Chapter 9 – Hair Today, Gone Tomorrow

Life is what happens to you while you’re busy making other plans.
– Allen Saunders

When I was first diagnosed in January 2007 I asked the consultant ‘Am I going to lose my hair?’ At that stage I was really worried about how the kids would feel about me having no hair. I suppose I was worried that they might be frightened – especially our little boy who was just two and a half.

Looking back now, to be honest, the hair loss is really just a minor detail – I don’t mean to trivialise it, but for me it certainly was a minor detail when you consider all the other MAJOR things that happened.

Brenda before illness
Brenda before cancer

When I was diagnosed I had very long, very thick mousey brown straight hair. My hair used to take me ages to wash and dry because it was so thick. It was my crowning glory and I always felt good when my hair looked good. A few weeks after I was diagnosed I asked my Mum to cut my hair to shoulder length, partly because it was hard for me to manage and getting tangled all the time, but also because I was preparing myself and my family for losing it entirely.

Because my treatment was oral chemo in tablet form from January to April 2007, I was pretty lucky in that my hair just thinned a lot, but didn’t fall out.

Just before I was due to have the first dose of liquid chemo in May 2007, I went to the hairdressers and asked them to cut it even shorter than my Mum had. Again, I was anxious to prepare those closest to me for what was coming. I remember sitting in the chair at the hairdressers and looking at myself in all the mirrors thinking ‘this will be the last visit you will be paying to the hairdressers for a while’. The stylist seemed anxious about cutting it too short and she was being really thorough in explaining to me how short it would be and that it was going to be a big change. I told her to go for it because I was going to lose my hair anyway. She was a bit taken aback but she seemed also to take extra care and extra time with me which was nice.

Within two days of that first dose of liquid chemo  my hair started to come out. It was a gradual thing – I was still in hospital and I was aware of there being a few more hairs left on the pillow each morning that I sat up in bed.

BD and Cathal
Cathal and me in October 2006 (Before Cancer)

I decided to get fitted for a wig. They recommend that you avail of this service while you still have your hair as it gives them a chance to match a wig as closely as possibly to your real hair – colour, texture and style. While I was still in hospital I arranged for a lady from the wig company to come and see me in the hospital. I had asked them to bring loads of different lengths and styles, and I was a bit disappointed when the lady arrived with only a handful of short haired wigs! Where were the long blonde wig and the in your face red curly bombshell wig. Oh well that would have to wait for another day!

The lady was quite nice – a bit too sombre which didn’t sit very well with me. I remember she said to me ‘you are getting this wig probably for your own self esteem or for your husband’. Maybe that was her experience with others but I very quickly corrected her and said ‘I am not getting the wig for my husband or for my self esteem’. I remember being a bit annoyed at her assuming that I was getting a wig because I would have low self esteem without one. I am confident and secure in who I am regardless of what my hair looks like!

I tried on a couple of the wigs and we more of less found one that was very close to my own hair. There was a knack to putting it on which I practised a few times. It looked very strange, partly because I still had my own hair, but there was something not quite right about the wig! We settled on a style of wig but I asked her to hold off ordering it for me as there was something sort of niggling at the back of my mind.

I was laughing during the whole process – it was just absurd to be sitting up in a hospital bed on a weekday, trying on wigs in my pajamas! I don’t think she knew what to make of me really.

She left and one of the nurses came in. I expect she was hovering outside, and came in to make sure that I was okay. I was.

In the end I decided not to go for a wig. It just never felt right for me and when the wig lady told me the following:

  • You shouldn’t wear it when you are cooking
  • You shouldn’t wear it when you are unloading the dishwasher
  • You shouldn’t wear it when you are leaning over the hob cooking things
  • You shouldn’t wear it near steam!

I just thought – when can I wear it? So I decided not to bother.

The hair loss happened quite gradually at first. My Mam told me that when she vacuumed the house that the vacuum bag was full of my hair.

I was sitting on the couch one day and my husband happened to be standing over me and he said ‘Do you know that you have a bald patch right on the top of your head?’ I remember putting my hand up and feeling the smooth, almost egg like quality to the patch. I couldn’t see it no matter how I angled myself at the mirror. I almost broke my neck trying to get a look at it. So I got my husband to take a picture of it on his mobile phone so as I could see it. I got a shock when I saw the snowy white bald patch.

That was when I realised that within a matter of days or maybe a week that my hair would be gone. It was limp and lifeless really. I remember one day I was driving along in the car with the windows open. All of a sudden I was aware of something going out the window – it was clumps of my hair! I was literally shedding all over the place like a dog or a cat renewing their coat!

One of the things I wasn’t prepared for was how tender and sore my head was  once my hair started to go. It was painful to touch sometimes and I suppose that was the hair breaking away underneath the scalp.

I had heard that a lot of people shaved their hair but I wasn’t sure if I would be able to do that.

Then something happened of an average Thursday evening in June which made me realise my time had come to just get rid of it.

Cathal came over to me with a large chunk of hair and almost tried to put it back onto my head saying ‘there you go Mammy’. It was at that moment that I decided I had enough of shedding and bald patches. When I was on my own the next day in the house I went for it. I got my husband’s hair trimmer, a scissors and I cut the last of the long pieces of hair off. Then I shaved the rest. I was afraid to look in the mirror when I was doing it so I sort of felt my way around with the trimmer and the scissors.

When I felt that all the hair was gone and I was suitably egg like, I plugged in the vacuum cleaner and gave my head the once over for good measure! If anyone had seen me they would have thought I was very strange indeed.

I thought I would cry as I was cutting and shaving, but I didn’t.

I psyched myself up to look in the mirror – my heart was literally hammering away in my chest.

I thought I would cry when I saw myself for the first time, but I didn’t.

I opened my eyes and looked at myself in the mirror. While it was obviously very shocking, it didn’t actually look that bad. I had wondered what my head would look like – would there be scars from childhood accidents or from chicken pox? It’s funny what goes through your mind at a time like that. I had no make up and no ear rings on so I was literally au natural!

I stood in front of the mirror for a long time – trying to see myself from different angles. I was kind of like Sigourney Weaver from Aliens or a Sinead O’Connor. I suppose those ladies have paved the way for us baldies in recent years so it wasn’t like I hadn’t seen a bald woman before!

There it was I had lost my hair and I was going to be without it for a good few months, so I would have to just accept it and move on.

I collected my daughter from school and on the way home I sort of joked with her about what I had done. We do this sketch thing together from Catherine Tate ‘ you won’t believe what I’ve done’ She said in character ‘what ‘ave you done’ I said ‘I’ve gone and shaved off all my hair’. She immediately fell out of character and her eyes were like saucers. Really she said. Yes I said. Can I see it, she asked. I told her I would show her when we got home.

We arrived home and she said ‘show me’, so I did. She kind of gasped and said very quickly you don’t actually look that bad Mammy. Then she said in a kind of giggly voice – what’s daddy going to say?

I was thinking that myself. My husband and I had chatted about my hair loss and he had sounded kind of shocked when he noticed the bald patch and commented ‘it’s coming out quite quickly’. I was very worried about how he would react.

Cathal (our little boy) was dropped home and we didn’t show him. I had a bandana on which he immediately noticed. Even though he was tiny he always noticed if I wore something new or if I did something different with my hair. He told me to take the hat off. I told him that Mammy had to get something done with her hair, but that it would come back. I was very nervous about showing him. He had a habit of sitting behind me when we watched tv and ‘brushing out’ my hair. We had obviously prepared both of the kids for the hair loss; well as much as we could in the case of our Cathal as he was only 2 and a half and it’s a big thing for him to absorb.  I think I was most worried about how he would react. I showed him and he looked at me and just said ‘put your hat back on’. That was it, no tears, no drama.

My husband arrived home and my heart was racing – I was really nervous. It was like the butterflies you get when you are on a first date. It was silly really. I was going to talk him into seeing me gradually but of course the minute he came in the door Emma shouts ‘WAIT UNTIL YOU SEE MAMMY’S HAIR!’. So much for softly, softly.  I showed him and I know he was very shocked but he held it together.

I decided not to go for a wig at all. I had the bandanas and I had a few hats including a peeked hat with a kind of skirt at the back that I found in Marks and Spencers. One of the things I found was that there is not really a great choice of bandana styles and colours so I took to the internet and I found a sportswear company called BUFFWEAR which has these fantastic head pieces in every colour and design you could wish for. The bandanas that I had bought never sat right, they were almost like wearing a nappy on your head – thick and bulky. What I was looking for was something slimline made of lycra and I found them at buffwear. These are like a tube of material that you can wear in any number of ways – they are fantastic. I ordered a black one, a pink combat one and one with kind of reds and browns with the word STOP all over it. I ordered them from the UK on Friday and they arrived on the following Monday. They were brilliant and I wore them to within an inch of their lives once they arrived. They sat snug to your head so you felt almost like you had hair and they were really stylish and easy to wash. I never used the bandanas after that really just the peaked hat in the sun, a woolly hat when my head was cold and then the bandanas.

It’s amazing how quickly being bald just became normal for me and everyone in the house. Initially I would wear the bandana around the kids and my husband but after a few days, if I didn’t feel like wearing it in the house, I didn’t. I was lucky in that I lost my hair in June, just as it was getting warm so I didn’t have to worry too much about the cold.

The normality of it all came into sharp focus when a couple of days after my hair was gone – our little boy Cathal asked me could he brush my hair! My hubby and I looked at each other as if to say – how do you deal with this one. I said he could, handed him the brush and he sat behind me brushing my head. It was extraordinary really. Kids seem to always see the bigger picture of you as you are and not see the thing that is wrong with you. As I said, it was normal for him and for all of us in a very short space of time.

The hardest part of losing my hair was that it was the in your face, physical, every day reminder to me and to everyone around me that I was seriously ill. I know that it was tough on my family to be reminded all the time. I know it must have been hard for my husband to wake up each morning and to see my bald head on the pillow. I know that it was hard for the kids, especially my daughter to see me without my hair. Up to that point I didn’t look like someone who was battling a serious illness. I had no physical signs that I was sick and to the person on the street I was fit and healthy.

Emma came to me one day and asked me for a photo of me with hair. I gave her one and she explained that she needed to remember what I looked like when I was well and to be able to see what I would look like when I was better! That was tough but it was something she needed to do.

I remember the first time my sister Rachel saw me without hair.

She had come down for the weekend and I met her and showed her and she said “You have a very small head – have you every noticed that before?.” How would I notice that before? It’s not like I get fitted for a hat or a new bonnet every week and the local shop has my head size in their Victorian filing cabinet. It was very funny.

People reacted in different ways. One woman standing behind me in the grocery line in Dunnes obviously recognised why I was wearing what I was wearing and she came up and wished me well and asked  me my first name – she told me she would pray for me. It was strange but lovely. Another day when my hair had started to come back and I had just begun to go out with out any head gear, a little boy turned to his mam and said ‘mammy is that a man or a woman’. His mother was mortified and apologised and I told her not to worry about it.

Brenda getting used to no hair
First time going out without a hat in September 2007.

Since I have recovered I too find that I have  a sixth sense and I know immediately by looking at what someone is wearing on their head that they are recovering from chemo.

As I said, losing my hair was something that I was very concerned about but having gone through it and on the grand scale of things, it’s nothing really. Maybe that’s just me. Of course it’s traumatic to lose something that is part and parcel of who you are and what you look like but it was a small part of a big puzzle with much more serious pieces to it.

On the plus side I saved a fortune on visits to the hairdresser, shampoos and conditioners as well as all sorts of grooming materials.

Because of course it’s not just the hair on your head that you lose –I lost my hair from everywhere except my eyebrows. They thinned but they stayed and I had gone to the trouble of buying an eyebrow pencil

I saved a fortune on waxing and shaving and plucking too.

I was bald – a real egg head from the beginning of June until the beginning of September. In September my hair started to come back and by the end of September I no longer wore my bandanas. The weather had turned cold and I did miss terribly my long hair especially as it used to keep my neck warm. I would wear a woolly hat when I went out as my head would freeze otherwise. At that stage I had a wonderful collection of hats and matching scarves, one for every occasion.

My hair came back thick and strong and by Christmas 2007 I had a nice crop of short tight hair. It was very in fashion actually.

I wore glasses and I think having face furniture like that and big earrings took the bare look of me when I was bald and when I had very short hair.

For a while it was probably obvious to people that I had a problem with my hair – I remember getting funny looks in a shop one day from the manager who I think thought I could be a trouble maker – I’m sure he was looking for tattoos on me!!!!!

Every one’s hair growth and recovery is different. I am lucky because my hair grows quite quickly and it has come back thick as ever – but with a curly bounce to it which I didn’t have before. At the moment I am at the in between stage of having nether long or short hair.

I honestly never cried or felt like crying about my hair and that did surprise me. My daughter and I joked about it a lot. I would be brushing out her hair and she would swish it and I would ask her could I borrow some for the day and pretend to pull her hair as I was jealous of it.  It is tough for kids but it’s also something that once it’s happened to someone they know, they will never feel awkward or afraid about something like that in the future. Emma came to me one day and she said, you know if I ever lose my hair I know now that I will manage it because you did it Mammy.

What I would say to people who are facing into losing their hair is take your time, think about the options. A wig just wasn’t for me, I never felt comfortable and I just couldn’t be doing with all the minding that comes with a wig. Decide what you want and don’t just get something for the sake of it. Yes of course you have to be mindful of children, but they are amazing, so resilient and all they see when they look at you is Mammy or Daddy, who they love, and not a stranger with a bald head! It may take a few days or longer for people around you to adjust, but they will and you shouldn’t feel that you have to wear something for someone else.

I wrote a short story inspired by my hair loss which was recorded for an anthology of writing by Cill Dara Writers Circle. If you would like to listen to it you can do so here.

Now I am off to detangle my hair which is as long and tangly as it has ever been.

B xxx

Chapter 8 – Harvest time

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. They were delighted to see me and it was nice to be back in time for tea break. They had a special Mass for me and during the ceremony I received the Sacrament of the Sick. I struggled to keep it together during it 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 the 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.

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 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 it got quite messy but 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 remember looking 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 treatment:

The chemo supresses 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 full blown vomiting and all hell broke loose. 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 mobilse and is a good sign I am told.

I threw up again at ab0ut 3pm 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 jusy 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 meds are doing their job.

Dinner arrived but I wasn’t able for any of the savoury food. 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 hought my heart was going to break listening to him.

Friday 25 May 2007 DAY 5

I had another good night last night. I think I was up twice to use the bathroom which is because of all the fluids they are pumping into me.

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 okayday. I am still on the anti sickness meds 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 loely day ay home and I was worried about having to say goodbyre 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. Headachae 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 disapoointed 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 ght 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 visotors must report to the nurses station.

Monday 28 May 2007 DAY 8 FIRST BLOODS SENT TO JAMES’S

At 6am on the dot this morning a doc arrived tp take the bloods which will be couriered over to Saint James’s Hospital to be checked for

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. Fo 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 bizzare 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. I found the wig person very annoying as she was putting words in my mouth saying ‘you are getting this for your husband and so you will look nice for him …..’ I said no, I am getting it for myself.

I hated the whole experience.

The wigs were horrible and in the end I told her not to put an order through for me as I was undecided. I am hoping that she was just having an off day, as her time with me left a lot to be desired.

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 rown about whose responsibility it was to get the blood to James’s.

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 visotors 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 loking 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.

DSCN1075

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 stsyem 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.

DSCN1073

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, watvhing 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 insisited 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.

Brenda and her stem cells

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 reflief 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.

 

 

 

 

 

 

 

 

 

 

 

 

 

Hello world

I thought I should add a short post here in  Musings to say thanks to everyone who has stopped by the blog so far. We are only live for a week but already the blog has been visited by people from Ireland, the UK, Australia, America, Canada, India, Spain, France, Slovenia and Israel.

Your visits and your comments mean a lot.

I am trying to share a blog post/book chapter at least every one-two days. I have been suffering from the flu the last few days so apologies if I have kept you waiting.

I am back on track and will have a new book chapter up later today.

Thanks again.

Brenda xxx

Chapter 7 – Meanwhile at home, in work and in the real world

“Today you are You, that is truer than true. There is no one alive who is Youer than You.” ― Dr. Seuss.

All around me life was going on as before. Even in our own house we had adapted to living with a serious illness and in a way we too were just getting on with it.

Emma had her 10th birthday party in April which was celebrated like all her other birthdays had been – with a party. We were not going to let my treatment change that.

IMG_7391

Visitors to the house came and went. The postman was the busiest he has ever been as every day brought an avalanche of love and support in cards, letters and relics. My aunt actually sent my Mum some powder from the Holy Land which supposedly helps women who are having difficulty conceiving. I am not sure why she thought that would be helpful to me…. but people do what they do and try to help in whatever way they can.

I had very good days and very bad days. The bad days came when the effects of the massive steroid doses took hold and when they were wearing off. My voice changed and my whole body shook uncontrollably for several days each month as I bore the effects of the steroids. I was angry at people over silly things and then I was weepy for no reason. I remember snapping at a man for moving something on my check out belt and then being mortified afterwards.

I was delighted then when they told me I could stop the steroid treatment and plan for the harvest.

May 2007 was a gorgeous month. I spent a lot of time outside in the evenings with the kids in the driveway. We had huge excitement on the May bank holiday weekend when our cat gave birth to a single kitten which the kids named Rocky. It was a wonderful moment of new life in the house which was welcome when it felt like we were surrounded by unspoken fears of death.

Emma sat with Shadow (the cat) through her labour of about an hour. I still laugh when I remember her coaxing the cat to breathe and to push. It’s the ordinary and yet extraordinary moments like these that kept me going.

IMG_7389
At this stage both kids knew I was sick. Emma knew I was very unwell as I had given up work. Cathal, at only 2, was happy in his own little world. We took the decision not to mention the C word to Emma. We were afraid that off the cuff remarks about cancer might make her afraid. We told her that I had bad cells which would only be killed by chemo and so I would lose my hair and have to be in and out of hospital for the year. With Cathal it was different – he only cared that I was there in the morning and in the evening and not gone away from him again. We encouraged Emma to talk to her friends about it and to come to us first with questions rather than going online or somewhere where she might get the wrong information.

With the harvest coming up it was likely I would lose my hair as part of the process involved my first dose of  liquid chemo. I knew I had to prepare the kids so I decided to get my hair cut short. I had really long hair all the way down my back, which both kids used to love to get tangled up in.

I went off to the hairdressers and told them to cut it really short. The stylist looked at me and said ‘Are you sure? It’s a big change’. I told her to absolutely go ahead and she hesitated again. Then I told her that I was only going to have hair for another 2-3 weeks as I was facing chemo. She was shocked but I sensed real extra TLC in the way she looked after me that day.

The kids were taken aback with how short my hair was but they soon got used to it. I couldn’t predict how they would react to real and actual baldness but we would cross that bridge when we got to it.

In work life went on without me. I received cards and letters, emails and texts by the truckload from work colleagues who willed me on and wished me well. I used to hand write a letter to them every so often to keep them up to date.

Sometimes it was tough to look out at my world and to know that so much of life was going on without me. There was a time when I wondered if I would ever be the Brenda I was BC (before cancer).

Chapter 6 – In Treatment

In three words I can sum up everything I’ve learned about life: it goes on – Robert Frost

My treatment plan was decided before I left hospital in January 2007. I was considered young and fit and so I was a candidate for a stem cell transplant.

The stages to be completed up to transplant were:

1. Reducing the myeloma to as low a level as possible using chemotheraphy and/or radiotheraphy

2. Collection of my own stem cells either by a bone marrow harvest or a peripheral blood stem cell harvest.

3. Treatment with high dose chemotheraphy. As this chemotheraphy cannot tell whether a cell is malignant or not, my bone marrow cells would all be killed so in order to rescue me from this I would need a transplant.

4. Reinfusion (transplant) of my own stem cells which will grow and form new red blood cells, white blood cells and platelets.

SIMPLES!

This all sounded so cutting edge and so dangerous but I knew it offered me the best hope for long-term survival, for any kind of survival, so I said yes to everything they were going to throw at me.

But there were some HOWEVER moments to deal with.

Not everyone is eligible for a transplant – age and general fitness are factors as well as the issue of stem cell harvesting.

Also it is often not possible to get stem cells mobilised for harvest.

I began my cycles of chemo in January and would have one per month while being supported by medication to deal with other issues caused by the Myeloma and to prevent me from getting ill with other infections and viruses etc. My cocktail of drugs daily/weekly was:

  • Nuseal (to prevent blood clots)
  • Valtrex (to keep viral infections away)
  • Diflucan (to prevent fungal infections)
  • Zoton (to protect stomach lining)
  • Alfacalcidol (calcium)
  • Calcichew (calcium)
  • Zyloric ( to prevent a build up of uric acid)
  • Thalidomide – beginning at 50mg and building up over time to 300mg.
  • Septrin was taken every Monday and Tuesday (an antibiotic)
  • Dexamethasone steroids which I took 40mg of for four days every month which which worked in combination with the Thalidomide as a form of oral chemo.
  • I took two injections into the stomach every Wednesday to increase the production of red cells.
  • I had a bone strengthener by IV once a month as well as a Vitamin B12 injection to treat anaemia.

Before I left hospital I was given this little booklet called an Oncology Diary. Now I was haematology rather than Oncology but it was designed to help me keep my own record of blood results and it also had all the really important emergency numbers for me if something was to happen to me while I was at home.

I saw my GP once a week for a general chat and so as he could issue me with a medical certificate for work.

Every second week I went to the Haematology Day Ward in Tallaght Hospital (Dublin) where I had full bloods taken, a chat with the nurse specialists, and then a chat with the consultant. I was kept on a very short leash.

Once a month I was given an IV dose of bone strengthener. Now that might sound like an old fashioned splint attached to my bones but it was delivered intravenously in liquid form. If you can visualise a slice of Edam cheese with all those holes of varying sizes in it – well that’s what the effects of myeloma on the bones looks like if you view the bones on a x ray. I was lucky in that my bones were good and the doctors  were anxious for me to keep it that way.

Dr Wall my renal consultant saw me regularly too and she kept an eye on all my results especially my creatinine levels.

By February my creatinine had not improved that much and was holding at 375 which was still way too high. The other HOWEVER issue for me with the transplant would be what it might do to my kidneys. A few years ago they would not have offered me a transplant because of the way my kidneys had been damaged, but with improvements in medication they were prepared to do so. I was told to prepare myself for dialysis being on the cards during the transplant as my kidneys would take a hit again then.

I was drinking 3 litres of fluids a day as part of the treatment for the Myeloma and there were days where I felt like I was a camel, loading up with water to cross the desert. It’s not easy to drink 3 litres a day!

My bloods too were up and down and I was still needing regular blood transfusions to boost my levels. It was just part of the treatment and although it always felt unpleasant to have a transfusion (like being too full), I knew I had to keep saying yes.

But I developed my ‘In Treatment’ routine.

Bryan went off to work early each day. Emma got the bus to school. Cathal was collected by his minder and I did whatever my energy levels would allow me to do. There was also a huge amount of paperwork which comes with being sick and preparing for something as serious as a stem cell harvest.

Whilst the haematology department in Tallaght would be my primary carers for my treatment, Saint James’s Hospital in Dublin would also play a significant part. I was to meet Dr Paul Browne and his team as soon as possible as they would do the harvesting of the stem cells and the transplant. My before and aftercare would be looked after by Tallaght.

The staff in Tallaght are superb. I had a great team of nurses – well nurse specialists as they have had to train for years to work in haematology. There were always new faces but by the time I was ready for my harvest, they all knew me very well, and vice versa.

I had also spent a morning in Saint James’s in their haematology department, where I met and chatted with consultant haematologist Dr Paul Browne. I was showed around the room where the harvest would take place and the machinery that they would be using. It was all pretty daunting. Dr Browne answered all my questions including one which I think he wasn’t expecting. We hit it off straight away which is always a good thing when you are putting your life in someone elses’s hands.

I was told that I would have stem cells harvested for two transplants as I would only ever be offered two transplants. That was a shock but Dr Browne explained that after two transplants the results from a third would not outweigh the risks involved. I was also asked to have all my siblings come to the hospital to be tested as there was a good possibility one of them might be a perfect match for me if things got grave for me in the future and if we ran out of other options.

That was another reality check for me about how seriously ill I really was.

I finished my fourth cycle of chemo in April and they did another bone marrow biopsy. When they They decided that the levels were optimum and that we could go ahead and do the harvest.

Harvesting was to begin in May.

Chapter 5 – The Adjustment

In a time when I need a little hope I look at a photo of where I call home and think of the moment I’ll have when I go back with my trials and struggles carried in a box able to be let free and turn into achievements and happiness. – Cassandra Shea

It was only when I was back at home by myself for the first time that the reality of what was happening to me began to sink in. That first month in the hospital I was caught up with the business and the busyness of being sick. My journal entries give a sense of what was going on but there was a lot I wasn’t able to say during those days….. I just didn’t have the words. It was only when I was home alone that I was able to start to absorb all that was happening and all I was facing in to.

In all the tests I had during those first few days and all the investigations, I never thought of cancer. How the hell did I get cancer? How the hell did I get such a rare cancer?

By the Myeloma stats I should be a middle aged man but instead I became part of the 2% club – 2% is the percentage of Myeloma patients under the age of 40. I was 38 when I was diagnosed.

When Dr Wall told me I had myeloma I asked her two questions:

  1. Is it hereditary?
  2. Will I lose my hair?

Looking back I realise now how trivial the hair loss question seems but at the time I was worried about the kids – could they get this cancer from me and was my hair loss going to really upset them.

It might seem strange to people that I was on my own with my consultant when she told me the news. But that was how I wanted it. I also would have known if she had come in to see me and asked me to invite Bryan in. There was no hesitation on my part – I just wanted the news and some time to absorb it before I had to tell Bryan.

There’s so much that comes with a diagnosis of cancer – the weight of responsibility of having to cope with what I had just been told, the task of telling my loved ones – where do you start, what do you say, how do you say it?

My family knew that the results were due on that particular day so they were waiting, nervously to find out what was wrong with me. I called my Mum first and then my older sister Rachel. I told my Mum who was at home in my house looking after the kids and keeping routines going while everything else around me was falling apart. We cried down the phone at each other. When I told my sister she cried and then just said we all love you and you will get through this.

I called my mum in law Maureen and when I told her I broke down. She was very calming and said something similar that everyone loved me and that I was strong.

We sat down with the haematologist to discuss a plan of campaign and she explained in a bit more detail what myeloma was and what the treatment would be. When she said the word treatment I was so relieved. When I was told there was no cure I immediately thought – well how long have I got and when am going to die? This was all new to me and I had nothing to benchmark what was happening to me against.

When the haematologist confirmed to us that I would die without treatment it was just devastating. The death word had not been used up to that point and so it shocked me further and made me realise how big a battle I had ahead of me.

After that we were left on our own and I had a little cry. There were so many feelings and emotions flying around that it is just impossible to put one word on what I was feeling – what we were feeling.

There was fear and panic. There was grief and sadness – all our dreams together and our hard work to build the life that we had for ourselves and our children. Was that all gone now? There was despair, hopelessness and there were an awful lot of tissues used.

I always wondered how people coped with bad news like this. You see the way people behave when bad news is delivered in movies – in Hollywood there’s a drama and an art to it all. There is no artful way of receiving news like this in the real world. There is no manual to tell you how to be or what to say to people or to yourself.

There’s a business side to dealing with it too as there are so many other people to factor in. Close family, friends, work colleagues, extended family, neighbours, teachers and child minders……. So much practical stuff to take care of.

My mind was spinning – if it was a cartoon you would see stacks of those speech bubbles filled with just the one question mark?

You could be forgiven for thinking that I appear to have just gotten on with things but inside I was crushed. There was not a second of the day that I didn’t think about cancer. Those speech bubbles were full of cancer? WHAT? Cancer? Me?

cancer speech bubble

It’s terrifying to be told you have a cancer that there is no cure for. It’s even more terrifying when it’s a cancer you have never heard of. It’s Myeloma is what I would say to people and they would reply ‘Ah yeah my sister had one of those removed from her arm’. No! Not Melanoma – this is Myeloma!

My thoughts in those early days were full of despair and blackness. Don’t get me wrong I was very single minded and determined to fight this  but there was a blackness that had descended.

The kids! How the hell can they cope without me? Cathal was 2 and Emma was 9 and we had so much living to do.

We had only just moved into a new house. Cathal was still a baby. How the hell was I going to tell Emma that I might not be around for her and how on earth was I going to contemplate saying goodbye to a two year old when he had only just learned the words?

It was just all so crushing.

There were practicalities to deal with –bills had to be paid, school and child minders had to be consulted and I did a lot of this from my hospital bed, despite protestations from Bryan. But I needed to feel useful at that point. I needed to feel I was going to be treated as same old Brenda. One of my biggest fears was that I would be treated like an invalid for the rest of my life.

My brain was in overdrive with thoughts and dreams crashing together. I am so used to working and to being busy and to have all oof that suddenly come to a full stop was very difficult to deal with.

There was a moment a few days after the diagnosis where I had to almost sit myself down, give myself a good talking to and give myself permission to be sick!

Friends and family were just so supportive. Nothing was to be of concern on the home front as family and neighbours rallied around with school runs and babysitting. My mum and mum in law took it in turns to stay with the kids at home so as we could keep some normality in the house. I sat in the hospital room by myself wondering if life would ever be normal again.

At home the Christmas decorations were still up. I had missed the end of the kids school holidays and those lazy January days when you eat the remainder of the boxes of Roses and watch movies you have seen a hundred times. I hated missing that and I started to wonder if that was my last Christmas ever.

SAMSUNG CSC

I was relieved to be released from hospital at the end of January and to feel that we had begun the fight against my Myeloma.

I settled into a new rhythm of daily life. Cathal was collected by his child minder Chris who was a tower of strength to use. I was too weak to look after him at home those first few weeks and we knew that things were unpredictable so we wanted to keep up the routine.

A neighbour collected Emma for prmary school. I phoned the school to tell them about my news and to ask them to keep a particular eye on Emma and to cut her some slack if she turned up in her tracksuit instead of her uniform. They were very understanding.

I had not returned to work since beginning my Christmas holidays. I missed work but I knew I would not be physically able for it and there was the issue of picking up infections too when you are out and about in a busy office building.

I slept a lot in those early days as I rebuilt my strength. I had lost so much weight and my own body had in effect beein poisoning itself because my kidnerys were not able to do the job they were supposed to. As I started to respond to the treatment it was a relief to be able to go through a day without feeling sick.

But I knew that there was much more to come and that my relief was only temporary.

Chapter 4 – The Aftermath of the Diagnosis

After great pain, a formal feeling comes –
The Nerves sit ceremonious, like Tombs –
The stiff Heart questions ‘was it He, that bore,’
And ‘Yesterday, or Centuries before’?
The Feet, mechanical, go round –
A Wooden way
Of Ground, or Air, or Ought –
Regardless grown,
A Quartz contentment, like a stone –
This is the Hour of Lead –
Remembered, if outlived,
As Freezing persons, recollect the Snow –
First – Chill – then Stupor – then the letting go –
Emily Dickinson

I have kept to my diary posts for the actuality of what was going on around me from the day after the diagnosis.

Thursday 11 January 2007

I managed to sleep. Got very cold during the night and had to get another blanket. The nurses here in the hospital are amazing. They can’t do enough for me especially at night when I feel that bit more vulnerable. Bryan was on the phone to me first thing this morning. There is so much to be said and so much we just can’t put into words. There are conversations to be had that we shouldn’t have to be having. I’m only 38……….

I started my chemotheraphy today – it takes the form of Thalidomide and Dexamethasone steroids.

Here’s another science bit:

Thalidomide was originally developed in the 1950s as a sleeping pill and for the control of morning sickness in pregnancy. The drug was abandoned a few years later because it was found to cause birth defects. But more recent research shows that it is useful in the treatment of myeloma. The first clinical trial to evaluate the [effectiveness and safety] of thalidomide in relapsed myeloma was conducted at the University of Arkansas in 1999. Thalidomide is a type of drug called an immunomodulator. This means it works by altering the immune system or the body’s ability to fight disease. How it works in myeloma treatment is still being studied. This is what the studies have shown so far:

  • Thalidomide blocks the flow of blood to tumour cells.
  • Thalidomide interferes with the growth of tumor cells in the bone marrow.
  • Thalidomide stimulates the immune system to attack tumor cells.

Back to the diary

The team have started me on a load of other medication too. I am a drug mule! I can’t quite believe I am on Thalidomide. The Children of Thalidomide line from that Billy Joel song keeps going around in my head.

I had a complete bone scan done today and they have started me on something called a bone protector which I will have once a month intravenously.

Had vitamin 12 injection in the derriere – it had to be the derriere!

My blood pressure went very low in the middle of the day – 89/54. My blood sugar went up to 16.5  which is way too high. It should be 8.00 or under. It is my body reacting to the various meds, especially the steroids.

I want to write a will in case something happens.

I really hope that I can cope okay with the steroids as they are so important for the treatment but I am such a high dose of them.

I woke in the middle of the night feeling weird. Blood pressure is way too low and needs to be monitored.

Loads of practical stuff to organise too like a sick cert for work amongst other forms to be filled out. It’s complicated dealing with all the admin stuff.

Emma asked her Dad if we would go bankrupt as I could not work

Friday 12 January 2007 

Blood sugar back down to 10.5

BP back up a good bit

Watch blood sugar all day today via that awful finger prick and machine

My colleagues in work had a special Mass for me today in Columba Centre. The support is amazing.

I feel a bit of a tickle in my throat like I am getting a cold or a cough.

I have loads to do today. I have to write cheques and phone people to make arrangements for Emma to get to and from school etc. Life goes on and has to be sorted even though I am stuck in here.

I find it hard to get the word cancer out when I have to tell people I am sick. It gets stuck in my throat.

Calls: Bryan, John Mc, Rose, Anne D, Rachel, Bruce, Dots, Harry, Dots (again), Caro, Gerry and Sandra.

Visitors: +DM, hospital chaplain

Spoke to haematology and this is a brief synopsis:

  • No more babies most likely as a result of the chemo which will most likely make me lose my fertility
  • Life is changed now and it’s a day at a time
  • The team are happy so far with how things are going
  • If this course of treatment doesn’t work they will move onto the next type

I May get out on Saturday/Sunday for day release. I sound like a prisoner.

The kidney team were around to ask me if I am okay with everything I have heard. Am I okay? Of course not but I will have to be and I will get on with it.

They are going to manage me as an outpatient and I will come in through the haematology day ward once a week for bloods and management.

I asked what my kidney function is and Dr Wall said 25%. If it goes down to between 20 and 10 per cent I will have to have dialysis. They are hoping that by treating the cancer that they can get the kidney function up to 40%. I won’t ever be 100% again they say. Again F*&*

I have to register with a pharmacy as the Thalidomide will only be dispensed under very strict control to one pharmacy in Newbridge.

If I go to the dentist they are not allowed to do anything – no drilling or extractions. Yay! They want a written report about my dental status – they need to know how my teeth are.

Can’t have lemsip or any of those sorts of things as too much for kidneys to handle.

Paracetamol is all I am allowed [well on top of all the other stuff I am on]

Drink three, yes three litres of water a day is part of the treatment

No alcohol for the moment.

Don’t get dehydrated.

No work for at least 3 months and then they will review.

There is a lot to take on board.

Saturday 13 January 2007 

Blood sugar 9.7

Bit of a cough

Had XRay of my back

I was let home for the day which was quite something. Bryan collected me and it was very difficult making the drive back to my life. We live out past the graveyeard and I was imagining my funeral and me being six foot under. I just …….

It was very emotional getting home to the kids and to a freeze-framed Christmas. The decorations are still up in the house, along with our lovely Christmas tree. Of course I started to take them down but I ran out of energy and just had to sit on the couch.

While we were home we registered with a pharmacy. They were really really nice.

I have to be back in the hospital for 8pm for my Thalidomide.

Sunday 14 January 2007

I woke with a lot of phlegm and discomfort. They asked for a sample of course – I am open season now when it comes to tests and samples. It has to be checked and re-checked and I understand all that.

I am taking my meds and hoping to be allowed out again today on a day release to get home to the kids and Bryan.

My temp and other vitals are fine. I was allowed home.

The chaplain came in for a visit early today– he’s a really nice man.

Being home is so full of mixed emotions – it makes me sad when I look at the kids and think about what I am facing in to and worrying about all sorts of other things.

I have this feeling then of sheer delight at just being home and being able to walk up and down my own stairs and complain about all the clothes my Mum has drying on the radiators – a pet hate of mine. [PS we have a dryer but she wouldn’t use it]

Monday 15 January 2007

I woke up feeling really hot and choked.

But the good news is that I have finished my first round of steroid treatment after 4 days. I feel okay and things have settled down now. I will continue on Thalidomide indefinitely.

My blood sugar is still all messed up though and they are assuming it is from the steroids but I need to see a dietician just in case it is something else. The specialists being rolled out to see me is a sight to behold.

Dr Ottridge [my haematologist] said something very interesting to me today – he does not want to see a dramatic improvement in me or he would be suspicious. Slow and steady and I will take that.

Creatinine is 270. Bloods back down to 7.7 so I need another blood transfusion. First unit of blood was put up at 7pm and a second one at 10.45 pm

So many calls and texts and cards and letters from people. I am overwhelmed.

Some special visitors. Had a bit of a wobble with Bryan earlier – just cried and couldn’t stop and the same thing happened with Fr Martin C. I suppose it is the effects of coming down off the massive dose of steroids so suddenly and the fact that I have cancer is sinking in.

I had a lovely healing blessing this evening from Fr John and I got overwhelmed again as it was so emotional and moving and difficult.

I am now feeling the huge weight and burden of the diagnosis. I have moments of peace mixed with moments of sheer panic and terror at the thought of not being able to watch my two beautiful children growing up.

I am fighting.

I will fight.

I won’t ever give up.

I am only human and I need to let myself cry.

Every minute, hour, day is a bonus now with the people I love.

It is also strange at the moment because I think I have stopped having dreams at night. Am I dreaming? Maybe I can’t anymore. Very strange.

Tuesday 16 January 2007

Blood sugar: 4.9

Haemoglobin: 9

Creatinine 303

Output of fluids has improved.

[Nothing else in the journal on this day as I was feeling tired]

Wednesday 17 January 2007

This time last week I was blissfully ignorant about the cancer. How a week, a day and a single word can change a life so fundamentally.

I had a very bad night last night. Feverish, chesty, pain.

I am worried about Cathal too as he has some sort of a dose and I hate not being there for my little man when he is sick. He needs me. I know I have to worry about myself but it is so hard to hear him on the phone asking me if I am coming home. He is so little and doesn’t understand why I have suddenly disappeared off the face of the earth. The thought struck me today – if I die, will he even remember me?

I have been crying a bit more letting it out with Martin C and Anne D. I have to let the tears out.

I really only get emotional when I think of not being around for Emma and Cathal as they grow up. I am terrified and at times it almost takes me over completely.

Emma and Cathal

Who knows what is ahead and for now I need to focus on getting better. A day at a time but it is so scary. I know I am a strong person but it is going to be an uphill battle and there is just so much medical information coming at me – stem cells and harvesting and all manner of things.

Listening to Cathal on the phone he seems to have grown up and gotten older in the two weeks I have been here in the hospital. I can’t wait to just hug him and squeeze him.

I am waiting for a chest xray – my temperature is slightly up. Dr Wall is on her way.

[Written later on in the journal in red pen] 

I have a bronchial chest infection and they have put me on a strong antibiotic and are also giving me nebulisers as I am having trouble with my breathing

My hopes of going home for good today were dashed once Dr Wall took a look at me. She is not happy and I am staying put for the moment.

Thursday 18 January 2007

Still in hospital

Temp: Normal

BP: Normal

Creatinine: Down = good

Hb: 8 = not so great again

Dr Ottridge was in for a brief time with the team. Dr Wall was in also – I am being looked after by two teams – renal team and the haematology team.

I need to have another two units of blood – no need for alarm. My own ability to produce red cells has been compromised by the myeloma so I need a boost.

This will be my sixth unit so far and Dr Wall will be around herself for the weekend so I will be let home if I am much improved by then.

Dr Wall asked me what I was writing and I told her I was journaling and she said it might be useful to others some day. Maybe it will. [Finally after 8 years here it is]

Fr Kevin called in with some holy water from Lourdes. Really pleased he left it for me.

Friday 19 January 2007

Blood sugar fine

Temp fine

Vitals okay

First unit of blood @ 7am

2nd unit at lunchtime

Dr Wall left word that I am not allowed home or out on day release unless she sees me. She is very thorough! I like her a lot. I sneaked a peek at the whiteboard which holds all the patient’s basic info and she has a note on that beside my name *not to be discharged*.

A man keeps coming in to my room at 6.30am insisting I sit into a chair to be weighed. I find this very insensitive as I am not an invalid and I can stand on the scales. I hate being made to feel decrepid

Had dietician in to talk to me as I will be on a special kidney diet from now on. It’s okay really. Balanced and healthy but there are things I have to watch very carefully.

Got fruit basket from Angie and Derek.

Dots phoned

I finally got around to telling D and he reacted as you would expect. Whew. It was tough.

Saturday 20 January 2007

HB 12

Kidney 270

Bloods – very good

Felt sick this morning. Retched but didnlt puke. Sick of puke.

Got anti nausea injection from the nurse

Emma, Bryan, Mam and John P were in to see me. Cathal stayed at home with Granny Maureen.

Sunday 21 January 2007

I was allowed home today for good for now.

+EW came in to see me and he was wonderful. He said if he could take it from me he would. I got upset when he gave me a blessing. It was just so raw and moving really. What a lovely man and pastor he is.

It is great to be home really and truly. Cathal was shy almost when he saw me as he just wasn’t expecting me to be around I guess. Love being home.

Cathal recent pic

Monday 22 January 2007

My mum in law Maureen is here for the week and she is spoiling me. She won’t let me do anything. I stayed in bed until midday – when I got up she was watching Home and Away through a half screen on the TV as she could not turn off the Teletext and did not want to wake me up to ask me.

I drove for the first time since 2 January today. I had to go to the chemist to give the prescriptions. Maureen came with me as I was feeling nervous. They were very kind to me in the pharmacy and made me sit down. It was just as well that I was sitting down when I saw the bill. It  was 1,400 euro and that is without the Thalidomide and the Aranesp which will be the same again twice I would think. Bloody hell I was sick until I realised I only have to pay €85 euro a month. It’s still a lot of money but a lot more easy to deal with that €2000 plus.  Jeepers. This is all so new to me.

Tuesday 23 January 2007

I am very tired today and feeling sick. I stayed in bed. The tablets are very hard to swallow – I am on so many. Food is very hard to eat.

Bad day today.

Wednesday 24 January 2007 

Emma is on a day off from school and Cathal has gone to his minder. We are trying to keep him in his routine and I am not physically able to mind him.

I got my injections from the pharmacy. I have to see if I can manage the injections myself. Two into the stomach every Wednesday. If I can’t manage them I will need to have a nurse come and do it for me. Time to psyche myself up.

[posted later in the day]

I managed to inject myself with the two needles into the stomach. It was so hard at first and my hand was shaking but I have to be independent and not be sitting around waiting for a nurse to call to do them. Just went for it in the end.

Thursday 25 January 2007

Okay day today. Stayed in bed for a while. Not up to much as I get tired very easily.

Friday 26 January 2007

No visitors today.

Bryan went to work as we are trying to keep things as normal as possible for the kids and for ourselves

I had to go back to the pharmacy for the Aranesp injections and for my own Thalidomide batch. The Thalidomide was problematic as there was an issue with the prescription which the pharmacy and day ward sorted for me.

Saturday 27 January 2007

Maureen (Mum in law) had to go home but I managed okay with the kids and Bryan is doing a lot for us.

Saturday 28 January 2007. 

Aisling called from the USA.

Feeling tired and sick.

END OF JOURNAL ENTRIES FOR THE MOMENT