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.



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