Posted by: janedb | April 4, 2013

First month of treatment

I was started an all-trans-retinoic acid (ATRA), (a strong dose of vitamin A), a capsule that is classed as oral chemotherapy. There was discussion about being placed on a trial where I could receive arsenic instead of chemotherapy.  Unfortunately for me at the time of being diagnosed there was a world shortage  of arsenic and the trial was closed.  If I had been on the trial and had arsenic it would have had less side effects.  At the time I joked that it was due to wives wanting to murder their husbands.

I was given a bone marrow test in order that they could confirm their diagnosis although my blood smear showed the typical cells present.  Luckily I was given gas and air for this.  The doctor doing this had to get a colleague into aid her as she could not get part of the bone and by weird coincidence the doctor who came into help was the same doctor who used to perform these   these tests on my son when he was going through his treatment.

I therefore had to go down the chemotherapy route. The chemotherapy I was given was dangerous to my veins and could cause amputation if it leaked out of the vein, I was therefore cannulated in the hand so that if it went wrong there would be less to amputate. Scary to hear but the staff were excellent and very caring. I was very scarred of needles when I was first admitted and the doctors were excellent at dealing with this. I had a PICC line inserted (a permanent tube in the arm to allow medications to be put in the vein and blood to be removed for tests. I was unlucky that it stopped working after its first use for a platelet transfusion and had to be removed.

Unfortunately I had a reaction at the start of my treatment, differentiation syndrome which caused me to have severe pain in my chest, require oxygen as breathing hurt and need morphine.  To counteract this I was given strong steroids to get me over this as I needed to keep having the treatment.  The steroids caused complications which were unknown at this stage.

Although the blood transfusion and fluids had made me feel better than I had for weeks, the steroids started me on a decline.  When my doctor came in to see me from my GP surgery I was so out of it on morphine I could not hold a proper conversation with him.  Whilst in this state I also had to choose my free NHS wig, all I can advice is do not make any choices whilst on morphine.  The wig looks dreadful but my youngest son enjoys looking like the men out of the 118 ad.

By week three of the treatment I had severe diarrhea which was black, at the time I had no idea of the significance of this and did not make my doctors aware, although the nurses were aware as they were having to help me clear up. After several days of using a commode by the bedside and getting more upset I was transferred into an isolation room in case I passed anything on to another patient. The diarrhea was that bad that I still required a commode at the side of the bed as I could not make it to the on suite bathroom. I seemed to be permanently on a drip of fluids.  After a week a student nurse took a sample of the diarrhea to send off and that was when it was discovered I was passing blood.  During this time I had stopped eating and just drank water as my stomach was in agony if I ate anything. It was then discovered I had had an ulcer which had burst.  I was given blood transfusions and a drip to stop the acid in my stomach. I was sent for an endoscopy to check that the ulcer had gone and put on lansoprazole to cut down the acid.  Luckily the ulcer was no more .

It was then decided that I was not infectious and could be moved onto a bay.  This proved to be a mistake. My diarrhea continued though it was back to a more normal colour.  When a sample was sent it came back that I was positive for the Norovirus (severe sickness and diarrhea) which is very infectious.  The bay I was in was then closed and the ward was shut down to new admissions to  stop the spread of the infection. Visiting hours were then reduced for the protection of visitors. I was then confined to a bed space and had to use a commode with just a curtain to screen me from every one on the ward.

On several occasions during that month the doctors had said if you are well we hope to be able to let you out for a few hours at the weekend.  Every time the weekend came something had gone wrong so it did not happen.  Mum stopped telling the boys that I would be home for a visit.

My breathing had become so bad that part of my lung collapsed and I had to have physio to help my breathing improve.  I was given exercises to get me moving  but it was difficult as I only had the small space round my bed.

Finally after a month in hospital I was well enough to go home for a rest before treatment began again.  As I had been bed bound for the best part of a month I had to re learn to walk and was walking like a zombie.

The one thing I learnt about myself was that I was a control freak.  I had had to be to protect my boys in the circumstances we were living in, but also to keep their lives as normal as I could.  I now had to let go and let the doctors have control in order that I could beat this.  That was the hardest thing to do.

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Responses

  1. Oh my. It’s like that horrible children’s song: she swallowed the spider to catch the fly. All this threat to life and limb coming one unpleasant surprise after another. Your will must be powerful to withstand disease, ulcer, infection, virus and so on!

    • I went to see my GP as I wanted to stop taking my anti depressants and he said I have a strong body. I am writing for closure for me but also if I can help anyone else out there who is struggling.

  2. […] First month of treatment (butterflyjane.wordpress.com) […]


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