Chapter 19 – Setback #1

Without setbacks and mistakes, no experience. Without experience, no learning. And without learning, you’ll never truly understand the awakening of your heart’s desires.
– Robbie Vorhaus

I was still riding high on my remission wave when I noticed pain a few days later.

It was a tingling along my back, shoulders and groin and it was like nothing I had felt before.

I ignored it for a day or two but by Monday 1 October 2007 it was painful enough to force me to call the doctor.

I was still on a lot of medication at that stage:
– tablets to prevent viral infections and fungal infections
– calcium tablets
– a small daily dose of Thalidomide which acted as a maintenance treatment
– one or two other tablets

I wondered what it could be considering I was on so much preventative medication. I thought it might be a flu coming on.

My GP examined me and announced that I had shingles.

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I was taken aback by the diagnosis as I was on an antiviral treatment which should have prevented it. On the other hand, my system was still coming right after the transplant and I was more vulnerable than I thought.

Dr Michael rang the hospital and spoke to someone in haematology so as to share my diagnosis with them. He gave them his idea for treating me and they agreed and said they would be in touch.

I went home to rest. I was sitting on the sofa with Emma at 4pm that day when my mobile phone rang. It was one of the nurses from the haematology day ward ringing to tell me I needed to be admitted to hospital immediately.

I was devastated to be going back so soon. Emma got all upset by the news and I did my best to reassure her. She was just getting used to having me home and I was going again.

We made arrangements for Cathal to stay with his minder and once again Bryan, Emma and I headed off to hospital.

I was in a lot of pain and discomfort so I knew that I was going to the right place to be looked after.

Once I was settled in hospital I sent Bryan and Emma home and waited to see the doctor.

I was put on a drip and charted for pain meds and anti viral meds. My doctor came to see me and explained why they had admitted me. It was because I was just over the stem cell transplant and they were worried that the shingles could spread to vital organs. And to think I thought it was just a rash.

I had a terrible night of pain and itch right across my back and shoulder and spreading to the groin. It was just as well they had admitted me as I was able to get the right pain meds.

The following day they started me on an immunoglobulin product which would boost my immune system. It was decided that I would have it once a month until such time as my immune system got stronger.

At home the kids were missing me – again!
And the house had been turned upside down by me – again!

It was all so frustrating but I had to just lie back and get better.

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I spent a week in hospital and on discharge I was told to take it easy. Gently and slowly were the words to live by.

The pain from the shingles stayed with me for weeks and ultimately they meant a setback for me on my timeline of going back to work and to life.

It would mean no return to work for me in 2007. That was difficult to take in as I felt it would have been good for me to get back to work in the same calendar year as I got sick.

I had a long chat with my consultant and she told me that they average recovery time from a stem cell transplant is six months. By that schedule I was pushing things a bit by forcing myself to be ready before time.

I relaxed a bit after that and decided it would have to be a day/week/month at a time.

I got over the setback and got home to the family again. In total in 2007 I spent 10 full weeks in hospital …. I was hoping that I could get to 2008 without spending any more time there …

Only time would tell.

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