In the blink of an eye...

I have blogged about this quite a lot over the years, but from time to time the urge to try and connect with my true feelings on the matter resurfaces, and eats away at me for a bit. Like now. For some reason, after watching the scene from a TV drama, the matter of death comes flooding back.

February is always a pretty dark month for me anyway, even with the sunshine on top, below the surface bubbles a little anxiety, and I guess a little sadness. For years it was about my daughter. How dare I celebrate a birthday without her in my life. Especially with hers being just a few short days before my own. But as the years have passed, the reasoning has changed, and possibly to more morbid reasoning.

Feb 13th 2008, my mum came to me and told me she thought she might have cancer. My birthday that year (the next day) was spent at the doctors, first getting her an appointment for that day, and then being there while the doctor examined her and confirmed she very much had breast cancer. And a long journey began.
With her 70th birthday just around the corner the appointments started, and a few days after her 70th we went the hospital where I was called in to the consult room and asked to reason with her by the specialist. Having examined her she had cancer in both breasts, and was refusing ANY treatment. By the time we left she was open to the idea.

After a long fight, and some true highs, on August 5th 2011 mum finally passed away. Sitting by her side, watching her breathing become laboured, before finally exhaling for the last time, it was quite a surreal moment to watch your only parent die before your eyes. Thankfully, it was a rare occasion that myself and my sister were with her, with no kids etc. So part of me feels she found peace in that moment, and chose it herself.
Medically the morphine inhibited her breathing, and her already weak body gave out. Either way, she went peacefully and with dignity, just as she would have wanted.

Mum's passing is probably one of the most profound for me, as you would expect, but the list of people I have lost in all manner of ways is just too long, and one that haunts me every time I recall who, how and when.

In fact the above is the reason I am writing this now, as another year ticks around for me, and I turn 42 now, I look back at the long list of friends who have not even made it this far in life. Ill health, accidents, and suicide, has taken some of my closest friends over the years, all my junior. I said many years ago, back in my twenties, that I would be dead before I was 40. However at that time I really don't think I had given the thought of death much real consideration. Greatly unaffected by it at that point, it was just brave to talk trash about death, but as the years have passed by, it means more.

Given it can come in so many ways, never knowing what the cause will be. So many lose their lives at the hands of others, through no fault of their own. Accidents on the UK motorways today are a great example of this.
Take a look at the statistics for a moment. In the last week of January this year, 12,900 people in the UK died. That's 1,842 people a day or 76 people an hour. More than one a minute.
Now of course yes a lot of these are natural causes, illness etc, but what difference does that make? Mum knew she was going for 3 years, but still left 2 kids, 5 grand kids and her sister all with a hole in their lives.

My point is, and its a very vague one, death is all around us, just around the corner, how many people in the UK alone have died in the time you have been reading this. How many families every hour begin the painful journey of letting someone go?

The age old question, are you scared of death? Well are you? I have thought about this over and over for years, and still can't make sense of my conclusions. Death itself is final, once its happened, its done with, for the deceased at least. Fear goes away, pain too, but for the families it is only just starting.
My feelings on it are maybe a little too rational for some to comprehend. In conversations I have had about it in the past, I have come out looking a little strange to say the least.
When I think about death, it makes me sad. I like being a part of peoples lives, I like making a difference, and creating memories with people. When I look back at people I have lost, its the memories which keep the person with us. The thought of that ending is sad for me. Just as it saddens me that I no longer have them in my life to enjoy their company and make more memories.
The cold harsh truth is though, we all move on. While we remember those we have lost, our lives continue and adapt. So to believe that our passing is anything but an event in our friends and loved ones lives, is to me at least, somewhat irrational.
That said, my take on death in general might not be what you would call the average or common perception.

The other part about dying which really sucks, is the future. The crazy and dynamic world we live in is constantly promising and making leaps forward, space travel, technology, health care etc. To think that at some point I will stop seeing these advances is one which actually saddens me deeply. Maybe its my techy geekiness that drives that emotion. Maybe its my detachment from others around me which makes me feel this way. Grasping for something to hold on to and be relevant to me.

So am I scared of death, and the event it is? Hard to say, I have never been close enough to know the answer to that. My rational is simple, I can't control it, I am not the master of my final act, and whatever lifes plan is for me, I have to suck it up. Its nice to imagine it will be painless, but not for me. More for those around me. I don't want a wake of sadness left behind me, and I guess that is one of the reasons I try to be so open about my thoughts and feelings. I can't say another word when I am gone, so would love to think that in my ramblings both verbally and written, that people can find the answers to their questions. Who I care about, love, and my feelings on all aspects of life.

I like to think I am an open book, I encourage those in my life to challenge me, question me, and discover all they want to know on a daily basis. One day, the final day will come, and I hope dearly that I leave no confusion or unanswered questions behind. Until that day, I will keep throwing my thoughts out there, and try and make sure I have it all covered.
I do have a project I really must complete one day, one I have spoken of before. It has had many names, but 'If tomorrow never comes' seems the most prudent.

A frank summary of all things truly meaningful to me. Feelings, memories etc, which I would want those involved in it to know, just to confirm they know, and will forever know how I feel about them and our time together.

So, that's my thoughts for this Valentine's Day 2015, and of course my birthday.

Live every day like your last. Tell people how you really feel about them, and don't try and find the right time for things... It might never come, then it will never happen. Most of all, smile, and enjoy the gift of life you have, and spend it with people you care about.

Thanks for reading, sorry for the downer.

PS, some stats for those interested. A full breakdown of the 491,348 deaths in England and Wales in 2009 (yup almost half a million people in one year)

http://image.guardian.co.uk/sys-files/Guardian/documents/2011/01/14/Mortality_England_and_Wales_2009.pdf

To write, or not to write, that is the question.

As some of you may recall, a few years back I lost my mum to cancer after a long battle. In the wake of that, I started writing another blog called The Diaries of a Cancer Carer. The aim of this blog was mixed. Self help for myself, as an outlet of all the emotions and experiences , but also some kind of reference to others going through the same.

A short while into the writing, I kind of lost my way for a bit, so the writing ground to a halt. But recently I have been inspired to maybe give it another shot.
I did buy a nice shiny new PC  while back so I could carry on writing another old project, but I don't seem to have found my way back to it yet. Who knows, maybe this is what I need.

One thing I DO need is a proper keyboard. The one on the Dell, this one on my Chromebook, and the one on the laptop just are not up to the job of a proper keyboard pounding session.

SO...... Shall I knuckle down and get back on with it?

Wow this is SO much fun!

The ambulance crews (yes 2 of them) spent the best part of 2 hours with mum. Talking to her, testing her, finding thingd wrong with her etc, and everything points to a trip to the hospital.
As soon as it was mentioned, the defences went up and the arguing started. Refusal to go to Lewisham hospital, they treat her like a prisoner and she is not going there.
A rethink and how about St Thomas's. No, their patient transport there is shocking and she is not going there. The list carried on, Kings College, Guys, but no no no.
Eventually they suggested taking her to St Christophers Hospice, amazing treatment and care etc, but shock horror, NO!
Apparently her visit there last week was very bad, she could not stand the noise there and now doesn't like it.

So after an almost 2 hour stand-off they finally had to offer her the "I don't want your help" form, which she signed quite happily.

So she is left with, a urine infection, severe dehydration, an irregular heart, no appetite, no strength and no will to go on.

The GP called shortly after they left and bluntly (as he usually is) asked did she not care about the impact she was having on others, she screamed down the phone at him that she was sick and tired of caring what other people wanted, and was doing what she wanted now, and that was doing nothing, and being left to do her own thing and slip away.

Problem with that is, none of the conditions from the symptoms she is displaying are related to the cancer, so it unlikely that "this is it" at all. So instead she is committing to lots of pain and discomfort, weakness and less dependency, and infection spreading to her kidneys. Which she will no doubt say the cancer is spreading to too.

So here I am, at home, on my birthday, 3 years to the day this journey begun, wondering what I am supposed to do. I will admit I am feeling VERY resentful right now. Disappointed that mum is doing this to herself, and feeling its fair on everyone else around her to be left to cope with this.

When my sister asked earlier if she had wished me happy birthday she just grunted "NO!".

Its not about my birthday really, its about her lack of comprehension of how this impacts me and my sister. Mum doesn't want to talk to me at the moment (in the devil), hung up on the doctor, but is nice as pie to my sister, laughing and joking with her.

Oh well, I guess I better get back on track, I was meant to be having celebration pizza today, but for some reason have lost my appetite!

Thanks for reading
Regards
Michael

Sent using BlackBerry®

"I give up"

Ok so today is "I give up" day, mum not me.
Since the other day with the change of colour of one of her meds she has become more and more determined to do things her way. Refusing to take the yellow pill now, so I have changed it with the few remaining ones of the other colour until I can see the GP about it, and now eating less and less.

Needless to say it is frustrating as hell to sit back and watch someone slowly starve themselves, as well as have such a low intake of fluids.

To me, another stay in hospital is on the cards, but if course she can refuse that too.

She said in short to my sister today that she is fed up of it all now and just wants to give up. Which is fine if that's what she really wants. But there is a right and wrong way to do it, and right now, it's the wrong way of doing it.

On top of all this, her interest towards her sleeping tablets is a worry too. Complaining that I won't let her keep the entire pack of 28 in her room. My reasoning to her for this is the kids. All she has to do is drop one, or the pack, and one of the little ones could be enticed by their pretty blue colour and down some.
Obviously I have a dual agenda, and my other concern is, with no one about, on a bad night she could decide to take more than she should. For obvious reasons I want to minimise this risk.

One way or the other I am going to have to speak to the GP and the hospice in the morning and try and get some advice and some hands on help with all this, as it is rapidly becoming more than I can deal with.

I can't imagine how it feels to be going down hill, knowing you are terminally ill, and at any time there may be a droip off point. But at the same time I can't imagine not trying everything possible to stay on to of my game too. Maybe its because I am not in that position, maybe we have different mindsets or something, but I can't figure it out.

There have been numerous "false alarms" along the way with her getting ill over something totally unrelated, and we go to the hospital, she stays in, gets hydrated and comes home much better. But this time the train of thought is on another route. Fighting help, refusing to discuss, and turning away almost anything offered to make life a little easier.

Needless to say, that just makes my life harder. I know, I know, poor me, but I'm not the one dying right. Nope, you are of course right. Instead I'm the one feeling shitty about being off work for so long, wondering what is being said about me, on medication so I can think straight and life a "normal" life, and be there for my mum while she wastes away right under my nose. What would I know, right!

Ok rant over. Here's to hoping that I can get some help from the GP and hospice with this tomorrow.
Tomorrow, my 38th birthday, and 3 years to the day that I ran around like a crazy man trying to get a doctor to see my mum who had just admitted to me she thought she had breast cancer.

Birthdays are great eh!

Tense times ahead I fear, but time will tell.

Regards
Michael

Sent using BlackBerry®

Hmmm, a downturn or a bump?

Well I'm hoping its just a bump along the way, but not too sure. But mum is now back to not wanting to eat or drink much. Becoming tired and weaker by the day, and relying much more on the wheelchair to get about.

The steroids are being reduced, and since dipping from 2mg twice a day she has slowed down. Even on 2mg once a day she was still eating and quite active. But now on 0.5mg a day she is actually using the walker around the house rather than carrying it, prefers to be IN the wheelchair when out and about, and is really off her food and drink. Its a chore to eat. My worry, dehydration.

Yesterday we went to St Thomas's hospital to get mums "surgical appliance" also known as a wig, which she seemed very happy with. However today while getting ready for St Christophers she said she would not be wearing it as it was a bad fit and looked silly, and quite frankly could not be bothered to put it on.
She added on the that she was "very very sick".

A little while later we toddled off to the hospice for a meeting with Karen the nurse. Enquiring into mums health was like asking a 2 year old where the put the car keys. Not really willing to discuss it much. Changing the subject whenever possible. All the symptoms were to be blamed on any medication that she could remember she was taking, and promises were made that she really has no interesting on following through with. Using a nasal spray, trying to drink more, and seeing the GP later. However she WILL be seeing the GP, I will make sure of that.

A number of things could be contributing to this "bump" in the road but without tests and trying meds we will never find out.

We are returning to the same familiar "no I'm not doing that" attitude, which usually results in an ambulance and a week in hospital. Sadly it seems we have again passed the point of reasoning, and she just thinks doing nothing about it, and sleeping more will solve the problem. So fingers crossed the GP can put her on the right track, although at this rate a referral to the hospital.

So, back from the hospice now, lunch made for mum, just waiting on the carer. This afternoon, dog walks then off to the GP @ 3.30 to get mum seen.

Here we go again?
Regards
Michael

Sent using BlackBerry®

Well done to mum today.

Well its been a very physical day for me today, but let me open with the main point of this entry. My mum, good ol' girl.

I took her to Battersea Park today, I'm slowly upping the scale of the challenge for her, each time choosing a location and route that is manageable but can be cut short. While having interesting surroundings which inspire wholesome conversations.

So today's location, Battersea. A little bigger in circumference than Dulwich I would think, and plenty to look at (a mens hockey game certainly caught her eye lol). Its a lovely park, one full of memories for me, and one of my favourite places in London to relax. So much going on, yet so peaceful too.

When we got there I parked up by the meter, and fed it with the £2 minimum which bought us two hours. After getting mum and the chair out of the car I checked the time on the ticket and said out loud "two hours that should do". Mum replied something to the effect of there was no way we would be that long as she could not walk for that long. Needless to say she was right. She only managed an hour and 49 minutes lol. Bloody well done. Not sure on the distance but a good show! She was very surprised but pleased with herself.

Now to find a bigger challenge for tomorrow lol.

The rest of the day has been pretty ok. Let the carer in this morning, then the daily routine of breakfast (shake) for me, fed the dogs, swept the floors, cleared the garden of doggyness, however I am ashamed to say I forgot mums meds, she actually reminded me today, oops!

When I came back from the morning five miles with the dogs, the carer was waiting on the doorstep, early if you would believe it. Terrified of Aana she stood back while I opened the door, all the time commenting on how cuddly Aana looks.

After finding mum and greeting her they went to the kitchen where they sat and chatted. Mum had some toast and tea for lunch, and they spent the next almost 30 mins chatting and laughing their hearts out. Its refreshing to both see mum and the carer bonding now, and also mum socialising and being so happy and jovial.

Later as we drove to the park she got talking about her hair loss, and commented on the suggestions people made, and how she wants to do her own thing, as its one of the only things she can control. The topic swayed about from talking about what stresses and depresses you, to how you cope with the things that bother you. Another bonding and memorable moment there, where mum has opened up for a bit and let me in.
I mentioned to her during the conversation that it was clear to me that there are still things on her mind that she needs to get out, but that I respect her wishes on how and who she chooses to do that with.

Phew so there you go, digging deep mentally, emotionally and physically all on one day.
Regards
Michael

Sent using BlackBerry®

Dulwich Park.

Just got back from a lovely walk in the park with mum. All part of her keeping moving plan, giving her some exercise, physio etc. Just got to work out how to get her moving her upper body too and build up some strength there.

She has done really well walking, managing a complete lap of the outer circle and then a lap of the lake too. All at a good pace, without rest. Very impressive if I do say so myself.

Shame it started raining, but we had a good "rush" back to the car. I have to say the conversation was wonderful too. Warms the heart having a chat like that with mum.
Regards
Michael

Sent using BlackBerry®

So the doctor says......

Oooooooooooook this is how it goes.

Finally got her to the hospital, parked as close to the dept as possible for her, only to find they have moved it lol. Sister helped her there while I got parked properly and not pay extortionate rates for parking.
Lovely new department, in the new wing, so no more dark broom closet anymore.

Running a bit behind, but got seen within an hour of the original appointment time. Me and my sister waited while she saw the doctor, then when she came out, I popped in. I was welcomed by the doctor and specialist nurse who sat me down and filled me in on the whole matter. Mum had apparently said no to me sitting in previously.
Suprisingly on the journey home she was 100% straight about almost everything said, which was pleasent.

So, the prognosis, outcome, road ahead.
The right side has become very large now, and radiotherapy is not considered a viable option. Chemo "may" have a partial effect, but the preferred treatment is now surgery only. HOWEVER, her COPD is in the way of that, with her breathing being considered borderline too bad for general anaesthetic, so she has to have a complete medical inc scans, xrays etc to see if she is fit enough to even be considered for surgery... not that she has accepted having surgery, but they are thinking ahead.

Unfortunatly, due to the size of the lump now, it would be a more intrusive surgery, with the breast being removed, and her requiring a skin graft to cover it up and help it heal. Given that she was against a simple lump being taken out, I cant see her going for this at all. Myself, the doctor and the nurse are all in agreement that she has made a very rational decision to let the cancer take its course, and to see it to the end with no further treatment. So I am grateful to the doctor for continuing to pursue the surgery route even though its an outside chance.

The COPD is what is causing all her main symptoms at the moment, for which she needs to go back to the GP, so I am in the middle of trying to get that sorted out for her too. Once again, unfortunatly she is unlikely to take on board much of what they say or give her, so the condition will get worse. Amazingly with full blown cancer, its the COPD making life awkward for her now. So hopefully we can get some help for her there, and make life a little better for her, a little mobility and freedom. But the harsh reality is, she is going to need to be watched much closer again now, with the risk of her passing out again.

So the road I forsee is as follows.
Refusal of any other treatments, and letting the cancer take its course.
Supervision from the hospital, and pain meds given to make things comfortable.
Reluctance to get anything done about the COPD
Breathing getting worse and worse.

Hopefully she is "friends" with the doctor again now, and will continue to go there and get help from them, inc pain relief.

Next appointment has been set for within a couple of weeks time, to go to Guys to see the specialist there. Updates to follow.

There is always somthing!

Bah, that scuppered my plan slightly. I thought I had some old foodpacks let, but turns out all I have is Veggie Soup, which is ok, but I can only really stomach one a day lol.
So eBay is my friend, and I have ordered a weeks worth of foodpacks, and can only hope they arrive soon, so I can get in the flow of things. In the meantime I need a new blender too, my old one is destroyed now. (cant use VLCD foodpacks without a blender!)

So its a Slim Fast bar for breakfast, followed by whatever I can pick up in Sainsburys on the way to work for lunch and dinner.

On the plus side, the dogs have had a nice walk this morning, and the weather was rather nice too.

In other news.......
Following mums decision on Saturday to stop taking her medication, guess what. Yup thats right, she is feeling ill again now.
Insistant that she is NOT going back to the doctors to discuss alternative medication (I beg to differ), I get the feeling there is a well thought out plan in amongst this.

One minute she will be gasping, saying how bad her breathing is, the next she is gassing on the phone to her sister with no problems. Which kind of indicates she is laying it on a little thick at times. Her conversations with the doctor on the phone are the same, to the receptionist she can talk normally, as soon as the doc is on the line is wheeze and gasp time.

Anyway, the plan I speak of..... She has an Oncology appointment on Thursday, and I get the feeling her health will fail just enough for her to say she cant make the appointment. Which of course is rubbish as I will carry here there if I have to. But I get the impression she is gonna try it. Why? Simple, she will be seeing the doctor who she saw originally who made the cancer diagnosis, and who she now intensly dislikes.

Whatever the case, she WILL be making her Oncology appointment on Thursday, and she WILL be going back to see the GP regarding alternative meds for her breathing etc. Watch this space.