The hardest part of this awful grief experience has been the broken promises, the awkwardness, the thoughtlesness, of some people. Knowing someone cares, having someone go out of their way to help, having someone who rings up out of the blue to say "I reckoned you're having a bad day, I care" because it's a birthday, anniversary etc, it's worth so so much.
When the phone is silent, when people cross the road, or when they look at you and know by your eyes that you're hurting but instead of catching your hand they change the subject to something trivial, that cuts through our hearts.
I thought I would lose my mind last year from all the broken promises and abandonment. And the ones who came back on the scene in January, the 1st anniversary, to say 'phew it's a year at last, you can get back to normal now'.
But, after 15 months I'm happy to say I didn't lose my mind AND I've become philosophical about them and stronger for it.
Now I look at them and know that there are two types of people: The Shallows and The Deeps. The Shallows are weak, cowardly, self-serving people who are all about the drama (hospice, ambulances, funerals) but don't care about your feelings once the 'drama' ends - as if our grief was last year's reality show and the season has ended so it's boring now. They have no integrity and no character traits of any value. Harsh but true.
Then there are the rare gems, The Deeps, they are the caring, giving, selfless few who will drop everything to come to you, put their arms around you and cry with you, let you babble on about your love, your relationship, your grief, tell you to sit down and "have a glass of wine", won't judge you for the mounting dishes and the child's dishevelled hair but without being asked will wash the dishes, get the kid's hairbrush and brush her hair and make a game of it. They are gold.
I now feel sorry for The Shallows and I'm glad I'm not one of them because I have empathy. My children have empathy - I'm raising three young people from The Deep species. To hell with The Shallows. Honestly, they're not part of my life anymore because they don't deserve to be.
To the rare gems, the Deeps, the golden few, thank you from the bottom of my heart.
Thursday, 2 May 2013
Monday, 19 November 2012
What's the matter princess?
Diarmuid spent 6 nights in the hospice and, while he was
there, we (my two boys and my little girl and I) slept in the hospice with him. Just
24 hours before he was moved there from the hospital, we still thought he was
coming home and would start chemotherapy a couple of weeks later but instead he was moved to a hospice to die.
My two boys (who were 15 and 17 at the time) knew everything
that was going on. But we hadn't told our youngest yet that her Dad had cancer.
His prognosis was two years so why would we tell her how serious his illness
was at such an early stage? So when we got to the hospice one of the most
pressing issues was the fact that Aisling did not know how ill he truly was.
Well, the boys and I had only found out that morning that his time was short. To recap:
December 14th: He was diagnosed with liver cancer.
December 21st: We were told it was terminal and it had spread. There would be no surgery. Prognosis was 2 years and he would start chemotherapy on January 20th. "Nothing bad will happen for at least 8 to 10 months. You will live a relatively normal life in that time, play gigs, work, hang out with the family etc. Other than chemotherapy side effects your quality of life will be good." (Words of Diarmuid's oncologist - the head of the Oncology team).
December 24th: He felt wretched. Spent most of the day in bed except for one hour when he collected me from the village. I was doing some last minute Christmas shopping for the kids. I cried throughout it as I listened to beautiful Christmas music and dreaded the coming months and years. But he drove me home and we laughed and smiled at each other and he felt happy. Truly.
December 25th: He got up at 6am with me and the kids to see if Santa had come! He had to go back to bed by 7.30am and could not get out of bed for the rest of the day.
December 29th: Admitted to hospital. It was emphasised that he merely had a blockage in his bile duct and a stent would see him right. He felt wretched. He asked me to explain to his friends that he was too tired for visitors but looked forward to catching up with them when he got home.
January 5th: Still waiting for stent. A senior radiographer was called in. Told us the tumour was now 8cms in width and he could go into liver failure. This was not "merely a stent procedure". He was bordering on liver failure. He did not have liver cancer. He had cholangiocarcinoma - bile duct cancer.
January 6th: A delicate procedure was carried out to free the bile from his bile duct. It was a success! We celebrated.
January 9th: Oncologist said he would be going home in 48 hours and was back on track for chemotherapy on 20th January. Aisling made welcome home cards and we got the house ready to welcome him home. He was looking forward to catching up with his family and fantastic friends and was very positive and optimistic about the future. Remember he had purposely wanted to rest and wanted to be much more energetic when he caught up with his friends.
January 10th: Hospice team visited. Suggested he come to the hospice for respite. We were shocked. They knew something (in retrospect). We said we'd think about it but pointed out that his oncologist was happy to send him home the next day! They were not so convinced.
January 11th: I got an early morning call from the hospice team. I met them at the hospital. I was told Diarmuid was dying. He would not be coming home. He would not be getting chemotherapy. We were now talking weeks, not years, not months. He was shifted by ambulance to the hospice.
December 14th: He was diagnosed with liver cancer.
December 21st: We were told it was terminal and it had spread. There would be no surgery. Prognosis was 2 years and he would start chemotherapy on January 20th. "Nothing bad will happen for at least 8 to 10 months. You will live a relatively normal life in that time, play gigs, work, hang out with the family etc. Other than chemotherapy side effects your quality of life will be good." (Words of Diarmuid's oncologist - the head of the Oncology team).
December 24th: He felt wretched. Spent most of the day in bed except for one hour when he collected me from the village. I was doing some last minute Christmas shopping for the kids. I cried throughout it as I listened to beautiful Christmas music and dreaded the coming months and years. But he drove me home and we laughed and smiled at each other and he felt happy. Truly.
December 25th: He got up at 6am with me and the kids to see if Santa had come! He had to go back to bed by 7.30am and could not get out of bed for the rest of the day.
December 29th: Admitted to hospital. It was emphasised that he merely had a blockage in his bile duct and a stent would see him right. He felt wretched. He asked me to explain to his friends that he was too tired for visitors but looked forward to catching up with them when he got home.
January 5th: Still waiting for stent. A senior radiographer was called in. Told us the tumour was now 8cms in width and he could go into liver failure. This was not "merely a stent procedure". He was bordering on liver failure. He did not have liver cancer. He had cholangiocarcinoma - bile duct cancer.
January 6th: A delicate procedure was carried out to free the bile from his bile duct. It was a success! We celebrated.
January 9th: Oncologist said he would be going home in 48 hours and was back on track for chemotherapy on 20th January. Aisling made welcome home cards and we got the house ready to welcome him home. He was looking forward to catching up with his family and fantastic friends and was very positive and optimistic about the future. Remember he had purposely wanted to rest and wanted to be much more energetic when he caught up with his friends.
January 10th: Hospice team visited. Suggested he come to the hospice for respite. We were shocked. They knew something (in retrospect). We said we'd think about it but pointed out that his oncologist was happy to send him home the next day! They were not so convinced.
January 11th: I got an early morning call from the hospice team. I met them at the hospital. I was told Diarmuid was dying. He would not be coming home. He would not be getting chemotherapy. We were now talking weeks, not years, not months. He was shifted by ambulance to the hospice.
January 12th: I was told we were no longer talking weeks, but days. The staff themselves had rarely seen such a steady decline. It was shocking. Bile duct cancer is very rare. It's a monster. Everything had to be fast-tracked. While they would normally break the news of cancer to young children over a period of weeks, Aisling would need to be told urgently. A meeting was set up for the next day, the 13th.
January 13th:
January 13th:
A team consisting of a counsellor, two doctors, two nurses, a chaplain, myself, my sons and my brother sat in a room to explain to Aisling what was happening. The head doctor and the
counsellor asked her to describe what had happened to her Dad. She told them how he wasn't feeling well and how he had seen a doctor and was vomiting and sore. They listened and validated every word. Then they told her about cancer - how there are bad cancer cells and that even though it's often fixable, Diarmuid's particular type of cancer was very bad. They said (in such a kind and loving way) that they had done all they
could but, at this point, there was no more could be done except to ease his pain.
Aisling just stared from them to me, to her brothers, to her uncle. She was mute. I could see the realisation slowly dawning. Her little face was full of desperation - she so badly wanted someone to say "BUT..." as in "but of course he'll be okay" or "but he'll go home soon"...... There was total silence in the room. Then she looked at me for an answer. I caught her hand closest to me and put my arm around her and I said "I think my love that even though the doctors have tried everything and even though Daddy got the best medicine there is, I think..... well I think this means that Daddy is going to heaven". She went white and her little innocent little face went to pieces and the tears poured out of her. Everybody cried. The nurse, doctors, counsellor, me, my brother, my sons, Aisling. The tears flowed freely. Everyone hugged her in turn including her big brothers. She urgently wanted to leave the room. She said: "We must tell my Nanas, we must tell everyone, they should know Mom". That's her. Caring about others all the time.
Aisling just stared from them to me, to her brothers, to her uncle. She was mute. I could see the realisation slowly dawning. Her little face was full of desperation - she so badly wanted someone to say "BUT..." as in "but of course he'll be okay" or "but he'll go home soon"...... There was total silence in the room. Then she looked at me for an answer. I caught her hand closest to me and put my arm around her and I said "I think my love that even though the doctors have tried everything and even though Daddy got the best medicine there is, I think..... well I think this means that Daddy is going to heaven". She went white and her little innocent little face went to pieces and the tears poured out of her. Everybody cried. The nurse, doctors, counsellor, me, my brother, my sons, Aisling. The tears flowed freely. Everyone hugged her in turn including her big brothers. She urgently wanted to leave the room. She said: "We must tell my Nanas, we must tell everyone, they should know Mom". That's her. Caring about others all the time.
Across the hall there was a Day Room where my family and
friends waited and chatted that whole week, taking turns to support us and to
visit Diarmuid. At that moment Aisling ran into the Day Room with tears pouring down
her face - she threw herself into the arms of her auntie and her grandmothers
and said "my Daddy's going to heaven, my Daddy has to go to heaven"
and then she sobbed and sobbed and we tried to catch her before she ran but she
ran down the corridor to her Dad's room shouting "I have to see
Daddy". Then she threw her arms around him and cried her heart out.
Diarmuid gave her a big smile and said "hey, what's the matter princess?".
She looked at me and looked back at him and instinctively knew that he didn't
know he was dying. She didn't mention heaven. She just said "Daddy you have cancer". He said "yes but I'm fighting it princess".
Remember he didn't know he was dying. We had only just found out ourselves how soon he
could be gone. He still thought that chemotherapy would be happening. She
hugged him tightly and let the tears flow. He looked at her and looked at me
and I think in that moment he knew he didn't have long.
January 17th: Diarmuid passed away with our son Emmet holding his right hand and our son, Daniel, holding his left hand. Within minutes of his passing Aisling came into the room (she had been out for a walk with her auntie, Diarmuid's sister) and I knelt down and told her "Daddy has gone to heaven my love". She cried and held him and, along with her brothers, myself, our family, our closest friends, we stayed with him all day, saying our goodbyes.
January 17th: Diarmuid passed away with our son Emmet holding his right hand and our son, Daniel, holding his left hand. Within minutes of his passing Aisling came into the room (she had been out for a walk with her auntie, Diarmuid's sister) and I knelt down and told her "Daddy has gone to heaven my love". She cried and held him and, along with her brothers, myself, our family, our closest friends, we stayed with him all day, saying our goodbyes.
She sleeps in my bed and I look at her sweet innocent face
as she sleeps and I'll tell you something - there's no pain worse than the pain
of watching your children's hearts break. My boys too. My handsome
wonderful boys. Sobbing over their Dad's body as he passed from this world. It
was just so awful. It IS just so awful. This pain... the agony of watching your children yearn for their beloved
Dad... it's indescribable.
Monday, 6 August 2012
Focussing on what I DO have...
"Focus on what you have in life, not on what you don't have."
I read that line today and although at first the cynical part of me (i.e. 98%) wanted to shoo it away as more self-help clichéd nonsense, I quickly realised there could be some sense in it and perhaps it will help. Is there anything at all to be said for focussing on our loss? Will some good or some reward come from imagining if I still had my life with my friend, the father of my children, the man I was with for 23 years? It's good, of course, to always remember him and to honour him but at the end of the day what good can come from focussing on what we are missing out on?
So, starting now, I'll attempt to focus on what I have. My two sons and my daughter are at the top of this list. I also have friends, some a bit fair-weatherish! But some are really wonderful. I have friends who care without conditions; they care without pity. And it's not just their caring that I appreciate, it's the fun I have with them: the conversations, the laughs, the socialising. This weekend I had a wonderful time with a great friend: we had alcohol, we had laughs, we had a shared cynical sense of humour.... it was bliss and there will be more of that in the future. What else do I have? I have two brothers and a mother. I appreciate them. Although I don't have work, I do have plenty of work skills and those skills will help me to find new work and a better financial future. I have a certain amount of sanity remaining. It's not all gone down the toilet. I have a love of books and a love of music, both of which are slowly coming back. I have a lovely city within 15 minutes of me with theatres, restaurants, cafes, bars and live music venues. I have a home (for now at least).
My heart is confused and my stomach is tight with stress; I'm struggling to keep that black cloud away; but already just writing that paragraph above, focussing on what I DO have has made my load feel much lighter. This could be the way forward.
I read that line today and although at first the cynical part of me (i.e. 98%) wanted to shoo it away as more self-help clichéd nonsense, I quickly realised there could be some sense in it and perhaps it will help. Is there anything at all to be said for focussing on our loss? Will some good or some reward come from imagining if I still had my life with my friend, the father of my children, the man I was with for 23 years? It's good, of course, to always remember him and to honour him but at the end of the day what good can come from focussing on what we are missing out on?
So, starting now, I'll attempt to focus on what I have. My two sons and my daughter are at the top of this list. I also have friends, some a bit fair-weatherish! But some are really wonderful. I have friends who care without conditions; they care without pity. And it's not just their caring that I appreciate, it's the fun I have with them: the conversations, the laughs, the socialising. This weekend I had a wonderful time with a great friend: we had alcohol, we had laughs, we had a shared cynical sense of humour.... it was bliss and there will be more of that in the future. What else do I have? I have two brothers and a mother. I appreciate them. Although I don't have work, I do have plenty of work skills and those skills will help me to find new work and a better financial future. I have a certain amount of sanity remaining. It's not all gone down the toilet. I have a love of books and a love of music, both of which are slowly coming back. I have a lovely city within 15 minutes of me with theatres, restaurants, cafes, bars and live music venues. I have a home (for now at least).
My heart is confused and my stomach is tight with stress; I'm struggling to keep that black cloud away; but already just writing that paragraph above, focussing on what I DO have has made my load feel much lighter. This could be the way forward.
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.
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.
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.
Subscribe to:
Posts (Atom)