The end is nigh

Saturday, 1st October, 2016

We are counting the hours now. That is the amount of time that Dr SD has given N to live. This follows blood reports coming in that show N's WBC counts exceeding 99.28 billion cells per Litre, a creatinine level of 2.43 and potassium level of 7.6 mMol/L. She has no infection, the blood culture report was clean. The leukocyte count is purely the cytokine response due to metastasis.

Anyway, we have put N on a 5% dextrose drip with 10 units of insulin to control the potassium levels. The creatinine is not that worrisome. N does show signs of kidney failure, though, which was probably brought on due to dehydration.

There is nothing we can do for the inflammatory response, that I can think of. It has not been caused due to an infection, or we could use antibiotics. Corticosteroids is an option, but hasn't been used much in end of life treatment from what I have read. Neither did any of the doctors suggest it. I re-read parts of my old immunology textbook to find it very lacking. It limits itself to infection, not to the pathway as such, so was not of much use to me.

It is sad that the awareness about the inflammatory response in cancer is lacking amongst medical practitioners in India. Perhaps targeting that pathway could have helped N. I regret not using the ayurvedic medicines now. Many were targeting that pathway.

However, I can see much headway being made in cancer medicine, which should help millions fighting against this terrible disease in the near future. It is sad that N will not be there to make any use of it.

I can see N's temperature going down steadily. It is now 96 F.

It is a waiting game now.

Crash and (not) burn!

What an eventful few days, ranging from heart-stopping agony to pure relief, and hopefully, a degree of recovery.

N's oral intake has been consistently reducing over the last 3 days, leading to reduced urine output, lowering blood pressure and visibly increasing discomfort. Our GP has basically recommended that we let N die, as painlessly as possible, giving her water when she asks for it, and not forcing any intake. This has, unsurprisingly led to dehydration, and its consequences at 4:00 AM on 28th September were scary.

We were urgently called to N's room by my uncle who had been woken by the nurse. N was exceedingly uncomfortable, seemed in agony and was breathing volubly and oddly. Her oxygen saturation was scarily low at 81. We called up my cousin, a doctor, currently living in the US, and he suggested we rush her to the hospital. This idea was immediately dismissed as it could mean that N would lose her life in an impersonal ICU with no one at her side. Taking the risk into consideration, a further patch of fentanyl was applied to at least ease her pain, and the backrest of the bed raised.

While N's children (my mother and uncle) sat by N, perhaps seeing her off for the last time, I rushed, along with my brother to a 24 hour chemist to procure an oxygen cylinder. It was impossible to get a proper sized one as most medical equipment stores were closed, so I returned with a refillable 1000 mL cylinder that could at most be deliver 0.5 L of oxygen per hour. Happily by the time we got back, N was enormously better, with her change in position (and perhaps eased pain?) bringing her oxygen back up to 97.

When the world woke up, we ordered a full sized cylinder, and returned the tiny thing that we had bought. It is now on stand-by, should the need arise.

Come afternoon, we were visited by a pain specialist, who does house calls and works in palliative care. Dr SD felt that N need not be left to die, and that hope was not lost. He suggested (much to my mother's disgust), that a naso-gastric feeding tube be inserted to give N some much needed nutrition. She agreed after being reassured that it would not cause her pain. However, he also felt that this could be done only after she is stabilised and her mouth, now infected, be treated. He suggested we have an IV line inserted in the mean time, a task that proved rather difficult for our nurse due to the dehydration.

What followed was an adventure to a nearby charitable hospital whose staff exceeded themselves in helping us. An experienced nurse attached to the hospital came over, after her shift ended to help us with N, completely out of the goodness of her heart. Faith in humanity was restored!

N is currently in repose. She did not like getting an IV line, and we would have respected her decision if her electrolyte imbalance were not interfering with her decision making abilities. Dr SD feels that N would probably stop needing the IV line in 2-5 days. Let's hope that she can have her nutrition orally by then.

Mostly disappointments and life goes on...(thankfully)

23rd September, 2016:

Met Dr S. She felt that N is too frail to receive chemotherapy. My mother is relieved as she feels that N's recent treatment regimen has been nothing but exploitative on the part of her doctors. She, with reason, is disgusted with the lack of information and the patronising attitude of N's primary surgeon.

While I don't think Dr P misled us, I have maintained at all times that his team has been unprofessional and at times ignorant. Indeed, I have called them out on it. This is particularly true for Drs C, U, S2 and P2 who have withheld information, not responded to calls and have been downright rude while having only a school child's knowledge of science.  When someone does not know that negative pressure creates a vacuum, (while they casually do "negative pressure wound therapy" dressings), it should raise red flags. I sometimes wonder why there is no core science curriculum for clinicians in India after high school. Patronising someone is irritating enough. Being patronising when one is a complete and utter idiot is disgusting. I am unsurprised by the statistic that 60% of Indian doctors fail to get a licence in the UK. Most are rote monarchs produced by a flawed education system. The better ones go abroad.

To be fair, there were a few excellent ones as well, Dr V was brilliant, and Dr I was not bad. Our GP, Dr RP is brilliant and a true asset to the profession.

Anyway I digress -- physician stupidity (and I have been unfortunate to be subjected to a lot of it), always causes me to rant. Dr S felt N is frail, and my mother, disgusted with doctors, hospitals and health "care" did not think that not undergoing chemotherapy was something to be sad about. She does not see the point in prolonging N's life with torture and I find it hard to argue the point.

I was however, hopeful of immunotherapy. Unfortunately Roche India's reply came in and they stated that they had no permission to market the drug in India, so I am stuck with an unaffordable treatment option. I will try writing to Roche in Switzerland but I am not particularly hopeful. If there seems to be any headway, I will arrange to have N's PDL1 expression undertaken.

A Vaidya came for a home visit as well. I asked the Viadya for the formulation. He listed a total of 11 constituents of which two bhasmas contain mercury, so we haven't given them to N. If the accumulation time is slow, I may go ahead with them anyway, there isn't much to lose at this point, and the effects would perhaps have been apparent only years later. Years that she obviously doesn't have. Even so we have refrained. Besides, my mother felt he was grasping as he had brought pre-prepared medicines (before even seeing N), for which he charged Rs 5000, though it is a small sum compared to biologicals that are available in the Indian market (Rs 75000 for a breast cancer drug by Roche). Admittedly, I feel that there are better formulations available, and better Vaidyas too. I intend to Skype with one in a couple of days. The other wants to see N personally before prescribing or diagnosing.

24th September, 2016:

The nurse almost overdosed N with painkillers. Gave her an ultracet over the two 25 microgram fentanyl patches applied. N's complaints of pain need to be monitored exceedingly closely, as many complaints stem from irritation rather than pain (as was the case today). Removed one patch. So far so good, though drowsy. Mouth is dry, but no respiratory distress or anything nasty. Observed her for about an hour. The nurse in the next shift is much more competent, thankfully.

Had intended to go to meet a very respected Vaidya today, but my mother (and N) shot down the idea. Considering the fact that N seemed drugged to her eyeballs, I agreed. Will try to persuade them to meet the Vaidya another day.

Also, changed the vacuum dressing at home (called a technician). He did a much better job than the surgeon (as the technician had the last time, as well). The wound is very clean and has closed considerably. It should be fully closed in five to ten days' time.

It is pouring outside, and there was a bit of a scare. A wire started sparking. The electrical source was identified and shut down and the electricity suppliers called on the phone. The latter put us on hold for about half an hour. Happily we had resolved the situation (by identifying and shutting down the supply) by the time they put the call through. Absolutely useless!

We are still alive and have a roof over our heads as I write this. Hopefully tomorrow will be less eventful.

* I will list the formulation given by the Vaidya in this blog. later, along side their constituents and potential activity. I have undertaken the exercise and have it on paper.

Updates...

We went to get N's HRCT scan of the lungs done today. It seems that the dye is injected only for contrast scans, so N's high creatinine is irrelevant for a run of the mill CT. In spite of an appointment at the centre, there seemed to be an agonising wait, so the scan was cancelled. The scan is important as the lungs and the bones are the most probable targets of metastasis in bladder cancer, so we'll probably schedule it for later and have someone sent over earlier merely for the purpose of "reserving a place".

Disheartening news followed, the pharmacy we contacted through Roche has quoted CHF 15,250 for 1 vial of Tecentriq. This is prohibitively expensive for even a relatively well off Indian and doesn't even include shipping charges (~CHF 2500). While I have written to Roche to ask whether it may be made available cheaper in developing countries, I cannot be optimistic about my chances.

Meanwhile, we have contacted a couple of Ayurvedic oncologists. We will be visiting what seems to be a leading centre on Friday and will be arranging for a home visit from another practitioner as well. Let's see what they say and the therapeutic path they choose.

Scheduled to meet the oncologist later today. Mother refuses to consider chemotherapy, especially after our GP (someone I trust and respect enormously), has described it as fighting a losing battle. I can't say that I disagree but would reserve judgement until we at least meet the woman.

About this blog: a brief medical history

This very personal blog intends to chronicle the ups and downs in the life of my grandmother, let's call her N, while living with advanced bladder cancer. It is written from the carer's perspective. A brief medical history may be necessary to give the posts some context.

N was diagnosed with bladder cancer about 4 years ago. It was successfully treated with 6 rounds of BCG therapy, until it recurred very aggressively and was discovered late this June. It would have been dismissed as a urinary tract infection had it not been for her previous history. Sonography scans confirmed that there was a recurrence and CT scans followed. Much to our (premature) relief, the tumour, though large, seemed to be localised in the bladder and the urologist suggested radical cystectomy -- the removal of the entire bladder. Considering her advanced age (79), and her history with pneumonia the previous year, the surgery took place only on August 4th, after the go ahead by the lung specialist. The surgery was successful and the wound continues to heal well (as of 20th September, 2016) under negative pressure wound therapy.

Histopathological reports revealed that there was no metastasis in any of the surrounding organs, though one peripheral lymph seemed to be affected. The surgeon felt that the lymphatic drainage of the region was such that the cancer was in all probabilities completely excised.

We were reassured, though this relief was short-lived. By end of August, N started complaining about consistent pain in the anal region, almost as if the region was boiling. Her doctor assumed it was impacted stool, a diagnosis he maintained even after the bowels had been evacuated. With constant reassurance that all was mostly well, I am ashamed to admit that we blamed N for being overdramatic and to an extent, dismissed her pain. Another physician suggested we have a complete blood count done. When results came in with ridiculously high levels of WBCs (27,000), we set about on a hunt for the source of infection. Later, blood culture reports revealed that there was no bacterial growth. On finally consulting a gastroenterologist, the diagnosis of impacted stool was discarded and an abdominal CT scan revealed that the cancer has metastasised to the lymph nodes of the pelvic region, and that a regrowth has occurred in the region of the erstwhile bladder. This was Friday, 16th September, 2016.

N was put on tramadol the same day...