davidinireland's Blog

i had to stop the chemo, it is causing more problems with my tumor in my neck and is making it swell and become very painful.

i have not been able to type for a little while now, but with the right meds i am able to get through a while sitting at the computer.

i am not able to do capital letters as my fingers are cramping too much, so please excuse all of the many errors typed here today.

a few days after the chemo was given to me, i began to have bad pains in my arm and spine, the spine was terrible as it is so central to all of my movements. my wife drove me into hospital and they gave me some shots of morphine, but it did nothing, then they gave me a few more and it helped a bit, they they plugged me into a morphine drip and after a while i began to feel the pain ebb away.

after a few more hours they let me go home, but they wanted to admit me again, i am not sure why, more tests? but they can do these test with me at home, they do not need to admit me each time there is something wrong with me. i think they find it easier to get the tests done if i am in a bed, but they simply do not understand that the last place i need to be is in a hospital bed, if i need a bed, it is my bed i need.

so it was decided that I should stop the chemo immediately and instead begin doing radiation therapy to the neck tumor to try and bring its size down a bit, just to help with the pain, then, if the radiation works, i will try again with the chemotherapy.

it has not been an easy couple of weeks, i am on a lot of morphine which is making me sleepy, i am on a lot of steroids which are keeping me awake, i am on a lot of lyrica which turns off the body and many of its feelings.

today is the first day of feeling better, the pains are still there, but they have moved from the forefront of my mind.

i begin radiation on monday, they are rushing me through 'verification' and giving me my first treatment all in one day, this is not something that is done here, they usually have a 2-4 week wait between verification and first treatment, so i know they are doing their best for me trying to get me treated as quickly as possible, i am greatful for that.

to all of you that have commented, messaged, tributed, etc. etc. i just want to say a great big thank you for all of your words and thoughts.

i must stop now as the pains are begining to increase.

with a smile from Ireland.

David.

This did not begin too great, I actually vommited on the way to the hospital. Oh, no, I could not wait until they pumped me with chemo, I threw up before that. I felt such a child.

The first thing the nurses said was "don't worry about that, most people who have been through chemo before will do this. It is because your brain knows how bad this is going to be, so it runs through the process even without the chemo". That did make me feel a bit better.

I was plugged into the chemo for about 5 hours. I felt ok for most of the day, a little strange in the stomach area, but it was nausea. Then I went home for the night. Slept well. Woke at 7am and off to the hospital.

The second day of chemo was a much harder one, nausea increased as the day passed, but I was still happy enough, I could handle the worst bits. So after another long day in hospital I went home. That night was not so good and the following morning began a long and awful day.

I woke up feeling pretty poorly, but it just seemed to get worse and worse until I ended up back in bed an hour later. I slept and felt like being sick all through the day and night. I eat nothing, but vommited lots of times. I had what we call 'double ended sickness', if you know what I mean, if you don't, I am happy for you.

The next day I went back into hospital and they were not very happy with the state of me. All of my tests came back with something wrong. They wanted to admit me, but I just kept saying no. So I let them hook me up with lots of IV medicines for the day. But at the end of it, I went home.

Since then, two days have almost passed. I feel some normality at times but it is a constant mix of mild/heavy nausea, then a break for 10 or 20 mins, then it is back again.

It is so good to be home.

The smells of home cooking compared to hospital cooking is so amazingly different.

Having my wife and girls at home with me, not 'just visiting' me is great, it is much more a part of life. When they visit me it is so different, a lot less natural. Oh how I love being at home.

I hope you are all having a lovely weekend filled with happiness.

David.

The last 2 days have been filled with all different type of medical things.

The doctors and nurses in the hospital managed to get me through the various bits that needed to be done in just 2 days! I am sure it is some type of Irish medical record breaker.

There were times when I would look up from a table and see 7 or 8 people doing their little jobs on me! me! little old me! Doctors coming into the room to check things, then off again, then a consultant coming in, checking something else, then off again. So many of these people had cancelled someone else's appointment so they could be at my biopsy. I spend the past two days saying thank you to so many people.

I am a bit sore, but well medicated.

Being home for the weekend puts a great big smile on my face.

Hope you all have a peaceful and happy weekend.

So I am going back into hospital. I am getting a 'port' fitted into my chest , it is used for giving the chemotherapy. I will also have a biopsy done of the lump in my neck. While I am in there they also want to get a series of scans done, CT, Bone Scan, MRI, CAT.

I will probably be gone for a week.

As soon as they have done everything, I am to begin chemo therapy. I will initially be put on a 3 month plan of chemo for three days done in a day ward, every three weeks. But the great part is that they are going to let me go home each night so I will not have to spend a week in hospital each time I am given the chemo. They did warn me that there are times where I might not be well enough to go home and I will need to stay in then, but they are doing their best to let me spend as much time at home as possible. I am very grateful for this as it is the first time to be done with this type of chemo in Ireland, nobody has ever been given it and let go home each night. My consultant has spent a lot of time on the phones to the US where sarcoma studies are way ahead of Ireland, so she has the latest information on treatment.

I hope you all have a lovely week, filled with happiness and joy.

I had better go, I have to leave for the hospital in 15 minutes.

Be well.

David    :)

After months of waiting, being passed from one surgeon to the next, I finally meet the top surgeon in Ireland. He is a professor, neuro/spinal surgeon.

He sat down and said the words "I do not want to operate on you". He then explained to us how dangerous the operation would be and how much damage would be done. He showed us how much of my neck and chest would have to be removed. He used words like "severly disfigured". But his main point was that "I cannot cure you, I cannot get it all out, so why put you through this, it is not worth it".

The only gain would be the pain in my arm would go away, but so would all feeling and use of the arm. I am on enough morphine and lyrica to keep the pain at bay, so he said "if you are not suffering from bad pain, there is no point in doing the operation at all".

He talked about going back to my oncology team and doing chemo to try and shrink the tumor. He said this might give me some time or relief of pain. It will not stop the cancer, but it might slow its rate down for a while.

Next Tuesday I will meet up with my oncology consultant to discuss chemo. She will begin the treatment "very soon" if I agree to it. I am thinking that I will do the chemo, it will be a massive challenge for me, it was so hard the last time. But I think I need to show Niamh and the girls that I am willing to fight for them, to spend as long as possible with them, no matter what it takes, even chemo.

I hope you all have some sunshine in your day and a smile on your face :)

I was given some more bad news, but I was not able to tell anyone, so I kept it to myself (well Niamh also knows). The last CT scan I had was done as they just wanted to see if the tumor in my neck had grown much.

So when we went to see the consultant we were expecting to hear it had grown, I can feel that it has grown, I can feel it in my neck, so it was no surprise when she said it had grown quite a bit, but she looked very sad when she said it. But I was prepared for it so I said to her "thats ok, I knew that it was getting bigger".

But she looked at us with that sad look they use, she tilted her head slightly to one side and she said "we have found a 1cm tumor in your lung, I am so very sorry, I am so very very sorry". It was then that it dawned on me that this is serious.

She went straight into talking about chemotherapy and radiation to shrink the tumor, but I needed time to think about it. Do I want to go through chemo and radiation again, it did not work last time and there is even the chance that it encouraged the cancer to spread quicker.

I decided to wait until I have seen the surgeon who I am meeting in 6 days, I need to hear his opinion on all of the various problems that I have, I need to hear his ideas of time and quality of life.

So right now I am at home. I will see the surgeon soon, then I will be able to know a bit more about the various operations that are ahead. I do know that the lung is the one to be most worried about right now, my consultant made that clear to me.

The fact that I now have a third tumor within 17 months is not a good sign, the cancer is rampant and is travelling through my blood. Could it be that this type of cancer fights back chemotherapy? They know so little about sarcoma that it is hard to tell. I have asked the specialists and I always get the same answer "it could be". Nobody knows. It is possible that the chemo is killing me. So should I take more? It is equally possible that the chemo will work and give me more time, so should I take it?

These are the questions that have been running through my head for some time now, I have only 6 more days until I see the surgeon, after that I am expected to give some answers about taking chemo. So, what do I do?

Sorcha and Jessica are off visiting cousins in Leeds for the next few days, so myself and Niamh are going down to the holiday home ourselves, we will come back on Sunday night and be home on Monday.

Then on Monday or Tueaday we will hopefully go back for a week of pure relaxation. When we are there none of us thinks of the things we think about when we are at home, it is more than a break from home, it is a break from our thoughts.

Now I am not suggesting that we ignore the important things, but we are using this time as best we can to create enjoyment and pleasant moments of time, or memories.

It is hard to think of how short my time might be, but I just enjoy any time I have.

It will be strange being there for a few days without the girls, they add such volume to every situation that it will seem very quiet without them. But it will be lovely being just myself and Niamh, just the two of us does not happen very often, not since we had the girls and as Sorcha is nearly 15, that is not often.

I am feeling stronger today than I did yesterday, it is strange to feel your strength return, nice to feel it as I was so weak. I still walk like an old man but I am gettting a little faster, I am hopless at steps and I am embarrisingly slow, poor Niamh has to hang around with me, moving as slow as I do, I attract looks from passers-by, or so I'm told, I am too deep in concentration to keep myself balanced, so I do not look up, I just keep moving in the direction I am aiming for. I have stopped caring if people look at me, I was a very embarrased chemo patient, but I had not learned to stop looking back, but it has finally sunk in.

We are off to the holiday home in the next hour or so.

I would like wish all of my friends a lovely weekend.

Remember, keep smiling   :)

We spent the last weekend in Wexford, in S and D's holiday home. Well, what can I say other than WOW. It it the most beautiful house and home I have been in for a very long time, and I have been in a lot of houses with my work in the past few years. It is pretty obvious that they have a skill and talent in bringing a house together into a home, such taste, such style. Beautifully decorated. I can literally see the hours of work that they have gone through in order to bring this holiday home into the magnificient home away from home.

We arrived on Friday evening, the sun setting in the distance, the drive was a little over an hour, just perfect. We pulled into the hotel grounds and I could see that there was an air of quality to the whole place, it was fresh looking, everything is perfect, clean, shining. It is quite new, but you can tell that this place is kept looking new with hard work and dedication from those that work there.

We drove through the complex of houses and past the hotel and golf club, down past several very beautiful green areas of the golf course, finally arriving at a point where we must be at the houses we are staying in. The only thing is, these houses are massive, they are big, grand, very stylish, and I am thinking, there is no way we are staying in one of them, is there? So we got out at number 4 and the key fit! We are staying in one of these houses, wow.

So we walked (without shoes) through the house. Our jaws dropped slightly, with each of us in turn saying things like 'wow' as we would each enter a new room. The size of each room is impressive, the decor is more than impressive.

I know it is only bricks and mortar, but it is so nice to see bricks and mortar brought together in such an amazing way.

Now don't get me wrong, this holiday home is not a demonstration of wealth, every piece of furniture is practical and functional, all of the accessories are intelligently purchased items. It is a home, a proper home, with a feeling of warmth.

So I awoke early, as is the new normal for me, but I did not have my laptop to tap away some time. I had to just put up with my own thoughts and a large pot of coffee. I could not take too much thinking so I got out a book and did a little reading.

We went for a lovely walk. Now my speed has been pretty bad since the pneumonia, my legs have been so weak that I am moving like a 70 or 80 year old man. I figured I just needed to push myself a little harder each day, move a little more, move a little faster. The walk through the hotel complex, then down a walk which leads to the beach. It is not a long walk, I don't think, but when you are the speed of a snail it takes ages to get anywhere, so it was close to an hour of walking very slowly, I think, well it felt like an hour. But it was beautiful, the 'beach walk' signposts down through a forest of beautiful walkways, green everywhere in every shade available. There were some steep bit where I had to go so slow it was funny, my legs were simply not capable of it. My balance went crazy for a while and I even had to use an umbrella to keep up at one point. I find all of this funny to deal with, funny as in it makes me laugh, I cannot see the serious side of it at all. It just makes me laugh. I will just grab onto something so I don't fall over, but the reason for the dizzy spells I just put down to lack of oxygen, so I just need to breath deeper.

I do not mean to downsize what my body went through recently, but I want to keep things normal with the girls and I can only do that by being flippant about the whole thing.

We made it to the small beach, it was just perfect, the sun was shining, a nice soft warm breeze, the sea lapping gently up the shore. Not one of us had a camera which is unheard of with us and camera phones but for some reason we all left them behind. We just walked up the beach slowly. It was nice because it seemed to be a normal speed to walk along the beach (80 year old speed), you know that walk a little, stop, look out to sea, walk a little more, pick up a stone, walk a little, stop, throw the little stone trying for that skimming across the water. Well I managed to do that the whole way up the beach. The girls ran ahead and went climbing rocks. Then the four of us walked slowly back down the beach and the girls decided to jog back to the house, they had had enough of my speed. So myself and Niamh walked back together. I seemed to get slower and slower and by the end I was bearly able to walk. When we got home I realised why, my feet had gone like little swollen balloons and my legs up to my knees. So that was the end for me and walking. I now sit here 3 days later, my feet raised high, no more walking for me for a while.

We are back to our 'mixed weather' again, sunny spells mixed with rain and grey skies, who else gets this type of weather as their summer? It is beautiful when the sun gets through, but it is angry looking when it's dull and it is mostly dull.

to get beautiful weather in Ireland is amazing, to get it as often as I have been is just wonderful.

Ireland is beautiful, but add the sunshine and it comes to life in a way we do not see often.

I simply love my home, my home country.

To stay here through the summer is excellent, with my two girls, who are constantly looking for physical and mental stimulation, there is always something moving, swinging, dancing, hopping, bouncing but whatever happens it is moving.

I love to see it, to watch it, to witness it, depending on how they let me view, sometimes I have to be the referee.

The sun is out again today in all its glory.

Life is beautiful today, a weekend is planned which is lovely to have, good times to be had, every day, good times to be had.

We can put a smile on our faces, it can be a fake smile, but why bother with a fake smile when there is a real one pushing through.

The phone just rang, it was my aunt from Canada, Hilda is her name, she is a living legend, she began a battle with cancer nearly 30 years ago and has been winning ever since. Her story is so much better than mine, I wish she would write a book. It was wonderful to hear her voice, Canada is so far away from Ireland, different worlds. I have a lovely family living there and I never get to see them because of the distance. Maybe someday they (especially Nevine) will come home to visit us! It is so nice to get a phone call out of the blue.

I hope all of my friends have a lovely weekend.

:)

I spent some time in hospital, wow, what a time.

I was a lot sicker than I thought.

It is funny how the body can fool so many people. It turns out that I am an amazing negotiator when I am sick. I apparently spent 7 days negotiating a way out of prison (I mean hospital). I made almost a hundred phone calls trying to get out of the hospital, none of these calls got through to anyone but that did not stop me talking to an imaginary person at the end of the line.

I am home a week from prison (I mean hospital), and during that week I have been sick again. Bad times. But the good news is that I made some excellent decisions about drugs to be taken and not taken and now I am on the road to recovery again.

I am almost perfectly healthy, except for the 70 year old man walk that I have mastered and developed.

I have lost another 3 stone, so I am getting pretty thin.

I have learned that I do not know how sick I am until I get better.

I have learned to not act well when i feel sick.

I have learned to not give urine samples to the vet, apparently they do not ask owners of dogs for uring samples, when I meet these people I am to remember that they are probably doctors who are here to visit me and they are not a vet out to see the dog.

I am home, I am feeling so much better, I am smiling again, the sun is shining on our little lives again.

Each day is filled with happiness, I share it with my friends, it is so lovely to share.

I hope you all can share some with me, there is plenty to go round.

I spend a little part of each day thinking of my friends; so many friends I have made, each one of you has opened a little more of my heart and mind.

I think of Kylie and Maggie, Of Sy's Mom, and Sweetieopps, JenD, Frito. all of you and so many more add to my day. You each have your story, you each have your pain, you each have our friendship and I hope one day you will enjoy each others company as much as I have enjoyed yours.

To finish off. Today I wanted to give Niamh a surprise. She has been working so hard lately, I know she needs a break, a holiday. But this causes some problems, we can afford to. I have not worked in so long. So I asked a friend, who owns an amazing holiday home if I could rent it off him, he said no, I could not rent it, I could have it free, and not only that but he is dropping the keys into me tomorrow and we can go on holiday whenever we want!

So my exhausted wife is being brought away, this weekend and next weekend, and then she is going for a full week after that. So, we get to have our holiday, and it is free.

Can you see my smile

:)

I was admitted to hospital, under duress, I might add, with pneumonia.

I was seeing things. I was having mad conversations with myself, and anyone who would join in.

The final straw was when my wife called the doctor to our house and when she ask me why I thought she was called to visit, I said "because our dog is sick".

The sign on this doctors ambulance was 'K-Doc' but I seem to have read 'K9-Dog', so I thought it was perfecly normal to have her visit our dog. But I was a bit unsure why she wanted to take my temperature.

When they eventually got me into the hospital, I lost all reasoning and my mind went out of control. I decided to try and run away. I was chased by security, fought to the ground, sedated and placed in a private room with 3, 24 hour staff!!!!!!!! Me, little old me!!!! Soooooo embarrased.

That was over 2 weeks ago. They kept me in for that long. It turns out that I was only 24 hours away from death. So, thank you Niamh for being the nurse to my life (and the wife of my life).

I am still very weak. But they, after much persuasion, let me come home today for 4 hours, hopefully they will let me again tomorrow.

I cannot type for long, I just wanted my friends to know, I am still her.

My operation is no a long way off a my body is no longer capable of major surgery.

With a smile from Ireland, under a deep blue sky.

David.

Thank you for all of your wishes, thoughts, prayers, cosmic gifts, universal strength, positive vibes and EP community love.

It is easier for me to do this in a blog, easier than individual explanations to each of you.

When I say easier, I do not mean, that I am not arsed messaging you individually. It is because I don't have great news, as you might have guessed.

I find being given bad news is hard to take, but I find passing on that bad news is even harder somehow.

So I hope my dear friends, that you don't mind if I just give the explanation here and not in individual messages.

The tumor cannot be fully removed. It has already spead too far. It has grown into my neck and onto the bone. The most they can hope to do for me is reduce the pain in my arm which will most likely be paralysed from the operation but if I am lucky I might have partial use of it.

I know that all of the things he said add up to one thing. The tumor has spread and is not controllable.

Once he said the words palliative care, I knew what I needed to know.

But the sun is shining in Ireland. We have the most beautiful blue sky right now. I can hear my girls are singing in the sitting room. Max (our dog) is walking past as if there is nothing wrong at all!

I have a smile   :)

I do, seriously.

I am playing the waiting game right now. Each morning I get up and wait for a call.

I found out today that they are trying to keep me at home as long as possible, thankfully, they are trying to line up the various procedures, biopsy and either surgery or chemo and radiation to run back to back. There is so much unknown about what is in my neck that they want to have to various bases covered just in case.

But it is great being at home. I love it. Every moment. None of it is a drag. I think I could go on waiting forever and not mind.

I know that the next stage is not going to be nice, so it can wait, as long as possible, every day is appreciated.

Thank you all for your comments here, for your messages, for your emails, for your gifts (you know who you are, but I don't), for your compassion.

I found angels when I found EP.

I am going to make up that experience now, please join it if you found an angel or two on EP

Myself and my wife, Niamh, went to see the surgeon.

I am very lucky, he is a specialist in my particular cancer, Sarcoma. He has just come back from the US after 17 years, so I could not ask for a better surgeon in Ireland.

It is not a 'mass' in my chest they found, it is a tumor in my neck. He said he is hopeful he can get it out 'cleanly' but that he wants to shrink it with chemo and radiation first so that he does not have to take too much else out with it. So he is ordering a biopsy to be done 'very soon', as he needs to know what type of chemo to use. I will just suddenly get a call, then off I go to hospital. Even though it is Sunday, I am sitting here with bag packed, waiting for a call, I have been for 3 days now.

We have a crazy system here, if a bed becomes empty on a Friday night, the hospital calls the patient at their home and tells them to come in and take the bed so that they are there for Monday morning when the doctors will see them and do tests. So we have to go in and sit there, thankfully they let you out for the day, but every night is very long. It does not seem like a lot if you are not going in and out of hospital reguarly, but those extra few days and nights should be spent at home with your family, not sitting in a hospital, keeping a bed filled.

It reminds me of sun holidays as a child when certain groups of people would run down in the morning and put their towels out on sun-chairs around the communal pool. This is the hospital bed version.

But I have today at home with my wife and two girls, the sun is shining, I have a warm pot of coffee, a smile on my face, whatmore could I want.

I would like to take this opportunity to thank each and every one of you from the bottom of my heart for all of your kind words and messages, you give me hope, love and inspiration. Thank you.

I thought my story of living with cancer had come to an end.

But it never really ends. Every 3 months there is some scan or other, followed by a 2 week wait, then a meeting with the consultant to get the results. Those 2 weeks can drag by, the 'what if it is back' thought running through ones head. So it is living with cancer.

2 months ago my hand started to tingle, I went to my oncology consultant and she ordered bone scan, body CT, head CT. But they came back clear.

The tingley hand became a sore arm, so I was sent for more scans, which came back clear. Then an MRI.

Today I got the result of the MRI, there is a "mass growth in my chest which is 2.8cm X 5cm.

As my primary cancer was sarcoma, they do not want to do a biopsy as it would almost certainly spread. So I am to have an operation to have it removed.

I don't really know any more than that.

It is like I am starting all over again, we are starting all over again.

I will see the surgeon next week.

Until then, we have a nice long weekend, so I plan to enjoy every moment. The pain in my arm is pretty severe at times but I have some painkillers to take the worst bits away.

It is back to cancer world, for me, for my wife, for my girls. It is so unfair on all of them. We try to hide the bad bits of life from our kids, but we have to be honest, it is not fair on them to live a lie.

It is not like last time, something is different, maybe it is not cancer, maybe it is just a growth. So I still have hope on my side, but I was told to be prepared for the worst, but there is still hope.

But it is a long weekend, time to enjoy, time to smile, to be happy, to enjoy the little things.