If you’ve read any of my earlier blogs you’ll have picked up on the facts that I’m an Englishman in America, have Lymphocytic Classic Hodgkin’s Lymphoma (well, probably, that’s what I have) and that, without the assistance of my wife, I’d be lost in this maelstrom of insurance cover, co-pays, insurance authorisations, private hospitals, doctors’ offices and so on. The more of this I experience the more I appreciate the NHS and its simplicity. Today has, once again, reinforced that appreciation.
It’s now a full week since I last saw my oncologist at which time he, or his office, were to request that my biopsy be sent to Washington for a definitive second opinion and were also going to get clearance of from my health insurer that the drugs programme would be within policy – or whatever the phrase is. I’m a US Health Insurance virgin and am beginning to feel that, rather than losing my virginity to someone I will remember all my life, I’m being heavily mauled by a biker gang prior to sexual assault. It’s not the fault of my insurer, they’ve responded relatively speedily to every request, well, with my wife chasing them they’ve not had much choice but to be speedy. It’s just that the system is so seemingly random with nothing being co-ordinated anywhere along the line by anyone other than us, and by ‘us’ I actually mean my wife who has taken on the burden of chasing all of this up and keeping on top of things. It’s a destructive and brutalising battle for her as she wants to give me time and support, and, indeed needs time to recuperate herself and deal with other issues in her life, but instead her time is often taken up in conversations with the insurer and with doctors. Today, a week after seeing my oncologist, it turns out that the results of the biopsy have yet to be received by the oncologist’s office from Washington where they were sent for a second, or third, or fourth (depending upon how you define these things seemingly) opinion, at least we were told a week ago by the hospital that the request had been received from the oncologist’s office. Will the opinion be back before I start treatment next Tuesday? Who knows? The next fly in the ointment, though it’s not ointment and the thing which is in it is far, far too big to be a fly, is that the insurance company hasn’t yet authorised the treatment. After several phone calls my wife seems to have been able to track down the reason that there is as yet no medical insurance approval: one the drugs (I think, rituxan) has yet to be given FDA approval and so the request will sit with a different department within the insurance company. We are now back in a position of racing time for the treatment to start, although the doctor’s office assures my wife the remainder of the cocktail will be given to me on schedule even if there is no approval for redoxin. Will the results be back in the next three working days? Will three working days be sufficient for the doctor’s office to send/re-send the information to the insurance company, deal with any queries which the insurance company might wish to raise and still get a positive response from the the insurance company? I don’t know, and the really scary thing is that no-one can tell me. Should I be concerned if there is a further delay or not? It’s human nature to worry about this sort of thing isn’t it? I mean, after all, I have something growing inside of me which is feeding off my body and which is intent on killing me. It’s a little bit like being a bird which has a nest full of eggs destroyed by a cuckoo and yet has to go on feeding the cuckoo. It’s all very well to tell me “It’s a slow growing cancer”. While it is good that it is slow growing it is not at all good, perhaps even fatally bad, for me that it is growing at all!!
Unlike the bird unable to distinguish the cuckoo from its own eggs and chicks, I am all too aware of this cancerous mass in my neck, of the still red scar from the biopsy, of the incisions for the port in my chest and the triangular mass of the port itself, of the resistance in my neck every time I turn my head to the right. It’s hard not to be so aware. Whenever I touch my neck I feel the remainder of the cancer mass, when I wash I see the still raw marks on my chest from the insertion of the port, I put my hand to my chest in an habitual movement and pull it away quickly as my fingers encounter either the enlarged vein where the “pipe” has been placed, or the mass of the port itself. When I awake in a morning I can feel where the unhealed wounds for the port have rubbed against the bed-sheets. On top of this my symptoms seem to be progressing. A short while ago I listed symptoms and mentioned that I seemed not to be having these: well things are changing. I’ve gone through a period where my feet itched badly at night and I’m now getting night sweats most nights. On top of that I tire very quickly. For instance yesterday I visited the educational center at which my wife works, to say my farewells to some of the students I have worked with down the years who will have left education and moved, hopefully, into gainful employment by the time I am next able to mix with groups of people. I also wanted to say “see you later” to the other students whom I will, hopefully, see in six months or so. It’s important to say these things so that these students know that I haven’t just turned my back on them and walked away as many others have done in their lives. The class teacher has worked hard to build a feeling of community, family if you will, and one doesn’t just disappear from a community without a goodbye. I really did nothing physical at all, interacting slightly with a group discussing friendship in the morning and then for perhaps thirty minutes in the afternoon at the party, but when I got home I went to bed and slept for two hours.
I was very touched to discover that I was guest of honour at the monthly birthday party, and that some of the students had written me good luck cards. I’m sufficiently egotistical to want to share some of the comments!
“I am sorry that you are sick. I hope that you feel better soon. Your wife will take good care of you. Take good care my friend.”
“I heard about your illness and I hope you get better soon. We love you.”
“I am sorry that you are sick. I wish that you feel better soon so that you can help us.”
“I hope that you come to see us soon because you are a really cool teacher and you showed us your really cool experiences. I’m glad you came kayaking with us and hope you come back soon.”
“I hope you feel better soon. We miss you.”
“I am sorry that you are sick. I hope that you feel better and come back soon. We miss you so much. Feel great.”
“I hope feel (sic) you feel better soon you are a nice man and we miss you very much.” This one is from the student who’d previously asked me if I’d been shot when I’d shown him the incision from the biopsy.
They really are simple words for the most part, but, perhaps, the more touching for all of that. Most of these students are simple people – not in the sense of being stupid, but, rather, in the sense of seeing things in an uncomplicated and simple way. All of these students have learning difficulties in some degree and I know that the effort which went into drafting and then writing their message and then their envelopes was much greater than the number of words themselves reveal, and that the time taken to draft and then write the messages and the envelopes was substantially longer than it took me, or probably you, to read them and record them above. What I can say, however, is that I’m sure the amount of time I give to remembering these words, particularly when I feel down, will match and possibly exceed the time given to me by the students. It’s good to know that you have touched someone’s life isn’t it?