We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face. We must do that which we think we cannot.
~ Eleanor Roosevelt
In the two weeks running up to the transplant I had all sorts of tests and checks – heart echo and ECG, xrays of lungs, stress test on heart and lungs, full NCT really. I also had to see the dentist again and get a letter to say that I was dentally fit for transplant. It was a hectic couple of weeks.
On 4 July 2007 I was admitted to Tallaght Hospital for the final preparation for my stem cell transplant. It was my grandmother’s birthday that day – she had passed away the previous year, and I felt she was watching over me.
The transplant process is counted in five days.
Day 1 – 5th July was first dose of high dose chemo
Day 2 – 6th July was second dose of high dose chemo
Day 3 – 7th July was resting day
Day 4 – 8th July was resting day
Day 5 – 9th July was transplant day
I am sharing exactly what I was writing in my journal during those days, most of which were unpleasant. These are my diary entries from 3 July 2007 to Transplant Day 9 July 2007:
Wednesday 3 July 2007
It was a strange feeling waking up this morning and realising that today is my last day at home for a while.
Mam is due to arrive later today to help out while I am away and so as Bryan can be free in evenings to come and see me. I’m worried about how Cathal will be without me here. I hope he will respond well to the changes and to not having me around for a while. It’s good that his minder Chris will be in the picture each day as it will mean he has his routine and that his day is as normal as possible.
I packed my bags – I have my iPod, my psp, a radio, some dvd’s and the little portable dvd player. I have a mini library of books – Peter Kay’s one which should be light and funny.
Cathal gave Mam a great welcome. Things will be okay. He is in good hands.
Wednesday 4 July 2007 –Independence Day
I woke up with a splitting headache. Today is D day for me – again! I had chores to do so Emma and I went out early and did what we had to. Bryan had taken the day off work so as he could bring me in to the hospital. Cathal was gone for his ‘middle of the day’ sleep when we were leaving so as there would be no dramatic and traumatic goodbye scene. I said goodbye to him as he slept and kissed him on his head. My heart was breaking as I looked at his little body lying there in peaceful dreams in his cot. It will be at least four weeks before I see him again.
As we went out the door I looked back at Emma and my Mum and they looked lonesome. It must have been very hard for my Mum to keep it together. She was seeing me off, not knowing what was going to happen, not knowing if I was ever coming home. Emma was probably feeling the same thing and just not saying it.
We made it to the hospital and they saw us in the haematology day ward. They did all sorts of checks and cleaned my central line in my chest.
It was late in the day by the time they were finished with the final prep in the day ward and I was moved then to my hospital room which is a single room – an isolation room where I will spend the next few weeks. It’s room 33 in Maguire Ward. The ward is so familiar to me.
I had a last chat with my consultant and she gave me some final words of encouragement and advice before day 1 of the process.
It was a tough night. I had so many things racing through my mind. This is it, I found myself at the point of no return almost. The months of preparation and here I am ready, waiting and absolutely terrified.
I’m worried about the transplant.
I’m worried about being away from Bryan and the kids for so long. I know I will miss them horribly. Please God it will go well. Please God the time will pass quickly.
I’m worried I won’t make it …….
Thursday 5 July 2007 – Day 1 of the transplant process
My blood pressure and temperature were checked regularly all through the morning. Then at lunchtime my chemo arrived – Melphalan high-dose chemo.
Here’s the science bit about this type of chemo and the side effects:
Melphalan is an anti-cancer (“antineoplastic” or “cytotoxic”) chemotherapy drug. This medication is classified as an “alkylating agent.”
The drug is used for:
- Multiple myeloma
- Ovarian cancer
- Breast cancer
- Used in some conditioning regimens prior to bone marrow transplant
Important things to remember about the side effects of melphalan:
- Most people do not experience all of the side effects listed.
- Side effects are often predictable in terms of their onset and duration.
- Side effects are almost always reversible and will go away after treatment is complete.
- There are many options to help minimize or prevent side effects.
- There is no relationship between the presence or severity of side effects and the effectiveness of the medication.
- The side effects of melphalan and their severity depend on how much of the drug is given. In other words, high doses may produce more severe side effects).
The following side effects are common (occurring in greater than 30%) for patients taking melphalan:
- Low blood counts. Your white and red blood cells and platelets may temporarily decrease. This can put you at increased risk for infection, anemia and/or bleeding. This effect may be prolonged and cumulative.
- Nausea and vomiting. (mild with regular dosing, can be severe with high-dose therapy)
- Increased risk of serious infection: You are vulnerable to infection while you are having chemotherapy. Minor infections can become life-threatening in a matter of hours if left untreated. Symptoms of infection include fever, shivering, sweats, sore throat, diarrhoea, discomfort when you pass urine, cough or breathlessness.Anaemia is a low number of red blood cells While having your high dose chemotherapy you may become anaemic. This may make you feel tired and breathless. Let the doctor or nurse know if you experience these symptoms. You will have daily blood tests to monitor this. You may need a blood transfusion.
Bruising or bleeding This treatment can reduce the production of platelets which help the blood clot. Let the doctor or nurse know if you have any unexplained bruising or bleeding, such as nosebleeds, bloodspots or rashes on the skin, and bleeding gums. You will have daily blood tests and daily visual checks by the nurses to monitor this whilst an inpatient. You may need a platelet transfusion.
Nausea and vomiting (sickness) The severity of this varies from person to person. Anti-sickness medication may be given to you through your line or as a tablet to prevent this. If you continue to feel or be sick inform the doctor or nurse and alternative medications can be prescribed.
Hair loss Hair loss is usually total. The hair falls out gradually 10 to 14 days following your infusion of Melphalan. The time scale varies from person to person. This is a temporary side effect and your hair will grow back however the colour and texture may alter.
Altered taste and smell Chemotherapy can alter your taste and smell. Sometimes altered taste can be described as metallic or bitter. Your sense of taste and smell will normally return but can take some time.
These side effects are less common side effects (occurring in about 10-29%) of patients receiving melphalan:
- Allergic reaction. (rare with pill form, happen in about 10% of patients treated with IV form).
- Mouth sores. (mild with regular dosing, can be severe with high-dose therapy).Mucositis When you begin your conditioning therapy we will give you some products to use that will help to prevent infections in your mouth. Your mouth will become sore or dry and you may notice mouth ulcers. This occurs when the mucous membrane lining of your mouth and throat become inflamed and ulcerated. This can be painful and you may need strong analgesia.
- Diarrhoea. (mild with regular dosing, can be severe with high-dose therapy).
- Loss of fertility. Meaning, your ability to conceive or father a child may be affected by melphalan.
- Hair loss. (rare with regular dosing, common with high-dose used for bone marrow transplant).
- Nephrotoxicity (see kidney problems): Uncommon with regular doses, seen when melphalan is given in high-doses used for bone marrow transplant.
- Arrythmias (see heart problems): Uncommon with regular doses, seen when melphalan is given in high-doses used for bone marrow transplant.
I had my first dose of high dose chemotheraphy (melphalan) at 1.25pm. It was scary watching it going in. It was a huge syringe, so it was sent in slowly – it looked sticky and gloopy. I felt strange just sitting there watching it disappearing into my central line, knowing how sick it was going to make me. There was a temptation to say STOP.
I looked at it and thought what horrors it is going to bring to my body over the next couple of days – but also what hope the whole process is going to give me.
I was given anti nausea injection and tablets but within a few hours I started to vomit. Bryan came in to visit me. He asked how I was feeling and I said OK. I knew that he knew I wasn’t well – I must have looked green. I hung on and put on a brave face until he went home and then there was a volcanic eruption of my stomach at 9.30pm. I can’t believe how fast the chemo is working. It’s good stuff – not! I detest vomiting, always have – the feeling of panic and suffocation that comes momentarily.
I made the mistake of having a last supper a couple of hours before the chemo – just a small packet of Tayto crisps and a glass of cool refreshing Diet Coke. They were delicious but when the nausea started I really wished I had resisted them.
I had several aftershocks and eventually I fell asleep.
Friday 6 July 2007 – Day 2 of the transplant process
Vomited at 2.30am
Vomited at 10.30am
Vomited at 12.45pm
Vomited at 6pm
Vomited at 8.30pm
Vomited at 10pm
The second and final injection of high dose chemo arrived about lunchtime and I chatted with Roisin the nurse as it went in. I was pretty green looking at that stage and I hadn’t been able to eat. The final dose was pushed in through my central line and I thought – this is really it, definitely no going back now. The chemo would kill everything bad in my system (hopefully) but unfortunately it would also destroy everything that was good and it was going to leave me very open to infection.
I was in isolation already at that stage and feeling pretty miserable and sick.
I told her I had a very rough night and she arranged for me to have some strong anti-sickness medication. I was sick from early in the morning right through until late that night.
It’s exhausting being sick so much. Any sip of fluid I take only stays down for a while. I have banned all food and dinner trays from the room (with the nurses’ permission). I am not in a good place right now. I have chronic diarrhoea now and just dread what else is on the way.
Saturday 7 July 2007 – Day 3 of the transplant process
Vomited at 3.15am
4.30am – woken for blood culture to rule out infection
5.05 am – new antibiotics put up through my central line
5.15am – anti nausea pump inserted into stomach
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.
[Note: At this stage of the process I started to become obsessed with fruit and fruits juices. It was the only type of food I could look at or think about without wanting to throw up. I 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 spent ages working fruits together in my head and eventually came up with several different variations and names. It’s very strange what cravings can do. Anyway back to the diary…..]
Sunday 8 July 2007 – Day 4 of the 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. 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 4 July – only four days but my energy is at 0, 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.
Monday 9 July 2007 – Day 5 THE TRANSPLANT 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 at about 11.30am. I was taken by ambulance with a nurse from Tallaght. We met the team in Saint James’s Hospital – some of the faces were familiar at that stage. 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 doctor had to prescribe my own stem cells for me. It seemed strange that someone had to actually prescribe for me what had 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 and then 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. 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 stem cells.
Bryan arrived out from work to Saint James’s Hospital and he was there for the transplant (and the puking!). 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 actually about to rescue me from the effects of the high dose chemotherapy.
I am too weak and too sick to really celebrate the transplant. Of course I am happy that it’s all done, but I am feeling so very sick all the time and I am walking around like a frail old woman.
I got so many texts and calls because people knew that today was the Transplant Day. I wasn’t able for many of the calls but it’s great to get the texts as they take no energy to read. People are being amazing to me and to the family.
It’s a happy day. I am teary and emotional because I am so relieved, but so sick and tired. I know that the worst is yet to come.
End of diary entries to here.
[Note: When I read back over this now it’s just so full of emotion and I start to tear up. The transplant in normal circumstances would be something huge to celebrate but I was just too ill for that. It was a fantastic thing to behold medically and I know that I am so lucky to have been a suitable and via stem cell recipient. While I was weak and sickly, I was full of hope at the time that things would work out for me.