You only live once but if you do it right once is enough – Mae West
Harvest time is traditionally a time when you reap the fruits of your hard work and labours. For me harvest time meant something entirely different. Harvest time for me was the beginning of a process, one which would hopefully free me from myeloma and give me some hope at having a quality of life for the immediate future.
Harvest time for me meant that my stem cells would be harvested from within my bone marrow, they would be frozen and then in a few month’s time, they would be the magic medicine that would rescue me from the high dose chemotherapy.
It all sounded so complicated and a little frightening.
I was to be admitted to hospital some time on the weekend of 19/20 May 2007. I decided to make the most of the weekend so on the Friday I went to see my work colleagues. It was nice join them for morning tea break. I hadn’t seen them since the previous December.
After tea we had a community Mass and during the ceremony I received the Sacrament of the Sick. I struggled to keep it together during the ceremony as it is such a powerful Sacrament and I had never received it before. I failed miserably at keeping it together, but it was okay to not to be in control at that moment as I was in a place where I was loved and it felt like a safe space to just let it out.
I had to go to my home town of Belturbet in Co Cavan that weekend as it was the first anniversary Mass of my beloved gran who had passed away in May 2006. The family was converging on the home place and I wanted to be there too. I was taking a chance going up on the Saturday as I was more than likely going to have to present myself for admission to hospital on the Sunday. I was to call the admissions line first thing on Sunday to see if they had a bed for me. If they did I was to get to the hospital by early afternoon. If they had no bed, I was to go to the day ward on the Monday morning. Just before Mass on the Sunday, I called the hospital and they had no bed for me. I could relax a bit and hang around for the anniversary Mass and dinner. My mum was to travel back with me as she was going to look after the kids for us while I went through the harvest process.
It was a Sunday full of all the feels as they say! I miss my Gran so much and while I would have loved her to be still with us, I was glad she was spared seeing me going through such a serious illness.
We left Belturbet for the trip home on the Sunday evening.
I am letting my journal take over from here:
Monday 21 May 2007 (Day 1):
Bryan went off to work early this morning and will meet me later in the hospital. Cathal wasn’t awake before I left and I was glad as it would have broken my heart to say goodbye to him again. Mam and Emma were in the kitchen making tea when I was leaving so I gave them a hug and said goodbye. I packed the car and as I closed the front door of the house, I burst into tears. I cried for most of the drive to the hospital and I was glad that the traffic was awful as it gave me more time in the car with just me and my thoughts and fears. By the time I arrived to Tallaght Hospital I was feeling calmer.
Upon arrival into the day ward I was met with the usual good humoured and smiling nurses. They put me into a cubicle with a bed and told me to rest up. They put some fluids up for me and I was asked to change into a hospital gown.
For this part of the stem cell treatment I was to have a central line inserted into my chest. This would allow the chemo to be administered and to allow access for the extraction of the stem cells. It would also allow access during the transplant process and would hopefully stay in for a number of months. It would be stitched in place in my neck and the tube would protrude from a small incision in my chest.
Bryan arrived to the hospital just in time to see me off to the surgical unit for the procedure. I was awake for it and while it got quite messy, it was over and done with very quickly. I had X –rays to check for good placement of the line and I was sent back to the day ward. I was given more fluids and told that I could eat whatever I wanted.
I was nervous about eating as I knew the first dose of liquid chemo was due. It arrived and was loaded into a bag of fluids and that was the start of the two week process of stem cell harvesting.
I looked at the bag of poison going in through my veins, thinking, there’s no going back from here now. I was moved up to the ward and waited all day in dread for the effects of the chemo. I suppose I was going on what you see in Hollywood movies – the drama of the female lead as she is sick and yet she still looks amazing.
I had an okay evening although I was very sore from the surgery.
Bryan went home and left me to rest.
Day One = not too bad.
Tuesday 22 May 2007 DAY 2
I had a horrible day. I was off my food and spent the day feeling sick.
I got a TV into my hospital room and spent the afternoon watching re-runs of Greys Anatomy. It seemed a bit ironic to be watching a hospital programme while sitting in hospital but Mc Dreamy is always good for the morale.
Here comes a science bit about the stem cell treatment:
The chemo suppresses the immune system. Each day I get a growth injection.
Bloods are monitored every day and then on day 7 there is an early morning special set of bloods taken to check the counts to see if the levels are right for going for harvest.
Once the levels are right I will be taken to Saint James’s Hospital for a minimum of one and a maximum of three days of harvesting.
The stem cells are being tricked into the blood system where they can be harvested and collected. It’s a more efficient way of doing it than having to bore in through the large bones and to collect the marrow.
My stem cells may not ever mobilise and we may do all of this preparatory treatment for nothing. There is a lot of tension these days but it has to be done to exacting standards.
Wednesday 23 May 2007 DAY 3
At 1.30am this morning the nausea turned to sickness. I could not make it to the bathroom as I forgot I was wired up to the drip stand. I was pretty miserable all night and feel exhausted today.
I have a lot of pain around the surgical site and in my neck and my back feels like someone is kicking the crap out of me constantly. That is most likely being caused by the stem cells trying to mobilise and is a good sign I am told.
I threw up again at abut 3.00pm and just lay around for the afternoon as I was sick and tired.
Liz came to see me and she was not happy that I am so sick so she has arranged for me to have something for the sickness. Cyclizine is my new best friend.
I still have hair. I am not sure what I was expecting but it’s probably a bit on the dramatic side to think that I am going to just wake up one morning and leave all my hair on the pillow behind me.
Thursday 24 May 2007 DAY 4
I slept very well last night. I woke up with a feeling of relief this morning that I had not been awake vomiting during the night. The anti sickness medicationss are doing their job.
Dinner arrived but I wasn’t able for it. I was able for some jelly and ice cream though but only after I did that scene with the jelly from Jurassic Park.
Saw Dr Enright today and she is happy with how things are going.
Emma was able to come into see me and she was full of questions about my central line and the drip etc. I know she is lonesome for me as I am for her.
Cathal phoned me tonight before he was put to bed. He said WHERE ARE YOU MAMMY? I MISS YOU? Well I thought my heart was going to break listening to him.
Friday 25 May 2007 DAY 5
I had another good night last night.
I spoke to Mum today and she was telling me that Emma was issuing Cathal with warnings and advice about my line and that he will have to be so careful when ehe is on my knee and that he can’t be pulling out of it. He was so serious and said NO I WON’T. God bless his little head having to take all this in.
I had an okay day. I am still on the anti sickness medications and trying to eat but I am not managing to do anything other than pick at the food.
Saturday 26 May 2007 DAY 6
I am hopefully being allowed out for a few hours today. Bryan arrived with the kids to bring me home. Cathal was a little bit shy but very happy to be getting me into the car with him.
We had a lovely day at home and I was worried about having to say goodbye to Cathal when I was leaving but he was fine as he had a visual of where I was going and knew I would be back the next day.
Sunday 27 May 2007 DAY 7
I felt really bad this morning. Headache and backache and I came very close to telling Bryan just to go on home without me but then I knew the kids would be so disappointed so I took some paracetamol and we headed home for the day again.
We took a quick trip to the shops for some goodies for me for the week ahead and got Pauline McGlynn’s new book.
I got a lift back to the hospital from my sister so as to save Bryan having to go up again. I was exhausted and was asleep early but only after watching Alien Resurrection.
When I got back to the hospital there was a big sign on my door NEUTROPENIC which means I have no cells left to fight infection and I most likely should not have been let out of the hospital. It means the chemo has done its job and we are on track for the harvest. My window and door must be kept closed from now on and visitors must report to the nurses station.
Monday 28 May 2007 DAY 8 FIRST BLOODS SENT TO JAMES’S
At 6.00am on the dot this morning a doc arrived to take the bloods which will be couriered over to Saint James’s Hospital to be checked for the ‘levels’.
I sat waiting all morning and got work just before lunch that today is not the day. The doc came in and said that I am doing well for Day 8. For some reason I heard the big brother voice – DAY 8 in the stem cell harvest house. I almost burst out laughing. It’s the hysteria settling in now.
Dr Enright was in to see me also and she is happy with how things are going. They are keeping a close eye on my kidneys too but they are doing okay.
In other news and in a bizzarre weird sketch from Little Britain, I picked my wig sitting up in my hospital bed today. I had told them to bring in some blonde and red ones but they arrived with boring brown. Overall it was an unpleasant experience as the person seemed to think the only reason I was interested in a wig was for self-esteem! Eh no!
Tuesday 29 May 2007 DAY 9
My bloods were taken really early this morning and sent off to Saint James’s Hospital. There is no going back to sleep once they arrive in for the bloods. It didn’t help this morning that the doctor and the male nurse had a disagreement about whose responsibility it was to get the blood to James’s. This is not what you want to be witnessing when you are nervous enough about things being done right and to order.
It’s Day 9 in the stem cell harvest house. It was a very long morning until I got word at noon that today was not the day for harvest either.
I had no visitors today as I asked Bryan to stay at home as he is working tonight.
I am beginning to wonder if my stem cells will be ‘harvestable’ at all. I have bats in my stomach where butterflies should be.
Wednesday 30 May 2007 DAY 10
They were late taking bloods this morning and I was really panicked as I don’t want any mistakes or anything to happen which will impact on the outcome.
In the end I had to have the doctor paged to come and do it.
I was nervous all day and there was no news at all about the results. Meanwhile I am in agony with pounding pain in my head and all over my back. The stem cells! Please let it be the stem cells doing their thing.
The actual big brother show starts today on TV. I can’t put myself through that so I am skipping it.
I got word very late today that I am ‘harvestable’. They have checked and rechecked and my clever little stem cells seem to making themselves heard and seen in my blood so I will be sent for harvest tomorrow to Saint James’s.
THURSDAY 31 MAY 2007 DAY 11 HARVESTING DAY ONE
We left Tallaght Hospital very early this morning by ambulance and headed for Saint James’s Hospital. I was accompanied by a nurse from Tallaght who will take care of my transfer and will monitor things for Tallaght while I am in James’s.
I had already met the team who were looking after me so I felt right at home. I had bloods taken and vitals checked and within an hour I was on the machine. The machine is attached to my two lines – one line take the blood out and puts it through the machine. The machine detects and then grabs the stem cells. They want a total figure of 6.5m from me from harvesting and they would like enough stem cells for two transplants in the future.
Once I was put onto the machine I could not be taken off until the day of harvesting is done. I have a portable toilet (lovely) and a team of three people looking after me.
We only get one chance at this so it was very important that everything went to plan.
It was a very long day. I was given anything I wanted as food and had to drink plenty. I was feeling pretty miserable all day as the pain in my head and my back was excruciating.
After a couple of hours on the machine I started to feel very strange. My hands went into claw shapes and I could not straighten then. It was very frightening. My system was reacting to all my blood being removed and my claw hands were rectified with a quick infusion of calcium. Panic over.
I had to be closely monitored.
After another few hours I was finished for day one. They did not know at that stage if I would need a second day as they needed to analyse what they had taken from me. I was collected by ambulance and taken back to Tallaght hospital where I promptly vomited (again). I think it was thr stress and the trauma of the day and worrying if my stem cells were viable.
A few hours later I got a call from James’s to tell me that they had successfully harvested stem cells to the tune of 3.86 and that they would definitely require me for another day of harvesting.
I was so relieved that the stem cells had done their thing and that my transplant was going to take place.
Friday 1 June 2007 DAY 12 of harvest
Harvesting Day 2
We left the hospital early again this morning, this time by taxi. I had an agency nurse with me today. It was different being with her as she didn’t know me nor I her. She was very quiet the whole time and asked for some reading material from the transplant team at one point.
I made a stop off at the shop for some papers and some goodies and we headed up to the harvesting suite in Saint James’s. I was hooked up almost immediately and off we went for another day. We had good banter and as I sat journaling, the nurses asked me to make sure to include them in my book when it was done.
The day of harvesting was long and endless. You have no privacy which is understandable as they are watching you, watching the machine, watching the stem cells and keeping everything together. I was on my own in the harvesting suite for the day.
My sister had arrived from the UK and I was hoping to be able to see her and her daughter but it all depended on how things went.
I was finished by 4pm and they called an ambulance for me. I was taken back to Tallaght Hospital and checked over. They were happy with vitals but insisted on watching me for a few hours. I asked my consultant if I could go home for good that night and after much persuasion she said it would depend on whether I was needed for another day’s harvesting.
I got a call from Saint James’s at about 7pm to say they had reached their target of 6m plus and that I would not be needed for another days’ harvesting.
I was so happy.
My clever little stem cells had done it and had mobilised to the tune of more than 7million. I was the 7 million dollar woman at that point.
My sister arrived in for a visit at about 9 and I was sitting up on the bed all packed and ready to go home. She was not expecting that.
I was allowed home under strict instructions that I was not allowed to do anything for the weekend and to take it easy.
I was wired to the moon at that point. I felt like I could do anything and win……..
It was lovely to be back at home with Bryan and the kids
The relief was unbelievable as sometimes despite all the efforts, a person’s stem cells will not mobilise.
As I faced into a period of rest before my transplant, I was full of hope for the future and for the really serious phase of the transplant.