So Life Goes On

Saturday got off to a good start with all things considering. In the afternoon went shopping in town as I previously thought retail therapy for some practical items for the future might just perk me up. This was a different story however when I was actually there. Just the sight of crispy new pyjmas, slippers and dressing gowns made me feel quite queesy. Took a few deep breaths and trying to think of happier thoughts choose new gear ready for the enivateable hospital stay. I have never left a shopping precinct so fast - I'm sure this made Ian's day!! As the evening had been previously arranged meeting a few friends at a family pub for my birthday celebrations I got ready to go out, but in doing so actually felt nervous and I couldn't fathom out why. It later occured to me these nerves was perhaps due to me facing my diagnosis publically (not that I have kept this a secret, far from it but is different in person with a group of people). Seeing all my friends again put my mind immediately at ease and in good company I was able to laugh, cry, feel angry and fustrated all at the same time! I also caught up with previous work colleagues and with an impromptu dressing change from the wound site saw the wound from the op for the first time. My friend assured me that the wound was clean and dry and looked good but when I looked in the mirror the reflection that I saw made me feel physically sick. Funny how being a nurse and seeing quite literally all bodily sites from surgery can have a such a dramatic effect on how you view your own body from surgery. This is not a nice thought when knowing the type of surgery I need. After catching up with many friends we walked home loaded with flowers, bottles of booze and extremely large boxes of chocolates - wonder how my friends knew what I liked!!

Sunday moring and I was woken with a cup of tea and lots of cards and presents from the family as it was my birthday. Went into London to Camden - weather was cold but the sun was shining. Shopped, had a lovley dinner with meaningful conversation and even more presents that ended with donougts for pudding from a stall outside! The weather changed to heavy rain so running back to the car we drove home. As I had borrowed a music CD I felt in the mood to play this lould and to exercise cautiously thinking this might help with my arm rehabilitation. Thankfully I was right and after an hour of (very carefully) using my exercise routine my arm from the surgery felt considerably less tight and more mobile. A relaxed evening was had by all and I managed to resist opening my large box of chocolates (much to the children's disappointment!) Overall, I have felt in a fairly upbeat mood. How long this will last no-one knows but whilst the mood with all of us has been quite good I have taken advantage of this - mostly by taking the mickey out of myself and joking to hubby that when the op is over I will have to get a bell - so he can be at my beckon call and on demand. I just knew there was some benefits to this situation!

The outcome

The phone rang at 9am - grabbed it in my sleep praying it was the hospital. It was. Given an appointment at 11.45- asked if the results was there and was told hesitantly that indeed the results was in. Put the phone down and just sat on the bed feeling at first numb then sad. Took a hold of myself, phoned hubby at work to let him know as he wanted to come with me and had a bath. Got to the hospital at 11.40am to see a notice saying there was a delay of up to 90 minutes. Great - just what I needed - plenty of time with nothing to do and anxious of getting the results. 90 minutes came and went. At 1.30pm I felt like standing up and shouting as my anxiety was by now getting the better of me. 1.45pm and was eventually called in. Not the best start with the locum doctor as I demanded my results stating I had been waiting for 2 hours. The usual breast cancer specialist nurse was present too and they both delivered the results - out of the 4 lymph nodes that had been removed from the surgery one had been shown to be cancer positive - meaning that the cancer had spread. The next few minutes was a complete mix of sadness, anger and non-belief on my part - felt like someone had used a large hard instrument and hit me clean on the back of the head that left me feeling completely numb. I heard Ian aksking questions and he appeared quite matter-of-fact. The outcome of this result is that radiotherapy and chemotherapy will be a part of the treatment reigeme for at least 6 months and for immediate reconstruction would require my own body tissue being used - something that I have tried to avoid this entire journey. I could opt for a reconstruction in 2 years time but the way I see it is to get all surgery over and done with at the same time for lots of different reasons. So, there we have it. One bloody node - why couldn't it have been all the lymph nodes that has been affected - that way it would at least make all this effort worthwhile?!
 
Got home in a complete state of anger. Ian by this time had absorbed the information and wasn't looking quite as confident - in fact didn't mind admitting to me that he was scared - in particular of this tissue flap for reconstruction. Tried to find a focus by looking at a couple of positives - didn't really last long though. Both our heads was in a state of shock. I think looking back that this news was more shocking to us than me being diagnosed with cancer. Trying to find a bit of normality I suggested we go shopping - via one of our favourite watering houses! So, inbetween getting children ready, shopping lists and phoning my mum to tell her the news I quickly posted a comment on facebook - and got out the house. I was surprised at some of the texts we had from our friends once they read my facebook status and after a couple of lenghty emails knew that it was because in a funny way they was caring - and hurting too from this devastating news.

Don't really know how to get through the next few weeks - which is when I believe I will have the surgery. Know I have lots of support but don't know how I will mentally get through this. I will continue to try the one-day-at-a-time philsophy but sometimes that can be very hard. Still feel utterly numb. Don't know what to think either. My god, at this rate the amount of chocolate I need to take my mind off things I WILL be the size of a mountain!!!

So....

Have continued to feel incredibly low the past couple of days. Got myself out earlier today in an attempt to walk into town as was a  nice day - didnt go far though as every step I took put pressure on the surgical site that lead to pain in my arm, hand and fingers. Went to a local shop instead and took a very slow walk home. Did feel better for being out and about. This wait for results feels like some kind of sentence that needs to be carried out that I am not in control of. Got some good things to look forward to this weekend, including my birthday, but feel this will be completely overshadowed if these results do not come in by Friday. I would like to say though that throughout all of this my 13 year old son has been extremely supportive, including cooking a full meal for the family whilst I was asleep, and happy to cook all the family meals - a massive thankyou to my Charlie! Evening was slightly better - felt I could contribute more towards daily activities that made me feel more human and in the living. Still no news of hospital appointment for results - so here's to hoping. A nice cup of tea with an evening of our favourite TV drama and maybee I might just have to break open the chocolate! Until tomorrow..

Hospital procedure

Well, arrived at the hospital at 8 o'clock, booked in and shown to the waiting area. A few minutes passed with me making jokes as to how many staff I recognised (had previously worked in all areas and got to know quite a few people) when a tall man called my name and approached our direction. This was the anaethetist I had worked with, although he said he didn't recognise me with clothes on (meaning civvy and not uniform!) At this point said goodbyes to the family with hubby saying he would call midday for an update. Was escorted to my bed space and when all paperwork and visits from the healthcare team completed (saw another colleague who was also very surprised to see me) I was given pre-meds to help with relaxation as I was going to have a general anaesthetic. Bloody marvellous - in bed, not really caring and a very mellow mood. Can't really remember the trip into theatres but then remember being in theatre and aware of what room we are in (I had previously watched theatre cases as a student - could even remember what procedure I saw - fortunately not the same procedure as I can also remember observing with my legs crossed and a tear in my eye!) Then my lovley anaethetist told me happy dreams - and I was out like a light.

Someone calling my name - suddenly I was in the recovery room - did I hear someone else saying 'hi honey, sorry to see you in here'. Not surprising as I had also spend time with the recovery staff & nurses and made good friends there too. Can't really remember anything else there.

On the ward - drifting in and out of sleep and feeling very woozy. When I was awake enough it then registered how much pain I had around the armpit to the base of the breast area, obviously the site of the surgery. Had liquid morphine to settle the pain which worked. I was aware of the time now around 3 ish and hubby would want to know when I was ready to go home. But I didn't feel ready - not at all as still felt extremely wobbly on my legs and an uncontrollable desire to sleep. Sister was very good saying I could stay overnight, but ultimately it was my choice when I go home. I decided the sensible option, saw hubby at visiting time explaining would stay overnight and be ready for discharge at 9 the following morning. Had an ok ish night but was disturbed by the pain from the surgery, rang the bell and yet another nurse I knew came over. Had more morphine - and a friendly chat with this nurse who said she couldn't believe it was me on the ward - also shared a few tears and hugs which made me feel human again. Eventually got back to sleep with difficulty and woke up around 6 ish. Felt much better and by 8 had confirmed my discharge with Sister. Noticed by this time the top of my arm, armpit, side and shoulder was completely numb, but felt pain around the breast and armpit area. With my tablets the hospital staff gave me I was ready for home around 9am.

At home I didn't quite know what to do with myself. Eventually tiredness took over and I had a sleep for a couple of hours. Had lunch and felt again wasn't quite sure what to do so decided to curl up on the couch with a pillow and blanket. By 7ish hubby woke me for dinner. Ate, tidied up as best as possible and settled into watching TV with the family. Felt many low periods during the afternoon. Now this procedure is over I need to wait for the results - which I believe the earliest will be on Friday. These results will determine the treatment options/choices from the mastectomy. Feel like I'm in no-mans-land, hurting, low mood and really don't know what to do/think. Once those results are out I can begin to start planning and making the best of the situation. However I feel like I'm in limbo and these next few days will surely drag out.


I have found this posting very difficult to write which is only a reflection of my mood. But in doing so has again strangeley helped me accept and come to terms with matters that is difficult for me. For my friends out there who are sharing the same journey - remember you are not alone. Share your thoughts. Share your emotions. Share anything if you can - even if you think these are not good to share. As I have discovered in this messed-up life to do the things which helps you to come to terms with prevents you from battling against the one person you really do not want to battle against - yourself.

Update

Hi all, Ian here.

Just to let you all know, Sian went in to hospital today for her lymph node check. It was done under general anaesthetic and, although she is fine, she is still a bit groggy so is staying in overnight.

No results as yet, probably will not know for a few days.

She'll be back home in the morning and I'm sure will update the blog later in the day.

Thanks everyone for reading, I know Sian does take a lot of comfort and support from you all.

?????

Today has been quite a difficult day for me (Saturday). Not that I have had bad news, on the contrary with yesterdays appointment but have felt several periods of utter sadness, which has been difficult to control with my children arround but they have been brilliant ('bout only time they are good!) So many highs and lows. Been thinking lots of my friends who has also been affected. Also thinking of the biospy on Monday. Still don't know exactly what treatment/surgery I am having. Another friend previously affected sent me some wise words - until you know what your'e facing your mind will be all over the place. How very true.

This time tomorrow hopefully I would have had the biopsy procedure completed - on the other hand might not as I'm being added as an extra to the list. For some reason I still feel quite low - knowing that things appear favourable is not the same as knowing this to be a fact and is 100 percent true. My mind keeps flicking to tomorrow - looking forward to this long wait for treatment options to be over but feel quite anxious at the same time. Nothing else really to say at this time - other than the next time I blog will be after the biopsy. Please keep any comments comming - as I have previously said to so many of you these comments keeps my mind positive and focused and hopefully others who may be going through this journey (as I am aware too many of us are) can also gain from this support and advice too.

So - of course - will blog again soon!

Appointment

Arrived for my appointment in plenty of time. Was there for only a few minutes when I did a complete double-take - one of my colleagues who I used to work with was checking in at the desk. Surely, no. But sadly, yes,my friend too had also been diagnosed with breast cancer. We sat waiting, chatting about everything and I was eventually called in. The consultant clearly explained about the cancer itself as I requested information regarding implants versus tissue reconstruction. It was at this point we had our first beam of light. As the cancer I have is small, it would be unlikely (in the consultant's opinion) that any radiotherapy or chemotherapy would be required post surgery and that the surgery itself would be enough to prevent the spread (metastasis). I am going in on Monday to have a small op to confirm this - called a sentinal node biopsy in which a few axillary nodes are removed. If the results from this are positive, it shows the cancer has spread, or likley to be spread and this will call for a course of radio or chemotherapy. If the result is negative this shows the cancer is not likley to spread at all, and in this case the implants can be used as radiotherapy is not required. Such relief to be informed that the spread is very unlikley and I may not be looking at any other treatment than the surgery itself. Certainly, my husband was extremely relieved to hear this and it lifted the mood from both of us immediately. However there is one small concern I have - although this consultant has clearly pushed the boundaries to ensure the biopsy occurs as soon as possible, it was himself who at the very beginning prior to diagnosis informed me the small lump in my breast was "strongly suspected as being a cyst". So, I have very good news that is clouded with a few doubts. Will have results from biopsy late next week so will know more then.

Came back from appointment with a message from another one of my friends - who after learning of my diagnosis has shared with me that she too has also been diagnosed with breast cancer. Unbelievable. 

I have a very simple message to spread to my female readers - check, check and check. This is the only way that this horrible disease is discovered unless through a routine mamogram. Looks favourable that I may not have to endure other therapies that have undesirable side effects as I found this lump early. And if you do find a lump, chances are that is may not be cancerous but needs to be checked early - as I have found out. I may have saved myself a lot of worry that includes financial loss due to being checked by health care professionals early.  If readers have more information on getting checked early, please post onto comments as this may be helpful to many others out there.

Until the next time...

Good days

Had a very good day today - woke up in good time for work, had a reasonable shift, home, dinner, kids, relaxation. Funny how having a decent sleep the night before can improve your mind, let alone mood. Feel very positive and on the up. Not sure how long this will last though as have another appointment at the hospital tomorrow and depending on how well this goes will probably alter my mindset again. Thinking of planning another activity packed weekend as my time for taking advantage of this side of life seems to be drawing to a close for a long while.

Whilst I havn't got much to whinge about (at the moment) once again I would like to thank all followers and readers of this blog. As I have had so many comments on facebook it would be really nice for any comments to be posted onto the posts themselves. This can be done anonymously that can be shared by others - in particular any opinions or advice/suggestions that may also benefit others who may be going through the same thing. To post a comment an account will need to be opened with Google first (see Google accounts via the homepage).

So until my rant tomorrow!

Contemplation

Really struggled at work today - not that the shift was particularly challenging but mentally found things very difficult despite being able to have a laugh and a joke with my colleagues. Came home and my mood seemed not to change, having to focus very hard at remaining positive. Chatted lots last night with hubby about the last waste-of-time appointment - feel like in some strange way I have failed. Failed as maybe I can't have the reconstruction done at the same time as the mastectomy due to possible courses of radiotherapy, of which I will have to wait a year before reconstruction can be done. For the week I have known about my breast cancer I thought the reconstruction after mastectomy would not be a problem. I had not thought of all the consequences of using my own tissue for this - of which I am now not in favour, opting for the implant option instead. Was good chatting this out with hubby as he has helped me to understand that I have not failed in anything but simply changed my mind due to informed choices and learned infomation - after all, he says, isn't that what we do as nurses for our patients - giving informed choice? Seems like he has a valid point. Damm - I knew I wouldn't be good as a patient!!
So, (as I said at the beginning to my friends) the exercise in my health plight is to highlight the benefits - Benefits for the day include no more 12-hour shifts, lot of chillin' and a good excuse to eat as much rubbish as I feel!

ARRRRGH!

Had an appointment today with the plastic surgeon to discuss the different possibilities of breast reconstruction. As advised, I had several questions written down in preparation for the appointment. After a brief chat in which I was told any questions I had would be answered by the doctor during his spiel, I was examined to determine what type of reconstruction would be best for my individual needs. Once the curtain was drawn around me, the surgeon and student came in to discuss several options of reconstruction - leaving my husband outside the curtain. I felt quite isolated as up until now my husband had been included and considered in all previous consultations. I also felt bad that he had been mostly ignored and not invited into discussion on any matters. The surgeon informed me of the varying types of surgery, and managed to relieve my worries and anxiety of using my own body tissue for construction by using impants instead. All positives and considerations to this procedure was discussed and I was feeling more and more reassured. Then I was told despite all the positives, I may not be able to have this procedure if radiotherapy was going to be part of my treatment reigeme. I left that appointment in tears with all my hopes crashing down and feeling what was the point of the appointment when it was clear I needed more information from the breast cancer surgeon - in paticular as it hadn't yet been established what treatment reigeme had been prescribed for me (radio/chemotherapy etc), and clearly any reconstruction procedures would need to take this into account first and foremost - ARRRGH!!!  So, on the whole not a good day. Appointment with the breast cancer surgeon in a few days so paper, pencil and lots of questions - here I come!

Information - The future.

As promised in this post I will include some basic information on breast cancer and treatments etc. I have used Breast Cancer Care as the major source of information as I have found this most useful.

There are several types of breast cancer that can be found at different stages of development and can grow at different rates. Its a complex disease and is difficult to predict what course it will take. Doctors/specialists/nurses etc consider several factors when working out the best course of treatment for individuals that includes general health and age and may include surgery, chemotherapy, radiotherapy, hormone therapy or targeted therapy which is either provided alone or in any combination or order.

The type of breast cancer I have is classed as a grade 2 invasive ductal carcinoma. This means the tumor has spread outside the ducts to surrounding breast tissue, and has potential to spread to other body parts (metstasis). Treatment and therapy includes surgery and breast tissue reconstruction, meaning the whole of the breast surgically removed (mastectomy) and replaced with my own body tissue taken from either abdomen, back, buttocks or thigh. This treatment is individualised and prescribed by the health care team taking into account the above. At this stage I am unsure specifically other courses of treatments suggested for me, (of which I will know over the next few days/weeks) but reading most of the leaflefts from Breast Cancer Care is very likley to include radiotherapy, and either chemotherapy, hormone or targeted therapy, each of which has numerous common side-effects (nausea/vomiting/hair loss etc), requiring massive consideration by all involved in making these decisions, including me.

Had a fantastic day yesterday spending the entire day in London, visited The London Dungeons, The London Eye twice and The London Aquarium and came back home absolutely exhaused but having enjoyed every minute of it all. Went to work today, was a fairly good and enjoyable shift. Came home, chilled out, started thinking about cooking dinner. Thats when it felt like something had physically hit me across the back and hard - the future. Won't be able to enjoy days out for a long time after surgery - won't have normality of good/bad shifts at work. My world had suddenly become very dark, bleak and vulnerable. Feel it now. Don't really know whats in store. Even feel guilty for enjoying myself over the past few days. Difficult to have strength when this is running through you - that includes having an awareness of the information above. Deep breath, cup of tea and lots of chocolate in store I think! 

Home truths/Change

Well, I said it was going to be a good time with my family this weekend - maybe not so good with a very stroppy 11 year old for the entire Saturday and sulky 13 year old when asked to do some homework - can't have it all, I guess. It appears my children have got the idea that I am going to be 'ill' for about 3/4 weeks - and that includes surgery and the entire recovery period! Handled this with a few home truths of what is likley to happen over the next few weeks/months and how this will impact on every day family life. Their behaviours have bought me down - quite a lot - but, somehow we managed to get over this. I say we as my husband has been affected by this just as much as I have. In fact, I would like to say a hugh thank you at this early stage to my husband for his support and a shoulder to cry on as I don't think I could have managed this as well if he wasn't there. I am also aware that he is in a very difficult position - to provide adequate support for me without falling apart himself from worry and fear from the procedures/treatment I am facing, particularly in discussing all of these options. I can only say that he has my entire support and understanding on this - and hopefully with friends rallying round will be able to feel slightly more at ease.

Sunday morning - felt different this morning - as if something has changed. Not sure if it is a good or bad change but nethertheless a change that is permanent. Is this an acceptance thing? Has more of the information sunk in? Funny, most of the time I feel as if I am arming myself with knowledge for a patient going through the same journey-seems like I have passed on the patient experience to hubby! Going out to London today - good to take our minds off things.

In my next posting I will include some informative stuff to raise awareness, and to help others in the same position. At this stage I would also like to thank all my followers and others who have logged onto this blog - I have found the response from readers so far really quite amazing and this does help in dire times. Any questions you might have post them onto comments - although I might not know the information, as a very good friend has said I am a walking/talking book and will endeavour to find out!

Hey - normality?

Went to work today - the drive there was amazing - having total control in what you do just because you are sitting behing a steering wheel - is this a little bizzare? Shift went well apart from the beginning where I found myself nearly in tears as I didn't know the whereabouts of my patient's dentures! Otherwise went fairly smoothly with time passing quickly. The only reminder of things not being quite the same is the odd colleague asking of my well-being. So, does this mean things are back to normal - certainly seemed like it. Only I know they are not. Call it having a dark clould over your shoulder at all times you just cannot shake away. Read a bit more on the therapies that I am likley to endure after the surgery - none looks particulary apealing, let alone having to go through this for substatial period of months. So, a dark clould. However, in trying to find as many benefits as possible, it is now the weekend and I fully intend to take every opportunity and advantage this has for myself and my family.

Second Day

Second day since devastation hit. Had that meeting with my employers today - rushed in 5 mins late, threw off my coat and proceeded to say how sorry I am for everything, for being late and this total mess I am now in - not a good start really. But despite any fears I had over any work concerns, both of my managers was extremely understanding and empathatic, saying my job was held open for me no matter how long the recovery was. Questionable to the fiancial side as I have only been there for 4 months - I was assured this would be looked into. However it became clear that I would not be able to return to work for some time - I work as a staff nurse in a critical care environment, and due to the nature of some very complex patients as well as my own lowered immune system post surgery, this would leave me at risk for any infections. I came away from this meeting feeling relieved that I was respected enough for my job to he held open but also deflated as I wouldnt be able to continue as a nurse until complete recovery. Hopefully though I would be able to work doing something - even if its not in the nursing environment itself. Anyone who knows me is aware I like to keep my mind occupied. How is this going to work then - being a patient who hasn't any real patience? Hmm.. Anyway, just spent the last few hours re-reading the leaflets and books of information given - some of this has now sunk in. Questions..questions..'Take a note of any questions you have' is advised in the books - looks like I will have a pretty long list then. So, where's the paper?

Angry, tired, frustrated etc etc.

The first post of this blog i'm afraid does not start at the beginning - which is a very long story (all will be explained later). However this blog is about how i'm feeling now - 10.50pm on a Wednesday evening after being informed yesterday afternoon I have stage 2 of invasive ductal carcinoma (breast cancer). And those feelings are, perhaps as one would expect, mostly negative - in particular anger at having to face yet another very serious battle in my life. From being told yesterday right up to a couple of hours ago I was feeling, well, its not the best news in the world but certainly not the worst and had quite a positive outlook on the issues involved. However this emotional rollercoaster that seems to attached itself to me has changed this view to now being frustrated, cross, even hostile, and very tired.
My aim with these posts is twofold: firstly to share my experiences with others as a way of raising awareness on some subjects and secondly, in the act of thinking/writing these issues I am able to cope with this situation a little better. I therefore fully intend to post regular posts, the next one will be once I have had a meeting with my seniors to discuss the required extensive time off work - of which I only started a few short months ago.
Until the next time..