Category: Transplant Journey

Day 35. It is a few days since I last updated my blog. I find that I am very tired these days. They gave me a booklet on ‘Coping with Fatigue’ at the hospital today. I am too tired to even start reading it. They say that fatigue is very common during cancer and its treatment. As the Queen song goes; ‘God knows, God knows, I want to break free….’  There is a really nice line in the movies, Chariots of Fire when Eric Liddell says ‘So where does the power come from to see the race to the end?, It comes from WITHIN’. I need to tap into this power, so help me God!

My consultant is very pleased with my progress. My regular checkups are now reduced to Tuesdays and Fridays. Probably next week, it might be only once a week, unless I get hit by the dreaded GvHd. My creatanine levels are still a bit on the high side, and it is difficult to keep drinking 3 litres of fluids every day. Any good suggestions? Lesley-Ann came up with a great suggestion to drink soup at lunch time. That is nearly 300ml in a bowl of soup. My corn flakes with milk is another 300ml, orange juice quickly makes up another 400ml and it all add up. I just need to keep drinking!

We had our family Christmas dinner last Saturday night. Lesley-Ann was home for the weekend. Pat cooked a complete Christmas Dinner, with the turkey and ham and I got to open my Christmas presents! We played our board game. Shereen & Pat won and I came last. Now everyone sees me as a liability to partner with on this particular game (Articulate). I am not used to this! It was lovely day. What was important was that it was Christmas for us as a family and the fact that it was not December 25 did not matter. As the song goes; ‘Christmas isn’t Christmas until it happens in your heart, somewhere deep inside you, is where Christmas really starts!’

Today at the hospital, I met with the two cleaners, Joan and Val from the Burkitt’s ward. I was able to introduce them to Pat. They are such lovely people, and I was delighted to meet them as they were delighted to see me. They were very pleased to see their names in my thank you letter. It is amazing what a simple thank you can mean to any one of us. We are often flippant when we say it is the ‘thought that counts’ little realising that this is what truly counts!

Did you see the movie Invictus? I read the book first, it was called ‘Playing the Enemy’. Excellent read! The movie was a bit of a let down. However, I liked a particular poem that they used in the film which I don’t recall from the book. I was searching for it on the web and found that the poem was called Invictus. I finally understood why the movie was called Invictus. Let me share this Invictus poem with you that was a great inspiration to Nelson Mandela when he spent 26 years in prison.

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul.

Children, You are the Master of your fate, you are the captain of your soul. I will leave you with one more quote from the movie, Chariots of Fire. Eric Liddell says; ‘I believe God made me for a purpose. He also made me fast and when I run I feel his pleasure’.

Yes we all have gifts, when you use them you will feel God’s pleasure.

That’s all for now folks!

Day +30, still no sign of the GvHd. Though, I was tired today and spent most of the day either sleeping or watching TV. I got a break from going into hospital. Back there again tomorrow. I am finding it hard to keep drinking 3 litres of water every day. I have tried MiWadi to add some pineapple flavour but now need to find an alternative to keep drinking all this water. My taste buds must be affected as I can’t taste the Alpen in the morning. That is a problem, as a bowl of cereal is about 300 ml of fluids. I am clutching at straws here trying to get the creatanine levels back to normal.

Simon of Cyrene was the man who helped Jesus carry the cross on his way to his crucifixion. The other person who helped was Veronica (her name was actually Sheraphia, the wife of an influential member of the Sanhedran) as she wiped the face of Jesus. What has this got to do with my journey? Whenever we face a crisis, I believe that God will assist us bear this weight by sending us ‘helpers’. This post is about the many people who came into ‘my world’ to help me carry my cross’.

Mary Stevenson is credited for this poem.

One night I dreamed I was walking along the beach with the Lord. Many scenes from my life flashed across the sky.

In each scene I noticed footprints in the sand. Sometimes there were two sets of footprints, other times there was one only.

This bothered me because I noticed that during the low periods of my life, when I was suffering from anguish, sorrow or defeat, I could see only one set of footprints, so I said to the Lord,

“You promised me Lord, that if I followed you, you would walk with me always. But I have noticed that during the most trying periods of my life there has only been one set of footprints in the sand. Why, when I needed you most, have you not been there for me?”

The Lord replied, “The years when you have seen only one set of footprints, my child, is when I carried you.”

Thursday ,April 7, Mike called me to ask me, if he can ask Lesley-Ann to marry him.  I had just arrived from Sri Lanka that afternoon, having watched Sri Lanka lose the World Cup finals yet again and ‘down in the dumps’ when we got this call from Mike. There was great excitement in our house as we waited to hear from Lesley-Ann a few days later, on the Saturday with this exciting news.  Sunday, April 10, we were calling our families and close friends with this news. April 11, 2011, after a routine blood test in the morning, still on a high, when my GP called to say that I should immediately go into the Accident & Emergency ward at St. Vincent’s Hospital as my white blood cell count was very high. We did not wait to switch off the computer or get some clothes together, we just rushed into hospital. We were taken to a mountain top and thrown over the edge! What a cruel joke!  I had dreamt of the day, of walking Lesley-Ann down the aisle for many years, and now it looked like I wasn’t going to be there! This was the lowest point I have ever got to, in my life, when hope turns to despair. When you question the very existence of God. As our friend Anne-Marie said;”it is at these very low times, that you will find the ‘grace of God’; look out for it and remember to write it all down”

The first Angel we met at the hospital was Tanya King from our children’s mass group. Tanya is the Director of Nursing at the hospital and she was just about to go home after work when she met us. Tanya took care of us that evening. It is difficult to put into words the difference Tanya made by just being there for us that evening. She was a gift from God. My ‘Simon of Cyrene’. During the last few months, between April and today, there have been many from our family our friends and total strangers who have helped us bear this burden. Their love, support and prayers have brought us thus far and for this I thank God for all these ‘Angels from heaven’. Some playing the part of Simon of Cyrene and more playing the part of Veronica. The Kris Kristofferson song that comes to mind is; “Why me Lord, what have I ever done, to deserve such even one, of the graces that I’ve received…. Now that I know, I’ve needed you so, help me God ….. Try me Lord, if there is a way I can try to repay, all I’ve taken from you…….Maybe Lord, I can show someone else what I’ve been through myself, on my way back to you”

That’s all for now folks!

Day +28, but who is counting? No sign of the dreaded Graft versus Host disease. The creatanine levels are still high, it was at 122 today up from 118. I got an extra 2 litres of fluid.  Extra fluid will help to bring down this level. My consultant does not seem to be too worried about the level. My platelets seem to be coming down as well. From a high of 180 on Dec 31 it is at 112 today. Again, no one seems to be too concerned about this either. I was a little tired today as it was a long day in the hospital. Not a good idea to go late in the morning as you end up spending the whole day there. We did not leave until 3 p.m.

Dr. Conneally was very pleased with my ‘thank you’ letter to all the staff in the ward. She was particularly pleased that I had thanked all the staff, not just the nurses and the doctors. She mentioned that many of the cleaning and catering staff were with the hospital for over 10 years and that they worked very well together. It really doesn’t take much to be kind to patients, and I wonder why we can’t have this environment in every ward in every hospital. When you are sick, you are very vulnerable, whether it is cancer or any other ailment. The Denis Burkitt ward is a great example of the standard of care for a patient and what a tribute to a great man Dr. Denis Burkitt. A man of great faith. I will talk about him in my next post.

Today we (thousandseeds) had a launch event of the Lean Startup Meetup Group. We were able to convince Eric Ries from Lean Startup fame from the Silicon Valley, US, launch the group. This was a major coup, all organised by my business partner Mary. I did the administrative work from home. The event was a sell out – a big success with over 140 people at it and organised in less than 2 weeks. Eric Ries confirmed on Christmas Eve and we setup eventbrite in early January. I was out of hospital and able to help Mary set this up. I was sorry that I could not be there in person. Rohan was helping with the registration.

Rohan got a lift home with one of our friends, Kevin. Rohan was not happy that I went out to meet Kevin and shake his hand. Amazing how the children are so protective of their dad, watching me like a hawk and making sure that I am protected from any bugs. One of the rules in the house is that everyone must wash their hands when they come in from outside. They follow this routine so religiously.

Talk about religion, I used to ask; “Where did we go wrong with our children?” This refers to their faith. Now, I know for sure, that we have done a good job bringing up the children. They may not fall into the ‘Hail Mary’ brigade and they may be following a different drummer, but they are far from ‘lost’. To quote the final  sentence from the Mother Theresa poem: “in the final analysis, it is between you and God; It was never between you and them anyway!”

I’ve called this post, “To Do or NOT to Do”, this was my dilemma a few months ago. My consultant at St. Vincent’s said that I was in the chronic phase and my consultant at St. James’ had no doubt that I was in the accelerated phase. The only common ground was that both of them agreed that a bone marrow transplant was the best option IF I was in the accelerated phase.  I thought long and hard on whether I should look for a third opinion. But, the problem was that I wasn’t sure that a third opinion would help my decision. While, I did not want to go through with a bone marrow transplant, I felt that I could put my trust in Dr. Conneally’s care. It was a ‘gut feeling’ and I went with it. Once I decided on this course, I decided not to look back, but just to focus on getting through the process. Though I used to constantly question Dr. Conneally and I think I caught her off guard once when I asked her:“How many patients had she lost?”  You should have seen the look on both the doctor’s and Pat’s face as Dr. Connelly tried to give me an answer. I think she just dodged the question and I did not push her for an answer. We all knew that there was about 20-30% risk of failure. Another time, I asked for her Plan B, if Plan A failed. Her reply to this was that she was the A-Team! Great answer! Where am I going with this? I guess only to say that once you decide on the path, then move on. I have seen my brother Shammil say to Rohan on Facebook, Never look back Rohan, unless you intend going that way! Great quote!

That’s all for now folks!

Thank You

Today’s post is a thank you to the doctors, nurses and staff at the Burkitt’s ward in St. James Hospital, Dublin, Ireland.

First an update. It is Day +25, a quarter of the first 100 days are behind me. My blood counts are stable. The only issue is my creatanine levels. It came down to 108 yesterday, but at the same time my ciclosporin levels also went down to 69. Therefore they had to increase my dose from 150 to 175. It is the ciclosporin that causes the creatanine to go up and this increased dose may have an impact. I’ll know if this is the case tomorrow, as I have to go into hospital for a checkup. Over the weekend, I have to go back to the Burkitt ward instead of the usual day ward during the week days. It’ll be nice to meet some of my care givers from my four weeks there. I will take a thank you letter and some chocolates for the staff in the ward.  The letter will read as follows:

Dear Dr. Conneally, Dr Browne, doctors, nurses, cleaners, and staff in the Burkitt’s ward at St. James Hospital,

I have been writing a thank you note to you for the past week but it has been difficult to convey in words my grateful thanks to all the staff in the Burkitt’s ward. The best way to convey this is to first say thank you and then sharing my experience in the ward with you.

Thank you to Dr. Conneally for being part of the A-Team. I liked your direct approach and saying it as it was without ‘beating around the bush’. The best part of it was that you always had the time to explain everything in detail to satisfy my curiosity.

During my four weeks in hospital I met with at least 21 of the 46 nurses, and while I can’t remember all the names, thank you for your care. The first nurse in charge of my care was Martha, and very quickly she put me at ease on the first day, which set the tone for the rest of my stay. Martha was followed by Mary, who was equally as pleasant. Meeting Martha & Mary meant that I was Lazarus and that too was another sign from above that all will be well.  It was great to meet with Susan who also enjoyed talking about cricket. I have lived close to thirty years in Ireland and very rarely get the chance to talk about cricket. I was Marie’s first transplant patient and thank you for doing a good job. I hope you enjoyed your vacation in New Zealand. Susan, hope you enjoy your stay in Australia. Thank you to Martha, Mary, Marie, Susan and all the other nurses who took care of me.

Thank you to the ladies who brought in the meals. I used to love seeing Leonie with her very big smile and a hearty good morning with the breakfast. I hope you enjoyed your two week break in the Canary Islands! Thank you to Joan and Val for cleaning the room and always being very positive about everything. Thank you to John, Gus, Ahmed and the rest of the staff for changing the sheets on a daily basis and always checking in to see if there was anything I needed.

I spent four weeks in a room, never going out, only meeting the staff and my immediate family and I never felt lonely, sad or depressed during my stay in your ward. The only negative emotion was that of fear and somehow you were able to put my mind at rest. It was an amazing experience, where ALL the staff worked as a unit and made my stay in hospital a very comfortable one. Thank you.

If you’ve seen the movie Patch Adams you’ll know this quote; “Transference is inevitable, every human being has an impact on one another …. You treat a disease, you win you loose, but you treat a person, I guarantee you, you win whatever the outcome” As an unit you treated the person ‘Raomal’ and for this I thank you All, the doctors, nurses and all the staff.

Once I am ‘out of the woods’ and back in action, I would like the opportunity to help you in some way, whether in fund raising or in some other way. Please ask!

Thank you and God bless you!

Yours sincerely,

Raomal

It is my new found freedom at home that has prevented me from updating my blog. We take home life for granted, it is only when we lose that, we come to appreciate the benefits of such bliss! I am treated like a King, waited on hand and foot. Some of the benefits of being sick I guess. The children have created a no fly zone around our house. i.e No one is allowed in. They will probably enforce this rule for a few weeks. This is fine by me as I am used to isolation but very conscious on the impact on the rest of the family. Our house has always been a bit like grand central station with a stream of friends in and out at all hours of the day and night. We need to find a happy balance without taking any undue risks of picking up any bugs while my immune system is low.

The blood counts are back at normal levels. However, the drug ciclosporin continue to increase my creatanine levels which means that they have to keep a close eye on my kidneys. I read the leaflet on the ciclosporin drug and its potential side effects. This is not for the faint hearted. The very common side effects range from kidney problems to high blood pressure to the less common ones such as liver problems to more serious issues best not to spell it out here!

It is awhile since I last wrote about a specific topic. I thought I’d share my views on my ‘preparation for the battle’. This is my journey and if you are in a similar boat, I hope that this will help you as much as it has helped me.

It is fair to say that it has been an easy ride for me so far. There are a few hurdles ahead of me and I will have to deal with them as they come. Last Tuesday, the man next to me in the day ward in the hospital who is an AML (Acute Myeloid Leukemia) patient said that he was hit with the Graft-versus-host disease (GvHd) two months after the transplant and that it was very tough going. A year and a half in hospital so far and he did not look too good. Well, we will have to cross that bridge if and when we get there.

I think there are four areas in ones life one should take care of. By the way, there may be more and I’d love to get your comments on this. The health of community life, your physical health, your emotional health and your spiritual health.

My weakest area is my community health. In some parts of the world they say that it is the duty of the community to bring up a child. My weakness is more than made up by Pat, whose strength is to connect with people. One of the major challenges during our courtship years was my constant insecurity of having to share Pat with a countless number of people, ranging from the old man who lived a few doors away, to the church group, to her friends in the garden centre to name a few. I have now come to realise what an incredible asset this is to have a community that supports you in a time of need. The real value of going to church, is not the time one spends in prayer, because you can do that at home, but in meeting with people and talking to them. I will have to train myself to do this!

My total lack of exercise has put me in the ‘obese’ category. I am not one to lecture on the benefits of taking care of ones physical health. However, before the transplant, I went on an ‘alkaline’ diet, giving up sugar, milk, bread and the result was that I was able to control my weight and give up my reliance of drugs to control my high blood pressure. Yes, I no longer needed to take tablets to control my blood pressure. I think I was in as a good a shape as I could possibly have been when going in for the transplant.

I had come to accept both my disease and the inevitability of going in for the transplant. I was very positive and I think in great shape mentally. While I was afraid of the unknown, I was not stressed out about it.

Finally, I think I was in good shape on the Spiritual side of things. While I did not pray for healing myself, I believed that there were many people praying for me. It is difficult to pray for one’s own self but I was comforted by the knowledge that both my family and friends were most certainly bombarding heaven on my behalf.

It was like a perfect storm, all four areas of health were aligned so well that it carried me through the four weeks. You may have read the ‘footsteps’ poem. It was just like someone carried me through the storm.

If you are going into battle, it is probably a good thing to consider these four areas of health.

That’s all for now folks!