never give up hope at any point of time.
If you are a care giver to a cancer patient, ensure that you get adequate rest, sleep and try to stay away from tension. You need to be in your best of mental and physical health in order to help the patient
Post-treatment Phase
My chemo journey was truly tough but manageable. My yoga practice and meditation on days when I had the strength, made it better to cope. My inner strength helped me to pull through these six cycles.
I have been a voracious reader and this habit of mine helped me a great deal and during this period I must have read not less than 30 books including fiction, non-fiction, and spiritual.
More than anything I had a great support system at home. My hubby & my son were the greatest support & strength. My hubby had to do a lot of running around, had to forgo sleep on many nights. He was mentally & physically tired. My son was always there to cheer me, motivate me & keep me in good humour. I know it was incredibly tough for both of them but never once did they complain.
I was extremely lucky that I have a fantastic network of friends and colleagues. My colleagues were wonderful and they met with me regularly to ensure work worries didn’t hinder my recovery. My company was most supportive and granted me long leave .
My family and friends were so attentive and concerned and so kind during that time. The whole process of learning that so many people were there for me when I was at my most vulnerable self was so very emotional.
I went through the entire treatment with as much positivity as I could as I believe that attitude really shapes everything. Never once did I allow myself to go into self-pity. Infact I stopped thinking about my illness as something very critical.
I had lost all my hair on my head, my eye brows, and my eye lashes. I truly looked strange something like an alien. But every time l looked into the mirror, I looked at what I had and not what I lost. I learnt to make fun of my looks.
I took one day at a time. Every day I remembered my blessings as a mantra and thanked God for all the blessings. I was fortunate that I could afford the treatment, fortunate that I had a great medical team to take care of me. I was immensely blessed and lucky to have a great support system. I was lucky to have such great friends and so many well-wishers. The illness was critical but atleast I had contracted this illness at a time when my son was grown up. My hubby and my son could devote time for me.
Most of all I had the prayers, blessings & good wishes of so many countless people. I don’t even remember the count of people who have prayed for my recovery.I am immensely thankful to each and every one who has been a part of this journey in one way or other.
Life after chemo is different. The body has been through an enormous assault & recovery is truly time taking. You can’t just just bounce back. Chemo changes your life in many ways & that lasts well after the chemo is over.
But with regular routine exercise and rest, I am sure things will be much better.
Having this disease has changed me in some ways. I was always a person who valued time and who cherished memories. After cancer, I value time much more. Cancer has made me re-examine my life choices and has motivated me to make life style changes. My priorities have shifted and I will have more of ‘ME TIME’. I want to learn many new skills, travel more and enjoy each day of my life and celebrate life.
Suggestions
Once the treatment is over you may be in remission stage or may be completely cured but it is certain that you will undergo a whole set of emotions. Please know that there is no right or wrong way to feel. Evey cancer survivor’s experience is different ,will be different – it all depends on your personality, personal circumstances, the type of cancer, the type of treatment and the type of support system you have had. It is an emotional journey
Infact at times you will be scared to be happy in case the cancer comes back. This thought is very natural. But don’t live in a constant fear. Fear can keep you focussed on the past. Take each day as it comes. Don’t expect life to be 100% normal immediately. It will take time. But try and start the normal routine.
Let us accept that Life is unpredictable. It is a reality that none of us will live for ever. Disease or no disease, I could be gone tomorrow and this is true for all of us .None of us know what life has in store for us.
So cancer or no cancer, live life with no regrets. Learn from mistakes. Don’t wish for any change or to have anything differently. Everything in life happens for a reason and it has got us where we are today. Enjoy life and all that it has to offer. Enjoy your family, friends your job, enjoy nature, go places. Do what makes you happy. Our life today is a gift. The present where we must live in. past is gone and future is a dream.
Believe me, each one of us has the inner strength courage and determination to face any challenges in life. We just need to tap our mind, tweak our attitude and look at every thing with a positive thought. We can fear something but that fear should not define us.
It is so rightly said “You never know how strong you are until being strong is the only choice you have.”
With regard to diet try to follow a healthy diet and keep your body alkaline .It is said that cancer cells are more active in an acidic body.Eat lot of raw vegetables and fresh fruits. Try to include nuts in your daily diet
Most of all keep your mind active and positive
PS:- After 7 months of being away from work, I resumed my duties as a cancer survivor. Here I should take a minute to speak about my first day at work after cancer. The welcome I got from my colleagues was so overwhelming. It was truly a humbling experience. The specially decorated cabin, the welcome signs in the office, the standing ovation when I entered were truly touching and moved me to tears.
The emotions and feelings cannot be expressed in words. I could feel the genuine love and warmth of each and every one present in the office.Certainly my days at the office are not like before. I do get tired mentally and physically. I do feel like quitting my job and staying at home.
There is numbness in the hands and feet due to injured nerves. My joints still ache a lot.Recovering from cancer treatment isn't just about your body — it's also about healing your mind.
I am also waiting for my final test and the results. I do not know what the reports will tell.Even after a clean report, there is always a fear of cancer recurrence. It is a long long journey.
Today I am not be where I want to be, but I am certainly not where I used to be.
I have started doing regular exercise, changed my diet; my eating pattern. I have learnt reiki and have completed my second level.
I heal myself through reiki and try and stick to my yoga practice at least 3 days a week.Perhaps this illness has made me slightly more spiritual, I enjoy meditation. I want to be more creative and take up painting when my health permits.
For the present, rather than worrying about things that are beyond my control, I want to use my energy to focus on wellness and what I can do now to stay as healthy as possible, stay cheerful and celebrate life.
