Posted by: janedb | September 22, 2014

The Unthinkable Happened

I returned in May to clinic and was told finally that I was in remission, but it felt flat as I had waited so long to hear this.  A bone marrow aspirate was booked for June. No one wanted to celebrate the news, it was like they knew it was going to be so short lived.

The week after my aspirate was done I received a call to come into the hospital with a case as they want to talk to me regarding my result. The shock feeling  was unbelievable. I had only just unpacked my case as I had been given the all clear. I repacked it  after calling my mum to ask for a lift into the hospital. They were admitting me so she did not stay. I was taken into the quiet room for patients, where it was explained that it was returning in my bone marrow. They explained I would be restarted on ATRA to stop it spreading to my blood, have another chest xray, bloods taken, another bone marrow aspirate and as I was having headaches a lumber puncture to check it had not spread to my brain.

It was strange to find myself in a side room again on Ward 41 after time on the Assessment Unit. It is always like being back home, and nurses and other staff kept popping back into say hello and ask why I was back. They kept getting into trouble as they kept being found chatting to me. No one could believe how well I was taking the news. I just wanted to get through the treatment and to stay alive. For me it was a chance to read books, watch DVD’s and have a rest. I did not want to think what may be around the corner.

I had been intending to go back to work and had an occupational health interview,  but due to stress from everything else in my life this got put back. It was now on indefinite hold as I had no idea what treatment I would require. They were hoping to treat me with arsenic trioxide which they hoped would give me less side effects and I would not go neutropenic. I was told I should not have to be admitted to hospital on this treatment.

Due to my veins being so poor I proved a challenge to the young doctors trying to take blood, but as I had got used to the needles I let them try. They have to learn on someone and better it be me and not someone who finds needles frightening. It is amazing what small veins in the hand can be used when they are desperate.

As I was well they decided to let me go home on Friday and they had booked me in for a lumber puncture the following week. It was nice to go home but I was still unsure what was going to happen regarding treatment.

The lumber puncture proved to be a nightmare. You are not allowed gas and air (Entonox) as you can not keep still whilst you are breathing in and out. The only pain relief you are allowed is local anaesthetic, which if you have had this you will know it stings as it goes into the skin.

During the procedure, pressure measurements are recorded and samples of fluid are taken from inside the spine. The fluid is known as cerebrospinal fluid (CSF).  A hollow needle is inserted into the base of the spine under local anaesthetic. The needle passes into the spinal canal, the channel running down the spine that contains the spinal cord and the nerves that come off it.

I had to sit first on a trolley bed and lean over so they could access my spine, after several attempts I had to lie on my side with my knees pulled up. My back was full of local anaesthetic and in great pain, but they finally managed to find the right place. As they thought the leukaemia might have gone to my brain they also put in some chemotherapy. Thankfully that result came back negative and I did not have to endure that again.

I was sent home to wait for my next bone marrow aspirate in a months time, as they did not want to go straight into treatment due to the side effects it could cause. That was to be a summer of physical pain and mental torture.


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