A Passage to India

 

Fortunately my experience of India was nothing like the uncomfortable story described in the book by EM Forster but as the book is one of my favorites it seemed like a good title as any. It also struck a chord with me as I am on a passage of sorts at the moment in relation to my myeloma. I looked up the meaning of passage in the free online dictionary and it came up with many as you would expect so I have just selected the ones that I find relevant to me:-

pas·sage 1 (psj)
n.
1. The act or process of passing, especially:
a. A movement from one place to another, as by going by, through, over, or across; transit or migration.
b. The process of elapsing: the passage of time.
c. The process of passing from one condition or stage to another; transition: the passage from childhood to adulthood.
d. Enactment into law of a legislative measure.
2. A journey, especially one by air or water: a rough passage on the stormy sea.
3. The right to travel as a passenger, especially on a ship: book passage; pay for
8. Physiology An act of emptying, as of the bowels.
9. Biology The process of passing or maintaining a group of microorganisms or cells through a series of hosts or cultures.
10. Obsolete Death.

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[Middle English, from Old French, from passer, to pass; see pass.]

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I have come to terms with the fact that I am relapsing and am in the process of passing from one condition or stage to another; transition as in 1c above. The difficulty I have is not knowing where I am going and how long it is going to take to get there!  I hope my passage is a long one and whilst we all arrive at no.10 at some point, I hope that isnt for a while either!  My passage or transition has already lasted four months and at my last light chain test after I came back from India my Kappa light chains had dropped from 89 mg/litre to 77 mg/litre. My haematology specialist nurse said I should go on holiday to India more often! Maybe I will?

This trip took on so much symbolic significance for me. It was the trip I had to cancel just before diagnosis due to kidney failure, it was a destination that seemed out of reach after diagnosis due to risk of infection and low immunity and then the trip I had booked was cancelled. After sorting out a new itinerary, I then found out I was relapsing and wasn’t sure I would be able to go or even wanted to go. I lost a bit of confidence.  I am not a believer in fate but I was starting to develop a sense of foreboding about the trip, that maybe I wasn’t meant to go to India.  Then there was a last minute hitch with travel insurance.

Before I knew I was relapsing I had purchased an annual travel insurance policy which was at a very reasonable price to include my condition. One of the standard questions I had to answer about my condition was whether I was currently in remission to which I answered yes. It occurred to me a few days before I was due to go that I should inform the insurance company of what I thought was a slight change of circumstance in that my light chains were out of normal range but I didnt need any treatment and was fine to go to India according to my haematology consultant. I rang them up and the conversation went something like this………….

Me “I am going to India on Friday and I need to inform you of a change to my circumstances in that my myeloma markers are out of normal range”
Them “are you in remission as you declared when you took out the policy?”
Me “I dont know, I dont need any treatment, my markers are just higher than they should be”
Them ” are you currently in remission, yes or no?
Me ” I dont know, depends on the definition of remission,  I’ve not relapsed”
Them ” Do you know what stage of disease you are at”
Me  “I dont know”
Them ” You need to ask your consultant whether you are still in remission and let us know by tomorrow afternoon, we need a yes or no answer”

So I email my consultant the next day with the question “am I in remission, the insurance company run a standard script about myeloma and the answer can only be yes or no. He kindly takes the time to reply that unfortunately he would have to say that technically I am no longer in remission and he gets this all the time.

I ring up the insurance company again and the conversation went something like this…………….

Me ” my consultant says I am not in remission but I am fine to go to India”
Them “If you are not in remission, are you at stage 1 or stage 2 myeloma?”
Me “neither apply to me, this is not a relevant question”
Them “then is the answer “I havent been told or dont know what stage I am at”
Me “Well as none of the other answers  applyI suppose this is the nearest”
Them “There has been a change of circumstances which mean that we will have to decline your policy. Is there anything else I can help you with today?”
Me “yes, travel insurance you bastards!”

So I ended up spending my last evening trying to find a reasonable priced single trip policy online, instead of relaxing and doing a little bit of tidying up and final packing.

As those of you with myeloma or other serious illness, the first hurdle to overcome is answering the question

“Has any member of your party ever been diagnosed with a terminal prognosis?

Yes No

If so, how long is the terminal prognosis from the date of return from your trip? (in months)

I always say no to this question as no one as ever told me I have a terminal illness, incurable yes but not terminal!

The next hurdle is to declare your condition and answer the specific questions relating to it as follows:-

Medical condition:

Multiple myeloma

Questions
How long ago was the diagnosis made?	Less than 5years, 5 – 10 years,, Over 10 years
Have you had a bone marrow or stem cell transplant?	Yes                                                                                                 Yes – but it didn’t workNo
If you have been told, please specify what stage your disease is at currently	Stage 1Stage 2                                                                                             Stage 3My disease is currently in remissionI don’t know or have not been told my disease stage
Are strong painkillers being taken?	Yes                                                                                                 No
Has this condition caused a bone fracture in the last 12 months?	Yes                                                                                                 No
Has the condition resulted in any of the following problems?	Impairment of kidney functionSpinal cord damage causing leg weakness or incontinenceBoth of these                                                                                       None of these I have already declared these problems

I got quotes varying from £450 to the one I eventually settled on for £110 which seemed pretty good for an 18 day trip. It excluded cancellation but as my trip was less than 12 hours away I didnt think I needed cancellation cover.

From this kaftaesque experience I learned two things:-

1. That technically I am no longer in remission so my blog subtitle will have to change from living in remission to living in what?? Any suggestions welcome! With hindsight it was a silly subtitle as I knew that that remission wouldnt last indefinitely
2. Insurance companies insure you against risks but avoid taking any! However I dont regret telling them as if something had happened on my holiday which was arguably due to my “condition” I would have had a struggle getting them to pay up. What I regret is that I didnt tell them sooner so I would have had more time to deal with the fallout and get alternative cover instead of going through all that stress and venting my frustation at the poor woman on the telephone

And off I went on my passage to India and I am pleased to say that I had an absolute blast without any health issues at all. No delhi belly, no colds, nothing and I had a lot of energy which I needed for such a demanding trip.  What I didnt need was the dammed insurance!  This isnt a travel blog so I dont want to go into too much detail of my holiday but my two top things were seeing the Taj Mahal and seeing a wild tiger in Kanha National Park.  My “passage” was by car, train, bus, cycle rickshaw, autorickshaw or tuk tuk, foot, motorbike, plane and more unusually elephant, hot air balloon and safari jeep!  I made new friends, ate delicious food, drank a lot of marsala chai, and watched the famous goan sunset for 4 nights at the end of my fantastic holiday.

What was so refreshing about the holiday was that I felt NORMAL, in fact whole days went by sometimes without me even thinking about myeloma or anything to do with it. On some of my many long “passages” I would look out of the window and have idle fantasies about my next trip to India and where I would go, would it be further north, skiing and trekking in the Himalayas or down south to Pondicherry or both? Then I would catch myself on and remember that I had myeloma, was relapsing or whatever I am doing and that I cant make any such plans. So I feel incredibly fortunate that myeloma didnt prevent me from going on this trip which almost seemed fated not to happen , that I had such a fantastic time and my expectations were met, that I didnt get ill and that my dream of seeing a tiger in the wild was fulfilled and was every bit as  inspiring as I hoped it would be .

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From the Run to the Runs

 

Nearly three weeks after the elation of running the 10k and about a week after I got back from a holiday in Italy,  I got a very bad episode of sickness and diarrhoea. Oh the highs and the lows.

No one I had been with or eaten with had got it so it was something I picked up all by myself.  Sunday night and Monday day  were the worst and I had to cancel my monthly bone strengthener treatment (Zometa) at the Haematology Day Unit as I wasn’t well enough to go in and also you are not supposed to attend if you have had sickness or diarrhoea within the last 24 hours.  By Tuesday, I was getting a cold as well. I rang my GP and he suggested I take antibiotics but as it was getting to closing time it would be too late to issue a prescription. I remembered I had an emergency supply at home so he told me to take them.  I started to feel better over that evening and the next day the trend continued so I went in for my Zometa on Wednesday morning. I had wanted to go because before Zometa is administered a blood test is taken to check kidney function. I knew I was being paranoid but some of the symptoms I was feeling with the infection were similar to those I had when I went into acute kidney failure which were shortness of breath, tiredness, lack of appetite so I was relieved that my glomular filtration rate was over 90.  Relief but I am annoyed with myself for the unnecessary anxiety I felt.

It also took me back to almost the exact same time a year ago when I was admitted to hospital for 4 days with chronic diarrhoea, the cause of which was unknown. It started when I was on a short break in the Algarve. I thought it would get better when I got back but it didn’t, it got worse and so I rang the doctor on the haematology ward and she said that I should probably go to A&E. It was Saturday night and I didn’t want to go and sit for hours in A&E  so she agreed I should go first thing on Sunday morning if it wasn’t improving.

I drove myself there on Sunday morning expecting to be back in a few hours as I had planned to go with friends to the Chorlton Open Gardens Day (why I thought I was going to be able to attend that is beyond me) but I ended up being admitted, put on a drip and blood and stool samples taken.

Because of my infection and risk of infection due to just completing my last round of chemotherapy I was put in an isolation room on the Medical Assessment Unit which is a pretty dismal ward where people are put because there is nowhere else for them to go and they cant stay in A&E. I had to call some friends to bring some pyjamas in for me and some other stuff and drive my car to another car park.  The room was hot, small, stuffy and noisy.

I then got moved to a room on the acute medical ward and spent another couple of days there. it had a pay TV so at least I could watch Wimbledon. They weren’t giving me any antibiotics to treat it until they had established the cause. It was at the time of the outbursts of ecoli in Europe which was eventually linked to a bean sprout producer in Germany I think so the medics were concerned that it could have been ecoli but then ruled it out as there were no reported outbreaks in Portugal and tests were negative.

The only good thing about being in hospital is that I bumped into my haematology consultant whilst I was having a walkabout and she told me that there was good news about the results of my bone marrow biopsy which I had done the week before.  There needed to be less than 10% abnormal cells before I could proceed to the stem cell transplant stage of my treatment and when I saw her in clinic on Friday she confirmed it was less than 5%.  So I was discharged on 22 June with some phosphate supplements as my phosphates were low and then gradually got better but running to the toilet 14/15 times a day is not a pleasant experience! Below is an extract from my discharge sheet.

So with having a compromised immune system I was worried that I was going to end up in hospital again but this time my body fought it and I recovered within 48 hours and also was able to attend the Chorlton Open Gardens this year which was on Sunday 24th June. About 25 gardens in Chorlton were open to the public in aid of Freedom against Torture Charity and I managed to get round 15 of them, all of which were lovely, some of which were stunning and inspiring. Here is a photo of a pond I particularly liked.

So all good again.  I think I was particularly anxious this time because of the uncanny timing with the episode last year, the symptoms of fatigue and shortness of breath which were part and parcel of my infection which I was worried was to do with my kidneys and because over the last two months or so 4 people of around my age with myeloma that I know of have died because of serious infections. When I hear about this I feel extremely sad for them and their families, scared and down too because it is a reminder of what may happen to me. Not likely whilst in remission but I DONT KNOW HOW LONG THAT IS GOING TO LAST! I have a clinic appointment next Friday when I should find out my latest free light chain results, wish I could stop feeling anxious.

Just read a very good quote from Daily Encouragement by Daisaku Ikeda which a facebook friend posted.

The important thing is to advance brightly and strive to be victorious at each moment, right where we are; to begin something here and now instead of fretting and worrying over what will happen. This is the starting point for transforming our lives.

This was such a timely post for me, thanks RF!