Monday, January 12, 2015

Time out

Apologies for the glaring gap in this blog. Mid way through my mothers diagnosis, and on travelling to Wales to keep my aunt informed, my aunt herself was diagnosed with breast cancer also. Following mums passing in the August I allowed myself some time to start adjusting to a new life. Sadly during this time my aunt took a turn also, and my attentions turned to her well-being.

Sadly now they have both passed, so after much time reflecting, I have decided to take the time to get the blog back on track, and will begin to do so over the coming week..

So I dedicate this whole story to the true heroes of the tale. My mother Ann Snasdell, and my aunt Joan Hughes, may you both rest in peace.

Wednesday, March 9, 2011

Self check time!

For anyone starting out on the journey as a carer for someone close to them, this is the first time you are going to get for some self reflection. A little window of time that allows you time to be you. My advice.... TAKE IT! You really won't realise at this stage the sheer amount of pressure you are already under. You are caring for someone, arranging a multitude of things to enable the treatment and help process, taking on board that someone you love is ill, and somewhere in the mix you actually have to continue to function to full capacity in your own life too. At this stage I though I was doing really well, and to be fair all appeared fine, and I seemed to function pretty well. But with hindsight, getting some help early one, pacing myself and sharing the workload would by far have been the better decision.

Ok so my situation was a little out of the ordinary, but if anything it was making life easier for me not harder. At this stage I was off work ling term sick with the arm, and being post surgery my return was not set in stone. So apart from the limitations of movement in my arm I was a free agent to attend these appointments with mum. I realise and fully appreciate how "lucky" I was to have this opportunity to offer so much support at this stage. I also realise this is not the norm for most people in my situation, so if you are trying to juggle life and hospitals, it's going to be an effort. So again I say, if you can get respite, take it whenever possible.

Remember you are only useful to the person if you can function. If you let yourself slip under and are compromised in your ability to care, then you cease to become the effective carer you want to be.
My own personal blog was where I spent most of my time reflecting on things, and for me in a strange way that worked. Receiving feedback from people, getting advice from people who understood where I was coming from, and most of all being able to read back through my entries and make sense of what I had been saying or feeling a week or a month ago.

At this point a pattern was emerging in our family, and based on my lack of commitments to other things, and me having more "free time", it was becoming obvious that I was from this point on the primary carer now. Now this isn't a bad thing, I was willing to take it all on. But what I got wrong was to turn my back on occasional offers of help.with hindsight, every little helps and a break is a break. My issue was that I was still regularly attending physio for my back and arm. Private and NHS physio, as well as clinic appointments for follow ups on my arm, attending the GP regularly to manage my absence from work, oh and 2-3 appointments a week at least with mum too. And in between all this, trying to carry life on as normal, with getting mum out and about, shopping etc.

So from this point on, self check is important. As m sure you will see from my battles with myself and my sanity over the coming months.

At this early stage the cracks were already beginning to show, stress levels rising, irritation levels through the roof, and patience almost non existent.

The appointments begun!

Just a day or two after the results of the tests were given, so the appointments started. Have to say it can be quite overwhelming for someone who is not familiar with hospitals and travelling around London. Thankfully I have quite a good knowledge of the hospitals and getting to them due to my own ridiculous health, so this was not going to be a problem. None the less, the sheer number of appointments tha suddenly pop up is hard to comprehend until you are trying to schedule them.
Within days you are looking at blood tests, scans, X-rays, biopsies as well as oncology to decide treatments, doses, follow ups etc.
It's quite strange that as I'm looking back through the entries of the past 3 years I realise how much of this I have forgotten about, or at least put to te back of my mind. It really has been quite and epic journey to date, and I would do it all again in an instant if someone I cared about fell ill.

So the first day of proper appointments was Thur 6th March. This day was investigations day really, with a whole series of bloods being taken, and various other tests, mainly to check her overall well being. This was to assist their decision for medicating her. The other side of things was to have X-rays to make sure they knew what area they were dealing with. One of the important things to realise at this stage is cancer is a nasty little bugger, and can get all over the place. So actually seeing signs of it in one part of the body, does not mean that is the only place it has crept into. Because of the nature of the beast it is important to make sure all other areas of the body are clear of it, before putting the body through the process of chemo or any other treatments.

The way these tests are done is all very swift, with no scope for discussing the results at this stage. It is simple fact gathering for the specialist. So as frustrating as it is, rooms are entered and left quickly, with nothing being said between the parties. I must admit that it seems to work better this way for one simple reason... Information overload. Having just taken on board what was said by the consultants, it would be impossible to just a few days later start digesting a load more medical talk, and put it all into context.

The only thing you do start to notice when spending a lot of time in a hospital is just how busy they are. Dumb thing to say I know, but when you just spend 30 mins in a hospital you don't really take on board how much is actually going on in there. Then suddenly you spend a few hours in various departments and really start to appreciate everything that is going on, and how one simple thing can bring a department or indeed the whole hospital to a standstill. On our first big appointment day we were scuppered twice. Once in the blood test clinic when a small child passed out, and the second was an influx of blue light patients, calling certain doctors and specialists away from their clinics to attend to emergencies.

At this stage in the journey two things were frustrating me. Firstly the lack of emotion to the whole matter, I still seemed very detatched from it all. Was really not giving the whole "mum is dying" thing much thought. To be fair this is pretty normal for me to remain detached from a situation like this. Was not sure I would with it being mum and all, but early days this was certainly the case. The other frustration was my own health. Having only has surgery at the beginning of the year for release of the tendon in my elbow, I was still in a fair bit of pain to say the least. while you try and put this to the back of your mind, it is not always so easy. And sitting in the same hospital, one floor up from the clinic YOU attend, is really quite annoying to say the least.

Going back to the day, the one thing that is noticeable is the flow and frequency of appointments. Having only converted to a Blackberry a short whle beforei have to give it credit, and admit it made life so much easier for me, being able to keep tabs on what was happening on any given day, which department to go to and their contact details. Invaluable to say the least.

So after much prodding and poking, Day 1 of tests was over. The next was scheduled for the following week, and this was the much dreaded CT scan. Mum was not looking forwards to this as she said if there was more cancer, she didn't want to know about it. Easy to sayand just turn away from, but better the devil you know etc.......

Tuesday, March 8, 2011

March 4th 2008, the results are in...

So almost 2 years ago to the day now, and we returned to the hospital for the results of the biopsy and other tests. As you can see from the attached link, a lot was said.but let me try to put this all into context, with my now distant and experienced view of that day.

The results were inevitable really. Having alread been examined and diagnosed by Mr Hamed, it was not a matter of IF mum had cancer in both breasts, but more, what could be done about either or both of them. The diagnosis was explained in detail, and the list of options were to be explained. At this point I was in the waiting room, allowing mum some dignity and privacy while she was prodded and poked in the examination room. Like last time I was eventually called in and sat down.
The nurse and consultant explained the details of what they had found from the results, told me what it all meant, and got down to the conversation of treatments.

You can imagine my shock when Mr Hamed opened by saying mum had agreed to give chemo a go! Wow. From one week ago where she had just wanted to roll over and die, now she was expressing an interest into probably the roughest treatment open to her. Radiotherapy and surger had been suggested, however with the limited facts mum decided she would go with the "least intrusive" treatment. This however as some will know is not exactly the most accurate description of chemotherapy. Putting mum to one side for a moment we spoke frankly about the other options, and what the predicted outcome of those would be, just in case mum wanted to discuss them at home. She had refused to take any info on any other treatments, so I made sure I got what I could and left the appointment as well informed as I could be. This again was a decision that would prove invaluable, and also soon become a habit of mine.

On ending the appointment a basic prognosis was given. That was in short, the treatment on offer was more to do with comfort and maintaining the best possible condition, whilst also accepting it would NOT be a cure, and that from this point in the condition should be deemed terminal. As you can imagine, that's quite a difficult thing to hear and comprehend. She however claims she was always sure this would be the case,so was no surprise to her. Somehow I have my reservations on that. Believing something, and consigning yourself t death are two very different things. I think both of us left the appointment that day understanding, but not yet accepting what had been said.

As we went home I left the conversation for a while. Wanting mum to be the one wanting to discuss the matter, and just trying to focus on other this for the time being.sure enough it was not long before she started talking about it. Letting her lead, wanting to hear her purest thoughts on the matter without influencing her words with mine, I just left her to speak. As the conversation moved onto her accepting the treatment she explained why she had suddenly changed her mind.
It was apparent from this that while a quiet and humble man, Mr Hamed is also a very clever man at making his point, and pulling no punches. He had basically explained to her that there was NO easy option, slipping away was not as easy as it sounded, and that there were two choices. Chemo to get the lump under control and reduce it in size, or a slow painful undignified death. I know at this point it might seem extreme, but he was instrumental in being the detached influence on mum, and the one who got the train of thought moving. 100% support and commend him for this decision.

I should explain a little, the main tumour that mum has found, the more threatening one and the one that required immediate treatment was pushing through the skin of the breast. Actually sticking out of a wound in the side of her breast, which was weepy and predicted t just get worse and worse. In fact the only reason she had told me about it in the first place was because it was beginning to weep. The first choice of treatment was to whip it straight out and clean the area up, but she didn't want this. So the chemo was planned to reduce the size of it, hopefully make it shrink down to a manageable comfortable size, and stop the weeping. The other option was, the wound would get bigger, wetter and more infected. Causing extreme pain, require lots of cleaning and dressing, and probably become infected and very smelly.

Now I'm sorry if at this point I paint a scary picture. But there is a harsh reality in here somewhere. Not every doctor or consultant will have the morals or ethics to make such a detailed and scary diagnosis, but it's for the best. Cancer is not something that happens inside the body where no one can see. It is a horrible horrible disease which can do all sorts of things to the human body, and cause problems that you would not even imagine. I am saying all of this for the same reason he did.... For peoples own good. It is only fair to know the truth from all angles.

Ok, so there we are, another appointment out of the way, another step towards dealing with the cancer. And most importantly the start of a fightback from mum. The woman who less than 2 weeks ago said she just wanted to "give up".
I think I should make another thing clear at this stage, my intentions at this stage are the same they have always been. From Day 1 my attitude has been it is her life she is of sound mind, and for the main part I would just respect her wishes, and once a decision is properly made (not irrationally) I will respect it, and go along with it. I'm sure you will see a battle with myself unfold as the story does, but for now, I was very happy with her choice to at least acknowledge the situation and accept some help.

From this point on, life is about to get very busy for us both, so let the flood of appointments begin.

Thanks for reading.

Monday, March 7, 2011

The next step after initial diagnosis.

Well as anyone who has dealt with cancer reading will know, once things get started, it can all move along very fast.
For mum, or us as I usually refer to the situation as, things were indeed quite rapid. From seeing the GP on the 13th-14th, and being referred to the breast clinic, to receiving the appointment was a total of 3 days. On the 17th we received and urgent referral to the unit for the 27th Feb. Naturally it was pleasing to experience such swift treatment at this stage.

On the days running up to the appointment there were many conversations, mostly filled with doom and gloom, and mum expressing how she just wanted to let it run it's course and be done with life. Quite a normal reaction for someone of 70 years of age to have I am told. But never the less this is my mum we are talking about, and I was not about to give up on her quite that easily. Not applying any pressure to her, but instead relying on logic and common sense,I took the time to research all kinds of treatments, just to at least arm her with the facts about what happens, and not the Hollywood version that so many are familiar with.

Trawling the internet I found info on all sorts of common used drugs and treatments, and got her to discuss them if nothing else.
By the day of the appointment she had managed to absorb almost every myth and bad fact about cancer treatment, and prepared herself to reject anything the threw at her.

Now the journey was really about to begin. We arrived at Lewisham Hospital with plenty of time to spare, and found our way to the clinic. Knowing how much technology and new building there is at the hospital, I was shocked to see that the clinic was just a pokey little side room with a few offices off the main reception. But hey, this is not about looks it's about treatment right! We booked in, and the first thing that struck me was, oh my god, all these people sitting here in this one hospital, at this one time of day are all coming to see if they have breast cancer, or to be treated for it. This is not a screening clinic, this is a referral clinic. To say I was dumbstruck by the number of people there is an understatement.. Reality check..... Cancer is rampant in mankind, and this was my first exposure to just how seriously it affects people. Young, old, women and men, I just could not stop my mind going mad about how many people really live with cancer day to day.

So after a short wait it was our turn. Mums name was called, and she rose to her feet and walked towards her new consultants office, Mr Hamed.
Now it's only right to say at this point that mum is hard of hearing,, aka deaf, and has for years chosen not to wear a hearing aid, so communication, especially listening is a struggle for her. About ten minutes passed and she was still in there. All the while I sat waiting, for the first time having a conversation with myself that my own mother was in speaking to a consultant because she actually had cancer! Eventually the door opened and out walked a nurse. This nurse since today's introduction has been instrumental in mums care and well being, and is a testament to the service the much complained about NHS provides. Joan Travers you are a wonderful woman!

So, out she came, and walked towards me, speaking to me by first name, she said "Michael would you care to join us in the office please". Oh god I thought, how serious is this! I walked in the office and was greeted by Mr Hamed who introduced himself, and asked me to sit. I sat, and he very calmly and gently began to speak. Telling me who he was, what he does, and what his impressions were of mums situation. I have to admit I was expecting REALLY bad news. However he explained the examination, and what he had found. Immediately stating that on examination he had indeed found not one, but two cancers. One on either side. The one mum had noticed and told me about was large and pressing out of the breast, but he had found a smaller lump on the other side. Biopsies were done and sent away.

The discussion then turned to the possible treatments, and the outcomes of the conversations he had already had with mum. Options being surgery, point blank refused... Radiotherapy, again point blank refused, and chemo.. To my surprise mum had actually not completely stonewalled this just yet, but had declined for the time being. At this stage it was impossible to really discuss in full what chemo would do, as it was not yet known what kind of cancer she had. There are positive and negative receptors which affect the way the cancer can be treated. Before leaving the room Mr Hamed reiterated his wishes regarding surgery, and wanting to get it considered and done asap, however mum was very sure that she didn't want this done.

We left the consultation on an ok note, no hard feelings towards the staff which was a good start, but pretty sure that she wanted nothing doing.the next job wad to let my sister know what was happening. I took the chickens way out and sent her a text saying the rough details and that we should talk soon. Main reason being was I needed to drive and get mum home, and was focused already on getting her in a better frame of mind.

From this day onwards a divide began to appear between the way people were treated by mum. My sister remained in her role as daughter. Willing to help but mum preferred not to impose on her. Instead the bulk of the conversations, morbid ones, factual ones, and anything relating to the cancer, were handled by me. I'm not sure if this was me taking control, or mum making her own decision on who would be the shoulders in this journey. Either way I am more than happy to have been there for her through this.

The downside at this stage was, now that she knew 100% that she had cancer, she had still chosen not to tell anyone about it, and was trying her best to swear us to silence about it. But this is me we are talking about, and silence is not one of my strongest points. From this point in, the blog I was already writing took a beating, and the previously mentioned forum thread also went into overdrive. From this day forth,conversation about cancer and treatments would become common place,I would begin to start thinking of ways to make sure mum enjoyed life to the full, and the only thing in my mind was to see how I could suggest treatment to mum and make it her own idea.

Details of where my mind went at this point can be found on my old blog from Feb 2008. Feel free to read through my comments and thoughts at the time on the following link.

Obviously there are many more entries on the matter from that point on, so feel free to browse.

Well once again that just about brings another "early days" entry to an end. I will try and get more added as soon as possible. If my mind can create readable passages, will write them.

Again, please feel free to share this via twitter, facebook, your own blog or any other medium you feel it may reach people who could benefit from reading it.
Comments welcome.

Thank you for reading.

My mum

A picture of mum on the mend during her last stay in hospital.

Sent using BlackBerry®

So it all started one day when...

Ok so this has to start somewhere, so the beginning makes a logical starting place I guess.
I remember kept as if it was yesterday, 13th February 2008, just a little over 3 years ago. Allow me to set the scene..
Earlier in the year I had gone for surgery on my elbow, so was at home recuperating. What seemed like a normal day was about to change almost everything I thought of as 'normal' forever. A knock on the bedroom door and mum asking "can I come in" was how it started.

There was no beating around the bush, and as we started to speak mum said she wanted to tell me something. It is quite uncommon for mum to build up to something like this, and in no time she uttered the words "I have found a lump in my breast". Going on to say she found it a few months ago, but wanted me to know now, especially as m operation was out of the way. Wow! Ok I wasn't quite expecting that one. We talked about it for a while, and during the conversation she tried to make it clear that she just wanted to let it takes it's course and there be no fuss. I however was not so convinced by her decision.

The first thing I did on hearing this was turned to a Internet forum. A little weird I know, but just saying it out loud, to what was then nothing more than a load of usernames was the easiest outlet. Besides, there was always the chance I could even get some good advice on the matter. Aswell as being called an attention seeker, and all sorts of dumb names (as you expect from some of the sad keyboard warrior type recourse to be found on some forums). The original thread is still running here ... . So at this point I feel it important to thank everyone who has contributed towards this now somewhat epic thread. Talk about not feeling alone.

Never have I been involved in such an outpouring of private stories, personal information, and emotions in such a public way. But I am truly thankful to those people who have allowed me and the other users into the depths of their private lives in order to share and explain their journeys. It is fair to say that I have been involved in some quite emotional things in my life, but on reflection this is without a shadow of a doubt THE single most sustained outpour of emotions I have ever experiences. From both sides.

As soon as me and mum had finished our conversation, I was off. Jacket and shoes on, and made haste to the doctors surgery. Getting there I spoke with the receptionist and explained mum had just told me she had found a lump, and within seconds I was told of an appointment in approximately one hours time. I rushed back home..... And so it began.

As I say, this blog/ diary is more about my side of the story, rather than the actual ins and outs of what has happened. There will of course be lots of detail and information none the less. But I use the phrase "and so it began" as this is where my involvement in the situation really starts. Getting back home and telling mum the news that she had a doctors appointment was probably the first time I had taken matters into my own hands, defied her, and gone against her will, in a matter that really didn't concern me. However this was just the beginning of a trend, and a very long one at that.

So an hour later we were back at the doctors, with mum somewhat against her will, but going with the flow. He examined her, and was immediately sure it was cancer, and made an immediate and urgent referral for her to attend the breast clinic at Lewisham Hospital. I will come back to that in time. Home from the doctors now, and the conversations started, what her wishes were, how she saw it all panning out, and who was to know and not to know. This again all becomes a little complex. Not wanting another family to know, or friends, she did admit that she had told my sister before me. I am not sure of the time span of her telling my sister before me, but it doesn't really have much baring on the situation I guess.

So from this point in I guess you can say I was committed. Mentioning to my sister that I now knew about mum, and having some very open and frank conversations about it all, one thing became apparent, I was likely to be primary carer. Not that this is a bad thing, living in the same house and having more interaction with mum, as well as a little more free time (no family commitments). The concept of this however was all rather alien to me to say the least, but you do your best, right?

From the off, it has always been important to me that mum should share her news with her sister Joan. Having lost their sister previously to a 'secret' cancer, to be open and honest about this seemed the only sensible course to take. However mums opinion on this was NO-ONE was to know. At this time she was still working at Sainsburys in Sydenham. A long term job which was also her only social interaction. However due to what lay ahead, her time left working with her friends and customers was to be short lived. Deciding once again that no one should know, she chose not to share the news with anyone there either, and just fell silent as the weeks and months would pass. Again, this is all yet to come.

So what left for Day 1. Well I guess that's a pretty obvious reaction and emotions about it all. To be fair there is not really too much to tell about that side of things. A little shellshocked, somewhat overwhelmed, but all in all I remained pretty normal. I won't say I slept well that night, but having a breakdown or crying my eyes out were really not the route I was going to take. That's not to say there is no emotion attached, of course there is. However my emotions are somewhat complex and sometimes a little numb to say the least, so nothing was about to happen.
I did however reach out to a few chosen people. People I knew would understand, those who I knew could advise, and I guess a couple of neutral people who were distant enough to process what was really happening and feed back t me a purified version of it all. So to all those people, I say thank you. Not too sure if I have ever expressed my gratitude for the time spent listening and advising, but the time has been priceless to me.

So that's about it really, Day One of, mums got cancer, OMG!
I really do hope this makes a structured read, and can all come together to make sense to others as well as me, and can in some way serve as a legacy for mum. So people know what she has really been through. While at the same time I hope others can see a pattern and draw strength from this blog too.

I will leave it there for today, it was just important to start this next part of the journey.... From this point I am committed.

Thank you for reading. Feel free to follow or share.