fredag 25 augusti 2017

Blodcancer bromsas, patient börjar arbeta

Den 26 maj skrev jag här: ”Minnen i nådatid kan bli en kort historia”. Jag hade drabbats av något som var svårt att diagnosticera. Alltså massor av stick för blodprov ut eller något ämne in. Till slut byttes hemsk ovisshet mot en hemsk sjukdom: Myelom. Jag gick med i Blodcancerförbundet. 

Christian Pedersen i förbundet frågade om jag ville medverka vid ett möte. Personal vid läkemedelsföretaget Janssen-Cilag behövde möta någon som berättar om sina upplevelser av sjukdomen och av bemötandet. Jag svarade Ja om Evelyn är med.

Mitt svar utlöste mejlande med Janssens Stina Winquist om arrangemangen och Helena Lundquist om innehållet. Jag skulle tala på engelska – men vilka är orden i fråga om blodcancer. Gärna foton att projicera – vilka?

Den 23 augusti hämtades vi i taxi hemma, kördes till Såstaholm, hänvisades till rätt lokal och blev presenterade.

Jag återger nu bara de delar av anförandet som gäller sjukdomen.

The task my wife and myself have undertaken: Tell what life became when I first turned into a tired somnambulist, then an often perforated deliverer of blood tests and, finally, was told that all this is caused by a cancer that cannot be cured. 

Now I will give his testimony, and my wife is prepared to help Like many other old couples we experience memory losses. Fortunately not the same losses! If you have questions concerning my medication, she will give the answer.

A warning before we start: Do not believe that I look as a typical Myeloma patient! The typical Myeloma carrier, although usually over 60, looks like you. 

My stoop and lowered head are not caused by the Myeloma alone. It began with the construction of my vertebrae. That construction was first described by a Danish doctor, named Scheuermann

Today, scoliosis children are helped from getting an oblique spine. Please, Janssen-Cilag, take that as a challenge! Why not help  Scheuermann children from getting a compressed spine as adults?

I am dependent of a walker, the strange English name for rullator or gåstol. Most Myeloma patients are not! Do not remember the sight of me or the walker when you think of Myeloma! Simply look of yourself and other fit people! 

The assault on my health started in October last year. I arrived home with pneumonia after a wonderful cruise on and along the Danube. In spite of a penicillin cure I got blood in the nose, smog in the head and became unable to read or write. Slowly the smog left my head. However, when walking I perceived myself as a zombie. What could be the cause?

I turned to Rotebro Medical Center. My doctor, Carl-Owe Savolainen, started hunting the cause of the illness. Thus one blood test after the other! I became a pincushion on the chair at the laboratory. But the zombie returned as soon as I tried to walk. I felt awful but I remembered my belief in egenvård, self-care. In my case that often means black humor. My first attempt:
It was at Kastrup
I saw a man with a stoop
in a mirror wall

Soon it was obvious that my blood hemoglobin was too low, 101-103, and so were several other vital elements of the blood. Did these elements leaked from the blood to the intestine? Savolainen made me deliver a specimen of my defecation. I did. The result: nil!

He then sent a referral to the Karolinska Hemotolog Department. The reply ordered a series of blood test from the end of January to the beginning of March as well as one colonoscopy. t was fascinating to watch the intestine exploring expedition on the screen. Its result, however: nil

On March 13 I was called to the hematologist for a consultation at April 12 – a long time of waiting.  In the meantime, on March 27, a specimen of my bone marrow was taken. My symptoms continued as annoying and exhausting as before.   

On April 12 I arrived stricken by the same fatigue, the same zombie feeling, the same pain in the low back when changing positions and the same difficulties to read as well as inability to write. The hematologist mentioned something we did not understand: a specimen had shown Plasma: M.komponent av typ IgG-lambda, ca10-12. 

Then words that we did understand: You have got Myeloma. It is an illness that cannot be cured, just curbed. I also got a brochure, Myelom.  We read it back home. It told us that Myeloma is s form of blood cancer. The hematologist had not mentioned the word cancer. Unfortunately blood cancer was not new to us. 

The brochure turned out to be a work of the Blood Cancer Society with economic support from you, from Janssen-Cilag. Thank you ever so much! When we read it we got elated! Knowledge instead of mysteries, reasons for hope instead of reasons for despair! 

Evelyn and I entered the time of curbing the Myeloma. One element every month:  “infusion” of Zolendron syramedac in order to strengthen the skeleton. I lay on a stretcher for 20 minutes while the substance is dropping into a vein. 

I joined the Blood Cancer Society and got a book with 55 instructive pages: LITEN MYELOMSKOLA, “A Small Myeloma School”.  But my symptoms continued as before: pain in the low back, especially when going to bed and rising, zombie-walk and inability to write. However, I began to sleep less in daytime. 

A computer tomography was carried out in May 3 but the report of it did not reached the hematologist until May 23.  My old arthritis in the right hip and leg was still visible but now I had “a Myeloma skeleton” with further vertebrae compressions. 

On May 26 I felt better and made a blog post about my Myeloma. Gradually I managed to walk more, always accompanied by my patron, Evelyn.  On June 20 an encouraging letter from the hematologist: No deterioration! Thus, the extensive blood tests are to be taken every other month instead of each month. We felt relieved: the curbing does work!

n July I started to ride a tricycle. That enables me to keep pace with Evelyn walking. Today my assortment of symptoms is the same but they are weaker – and I have been able to prepare this presentation!  I do thank the Blood Cancer Society and Janssen-Cilag for this challenge. I really needed it. My writing has got a re-start!

Sedan svarade Evelyn på frågor om testerna och medicinerna samt kompletterade mitt anförande. När mötet var slut fick vi frågor och tips av deltagare. En av dem gav det här rådet inför nästa besök hos hematologen: Skriv alla frågor på en lista! 

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