Life so far...

I havn't blogged for some time now - that I am very aware. But after bumping into a friend today who gave me a bit of a telling off saying she had been waiting for some time for the latest installment as the blog is better than Eastenders I thought I'd better get into action!

Life has been extremely up and down. I have chemo once every 3 weeks - and for the first 5-7 days after chemo I experience bouts of nausea, agitation, extreme tiredness, very dry mouth, headaches, and feeling not being able to function well at all. So far I have had 2 sessions of chemo (called cycles) with my third cycle due this coming Friday. During the rest of the time I slowly return to normality, and generally the third week prior to the next cycle I feel completely ok. It is during this time I feel at my best, able to cope with most things so have taken to studying extensively and completing my nursing workbooks, housework, cooking and gardening - and as I feel ok seem to completely overdo things! As I feel good and well the last weekend prior to the next cycle, the family plan fun days out - we went to Alton Towers Friday last week and although it was a very long day we all had a superb time - (had to tie my head scarf on very tightly when we went on Rita - those who have experienced the ride will know what I mean!)

Whilst out and about today I came across a very old friend - after one look confirmed that she also was going through the same journey, albeit a different diagnosis that still encompassed chemo. After talking with my friend for a few minutes I found myself in uncontrollable floods of tears - how many more of us are out there having no choice but to go through invasive and quite frankly wouldn't-normally-touch-it-with-a-bargepole treatments that results in very nasty and lasting side-effects?  I feel angry that this is effecting too many good people. My friend did make me laugh though when others had told her to 'enjoy and be positive with your journey' - to which she retorted thanks, but you can leave your journey, I'd rather not go anywhere!

After going for that wig fitting a few weeks ago I now own my own wig - to the cost of £61.50 plus £14.00 for excessories. Have worn it a few times around town but after no-one recognises me (short stylish 2-tone bob style - completely different to my old hair style) so have taken to wearing my headscarf. So, if anyone spots a woman in a complete daze being not quite one hundred percent with a short-bob hair around town - please stop me and say hello!!

In There Somewhere

Well, thats how I feel - in there somewhere. After the second round of chemotherapy I feel as I am just existing - not really living. Think thats more to do with the anti-sickness drugs I have been given as they are making me feel extremely drowsy and out-of-sorts. Just feel nothing really. No 'what shall I do today', no real conversation, just time to get up, time for lunch/dinner etc. I am not going to take my evening anti-sickness drug which really does knock me out (which I can take as and when required) to see if I can buck myself up a little tomorrow - so we'll wait and see. Also have a cracking headache - perhaps tension from kids being off from half term?

Going for a wig fitting tomorrow - after saying 'no' initially. Changed my mind however when I saw ladies undergoing chemo with what I thought was a full head of hair! Don't know what to expect so I'll take things as they come. Will be quite welcome as my hair was falling out fast - thought I could cope with this gradual hair loss until complete baldness but after seeing patches of baldness knew I couldn't continue with this so got the other half to shave off the remaining hair. Was a decision not taken lightly. But I feel immensly better for it - stopped my scalp feeling extremely sore as well as the loose hair continually itching and falling around my shoulders.  Feeling quite low at the moment so hopefully tomorrow will be a better day - and being able to obtain a full head of hair!

Hair

From my last blog entry things pretty much seem to have been quite positive. I have seen friends, studied, pottered around the house and even attended a zumba exercise class with my friend, which I was only able to do half the exercises due to my limbs feeling quite tired but I thoroughly enjoyed the music - I could even shut my eyes and pretend I was abroad! I met with my friend in the afternoon of that day and felt so good when I got home I threw myself into gardening - BIG mistake. That evening I knew I had overdone things and very rapidly developed a sore throat and a heavy cold. Seems I havn't yet learnt to relax and take things easy - but I certainly will now - I didn't sleep well from feeling so bunged up that breathing was difficult and made my 'good' days not-so-good. Rested and relaxed as much as I possibly could as a trip to Thorpe Park had been planned if I was ok and the weather good. This did indeed go-ahead and being very cautions and practible in what I wore as well as using sun-cream on exposed skin, the family and I had a thoroughly enjoyable day - all of us was tucked up in bed by 9.30pm as we was all completely wiped out by the days activities!

It was around late last week I had noticed a few loose hairs from either combing or washing my hair - as I had read from other websites hair loss from chemo started around 2 weeks, I became observant of my own hair from this point. Sunday had a few more loose hairs from styling. But nothing really prepared me for what I saw on my pillow Monday morning - lots of hairs all over the sheets and pillows. I stared at these hairs in the dark at first - and knew there was lots of hair there, then pulled the curtains down and just cried. I knew hair loss was inevitable - I even got my hair cut short in preparation for this - but even so I am still finding this incredibly hard to deal with and very distressing. Each day there is more and more hair loss - and I am now using chemo caps/hats at night and during the day to prevent these loose hairs just falling out as I cannot cope with this - at the slightest touch the hair just falls out. The loss so far has been quite even and not in patches and I am aware that perhaps this is a good sign as it means the chemo is actually working in my body. But it doesn't feel good when I see and feel the loose hair wherever I go. My scalp is also quite sore all over - don't know why but will raise this if this continues with the chemo nurses when I have my next chemo session - this Friday.

Therefore, having experienced one round of chemo, I really hope that the next round will be a lot smoother - after all the side-effects have subsided and by then complete hair loss, I would like to be able to have good days without having to deal with any other issues other than relaxing/resting (which I am not the best at.) Maybee then I will be able to find this journey a little easier to deal with.

Progress

It has to be said that I think that progress is being made. Since writing the last entry there has been good days - and bad days. Days where it felt like time was just stretching before me, not doing anything nor going anywhere. Feelings of what do I do with myself today or mostly,  I'm feeling very odd and really unsure about how I feel - is this normal? has been quite common teamed with some very low points. I think this was most of my Friday and Saturday - which got better with seeing my work colleagues, family and spending quality time with a very good friend Saturday evening. Sunday was very odd indeed, with both and Ian not feeling ourselves at all - despite me not experiencing any side-effects from the chemo.

However - Monday was a complete turn-around with me seeing my friend for coffee, chatting to mum on the phone and for the first time in a long time carefully attempted exercise - which I normally thrive on for as this is a good mental uplift as well as having physical benefits. This left me completely exhausted but I felt
exhilarated and pleased with myself. These positive feeling continued today (Tuesday) - and grew as I had arranged to spend 3 hours at my work attending a training session. I don't think I have been so pleased to set foot into a hospital environment - shame I don't have the same feelings when attending my treatment sessions! I sat through this session taking on-board information that hopefully I will be able to retain and use in the future - and at the same time amazed myself with my previous knowledge that I was able to recall and put this together with the new info and actually made sense of it all - especially as this training session was aimed at experienced nurses who have been in the environment for 2-3 years. Came home and having the fire re-started of nursing set to my workbooks with much enthusiasm. I have started to plan the rest of this week as I feel that certainly most of the side-effects from chemo has now left - all apart from this continuing thirst every night. For any of you who might be experiencing the same journey I have tried drinking isotonic drinks during the night - which does seem to reduce the need of fluid - an indication of the body needing the additional electrolyes this drink offers that water does not.  

I can now recognise a pattern developing for the on-coming months of chemo of the side-effects, good days and bad days and I feel better equipped at dealing with this for when the next round of chemo is due. I think this round of chemo hit me hard as this was something I did not plan for but had mentally prepared myself for the surgery. However, now I know what to expect I also know how to deal with it. When the good days are good - as it has been for me today - it is very good. As expected when the bad days are bad - it seems as this never ends.  I am extremely grateful for all my friends and family who have come up trumps with the never-ending support. It is also during these times the bad days are kept to a minimum. Again, for those experiencing this journey - having a support network really is extremely important as this helps not just you but each member of the family who is directly affected by what you are going through giving then the strength and courage to keep going.  I know that my current positive and upbeat feeling will not last as the next round of chemo is always looming around the corner but just knowing how to get through these dark days should keep the not-so-nice parts at bay and in perspective.

So - until I need another rant - sorry blog entry - will write again soon!

Proud of Myself?

Well, this is day 6 of the first round of chemotherapy. Stright after writing the last blog entry and commenting on how good I was feeling 4 hours post chemo, I started to feel immensly nauseas. This continued into the afternoon and evening with the nausea getting worse. Typical - as I had previously reported on how well I was doing. Can't really remember much more of that Friday other than taking my anti-sickness drugs as instructed. Saturday went shopping late morning as was feeling slightly easier but spent minimal time out as didn't want to push things, especially as the nausea feeling was off and on. I spent the afternoon indoors feeling very nauseas and irritable - as if I couldn't settle into anything, even just sitting was an effort. Didn't have much to eat that day as the foods I did want to eat just couldn't seem to eat when it came to it. Also didn't sleep at all - just at the point of sleep I would wake up with an extremely dry mouth, drink an unsurmountable amount of water, got up to refill my cup and went to the loo, sleep was simply not achieveable. In the morning I got up with a banging headache, so aware of the infection risk to my system took my temperature and had 2 paracetemol as temp was ok. Sunday was worse, in particular as having no sleep, headache and very nauseas. I also felt that the anti-sickness drugs I was given by the hospital was actually bringing on the nausea so omitted these drugs from the evening dose. It was on this day that I felt as I wasn't coping with anything at all, so called my mum as she had previously offered to come over and help out if needed. I realised by this stage that perhaps ommitting anti-emetics wasn't the wisest of decisions and made allowances within eating foods to make up for this. So, Sunday evening mum was there, and as I was feeling pretty rough I was grateful for this. I now think that day 2 post chemo will be my worst day.

Monday was slightly better - achieved better sleep but still had an unbearably dry mouth overnight. Woke up twice during the night with another banging headache that was controlled by paracetemol. I called the hospital to ensure the anti-sickness drugs I was given was the most effective - I was assured this was and so accepted this more graciously. Had a sleep in the afternoon and went to bed early - too early as during this night I didn't have much sleep at all - perhaps as I previously had too much sleep? Nausea continued but at a markedly less degree and tried to build a routine in the taking of my anti-emetic drugs. Tuesday continued to feel better in myself and felt less agitated - I even got out my nursing workbooks that had been passed onto me from work in order to continue with my skills and I was surprised on how elated I felt that I was able to successfully complete a section of this! That evening felt the best I have felt since chemo started - laughing, joking, even muching on favourite foods - hey - this is normality - but for how long??

Wedensday continued with feeling on the up with less nausea - and an established drug routine. Had a bag of chips from the fish and chip shop which I have not done for years. Wednesday evening mum went home as I was feeling considerably better but I was also aware mum would be over again if I felt bad or - which is more likely - during the first few days on the next round of chemo. Felt tearful at this point - mum had got me over my worst point but was also good company too, but knew that I would see her again. Had another restless night - waking up every 15-20 mins with a completely dry mouth but prevented another headache by taking paracetemol on the onset of this headache early morning. I have started taking a bottle of giger ale up to bed with me as this helps ease any sickenss as well as providing something different to drink from water.

So, Thursday now - got up mid-morning, breakfasted ok, pottered around the house, spoke to hubby on the phone, even hoovered around the house (carefully and slowly!), chatted to friends who are coming over to see me (with cake! - very welcome!!!) hung the washing out, spoke to mum on the phone and even blogged - I think so far a very good day indeed.

Proud of Myself? - I think that with what I have had to encounter so far the answer is yes. However, as I am most aware of my current feelings is always set to change.

Treatment Starts!!

Well, D-day has arrived! After a disturbed nights sleep (didn't expect much sleep) went into hospital for the first of my chemo treatments. My children had a fund-raising day at school dressing in 60's costumes - so my boys dressed as a hippy and the momma from Hairspray - complete with my girly glitzy top, balloons for boobs, make-up and jewellery!! Laughed all the way to and during the treatment session at the hospital, in fact this did a great deal of keeping my mind positive and focused during what could have otherwise been a very difficult time. Was escorted to a room and the nurses filled in the relevant paperwork. I was given a bowl of warm water to put my hands in to encourage the veins to dilate for easier cannulation. When the nurse came in with a tray of needles and drugs I glanced at Ian asking whether it was time he got some breakfast - as I was aware he was none too keen of any procedures involving needles he took this quick exit quite literally - wusse! After the first cannulae was unsuccessful I then too began to fee like a complete wusse as I needed to lie semi-reclined in the chair and be distracted to site the cannulae - which was successful almost immediately!!

I was given a steriod infusion to prevent any nausea, inflammation or other unwanted side-effects. Then whilst the chemo drugs were being delivered other paperwork and information was completed by the nurse and student. It was at this point a different oncologist came into the room whom I had not previously met. To say he was completely on my side as to how badly I had been treated was an understatement - in particular as he thought that a situation was "bollocks" and he had highlighted my case to the Chief Executive of the hospital. I think I might just like this new professional who had been bought on-board!! After all the chemo drugs had been given (took in total around 2 hours) I was free to go home. Have only had a few slight readctions to these drugs - pink wee (which was immediate!), slight drawing sensation around the cheekbones, metallic taste and now a bearable headache. Apart from that I feel completely fine - would love to enjoy the sunshine of the day but the drugs can make the skin photosensitive so no direct sunlight. I have to say that Ian and myself have felt this experience has been extremely positive for both of us - and we feel this was mainly due to the staff who are experts at making you feel at ease, comfortable, involving Ian in any procedures he wanted to be involved in (not including the needles bit, of course!) and had us rolling up in laughter to the point where I had a tear from laughing so much.

So, 4 hours after the drugs have been given I don't feel so bad at all. I still thank my lovley husband for being so very caring and attentive - I've still yet to get that bell I've threatened him with for my every beckon call!!! I am also aware these side effects will slowly but surely take on more effect and by day 5-7 things won't be as great but I have a whole host of medicines the nurses gave me to combat this. Unfortunately nothing will be able to combat the very low immune system and hair loss/fatigue but I have accepted this to be an overall part of the treatment. So, hoping things don't go downhill too rapidly, here's to a unexpected and great start to this chemo.

Does anyone listen to me??

Lots to write on this entry with little time left (will become clear why later). Let me briefly reflect back on the last few days.

Had a very good weekend including a day out with the family to Warwick Castle. Monday pottered around the house trying hard to keep my feelings positive as per my new mission - had a great girly evening with my good friend chatting putting the world to rights. Got home and thought more about our previous conversation - lump in breast felt slightly bigger and noticed the skin around the lump was pink and slightly hot to the touch. I had also experienced pain in the breast over the weekend. I was previously told by the consultant there was no risk of further growth or spread but my nursing knowledge told me a different story. Had a very difficult night sleep that Monday night. 8.30am Tuesday morning called the breast cancer nurse. After a couple of calls it had been decided that I was to go into hospital to have an ultracound scan - not that the healthcare team was concerned (I was told) - more for my piece of mind. So midday I was promptly called in for my scan. The results blew me away - not only had the tumor grown 5 mm in width and somewhat in depth, but the tumor had also grown upwards towards the healthy part of my breast (hence the pink colour and change in the skin.) The radiographer immediately called the breast care nurse whilst I was escorted to the visitors room and offered a cup of tea. I called Ian as he was at work to inform him of this latest in the long line of disasters. By now my mind had lost all form of positivity - surely if this surgery hadn't been left for so long - or at least had the op on the original dates - this would not have occurred. The nurse entered the room and I stared at her in utter disbelief telling her how I was thinking and feeling. She did not disagree with these points and informed me of their complaints procedure. I was then escorted to the lounge area where I was told I would see a different oncologist at 2.30pm where decisions would have to be made as it was clear this could not now be left any longer. I felt very fustrated, extremely angry, lonley and isolated at this stage. I simply couldn't take in the fact that the delay of the op had allowed the tumor to grow as well as being told by the consultant I was not at risk from tumor growth or spread - despite me raising this concern directly with the consultant over the phone I was given reasurrance this would not be the case. These thoughts just kept going round and round. The nurse gave me information of their complaints procedure encouraging me to take this up. I called Ian again to update him - whilst I was speaking on the phone he said he was literally on his way to the hospital. We have a shared family car which I taken to get me to the hospital leaving Ian unable to leave work - until upon hearing of what was going on Ian's boss very kindly and quickly offered Ian a lift up to the hospital - felt relief and gratitude for this generous action which enabled Ian to be with me in half an hour. Seeing the oncolgist together it had been decided that the best plan of action was to start chemo now in order to shrink the growth of the tumor with surgery 6 weeks after the last chemo session. More disaster hit me when I was informed that due to the damage caused by the tumor to the healthy tissue I was unable to have immediate reconstruction. Why? Why? Why? - I wanted to scream. Why didn't they allocate the op earlier? Why did they leave this for so long? ARRRRGGGHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! So, after taking bloods and having undergone a CT Scan, I left the hospital with my family again in absolute disbelief. Suffice to say I spent the rest of the evening not really caring from a meal and a large bottle of wine!



Had a phone call from the nurse the following morning to inform me that chemo was to start Friday at 9am, and the results from the CT Scan (which all the bad news we have had by now thought was negative and the cancer had spread) was actually negative - no spread. Bloody hell - what's this, positive news, someone punch me as I'm not sure what positive means anymore. My friend came over to see me and with the lovley sunshine was able to enjoy that day. Thursday now - mum and aunt came over again, had another lovley day in the sun, coffee and buns and lots of support. So, now at approx 23.24 on Thursday evening chemo starts tomorrow. Glanced earlier at the paperwork informing me of what drugs I am having in these sessions - not very appealing in the least, and to expect the normal side-effects of nausea and vomiting, hair loss and extreme tiredness, not to mention the many other side-effects. Now, trying hard to look forward, being positive I intend to enjoy the little time I have this evening before commencing on the not-so-nice stuff for a few months.

I will update as and when I can. Many thanks to all of you who follow this blog. Your supportive messages have been an immense strength to me, sometimes in my darkest hour.
 xx