Experience with TMH

Since name of Tata is associated with Tata Memorial Hospital anybody would expect efficiency and discipline. Unfortunately it is far from true. I have seen that the Doctors are experts, their labs are well equipped, their diagnosis is good but the administration is hopeless. Patients are not treated as human beings leave about treating them as patient. Nurses and ward boys barring a few, literally shout at the patients. In the Day-Care unit, hardly one or two out of 6-7 nurses would talk politely and smile, rest would frown and treat you as if you are an intruder. Patients have to keep standing for hours in the OPD because there are very few seats provided compared to the number of patients visiting. It appears from behaviour of support staff that they are under huge stress. It may be because of large number of patients per staff and crammed accommodation, because if the space around a person is reduced stress sets in. Agreed that the population of cancer patients is so high and increasing day by day but if administration is innovative they could find solutions. In my four months experience I have seen that the situation was only going from bad to worse.
Waiting for your turn in the OPD is a big ordeal. If one is comfortable standing and waiting for his turn with occasional shouts from ward boys you can be sure that the chemo therapy is yet to be administered to that patient. I have waited for five hours in various queues on my fist visit that too with empty stomach. Here only cancer in the patient is nicely treated but human in the patient is thoroughly ill-treated.
I find the greatest advantage in getting treatment from such typical Govt like hospitals is that your ego is completely thrashed. You feel like you are a beggar begging for restoration of your health that too after paying heavy amount. You are made to forget your so called position in the society. I feel, next time I go to any Govt department I would prefer to squat down on the floor even though a seat is offered to me - just out of injected humility. Great isn’t it ! …I am close to achieving Nirvana – positive side of a torture.

Stress Management

In my case I completely rule out stress due to fear of death, as a matter of fact neither I have slightest fear of death nor I have any worry about what will happen to my family. I have done my best to ensure that my family will be able to lead normal life in my absence. After all human beings have limited control over the destiny and things should be left to the Almighty beyond your capacities. Moreover mine is low grade NHL so I am sure that even if I had not treated this no major problems could have appeared in next 3-4 years. I feel that the reasons for stress pertain to [1] physical pain and weakness, [2] incapacity to lead normal life and [3] emotional state of mind which fluctuate from time to time out of the frustration that the ailment has forced me to divert my energies from planned course of action.
Whenever I had such physical bouts of stress for initial few hours, I found that my brain stopped my usual objective analytical approach; I am forced to lie down for some time. These physical bouts are caused mainly due to severe headache, pain in the legs, feeling of weakness or feeling of inexplicable uneasiness due to breathing troubles. I knew right from the beginning of detection of my cancer that even the slightest show of my stress will cause big stress to my wife. When my objective faculty awakens I ask myself whether I am trying to seek more attention. Whether I am looking for sympathy? Normally these two questions pull me out of the melancholy. Being head of the family I cannot afford these luxuries. This sound little impractical but as soon as such doubts flash across my mind I pull out a book by Pu. La. And start reading that. I call it a Pu. La. therapy. I sincerely pity those who do not have access this sure-shot remedy.
Emotional stress is more difficult to deal with. I had a different plan of leading my life in my mind. I had applied for voluntary retirement in the month of November but within a fortnight this cancer was detected and therefore I am forced by circumstances to keep my plan on hold. Lot of stress is generated due to this frustration. I feel completely out of control of my life and have to meekly accept the present situation. I have habit of day dreaming, as a result, I keep on planning for future course. I am also very impatient by nature and has habit of expecting quick results from my plans. Unfortunately I am unable to execute my plans. I have no option than to accept the situation.

Sixth chemo cycle

Sixth chemo cycle was cancelled by my Doctor as a result of low WBC count (3000) and low neutrophil percentage (29.9%) even after 36 days from fifth cycle. I was asked to go for a CT scan which showed that nodes in the armpit have been reduced to normal but left inguinal node is still 2 cm. The report also mentioned improvement over first scan but the new report mentions about tiny hypodense lesion on the lower third of spleen. The films of CT scan report do not specifically mark out the abnormality (by separate ink as in the first scan report of December 2009). My doctor in TMH never saw the CT scan films but relied only on the text report (possible that only radiologists can understand the films). Doctor in TMH informed me that a quarterly Retuximab maintenance schedule for next one year will have to start now. My next appointment with TMH is on 15th June 2010.

Calcium deficiency

After the third cycle I started feeling a gradual increase in weakness in legs with continuous pain in femur (thigh bone). I was forced to reduce my morning and evening walks inside the house from one hour in each session to about 15-20 minutes. No much attention was paid by the doctor to my complaining about this pain. I thought as I had taken 100 mg of Prednisolone, a steroid for first 5 days in each chemo cycle, it might have caused depletion in calcium level in my body. At the end of 5th cycle, I started taking a distributed dose of 3 tablets of Calmag (600 mg of calcium with 405 mg of magnesium) and alternatively Shelcal (500 mg of elemental calcium+250 IU of vitamin D), which relieved me of the pain. This was informed to the doctor, who had no objection. (serum calcium was tested on own initiative after 10 days, which was 8.4 mg/dL, 8.2 mg/dL is the lower limit), but I still had some pain in the knees. I was advised by my orthopaedic consultant after detailed investigations that I had no serious problem in the knees and as far as possible, should avoid folding the knees. This precaution worked well and pain in the knees gradually started subsiding. My capacity to walk at normal pace is now slowly returning (after about 50 days from the 5th cycle).

Apaan Mudra

My legs started aching unusually, (the pain was in the muscles above knees) after the second cycle and continued till I deeply analysed the cause. It was not due to electrolyte imbalance because I was not experiencing cramps and pain in the wrists as in the first cycle. I noticed that my urine output was like a normal person in spite of more liquids in the diet. I thought that the pain might be due to extra toxins stored in the body that are not getting flushed out. I had read about various mudras and their advantages to body, I then started practicing Apaan Mudra, which helps the body to flush out waste material from the body. Apaan Mudra is performed by joining tips of thumb,middle finger and ring fingure with little pressure, keeping index finger and little finger as straight as possible. I do it for 30 minutes at a stretch for two times a day during my pranayam and music therapy sessions. I could notice a good change within 24 hours, the urine output increased and pain started subsiding. After practicing it for 4-5 days the pain and weakness felt in the legs completely disappeared. I am now practicing Apaan Mudra followed by Praan Mudra as additional exercise for maintaining fitness.

Management of side effects of chemo therapy

After going through the information about cancers in general and lymphoma in particular, available on the Internet, I have come to conclusion that most of the cancers are completely curable if one can handle the side effects of therapy. I think patients should collect full information about the cancer, prescribed drugs, action of the drugs and their side effects and knowledge about management of side effects so that one fully understands what exactly is happening. I have noted that many people are scared even to pronounce the word cancer. New drugs are being introduced as a result of painstaking researches, experience and knowledge of doctors is improving fast and therefore a patient should also change the old perceptions and get ready to manage the side effects. I have been trying following supplementary therapies to my benefits.

Pranayam: I practice “Pranayam’ at least for one hour every day. Pranayam is breathing exercise that improves efficiency of our respiratory system which results in to supplying more oxygen and nitrogen to the blood that acts as nutrients to the cells. The easiest method of this exercise is to inhale through one nostril (closing the other) slowly, as deep as possible and then exhaling through the other slowly. Deeply inhale through left – fully exhale through right – deeply inhale through right and fully exhale through left makes one cycle. You may sit in comfortable position; I prefer to walk slowly in the room with fresh air to avoid boredom of sitting in one place for long time. I also split this in to two sessions of 30 minutes each in the morning and evening. Depending on the availability of time I extend these sessions to one hour also at times.

During one of such sessions, a thought flashed my mind that since the breathing exercise provides more cellular nutrition, whether I am making my cancerous cells also strong? When I pondered over this possibility for some time I thought that yes, let it be so, there are few cancerous cells that are outnumbered by good cells and therefore making both types of cells strong will be analogues to a fight between strong fellows, which is more damaging than fight between week fellows and here I need more and permanent damage to my cancerous cells. I feel very energetic and fresh throughout the day.

Mind control or programming the brain: I had undergone a basic course on Silva Mind Control few years back and since then I started to appreciate power of brain that can be positively used. Here I get an opportunity to use the technique on my body so that I can evaluate the results myself and that could be a useful experience for me as well.

After taking bath I lie down on my bed, cover the eyes with a black cloth to prevent disturbing light, take 2-3 deep breaths and count 100 to 0 which helps me relax my body. I scan my entire body to check whether all muscles are relaxed and I am comfortable. I imagine myself lying in a very pleasant environment mostly in a green cool place surrounded by hills. I visualise that my body is cooperating with the therapy and drugs are doing their desired job. I also visualise that old cells are fast replaced with new and fresh ones thus I am becoming more energetic and healthy. I do this session for about 30 minutes and feel very good, perhaps this may be one of the reasons that I did not have much of problems by side effects of chemo therapy.

Music therapy: Immediately after the mind control exercise, I listen to music that includes western classical and Hindustani. With whole body relaxed, I try to listen intensely and note every beat. I try to imagine a picture suitable to the form of music for example, while listening to some of the symphonies of Mozart a scene of ballet automatically appears or while listening to Pandit Hariprasad Chaurasiya, I remember a great mehephil which went on till 4 am in the Nagpur University hall in Nagpur that I attended about 30 years ago. I prefer flute to other instruments because that gives me a feeling of peace. This therapy goes on for about one hour.

Observations after the First Cycle of Chemo

Side effects of chemo therapy: I started getting headache next day at about 9 AM and was discharged at about 11.30. Doctor advised me to take Crocin but since my experience with crocin is not good (stomach upset), I avoided. I was feeling intoxicated equivalent to having had a bottle of beer, though the headache was not allowing me to enjoy that beer effect, I tried to sleep with my eyes completely protected from light for about two – three hours and then the headache subsided.

Nausea: I felt light nausea for only about 6-8 hours I could take my food in small quantities and was taking sufficient liquid. Avoided taking milk next day and thereafter regularly taking curd and buttermilk twice a day

Headache and fever: For about 3-4 days I had light headache and was feeling feverish after which I took one Combiflam and thereafter I had complete freedom from these problems. As an extra precaution, I avoided bright light, which is one of the sources for my headache.

Constipation: Though normally I don’t have constipation, for two days after chemo, I had it, I started taking 3 tsp of Isabgol (psyllium husk) with milk in the evening daily so this problem was also overcome.

Insomnia: I could sleep well only the first night due to that beer effect but second night was terrible. I was feeling very fresh and in spite of all my attempts to fall asleep including reverse counting etc, I couldn’t succeed so next night onwards started taking Restyl (0.5mg). It gives me a sound sleep of about 6 hours. I tried to skip once or twice but couldn’t sleep so I think I will have to continue taking one tablet every night.

Body ache: For 2-3 days I was feeling weak leg muscles had severe pain in both the wrists, about 6-7 cms from bottom of the palm, almost in the centre. Acupressure technique did not work. I had observed such pain in the past caused due to loss of electrolyte. (such pain was observed in past usually as an after-effect of taking more than 2 drinks and my remedy to it was a glass of lemon water with more salt) Taking lemon+salt+sugar did not help so I took Electral for two days and the problem disappeared.