Through My Eyes

Some people say I talk too much, that I always have a story to tell. I don't know what's round the corner so my blog is about life through my eyes and making every day count.

Archive for the month “November, 2013”

Life isn’t getting back to normal as quick as I’d like!!

So it’s been a week or so since my last appointment at hospital, this was the appointment where I was pretty much told the worst is over and just to get better now, I was also prescribed the drug tamoxifen for 10 years which I have since started taking. So to me things were looking up, no chemo needed, no radiotherapy, just a tablet a day along with my painkillers and I will soon Be better!
They say you shouldn’t wish your life away but I really want to get back to normal and put this whole cancer thing behind me. That’s the attitude I have had throughout. Rather than feel upset or devastated I have remained positive throughout, in fact I have not shed 1 single tear over it. Everyone says it’s life changing having cancer but I didn’t see it as a life changing thing, to me it was a complete inconvenience that was interrupting my life and the sooner it was sorted the sooner I could carry on as normal!
My life was so great before this happened, we were away racing motorbikes or cars every weekend, I have a job I loved and had just been offered a promotion and we were starting to decorate our little house to get a bigger house next year and then after that maybe look at having more children!

The funny thing is that I have done everything in my power to not let cancer drag me down, even when i
felt so rubbish after the operation I still managed a smile, yet now after all that I am on the road to recovery and feeling lower than I have throughout the whole thing! Really I should be happy now!

I think reality is setting in that recovery is not an overnight process and my life isn’t going to be back to normal as soon as I would like. I have developed a thing called a Seroma where I have fluid on my back under the skin am sloshing around like a hot water bottle! I was hoping this would go over time but it seems to have got worse so I am going to have to go to the hospital and get it drained!
The Tamoxifen has started to have side effects now, I feel quite moody (more than normal) and get these awful hot flushes that are horrible! I get so bloated as well oh and I’m quite tired yet can’t sleep and feel a bit sick on them.
I tried a trip out to the metro centre yesterday for a bit of Christmas shopping and after half an hour was so hot that I felt sick then my back started throbbing and I had to sit down then go home!
It’s been 4 weeks since the operation and I hear about so many women who are getting back to normal and I feel I should be doing more now but instead I just can’t get out of bed on a morning and have no motivation to do anything! I feel I should be looking to go back to work soon or doing something productive every day but I just feel stuck in a rut!

I am such an active positive happy person so for me to feel like this and want to stay in bed a day in unusual and I hope I snap out of it soon! Maybe once I have my back drained that will help the pain and then I hope my body gets used to the tamoxifen so the side effects ease and then maybe I will start feeling more positive!

Treatment…..And moving on!

So the all anticipated appointment has been and gone. The good news is I don’t have to have chemotherapy or radiotherapy. Reason being is that the cancer they found was only small and whilst it still was invasive breast cancer it isn’t enough to warrant any aggressive treatment. The other thing is that it is highly hormone receptive meaning it reacts to hormones and hormones make it grow so to control that I have been given the drug Tamoxifen for 10 years!
I couldn’t Believe it when he said 1″ years, it seems like forever! He says it is because I am young and something to do with hormones so I need to be taking it for 10 years. It’s a hormone blocker so quite a big deal but still the best possible outcome for me.
The downside is that if I decide I want any more children I can’t take the drug while trying to get pregnant or being pregnant. It’s not the end of the world but does mean coming off it for that period of time therefore increasing the risk of the cancer returning. Luckily it isn’t a huge risk but still a decision to be made nearer the time!!
I also had my dressings checked while at the clinic and the consultant noticed I have developed fluid on my back. I hadn’t noticed this at first and it wasn’t really bothering me but since he mentioned it I am really aware of it! I feel like I am a walking hot water bottle sloshing away when I walk which I know is a bit gross! I can go back to clinic and get it drained if I have to but I don’t like the thought of that either so will try bad out up with it for now!
So I am 2 days into my tamoxifen which is nothing when I am on it for ten years!!
So far no side effects but common side effects are hot flushes, weight gain, moodiness! I have all this to look forward to.
So as far as I am concerned now the future is all about healing and getting my life back to normal! Of course this isn’t totally over, I have the tablets for ten years along with side effects, I may need further surgery on my boobs but mainly for cosmetic reasons, then I have the yearly mammograms and worry of the cancer coming back in the future!
So really life is never going to be normal as I know it and suddenly I have gone from reading about cancer in magazines or on tv to experiencing it first hand and all the hassle that comes along with it!!
The other thing this means now is I am going to have to find other things to blog about!
To be honest this won’t be hard as I have so much going on in my life besides cancer but whether it will be of interest to anyone I don’t know!!
I am looking forward to what the future holds and am proud to say I am not a cancer sufferer but a cancer survivor!

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It’s slowly starting to sink in!

So I am lay here in bed unable to sleep so
Thought it would be a good time to
Blog!
So I saw my dad and his partner at the weekend, the first time since my operation and since the news Its now grade 1. His partner asked me if I was gutted and how I felt, I said I am fine and coping fine, she then replied it must be hard to be told you have breast cancer….
It was that exact moment I felt like I had been punched in the stomach, I felt sick, it was strange because she wasn’t telling me anything new!
When I think about this whole process I realise that nobody has ever sat down with me and said those words – you have cancer. I read lots of stories from women who have been told the diagnosis and felt devastated but I have never had that feeling.
Going back to the beginning I got told I had DCIS which was then described as cancerous cells. Even after all the tests, scans, meetings etc nobody actually used the word cancer, even when telling me I needed a mastectomy. It was all medical terms I didn’t understand and cancer wasn’t mentioned! Even when I got told the results the other day they used every other term other than cancer!
Despite being a bit anxious over the mastectomy I still felt ok about things and in my mind was just thinking when I could return to work and get back to normal. Everyone kept saying its a life changing operation but to me there was nothing life changing about it, as far as I was concerned it was a small inconvenience in my life and the sooner I got better the sooner I got back to
Normal!
I remember the consultant saying to me it’s not a short process I need to stop expecting its going to be sorted in a month!
As I lie here now thinking about it all, I am starting to realise this problem won’t go away over night. It’s not going to be a case of a bit of surgery then life goes on as normal! I think that’s the worse bit for me, not the fact that I have cancer (I can’t say that out loud yet!) but more that it’s a long journey that isn’t going to be over as quick as I would like.
I find out tomorrow what treatment I am having. I am not 100 percent sure but am pretty certain it won’t he chemo thank god as the cancer is very small and low grade. From information I have read i think it will be Tamoxifen drug and maybe radiotherapy. Tamoxifen is a hormone blocker so still comes with side effects! Even if I get just the tamoxifen it’s a drug ladies take for years, not just a months prescription!
I think it’s starting to sink in what’s actually happening which is probably about time seeming as it has been going on a year!
Anyway will see what they say tomorrow and try not to worry too much about it, I just tell myself to man up and stop stressing as there’s a lot of ladies worse off than me and going through a lot worse so rather than get down about it all I am trying to focus on the positives!

More results and news!

So I got a letter through the post with an appointment for the 3rd Dec. I didn’t understand this at all, surely I couldn’t be expected to wait till the 3rd Dec for results?!
I rang my point of contact (the breast care nurse) straight away and just got voicemail. I then spent the rest of the day ringing her, the ward, the clinic and every number I had but nobody picked up. It was 6.30 pm when I finally got hold of her. She didn’t know anything about the appointment but said she could look on the computer for my results.
So here we are, the results!
She started reading them out and it was all medical terms I had never heard of, I was trying to write them down to google when I got off the phone! The main part of the results is that they have found a small area where the cancer cells are not in the ducts anymore so now classed as invasive. The good news is that the areas were very small and only grade 1.

It was quite difficult being told this over the phone because as much as I wanted to know, it was the nurse telling me so not the consultants so she couldn’t answer a lot of my questions. I will have an appointment next week to find out what treatment I have to have following this new discovery.

Whenever I tell anyone the new results they are all so positive which is good to be but sometimes I don’t think they actually understand or have a clue what a big deal this is!

The funny this is though that I am actually struggling to say the C word out loud! Is that normal?! I mean before these results I was telling everyone I had DCIS, so when people asked me I explained I had DCIS and did not even mention the word cancer! Now it’s invasive I need to face the fact that it is breast cancer and try telling people this. Someone asked the other day and I started talking about DCIS and invasive and Allsorts and they looked so confused! I am sure if I just said Breast Cancer then I would have made more sense but couldn’t say it!

One way I have found some support is in the way of a Facebook group aimed at younger women with breast cancer. I joined this group but didn’t expect much as I have joined forums before and not has many answers to my questions and posts. The first thing I liked was everyone saying welcome to me, I thought this was so nice. I then started looking at the people in the group and the people replying to me, as strange as it sounds the people were like me, they were young and pretty (not saying I’m pretty) and spoke like me like on the same wavelength!
When I was in hospital everyone on the ward was at least 50 years old, now I’m saying it is any easier getting the diagnosis as am older woman as it isn’t but I felt like I was the odd one out and on the wrong ward!
So I start posting in the group and I got so many replies. I have only been in the group 2 days and feel like I’m part of something, like I’m not alone and; these women are so easy to speak to and so nice. I am really glad I found this group.
So the wait goes on, only till next week though to find out what treatment I am having.
Despite this bad news I still feel ok, I don’t feel like crying or being negative, yes it’s worse than the DCIS but it’s only grade 1 cancer so perfectly treatable. Yes it’s not great but there’s a lot of people that I have met throughout this journey that are a lot worse and so I’m not going to get down about this and make a big deal out of it!

Swelling, Bruising & Scars!

So it has been 2 weeks since my operation. I have read on some forums that some ladies are ready to go back to work after a few weeks and things are back to normal but for me I am nowhere near that point!
From a pain point of view I am much improved and I feel more discomfort now than pain. Trying to get cosy in a chair or bed is not easy! From a Breast point if view the new boob seems fine, it’s a little on the large side but I have been told the swelling will go down a lot. It is also covered in bruising so not very attractive at the moment so it’s best to just not look in the mirror at the moment!
I have pain in my left arm and very little movement in it, I have been told I need physio for this at a later date but not something I need to worry about now!!
I still feel completely unattached to the new boob, I don’t feel like it is mine or a part of me, I feel like it’s just this big thing that’s stuck on the front of my chest but not like a part of me if that makes any sense! I am hoping over time this will change!
As far as my back goes it is quite a scar but will fade over time and is very neat. Some people don’t like scars, they try to get rid of them and hide them, I do understand that but for me I will be wearing my scar with pride. It’s right across my back so not like I can hide it in a bikini but even so I see this as something to be proud of. To me a scar is a sign of bravery and being strong not a sign of weakness and something to be hidden. This whole experience is a big deal and a big part of my life and the scar represents that.
I have attached a picture to this post and I am sorry if this offends anyone as it’s not the nicest of pictures. I thought I would post it though as It is significant to this post but I am sorry for anyone that does not like seeing wounds and scars and things!!

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A Nightmare day!

12th November 2013, my appointment date for the clinic, the first appointment since the operation and first time out the house.
Since the operation I have been at home, hair scraped back and Pyjamas on, not to mention the drain iv been carrying around that is attached to my back so not very attractive!
I thought I would take the opportunity to make an effort, put a bit of make up on as besides the fact my consultant is a bit of a dish I wanted to start looking and feeling better about myself! As we left the house I grabbed my appointment letter and off we went.
As we got to the hospital I had a quick look at the appointment letter and it said Tuesday the 22nd…. What?! It’s the 12th and here we are at the appointment! I felt like such an idiot and couldn’t say sorry enough to my mum who had driven me. As we were in Leeds we decided to make the most of my mistake and go shopping! Not something I would recommend anyone does a week after a large operation while still having a drain attached! I tried to keep the drain in my handbag but still got some strange looks!
After about half an hour and a few new outfits later the phone rang… The hospital asking where I was?? Now I was really confused, we had got to the hospital thinking there was an appointment today only to check the letter and it say the 22nd?! I got the letter out my bag again to see it said Tuesday 22nd October, not November! I had only brought the wrong letter, an old appointment card! I felt like such an idiot, luckily the hospital agreed to fit me in and see me but by then the dishy consultant had gone home so it was left for the nurse to take my drain out, check my dressings and give me some results!
Now I would love to be able to explain the results I really would but if I’m honest they didn’t make much sense and were pretty much inconclusive and awaiting further test results! So really there were no new developments and I have to wait until next week for any certain results! I would have rathered they just didn’t tell me anything rather than say the results are inconclusive as that only puts more worry in my mind for a week till I know for sure!
What a carry on I had but the good thing is that I got all my dressings off and got the drain out which makes life at home a whole lot easier and more comfortable!
I just need to wait for the results now, more waiting!

Reflecting on the new me… And what i have lost

So now the operation has been done… I am at home recovering.
The past few weeks have been a nightmare that I spent most of the time sleeping through where I could dream about nicer things and pretend it was not happening. Then I would wake up and feel the pain and realise that the nightmare is real life and I am living it.
There were 2 things that got me through the last few weeks, the first one being my amazing family and the second being the fact I kept telling myself that there are people in the world going through worse times than me, suffering more pain, and in actual fact I am lucky that a few months of pain should hopefully get rid of the cancer for good and that’s got to be a good thing! Always trying to find the positive!

So now I am home, the pain is much better, its manageable with pain killers and I am up and about a lot more. I had my first hospital appointment yesterday since the operation, I had all the drains removed and the dressings taken off. Up until this point I had not looked at my appearance and tried to forget the fact I have a new boob, bruises scars and swelling! So when all the dressings came off at the hospital and I got asked if I would like to look in the mirror I didn’t know what to say. It is almost like by looking in the mirror I had to accept the fact my body is no longer what it used to be, my appearance has dramatically changed and I need to realise that!
So I looked in the mirror…. the first thing I looked at was my back first, not sure why, I just turned and looked at the scars first before looking at the results! The Scar was pretty big, bruised and unattractive but despite that scars have never really bothered me so the look of that wasn’t an issue! Then I turned to the front and slowly removed my hands from my chest to see the work.
I wasn’t as shocked as I expected to be but it was a shock all the same, In replace of my previous boob was a large football like object that was bruised, swollen and not very attractive! The nurse insisted that it is still very swollen and the bruises and swelling will reduce so not to worry too much! All the same I couldn’t see it as part of me, I just felt like it was something stuck on the front of my body that didn’t belong to me! It didn’t feel part of my body at all and was quite scary to look at! I know this is something I am going to have to get used to and hopefully as time goes by I will start to feel like a part of my body.

Before all this happened and I had this operation I was quite a confident person, I mean you have to be quite confident to be able to be a brolly girl put a lycra outfit on and walk around a motorcycle paddock smiling for strangers to take pictures! That aside though as that was years ago I have always had self confidence. Don’t get me wrong I know I have major floors, I would like to lose a bit of weight, don’t like my teeth, hate my nose, and could do with toning up but overall I manage to put my make up on, get dressed up and feel confident about myself!
As this process has unravelled my confidence has slowly gone down hill, Despite wanting to lose a few pounds and not being amazingly stunning I have always had my boobs going for me and so without them my confidence has plummeted a bit. not only that but when your in hospital a lot then at home all day you stop wearing the nice outfits and end up slobbing in Pyjamas without any makeup so its not exactly like you feel great about yourself!
I have attached a few pictures to this blog to remind myself what I used to look like and I hope to get that confidence back in time. Every girl no matter what they look like should be confident in their body and feel happy but at the moment it’s not happening! if anyone came near me with a camera at the moment I would run a mile so fast so I am hoping that as I start to recover I will get my confidence back.

Being confident does not mean that I love myself or have a big ego, To me being confident is accepting what I look like, accepting who and what I am and being happy with that, Being able to walk in a room and silently thinking look this is me, rather than shying away hoping nobody notices me and notices all my floors and what I hate about myself! Hopefully soon I will come to terms with by new shape and wear my scars proudly. I may have lost a Part of my body and a lot of confidence but it’s a small price to pay to get rid of the nasty disease that is cancer. There’s no point being devastated about this when it’s potentially saved my life and that’s not a bad thing!

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The NHS… Our wonderful health system

Warning…. This is a long post, i have a lot to say!!!
So, it’s been a while before I have posted anything, I have been in hospital having a mastectomy with immediate reconstruction.
I will talk about this in more detail later I think but for know I want to mention yet again the NHS.
The reason I talk so much about the NHS is because this is the first big operation i have had, the first time in my life iv had a health problem and after paying my taxes all my life I expected a little more from them!
So I go into the operation, 6 hours later wake up in immense pain which the morphine soon sorted out!
So 2 days in I haven’t left my bed, am still in immense pain but controlling it with morphine which although makes me feel drunk helps a lot.
2 nurses come into my room and tell me I need to be up and walking now. I explain that not only is the pain awful but the morphine makes me feel very sick and dizzy. They told me that they have to have patients up and about by now and sat me up in bed telling me to sit up!
I asked what the rush is and they said its routine! Well I didn’t want to be part of this just because it’s policy and routine when my body was telling me I wasn’t ready.
At this point I felt like a number not a person. I stood up in awful pain and was so dizzy I asked to sit down but they wouldn’t let me, they got that cross at me I ended up in tears so they let me lie down again. As a patient having just had an awful operation this is not what I expected at all.
The next day the surgeon visited me to check everything and I asked him if I need to be walking around, he said no, only when I feel I can as i have had a big operation so no need to rush anything! So why did the nurses feel the need to push this? Is it to tick a box saying they have had me out of bed walking!
3 days in I felt I could get out of bed into a chair which I did to enable the nurses to help me have a wash, I can’t say how good it felt to be clean again! Unless I pressed the buzzer I was just left on my own for hours do just slept.
Another 2 days went by and I asked for a wash again, the nurses said ok and then never came back, I fell asleep and didn’t get woken for a wash and before I knew it was the next day. I asked again that afternoon and the nurse said no problem and we would have a wash before bed time as such. It got to about 9.pm and I called the nurse for my wash who said she couldn’t do it but she could get me a bowl of water! Given I had 4 drains attached and wires and my movement was limited I really needed help!
I said I would wait until the next day and suprise suprise nobody came to help me wash!
I was due to be discharged the day after so when that day arrived if given up asking for a wash so just waited till I got home, I’d gone 4 days without a wash so was pretty annoyed!
On my day of discharge it got to dinner time, I was sleeping when they came in and said that someone needed my bed so could I pack my stuff and go wait in the waiting room! I wasn’t due to leave the hospital till tea time so I had to clarify, did they actually expect me to sit in the waiting room for hours after major surgery and yes they did!
Yes I had a mastectomy but I also had a reconstruction which involved taking muscle from my back so as you can imagine not only my front but my back was very painful, not only that but having not washed me they expected me to go sit in a tiny room with random people/visitors/outpatients when I was in my pyjamas not smelling so fresh!
I was so upset that eventually they found me a bed in the corner of a ward but I still got chucked out my room!
While sat on the ward a little old lady realised she had cut her finger and asked for a plaster, 20 min later she still hadn’t got a plaster! The nurses were running about like there was a crisis but in actual fact that was just normal and they were really understaffed!
I heard an alarm going off indicating someone needed something, it may have just been a drink and not urgent but then may have been that someone was stuck in the bathroom or had fallen for example. Either way it went on for 15 min before it was responded to!
Anyway I think my whole experience sums up the state of our health service. Understaffed wards,overworked nurses, patients not getting what they need. I’m not sure what the answer is really other than someone else in charge of the government!!
All in all I was glad to be home!

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