Monday 18 June 2012

Rain... Misery...

This is just shit. It's pouring rain here. I slept through the alarm. Damn, damn, damn. This seems to be getting harder. I'm getting angrier. Money's getting tighter. My plan to possibly escape for the summer with the kids to a nice holiday home by the sea is definitely well and truly gone to pot. I can't afford it. So it looks like we're stuck here for the summer, with the usual mess, housework, demands, rain etc. etc.

Yesterday was Father's Day. Like we needed another reminder of what we've lost. I went to the grave with my 15 year old and 8 year old. We stood in the rain and put a plant and flowers on the grave. Our hearts broke. What did my children do to deserve this? They've always been good. They've always loved their Dad and been loved by him. Their lives are just starting and all they're left with is me to guide them and reassure them. Honestly, that realisation is enough to push me to the final stages of insanity.

Fuck off life. You suck.

EDITED TO ADD: A strange thing just happened. The day that D passed away I took his wedding ring off his finger to save it. Later I attached it to a gold chain and wore it to the funeral services. But the day after the funeral I had a red raw rash running right around my neck. Turns out the gold chain was more like tin and rust (thanks Mam!). So I took it off, put it down and later that day I saw the chain on the floor with no ring. Oh god! I really thought the dog had swallowed it or somehow manhandled it enough to bury it. I was just washing up some plates and cups and I have a little container next to the sink to hold sponges and cloths. There was the ring sitting right there. Well I know I've cleaned that container plenty of times in the last few months. How did it get there? I am very relieved.

Saturday 16 June 2012

A Life is Ending - Part 2

Continuing on from A Life is Ending - Part 1

I don't know if reliving the events of late 2011/early 2012 will bring some solace or if dredging it all up again will push me into the depths of despair. I do know that I must get it out of my head. Everything happened so fast and the weeks from early December to mid-January were a rollercoaster ride – we didn't have time to stop and take a breath or make a plan. So, for my sanity's sake (what's left of it), I think I do need to continue to document it.

Having been to the doctor on Monday 21st November, D continued to feel bad throughout the week with stomach pains and nausea. We waited on news of his blood tests.

Friday 25th November
D phoned me that afternoon to say the doctor had got back to him and said he was almost sure that the problem was gallstones. The blood tests showed elevated liver enzymes and the most likely issue was gallbladder-related. An appointment had been made at the hospital for an ultrasound scan which would take some time to come through. Hurray though! Gallstones we could definitely deal with!

Relieved after that phone call, I went back to whatever I was doing on the computer but, out of the blue, I was overcome by a feeling of total and utter panic as I suddenly recollected something: 16 years previously D's father, after months of feeling unwell, was diagnosed with gallstones but when the surgeon opened him up to remove his gallbladder he discovered that he had, in fact, advanced pancreatic cancer. He was dead four months later. Hearing 'gallstones' again and knowing that they got it wrong the first time (and also keeping in mind that cancer runs in his family)... my blood ran cold. I was alone when I had this panicked episode thankfully. I will always remember that moment because it was the very first time that cancer (or at least, at that point, the possibility of cancer) entered our home. What if he has cancer? What if he dies? I haven't been a good wife. I haven't always been there. We had drifted apart. Jesus. What about the kids. Oh fuck. Calm down. It's gallstones.

D returned that evening, still nauseous with no appetite and feeling exhausted. I didn't want to terrify him with talk of cancer but I knew it needed to be addressed. I told him that I was doing some thinking and that while the doctor is probably right about gallstones, I wondered could it be something else. To my surprise he didn't disagree. I said "I've been thinking about the gallstones diagnosis and suddenly it hit me about a time we'd heard it before..." and he immediately knew what I was leading up to and said "yeah, my Dad...". I suggested we go back together and speak to the doctor and tell him our concerns and he agreed. I did acknowledge that I was probably being over-dramatic about the whole thing! I pictured myself talking to the doctor about my fully-grown, more than capable, 47 year old husband, mentioning life-threatening illnesses and tumours and tests and then the doctor returning some weeks later, rolling his eyes and showing us an ultrasound picture of a teeny little gallstone!

Saturday passed with him feeling pretty rough but he still managed to play a gig, drive the boys where they needed to go and do lots of other things. He was tough, was our D!

Sunday I brought Aisling to see the Christmas lights and decorations that had been put up in the Woollen Mills in our village.

The place always looks so beautiful for Christmas and it's my favourite shop with a truly magical atmosphere, twinkling lights and lovely music, unlike the tacky places you usually see at Christmas. We were browsing through a few things when D rang me and said that he was finally feeling much better! He had decided that morning to reduce his dosage of Metformin (diabetes medication) because he suspected they were the cause of the nausea. His blood sugar levels were always perfect so a temporary reduction in medication wouldn't harm him. He felt we no longer needed to talk to the doctor and he would just wait for the scan appointment to come through. More relief!

The following few days saw him unwell again with the return of the nausea. His loss of appetite was back in full force so, although I was still feeling a little bit foolish, I went ahead and made the appointment to speak with the doctor. What had we got to lose?

Edited some time later to add:
I've decided there is not need to continue with this slow journal of his diagnosis. Essentially following our visit to the GP on Thursday 1st December, Diarmuid was admitted to hospital for a CT scan. Gallstones were confirmed and we were elated that it was nothing more serious. But they did decide to do a biopsy. Hmmmm. We had to wait a gruelling 12 days for the results of the biopsy, bringing us up to Wednesday 14th December. We got a call to come and see the general consultant at the hospital. We knew it couldn't be good news as they wanted us there that day.

He diagnosed Diarmuid with primary liver cancer. We were told that the following Tuesday (20th) a multi-disciplinary team would meet and decide on the prognosis and the treatment. We went home and told our sons. The shock and despair was so painful.

What a horrible week we had waiting for their decision. On Wednesday December 21st, we drove to the hospital, this time to meet the oncologist for the first time. The news was bad. There would be no surgery. The cancer had spread to the lining of the bowel. All he could offer was chemotherapy. He told us that Diarmuid would live for 18 months to 2 years but that as he was so strong, a non-smoker and a non-drinker, with a wonderful attitude that prognosis could well be overly conservative.

We went home and Diarmuid called the Cancer helpline looking for as much information as he could digest. He was determined and positive.

The next 2 days he vomited, felt dizzy, was exhausted and just felt so bad. On Christmas Eve he had to spend the whole day in bed bar one hour. When he was sitting with us, he was happy and determined to fight it.

Christmas morning Aisling woke at 6am excited and enthusiastic, waiting to see what Santa brought. All 5 of us went into the living room and the kids opened their gifts. Diarmuid was smiling and happy to be there with us. As it turned out that would be the last time we all sat together as a family. He had to go back to bed after an hour and never really got up again.

The following day I phoned the oncologist and told him that Diarmuid was miserable, he was in tremendous pain and I asked what I should do. Surely, given a prognosis of 2 years, he should not be feeling so bad? He prescribed morphine and after much hassle (it was a bank holiday remember) we got our hands on it and he started his new meds.

The next two days passed with Diarmuid in bed, in pain, uncomfortable, nauseous and scared. Again, I phoned the oncologist but he said give the medication time. By December 29th I brought him to hospital where the oncologist met us. He said the bile duct was blocked and a simple stent would sort it out.

That stent never happened. There was no blockage. On January 5th we were told it was bile duct cancer, not liver cancer. His chances of getting chemotherapy were fading. On January 9th he was much improved and the oncologist (ever stupidly optimistic) said he would be coming home in 2 days. But the very next day the hospice team visited and suggested hospice care. On January 11th he was moved to a hospice where he passed away 6 days later - 3 days before his first chemotherapy appointment.

Friday 15 June 2012

Grasping even the most brittle of straws...

The bereaved learn a great deal about human nature. Of course it's a harsh and cruel way to gain this indepth understanding of the human psyche but there's no doubt about it, those who have lost loved ones do gain that unique insight which is: human beings, by their very nature, cannot deal with mortality. It's not just that they're afraid of dying, it's not just that they're afraid of losing their loved ones, it's that they simply are not programmed to accept, accommodate and process the fact that they are mortal. A bereaved person wears their grief on their sleeve. It cannot be hidden. It's in their eyes. It emits a signal... a warning that death was here, death is near. This signal repels others. Those who come near it feel that it must be crushed.

What I am learning is that because I'm the spouse of a recently deceased man, that makes me the closest thing to death that exists for those around me. So, in short, I represent death. I carry it with me. When I wish to talk about our loss - my husband, the hospice, the funeral, the loneliness, the crippling grief - I serve only to increase the 'death' emissions. The only hope for those around me is that I move on quickly, suppress the grief, smile and look on the bright side. People will always look for 'the bright side' regardless of how fucked up things are. The process goes something like this:

THE BEREAVED: Love... grief... heartache... sad eyes. Death emission overload.
THE FRIEND: Refuse to listen/observe. Offers platitudes.
THE BEREAVED: Grief... heartache... sad eyes. Death emission overload.
THE FRIEND: Refuse to listen. More platitudes. Push against death emissions. Suppress.
THE BEREAVED: Reacts to grief suppression. Anger... rage... irritation...
THE FRIEND: Push push push... keep pushing until she smiles.
Ignore... ignore... ignore... keep ignoring until she smiles.
Distract distract distract... keep distracting until she smiles.
THE BEREAVED: Smiles with sad eyes.
THE FRIEND: Observes 'smile'. Relief!
Halle-fucking-lujah, she's healed.
Long live [the pretence of] immortality. 

Tuesday 5 June 2012

A Life is Ending - Part 1

Monday November 21st, 2011, was the second anniversary of my brother's death. His name was Ray and he died suddenly, much to the shock and horror of my family, D included. Those two years (November '09 to November '11) were pretty much dominated by Ray's sudden death - the pain, regrets, loneliness, guilt... the memories. I felt such pain in those early weeks and months and right on up to his second anniversary. Heart-wrenching, soul-crushing pain. My lovely brother. My friend.

It's only now as I sit here, remembering the events of the last 6 months, that I realise how strange and eerie it is that this nightmare, the one we're in now, the one that came on top of Ray's death, started on Ray's anniversary. Co-incidence? If so, it's the first of two that day.

For a few weeks in late October and early November D had a persistent cough. He was also tired but considering the stress of the previous year (money worries etc.), his tiredness seemed quite normal.

Back to November 21st. To Mark Ray's anniversary we planned to drop the kids to school and then collect my mother and visit Ray's and my Dad's graves and go for lunch afterwards. But our youngest child had been sick over the weekend so D offered to take my mother to the grave so I could stay home with her. That morning, while D and my mother were at the cemetery, I made a doctor's appointment for A for later that afternoon.

After their visit to the graveyard, my mother came back home with D. I was chatting to her and A in the living room when suddenly I heard D call out my name. It sounded urgent with slightly panicky overtones. I hurried to the kitchen. He was clammy, sweating and pale and was bent over holding on to the table. He said he had felt dizzy and very tired and nauseous and said he just needed a short nap.

As was his way, when it came to school collection time for the boys, he got up out of bed and insisted that he felt a lot better and felt up to collecting them as normal. D always did the school run and hated not to do it. He took his responsibilities as a father very seriously and was always there for all of us. He would drive anyone anywhere if it saved them time or trouble. Looking back now, he was too strong for his own good. I wish he'd have given in just how bad he was feeling that day because he really must have felt awful. It's not that he pretended... it's that his strength kept him from acknowledging it.

Back to that day... by now A was vastly improved, so much so that she no longer needed to see the doctor. Instead I suggested that D take the appointment and go for a check up. He was feeling pretty bad still so agreed that that was a good idea. Co-incidence number two: what are the chances of us having a doctor's appointment already in place that we no longer needed so that D could get the help he did need? No way would he have got an appointment by mid-afternoon ordinarily.

I waited for D to come home from the doctor. I was worried but not overly so. Eventually he got home (after also waiting for our son to finish his music lesson and give him a lift home). The doctor told him not to worry, it was most likely a virus. There were plenty of them going around. Just to be safe he took some bloods and said he'd be in touch in a few days with the results.

And so Day 1 of this 'new normal' came to an end with us thinking D had a virus or, worse case scenario, an infection of some sort.