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

Where do I start?

Don't know where to begin on this entry - to sum up these last seven days won't take many words. Utter sadness, disbelief, frustration, as well as feeling powerless and quite low. I have also been made aware of some important facts about all of this that I find hard to take on-board - 1. to control these emotions (which has been incredibly hard), 2. to build up my support network (which all my friends and family have been extremely supportive) and 3. (which I find the most difficult) to look after me first and foremost.

So, I begin a new mission - before this battle commences (which will start on the day of the op) I am trying my upmost to conquer these 3 points above, as I have realised without this in place there will not be enough 'fight' left in me to win this battle. Maybe I will include these points in future entries so I can also take a reflective stance of this. Therefore, of today -

1. My feelings and emotions - have felt and experienced different feelings, acknowledged this and have been able to let them pass by without dwellingon them.
2. Build up support network - in touch with good friends who are able to offer their support and regularly  communicating/seeing family members.
3. Me - hmm, ooh yes, had a bun from the bakers and made arrangements to see my friend. Unfortunately as I'm not working all housework was completed so perhaps that is something I need to work on to pass onto other members of the family!

To sign off I would like to say a big thanks for my family, in particular to my anut and mum who came to see me today with their many gifts, who made me realise what is really important as well as giving  me the encouragement to continue on this journey. 

Armageddon.

The end of my world - thats how it felt. The result of the appointment I had on Friday left me feeling with words that I cannot even begin to describe.Was ushered in over an hour late, again, with the consultant and cancer nurse talking openly between themselves and us as still no date for the op had been forthcomming. Discussions included trying for Monday or Wednesday this coming week by cancelling clinics and other patient's surgery to accommodate me - at this point I was happy to go along with this as I completely understand the politics and red tape behind planning patient's care. So, as they noted my mobile number I was promised a phone call during the afternoon to inform me of a date as this was still being worked on. I didn't wait too long for this call - the cancer nurse who called left a voicemail informing me that indeed they did now have a date for my op - on the 4th of April. In disbelief I just stared at the phone. Then the landline rung and it was the cancer nurse who rang to ensure I had recieved the voicemail on the mobile. I felt fustrated and cross at this time and spoke to the nurse of how this news had left me feeling - I then spoke to the consultant as I was concerned that leaving an op for this length of time would lead to a higher risk of the cancer metastasing to other organs. I was reassured that this was not the case - but as I think back this was also the consultant who on the initial assessment informed me that the lump I had in my breast, in his opinion, was classed as a "strong suspicion" of being a cyst. So, my apprehension was not, and has not been put at ease.

It was during this appointment I enquired - again - that as I am taking a hormone contraceptive pill do I continue with this as I was aware this could encourage the growth of the tumour depending on whether this was oestrogen positive or negative. I was then informed after the nurse glanced at my clinical notes that indeed the tumour is oestrogen positive - meaning that the pill should have been stopped as soon as this information was available (and this info has been available for at least 2 weeks). As a consequence of this it appears I will have to go through other courses of treatment in addition to everything else - possibly for up to 5 years. Great - just what I need - to have learnt that I have actually been 'feeding' the bloody tumour in the first place is not really the best of news, then to immediately stop and find an alternative long-term contraception, begin menstruation now and then have to enter early menopause due to effects of chemo, as well as being told that my op is now on the 4th April has just been too much. Not coped with this at all very well. Was in a very dark place Friday evening that I never wish to visit again. Weekend was just about bearable - but still feel like I really don't know anymore. Don't really know what to say now - no quirky words, just feel blank. Of course, I will write again once I can gain a sense of anything that has happened since Friday.

The Deed

Woke up fairly early on the morning of The Deed, done the necessary chores, drove kids to school and set to with my nornal exercise routine. Couldn't help noticing however I felt incredibly sick. Trying hard to keep my focus I finished exercising and got ready to go out. Felt very strange at this point, saying aloud goodbye to the cats, bedroom and house as this would be my last goodbye I would say with long hair! It was also incredibly difficult saying goodbye to Ian and the boys before they left too. I met my friend who was coming along for moral support at the pub for lunch and a large glass of dutch courage! 10 mins before the appointment was due my friend quickly suggested buying cakes so we can munch on them during the deed. With this I grabbed my coat and my friend looked surprised on how fast I moved!! We arrived at the hairdressers armed with all sorts of luxury cookies and being escorted into the chair had my hair washed. When in the hairdressing seat my friend offered me a cookie. At this point I was extremely grateful for this as the shear enjoyment and delight of eating my favourite food forced me to take my mind on what was happening - large chunks of my long hair being cut extremely short. I couldn't even look - I just kept eating. The longer pieces of hair was being collected by the assistant as I am going to send this off to a charity where hair donations are made into wigs for children who are also undergoing treatments for cancer. Eventually I looked into the mirror. I wasn't too shocked, in fact felt quite surprised on how calm I felt - must have been the chemicals from the chocolate cookie! Whilst the hairdresser kept cutting and snipping my friend was taking photos and asked if I wanted to see the back. Despite feeling calm I felt I couldn't look until the deed was complete. So, approx one hour and 20 mins later I left the hairdressers with an Emma Watson hair style. The first 1-2 hours I felt like I had a wig placed on my forehead as I wasn't used to the shorter layers and kept trying to flatten this down. Did some shopping that included buying new hair products and went for a quick coffee. I have to say at this point my friend had made me feel very special throughout the entire process and had made the deed much easier to cope with - teamed with the kind words from the hairdresser I felt like royalty. My friend and I said our goodbyes and wandering through town I bumped into 2 other friends - who was also extremely supportive - especially as I hadn't seen one particular friend for years despite the warm thoughts and encouragement messages I had recieved from this blog being followed. When I got home I then felt very nervous of showing off the new hair to the family - Ian in particular who had expressed concern over my feelings on this. However, I need not have worried as all showed genuine delight of my new hair style - even Ian saying he felt relief that I was happy and he was pleased with the results. We then settled into celebrating my new achievement throughout the evening with good food, wine and a bowl of popcorn with a drama on TV.

Thursday was at a much slower pace - had appointment at the hospital for pre-admin checks. Still no date for the surgery though and this is now making me feel very unsettled. I have another appointment to see the consultant tomorrow and should be given a date then. Washed my hair this evening and I have the first pangs of ooh no - what have I done. But I know even my new hair is only temporary, in particular when chemo kicks in. So, gearing up for tomorrows appointment I give in gracefully to my bed calling and resist the urge to whack a ton of gel on top of my head to stop this wig feeling again! So, until tomorrow. 

   

Mentally preparing...

Well, Monday went off to a cracking start with cleaning the entire house top to bottom (as best as I could). Hey - I remember this feeling of nesting - but this time it is for completely different circumstances, as I know this type of activity will not be on the cards for months to come. When my 13 year old son came home from school asking to cut the grass (for a couple of pounds!) I surprised myself with this nesting instinct that continued by tidying around the garden too! Didn't sleep too well that night as for some reason short hair-do's was running through my mind ten to the dozen. Tuesday was at a slower pace mainly as I was completely exhaused from previous day's activities as well as tired from lack of sleep. Saw the plastic surgeon - believe it or not on time - and confirmed the surgery procedure I am having. Dates for the op are looking more like Monday next week but may be put back to the following week if necessary. I feel totally fed-up now with the wait and just want to get on with it all. However, on the other hand I am also aware from the date of the op starts a whole new everything including permanent change - and this feels like doomsday until complete recovery. Booked an appointment for the hairdressers for tomorrow and now feel quite nervous about this too although as a trusty friend advised me this was my part in taking control of the situation.

By the way - how's this for coincidence - Monday morning after washing my hair I went through the usual procedure of strightening it for what would be the very last time before getting my hair cut. This included the usual dropping of my strighteners as they often slip out of my hands. I have had these strighteners for the best part of 8 years without any fault or broken parts. However, that morning when I retrieved the strighteners from the floor after nearly finishing my hair I noticed that I had actually broken them!! The second very spooky coincidence occurred this morning (Tuesday) on my way to the hospital - after reading up on the side effects of chemo with gum disease I took the general advice of seeing a dentist prior to treatments and I booked a dentist appointment at lunchtime today. As we walked towards the clinic in the morning I felt crumbling from the tooth of concern to find the filling from that tooth had actually come away.  Is fate telling me something? They say these type of things occur in three's - not sure I want to know what is in store for me now - unless, of course it involves extra helpings of that georgous Thornton's ice-cream as the last lot for some reason has been eaten!!!

Weekend

The last few days seemed to have passed by unsignificantally. I have also felt quite low. I have tried to keep myself busy and my mind off things by getting the house in order as I am aware this will become less important after the op. Went to the hairdressers today (Saturday) to see what appointments was available to get my hair cut - the hairdresser who I regularly see seemed to understand my plight without many words spoken - and offered a few wise words of advice. Sunday seemed to be a little brighter with lighter spirtis and only the odd moment feeling sad. Bought more practical items for night and day wear after the op - even this felt more comfortable than the other days shopping. As work has now finished have tried to think of what I can do to fill the time between now and the op itself - having lots of spare time really does not suit me very well as my hubby only knows too well! Have more appointments at the hospital this coming week and teamed with the hairdressers appointment seems to be the weeks highlights! Ian has informed me of a website that gives advice to all the effects from chemotherapy treatments so I will also look into this. I must admit, from what Ian has told me about some of the effects I'm not looking forward to this at all, as it appears that chemo will have some very nasty side effects indeed. So, with trying to lead as normal life as possible as well as preventing all of this from becoming a waiting game until the op I will endeavour to keep myself as active and busy as I can.
Which can only leave one thought - anyone tried the Thornton's chocolate luxury ice-cream? Delicious is not the word!!!

Challenging times

Went to work yesterday - the first shift back since having the op for the removal of my lymph nodes. The first hour was bad enough but the second hour almost became unbearable. Don't get me wrong - nothing negative about the shift but was only down to how I have been feeling. On my break I spoke to a member of training staff who was extremely supportive. I spoke of me fearing losing newly gained nursing skills and becoming bored during the months of chemo. My colleague suggested that I attend future training sessions and gave over 2 more rather large workbooks for me to complete when I was fit and ready to do so. This really helped - even though I have just nearly completed 3 other workbooks this will give me a focus in the months to come. The rest of the shift became slightly easier but I was mentally struggling. It then dawned on me that I was struggling with being a patient as well as being a nurse - and this thought echoed throught the entire shift. After work I met a friend and together we went to the breast cancer support club that was suggested by the specialist nurse so I can chat to other women who has gone through was I am considering. I found this extremely helpful with these ladies providing insight information on surgery, tissue flap, chemo etc. After I got home I  realised that these women with or without hats to obvious hair loss from chemo is how I will be. This was quite sobering but is not my greatest concern from chemo. Chatted with Ian about this - hair loss maybe a superficial part of anyone but as Ian feels this will affect me on a deeper level has consequently felt quite distraught at this. After a few tears we shared a common joke of both of us being baldies in the house!!

Thursday morning - got in work early and chatted to the matron of the unit. I explained my feelings of not being able to be a nurse as well as a patient and I felt that this was to be my last shift. This was agreed, accepted and I was offered to go home if I wanted. I expressed I wanted to work this last shift and in my own way I also wanted to say good-bye to a few people before leaving. Talking throughout the shift to other nurses, doctors, previous students and senior collegues I had an overwhelming feeling of being incredibly supported and with genuine concern. I knew however I had made the right decision to leave. So making the most of the shift I completed one of my workbooks, laughed, cried, and said my goodbyes. Got home and I knew Ian had been struggling throughout the day with how he was feeling towards this situation and so did my best to support him. Ian informed me that he had read another person's blog that was more reality focused. Having this sort of information is good if you can take this on-board and not let this become your only focus (which I realise this is easier said than done) so we laughed it off as best as we could. I also chatted about thoughts of getting my hair cut short (I like the Emma Watson's new look) in the next week. Having thought about it carefully as my current hair is bra-length, this will only get in the way after the op so will have to keep it tied up. As for washing/drying/strightening - forget it, in particular the trouble I had doing this after the last op. So, getting my hair cut now will be much easier to manage as well as minimum to deal with when my hair does start falling out. Sobering thoughts - but in the fight to beat this illness called cancer this is do-able. As for my decision from my last blog - latissiums dorsi flap reconstruction. Whatever I decide will most definately require more future surgery so might as well have an immediate as opposed to delayed reconstruction.

Just realised what a lengthy and wordy entry this is - oh well, won't be like that next time as won't have much to write about now work has finished (yeah, right!)  So to prevent any further boredom from setting in I will sigm off now!

Eh - Still feeling good?/Decisions

So far its been 4 days inclusive that I am feel in good spirits - whats this all about? When looking back I believe this is more to do with the fact of since finding out the results on Friday, despite this not being the best news I am now able to make decisions of future surgery based upon this information. As I have found out today from another appointment with the plastic surgeon and breast nurse I feel I am now in a position to take on board information that will enable me to make these decisions instead of dealing with the numbness that comes from shock after shock. Friday last week still feels like a complete bombshell and by far this was the most shocking news we had to take on-board. Decision-time soon then. This is when I have to inform the nurse/consultant as soon as possible my decision of the surgery - mastectomy with delayed reconstruction (breast reconstructed at least 18 months post op) or mastectomy with immediate latissimus dorsi reconstruction (tissue used from my back to reconstruct) Been through both options in-depth with hubby this evening but I can't help feeling I have missed some information so will leave this to the sub-conscious and mull over the next day or so - although I do currently have a strong notion on what my choice will be. The appointment we had today has left both myself and Ian feeling very enlightened. This has resulted in Ian feeling better at discussing/thinking over options so on this account it has been a very good day indeed.  Lets hope all this effort results in the right decision made - after all this will affect the rest of my life. I feel confident in making the right decision - just got to make this 100 percent sure. Off to the land of nod now where I can literally sleep on it. Until the next time..