Tag Archives: Travel Insurance

The kingdom of the sick

“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
― Susan Sontag, Illness as Metaphor

Not being a big fan of New Years Eve I am not bothered to make an occasion out of it. I went to bed as usual around 10pm but got up to watch the multi coloured fire works fizzing and exploding into the dark smokey sky from my bedroom window.  I prefer New Years Day and the grey quiet days that follow, the seasonal frenzy is over and there are no diaries to be found anywhere in the shops!  It is a good opportunity to take stock of what has passed and what the new year might hold for me, 2016 was an annus horriblis for the world and for me health wise.  My last post was in May 2016 At last some good news and I am not even going to attempt to catch up in any detail.

Treatment wise, I continue on Revlimid, the much hated Dexamethasone and for the last few cycles a traditional chemo agent called Cyclophosphamide to try and strengthen the Revlimid and avoid the need for a double dose of Dex which I found unbearable. The boss describes my disease as stable but I feel like I am on the usual rollercoaster, my light chains varying each cycle between 100 to 800, bobbing up and down, currently 404mg/litre at the end of the 15th cycle. Although I find this treatment regime a real struggle and the toughest yet, I know I need to keep on it for as long as it is holding my disease stable before switching to a new treatment otherwise my options will start to run out fast. I have come to terms with the fact that I will most likely be on treatment for the rest of my life, that there will never be a period of drug free remission or my light chains getting into normal range, the best I can hope for is that any new treatment regime I start isn’t as hard as this one, perhaps more effective and gives me better quality of life.

I saw an excellent musical last year called  A Pacifists Guide to the War on Cancer. A funny and moving examination of life with cancer with a great song about entering the kingdom of the sick and hoping at some point to return to the kingdom of the well or maybe not. I was interested by the idea which I thought the writer of the play had come up with but later discovered that Susan Sontag wrote about in her essay, Illness as Metaphor.  Last year, more so than at any other time since my diagnosis I feel I have taken up permanent residence in this metaphoric kingdom which unless you have stayed there is I imagine hard to understand. I mean I look well don’t I?  It is a world where every day I am aware of my health, managing my health is a full time job. The hospital appointments and stays (four emergency admissions to hospital last year), countless blood tests, copious amounts of medication, persistent and continual viral infections, self administered daily injections, infusions, chronic gut issues, fatigue, insomnia, low mood and anxiety and so much waiting. Waiting to feel better, waiting for results, waiting for appointments, waiting in pharmacy, waiting for a bad moment to pass, waiting can be exhausting. I’m not saying it’s all grim, it is just different. I’ve got friends here, family too, I don’t have to pretend to be upbeat and I feel safe. We can share our experiences, our illnesses and our fears and disappointments without boring anyone except ourselves. I can be authentic.

I am increasingly disconnected from the well world. Fatigue, chemo brain,  loss of confidence and not being able to do the things I used to do in it contribute to this. I am happy for my friends currently in good health who are enjoying their lives, their work, pursuing their interests and passions but I’ll admit to a touch of envy and self pity too. I wouldn’t want them to not talk about stuff that they are doing or planning to do but it reminds me that I am not able plan anything like “normal “people do, much more than a few days in advance or arranging something then having to cancel it or not go, because of infection, steroid crashing or simply being too tired.

I am frequently asked where I’m off to next on my travels, anything planned? Answer is that it has become more difficult, more trouble than pleasure whilst on this treatment. Travel insurance is expensive, flying increases the risk of infection, I need to consider access to medical centres if I get ill and then there is the fatigue, steroid mood swings and gut issues that get in the way of enjoying the holiday and spoiling it for the people I am with.The desire is outweighed by the obstacles. Having said that I did have a lovely time in Cornwall in the summer last year, a road trip of sorts in my fancy new (to me) convertible and then the ferry over to the beautiful Scilly Isles. Swimming, walking, cycling and lots of boat trips to the remote off islands.  Because I was away for nearly three weeks, some of the time on my own, I didn’t matter if I had a bad day because there was time for me to have a good day.  In early September, a spontaneous break 0n my own to Copenhagen, the cheap flight which spurred me proving to be a false economy! I got to see some of the locations where my favourite Nordic noir dramas were filmed and ate lots of pickled herrings.

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Since Copenhagen I have not been anywhere, apart from a spell in hospital with a high temperature when I got back. After several years of thinking about getting a dog or a cat, I finally decided on a older rescue cat and set aside October and November to settle her in. I was looking for a grey, minimalist, sleek, shorthaired cat and ended up with a very pretty fluffy white and ginger furry toy but I couldn’t be happier despite a rocky start when she nearly had as many health issues as me! She has transformed my life and I feel less lonely because of her presence. Stroking her and listening to her soft guttural purring is a great stress reliever. So here is me and Meg and just Meg.

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In spite of all the moaning about the world I now inhabit, there are, have been and will be times of enjoyment and pleasure, things to appreciate and be grateful for. It is better if I try not to think of the future or the past and concentrate on living in the present. My focus must be on what I can do, not what I can’t do anymore and also not to give myself a hard time if I don’t “do” anything at all! In the words of Alan Bennett I’m keeping on keeping on.

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Filed under Cancer, chemotherapy treatment, fatigue, Health, Multiple Myeloma, Myeloma, Remission, Travel

A Passage to India

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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.

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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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Filed under Cancer, Health, Multiple Myeloma, Myeloma, Relapse, Remission, Stem cell transplant, Travel, Uncategorized