Friday 13 July 2007 and Friday 13 July 2012

Friday July 13 2007 = THEN 

[This next piece was written like a diary entry from Big Brother so you must use the voice of the BB narrator to get the proper effect]

Day 9 in the stem cell transplant house. Brenda woke and discovered that the foot fairy had been in during the night and had given her a manicure with Chanel Rouge Noir nail varnish. I feel like crap but I have the best looking toes in the hospital.

8.45am brenda’s head is in a basin again, she is vomiting!

8.59 am The newest arrival in the stem cell transplant house is a nosebleed. Brenda is however, relieved as the bouts of explosive diarrhoea have stopped for the past two hours.

9.02am Most of Brenda is in bed! This week’s task in the stem cell transplant house is for Brenda to stop vomiting and to keep tablets in. So far Brenda is failing the task and she will have to survive on a ration of sips of water for the next week.

10.10am Brenda is vomiting again

4.00pm Brenda is vomiting again and the explosive diarrhoea has returned.

12 midnight – Just when you thought it was safe to go back in the stem cell transplant house – Brenda is vomiting and has diarrhoea again.

I know I was making a joke at the time, but it was a combination of hysteria and desperation for a change in my physical state. In the middle of it - it was not at all funny or pleasant, but you do what you do to get through it.

Friday 13 July 2012 = NOW

I am still in Germany. Cologne is fantastic and there is loads to do. If only I wasn't at meetings all day and evening. Still we are going to Bonn today so the change of scenery will be nice. 

Bonn is really beautiful. So full of greenery, it is a bit like Ireland. We drove along the motorway which runs alongside the River Rhine. 

I am really enjoying seeing another little corner of the world that I have not visited before. I will definitely [hopefully] come back.

Guten Nacht

B xx

Thursday 12 July 2007 and Thursday 12 July 2012

Thursday 12 July 2007 = THEN 

Had long chat with my haematological consultant today and she told me that she admires my spirit. It’s a bit of a comfort but I feel like I am in hell right now. All I want is the vomiting and nausea to stop. They are trying everything to make it stop but it just won’t.

Really bad at 6.00am

Really really really bad at 10.00pm 

Thursday 12 July 2012 = NOW

Woke up in Germany after the best night's sleep ever. It was a combination of the remote control black out blinds in the room and the fact that I was on the go for two full days without sleep. Felt refreshed and ready for my meeting.

Jarred my back at the gym last week and may have done something. Flying does not agree with me either as my hands and feet are numb today - that is the neuropathy or nerve damage from the thalidomide that I had to take for nearly two years. But it worked, as I am still here.

Busy day. Lovely company and great food. Fantastic to be well enough to savour and enjoy it all.

Onwards and upwards.

B xx

Wednesday 11 July 2007 and Wednesday 11 July 2012

Wednesday 11 July 2007 = THEN

(I am *neutropenic from today) *this means no ability whatsoever to fight infection

Today marks my first week in hospital and I feel so very tired. I feel as though I have run a dozen marathons. I still can’t eat, can’t stand the meal trays even being in the room. Today I can’t watch any food programmes on telly and Bryan has been banned from talking about any food when he comes to see me.

I was moved from Room 33 to Room 22 today – I think they are moving me closer to the nurses station. Oh oh.

I saw my kidney consultant today and she is happy enough that my kidneys are holding their own. There is no talk of dialysis yet which is a huge relief.

For some reason the Bruce Springsteen Song If I Should fall behind is playing in my head all day today – If I should Fall Behind….wait for me ….

Wednesday 11 July 2012 = NOW


I did not sleep at all last night as I was on a 6am flight out of Dublin for a work trip to Cologne. It is weird to read back about how sick I was this time five year's ago and today here I am in the air on the way to Amsterdam and then Cologne. This day five year's ago I could not make it to the bathroom by myself!

The freedom is great. Being cooped up in hospital is a terrible feeling, especially when there are so many unknowns. I really do appreciate being well again and being free [for now] of hospital stays. It just upsets so much in day to day life.

It's one of the many small things I am grateful for.

Now off with me to Germany.

B

Tuesday 10 July 2007 and Tuesday 10 July 2012 Then and Now

Tuesday 10 July 2007 = THEN

Too sick to write

Tuesday 10 July 2012 = NOW

I was far too sick to write anything down the day after my transplant back in 2007. I was too sick to even write the number of times I was too sick. There were so many questions and wonderings going on in my head. 

Now five years later, there are of course, loads more questions. How long will the remission be is the main one? Will I have to have another transplant? That would be horrific, but I know I will do it when I have to. I have more stem cells stored in St James's Hospital, in case I need them. 

I just hope I don't need them anytime soon.

B xx

Monday 9 July 2007 Transplant Day and Mon 9 July 2012

Monday 9 July 2007 = Then 

Today is day five and the final day of the initial stem cell transplant process. It's D Day or T Day.

Vomited at 5.45am

Vomited at 9am

Discovered a bug in my line so more antibiotics

Vomited at 1.30pm

Today is all about my beautiful, clever little stem cells that are stored over in St James’s Hospital. Today is the day for them to shine.

We left Tallaght Hospital – a nurse and I by 11.20am. We met the team in St James's – some of the faces are familiar. I was taken into a cubicle in the haematology day ward and a set of observations were done on me. My chart was handed over from Tallaght and there was a chat, a very important chat.

A doctor had to prescribe my own stem cells for me. It seemed strange that someone had to actually prescribe for me what had actually come from inside me – but there are important rules and protections in place which are so stringent and important.

Next thing what I can only describe as a little metal Dalex (like in Dr Who) was wheeled in by a lab technician with a trail of dry ice coming out of it. The contraption was opened and my bags of stem cells were taken out. They were warmed up (defrosted really) in a bath of warmish water.

 At 1pm the transplant began. While it is called a transplant, there is no surgery involved at this point – it’s like receiving a blood transfusion, except it’s a lot faster. There were three bags for me to have and they took fifteen minutes each to go in through my central line in my chest. The transplant was done – finished by 1.45pm. I threw up in the middle of it – nothing to do with the transplant – it was the ongoing effects of the melphalan chemo.

I had to hang around for a couple of hours before I could go back to Tallaght, so as they could make sure my vitals were okay and that I wasn't having an adverse reaction to the preservative that is used as part of the mixture of cells. 

Bryan arrived out from work and was there for some of the transplant. It must have felt good for him to see this famous transplant happen!

All was well and in the early afternoon I was whisked back to Tallaght Hospital by ambulance. I was feeling pretty sick at that stage.

While the procedure is called a stem cell transplant – it is actually more like a rescue for the body. My bloods had been knocked out, wiped out by the chemo and if I had to wait for my body to recover by itself I would be susceptible for a very long time to life- threatening infections and to other complications. My stem cells were hopefully about to rescue me from the effects of the high dose chemotherapy.

A good day full of hope but still full of sickness, nausea and fear too.

Exhausted.

Ends

Monday 9 July 2012 = Now 

I was up early and worried about my back. It still feels very sore. Bloody exercise! I am hoping the heat pads will sort it as well as taking it easy.

I left for work and my stem cell cake was waiting for me. It was made by a friend of mine and it looks amazing [see pic]. The plan was to have it at break time but it didn't work out. Someone had passed an exam and there was already cake and goodies - so I was gazumped! 

Instead I brought my cake home and cut it here with the family. Probably nicer to have done it at home but it would have been nice too to share it in work. Maybe it will work out for my 10th anniversary!

It's hard to believe that five years have passed. This time five year's ago I could not imagine getting through five days or five weeks, never mind five years.

I am so grateful to all those people who have supported me and been with me on this journey over the past five years. 

I am off now to have a slice of my cake and a glass of bubbly. Here's to five year's down and hopefully many more to come.

XX

Sunday 8 July 2007 and 2012 Then and Now

Sunday 8 July 2007 – Then

Today is day four of the stem-cell transplant process

Vomited at 8.30am

Diarrhoea at 6.45pm

Vomited and diarrhoea at 7.30pm

I continue to be nursed in isolation as my blood counts are on the floor – I can’t clot blood, I can’t fight infection and I have open sores all over the inside of my mouth.

Tomorrow is the day – transplant day. I don’t know what to think or feel. I am so weak from vomiting. I haven’t eaten since the 4th July – only four days but my energy is at zero, because of everything that is going on inside me.

I am on so many different things through my line – food or fluids, antibiotics, anti-sickness tablets, a bag of glucose, a bag of anti-fungal meds, more antibiotics, some bottles of fluid to give back to my system what I am losing through the chronic diarrhoea. I am on four different mouth washes which are just killing me as my mouth is raw and putrid! I can’t brush my teeth.

I have no energy to write anymore tonight.

Miss the kids. Miss my life.

Ends

Sunday 8 July 2012 = Now

I was I pain this morning when I woke up. It’s my back. I am clearly not able for the workout I did yesterday. I was very tender all day and I am sitting down now with a heat pack. The back and spine have to be watched carefully as one of the things that can happen with Myeloma is the spinal bones collapse and disintegrate.

I hope I will be better tomorrow and for now I will have to suspend some of the workout and stick to the pool.

It is so frustrating. One step forward and myeloma drags me back to square one. Feckin myeloma.

Despite the pain, I am glad to be here and to be out and about walking around.

Saturday 7 July 2007 and 2012

Saturday 7 July 2007 = Then

Today is day three of the stem cell transplant process

Vomited at 3.15am

4.30am – woken for blood culture to rule out infection in my system

5.05 am – new antibiotics put up through my central line

5.15am – anti nausea pump inserted into stomach – I will have this long term.

Vomited at 9.45am

Vomited at 6.25pm

Vomited at 8.30pm

My best friend Sara came into see me today. She’s great. She stayed for three hours and we had a good natter and catch up. I was sick of course and she just let me do it and then helped me clean myself up. She brought me a lovely notebook and pen which is lovely.

I have become obsessed with fruit and fruits juices. It is the only type of food or drink that I can think about or look at without wanting to throw up. I have started to write poems about fruit. Then I saw a competition in a magazine to come up with a new flavour drink in the Club Source range. I have spent ages working fruits together in my head and eventually have come up with several different variations and names.

Ends

Saturday 7 July 2012 = Now

It’s very strange reading back over my diary from five years ago. I have come such a long way and yet it’s always there and will always be there hanging over me.

I went to the gym and did an hour-long workout and I survived it. I went for a half an hour swim afterwards. I feel okay – a bit sore. Hopefully I will feel ok tomorrow.

We decided a meal would be a nice way to celebrate so the four of us went out for thai food. It was yum. This time five years ago I could not even look at food. It’s great to be able to be able to face food again and to enjoy it.

Back feeling a bit sore just before bed. Fingers crossed.

Ends