Today is day 5 after my first dose of Docetaxel. (Cycle 4).

Why are steroids given to cancer patients – Steroids can be used as part of your treatment to help destroy cancer cells and make chemotherapy more effective. They can help reduce an allergic reaction to certain drugs and in low doses as anti-sickness drugs and help alleviate inflammation in your joints. However – while taking steroids they have their own set of side effects –  they’re a major cause of inflammation in your intestines, and they can make you bloated as a result of damage to your intestinal lining. They also cause fluid retention, so in addition to feeling bloated, they can make you look puffy all over. This particularly affects your hands, face, feet and abdomen. Puffiness to the face has been referred to as “moon face” – so that gives you an idea.

My steroids are called dexamethasone and their main use is as above but they are also to help counteract the fluid retention that Docetaxel can cause. So basically it is a double edged sword. I am taking large doses of my steroids to counteract fluid retention but one of their main side effects is bloating!!

As with all drugs not everyone suffers side effects. Since having my 4th cycle of chemo it would appear that Ali is not completely invincible!

How am I feeling on day 5? – This is quite difficult to explain. I know that something is different but can’t quite put my finger on it. I don’t feel really poorly but I don’t feel like me. I am incredibly tired – but that is nothing new. My emotions are very close to the surface and sometimes I just want to cry for no apparent reason – but again that is nothing new!!

So – what is different?

My hair was trying to grow back bless it but now it has started to come out again due to the Docetaxel. I am not worried about this anymore but I may lose my eyebrows and they have started to thin so this would be something new. What will I look like if I have no eyebrows? My girls need to start practicing doing them on me!!

I have joint pain in my back, knees and neck and I have a headache pretty much all of the time – but these are manageable. The most noticeable thing (to me) is the bloating. My tummy is swollen and I look about 9 months pregnant. It is not particularly comfortable and I do have stomach pains. Today I woke with a temperature – but not a worrying one so I didn’t need to go to the hospital and after an hour it had come back down. I can’t put my finger on what was wrong – I have had a sore throat since Monday, I had a headache and again just didn’t feel 100% but I didn’t really feel that ill. I’m just out of sorts which is sometimes worse because you can’t identify what the problem is so you can’t do anything about it. So I will see how things go over the next couple of days and hopefully things won’t get too much worse.

Despite this, I am still fighting all the way and remain totally positive, even though I have had a little wobble, and although this journey has seemed so long, I can’t believe that the end is finally in sight.

 

Yesterday was my 4th cycle of chemo. It was my new regime called Docetaxel and it has a whole set of new side effects as well as the usual ones. (I will go in to more detail shortly). To help counteract some of them I am taking 24 steroids in 3 days – 8 the day before my treatment, 8 the day of my treatment and 8 the following day. I still have to do my daily injections for a week as well.

The lead up to this cycle of chemo has been a very emotional one and I have had to dig deep to find my inner strength to keep myself going.

I am the matriarch of my family – and it is my job to keep us strong and together. My close friends have been amazing and it is with your support that I have been able to carry on.

So – on to the treatment – side effects – and what next? –

Hot flushes! – Oh yes! One of the side effects of chemo in general is that it can bring on an early menopause which can either continue once chemo finishes or your body can return to your post menopausal state. A few weeks ago I thought I was just getting hot wearing my wig all the time so I started to wear my turbans to work – which helped for a little while! But I am definitely of the opinion that I am having hot flushes!! For those who have not yet had the pleasure! –  for me the heat starts at the back of my neck, moves up and over my head and finishes on my chest. It is that uncomfortable heat – not like you feel when you are on holiday – but the type of heat that completely overcomes you and you really don’t know what to do with yourself!! It really isn’t a pleasurable experience!

So yesterday morning I was wide awake from 5am but had been awake on and off all night. I was very anxious and apprehensive of what was to come as I didn’t and still don’t know how I will react to this new drug. My feelings were very close to the surface and my work colleagues were fab. So thank you girls.

I went to oncology with my hubby who drove so I wouldn’t get so anxious and stressed trying to find a parking space! We found a space but it was a tight one! Did the experience make me any less anxious or stressed? – eh – what do you think?! – bloody hell  No! – I think I was even more stressed!! So next time I will be let off at the door and Neil will join me once he has parked!!

The nurses as always were fab. One of the main issues with Docetaxel is that during administration it can cause an allergic reaction and this is what the first lot of steroids try to counteract. These symptoms can range from shortness of breath, tight chest, hot flushes, face going red, feelings of anxiousness and sometimes abdominal cramps. I had an emergency button should I need it. (Neil said I experienced all of the above at one point or another!) I did get a hot flush – but I just put that down to me and so carried on and I was fine!! So no problems with an allergic reaction and the rest of the treatment went well.

I have a new dressing on my PICC and it is much better than the other one and much less irritating so hopefully those little blisters etc. will now heal and it will be less uncomfortable.

I came home with the usual drugs – including anti-sick (which I have had to use today), tablets to stop diarrhoea (one of the common side effects),  and of course my injections. The list of side effects are pretty vast and some of them can be pretty nasty. One more common side effect is numbness in your fingers and toes. I was chatting to my supervisor in work and asked (a stupid question I am sure!) can you type with numb fingers? She replied never mind typing, how are you going to drive to work if you cant feel your toes?!!!! I haven’t thought about that one!! Another main one is that your body and joints ache and can be pretty painful. So if you were walking up stairs your legs would feel very heavy and painful to lift. (So I’ll just have to use the lift in work and bum shuffle up the stairs!!) My oncologist said that the side effects usually start after finishing the steroids so perhaps I may feel differently tomorrow or Monday. I will keep you posted as to how I am doing – but thankfully – so far so good.

As I have said in previous blogs everyone reacts differently to chemo and it also depends on what cancer it is treating as all cancers affects the body differently – e.g. bowel cancer, bone cancer, throat cancer, cancers of the face, mouth or tongue to name but a few. I am not making light of chemotherapy by any means and I am one of the really lucky ones who have managed well and hopefully this will continue. However – I am still going through cancer and a dreadful treatment to make sure that I continue to survive and live on. The problem is that with being able to carry on as ‘normal’ and not to be really poorly, people can forget what I am going through – what effect this is having on me emotionally, mentally and the fact that I have cancer. I don’t want to be ill and I certainly don’t want pity. I am so glad I remain well and I am able to carry on but this has been a hard one for me. But –

So far so good. Only 2 more to go. I am not sure what happens next and this is something I will discuss at my next oncology appointment in 2 weeks time. I will keep you all posted.

This week marks 20 weeks since I found my lump, 18 weeks since my diagnosis and 13 weeks since my op.

When I got home yesterday my girls had bought me some beautiful flowers and these incredible words which I share with you all:

Check in soon.

Sorry I havent posted for a while but it has been one hell of a week!

It was my third chemo last Friday the 16th March which marked the half way point through my treatment.

It is now 18 weeks since I found my lump, 16 weeks since my diagnosis and 11 weeks since my op.

My friend came with me instead of Neil and it was nice for a catch up and a girly chat. We were going out for lunch afterwards and meeting a couple of other friends and I was looking forward to some ‘normal’ time. So did my chemo go smoothly? – did it heck!! No surprise there then – this is me we’re talking about!

So to start with, my chemo was unfortunately delayed by an hour due to one lady having a reaction to her chemo so she took priority. These things happen and she was really quite poorly but she was well looked after and thankfully was ok.

There were problems with my PICC  line dressing so they tried one for sensitive skin. They don’t stick as well but it was pink and I quite liked it!! My nurse administered my drugs which were fine although I had a bit of a reaction to one of them – which hasn’t really happened before. My infusion is a combination of 3 drugs. One of them whilst being administered can make you feel woozy or give you a head rush like you have just jumped into a swimming pool and as it happened i felt really woozy and lightheaded, but thankfully it soon passed once the drug was finished. At the end of my treatment I noticed I had blisters around the edge of the dressing. My nurse wasn’t sure if was my line rubbing against my skin or whether it was the new dressing – as it definitely wasn’t there at the start! I  started out with 1 blister but I ended up with a little cluster of about 6! So we decided to go back to the original dressing. After two further attempts of applying the dressing, trying to dodge the blisters, I was sorted and ready to go!  So instead of being finished by 12.15pm it was 1.30pm.

These things happen and none of it bothered me and if I’d been with Neil or one of the girls it would have been fine but I was aware that I was with a friend and I felt a bit stressed and the need to keep apologising. I know she will be cross with me for feeling like this but she was absolutely fine and it wasn’t a problem however it made me feel a little uneasy!

Anyway – 3 treatments down and 3 to go.

Since Friday I  have felt well and thankfully no sickness and injecting myself is now a doddle!! I am however quite anxious about the next new drug. It is given by an infusion over a few hours – this does not worry me but the side effects can be more nasty, and I guess it’s the fear of the unknown. I will see my oncologist on Thursday and we will go into the new treatment in more detail, so I suppose I will just have to wait and see! I’m sure I’ll be fine and will continue to fight and carry on as normal. Even if I do feel rough I’ll keep going! You know me!!

So – I am pleased to be half way through my treatment. I am so glad to be on the other side of the hill, and on the homeward stretch. Some people have said it is going so fast and to be honest I can’t believe we are half way through March already. (What was that snow about!!) It has gone quickly I suppose, and although it’s only been 18 weeks since this all began I find it difficult to remember what I  was like before the end of November. It is all encompassing and it doesn’t get any easier.

Approoximately 10 more weeks – 3 more cycles – and hopefully this will all be over.

 But what then? Who am I then? What do I do? When you are going through treatment you have so many people involved in your life, appointments and people caring for you, but when it finishes and they no longer need to be a part of your life what do you do? Can I just be Ali again and carry on as if nothing happened? This is quite a scary time and yes I have been there once before – but you are now on your own. After months of treatment – and now there is nothing. You are back to ‘normal’. Am I?

And on that note I will leave this thought with you!!!

 

 

 

 

There is a survivor’s guilt. Why do some people survive and live another day and some people are not so lucky? It’s very hard to deal with – I am still here. I am thankful that I am still here, but feel so sad for those who aren’t – why them and not me?

I have had a few comments this evening of my post  and whilst these post are hugely supportive and lovely it made me think. I think about this a lot but don’t often share it but it needs to be shared and  I think you will understand why.

When I had cancer the first time round I was diagnosed in the January. A close friend’s sister was diagnosed in the February. We both had treatment and unfortunately she passed away in the December of the same year. I didn’t know how to react. I saw my friend regularly. What could I say? I was still here, still fighting, but feeling so guilty, why  her and not me? It was difficult. That might sound weird – I wanted to be here and I am glad I am here – but when you know someone who have lost the battle its a hard thing to deal with.

I have lost friends. I won’t name them but those who read this blog will know who they are. There is one that I always think about – she was an amazing woman, loving human being and I think if you were her friend she would do anything for you. She was funny and so loving and nothing was ever an problem. Her daughter was one my daughter’s best friends through school. She was an amazing lady and although we weren’t mega close friends she was a friend. Her 2 girls are a huge credit to her and I am so pleased that our paths still cross. She was an inspiration and I am so blessed that I knew her.

When you experience this there are no words as to how you feel. Why? Why am I alive and they are not? (Sorry this is deep!! Maybe a bit too deep!!) – so I don’t really know how to end this post except I am thankful for being here and fighting another day but I am always mindful of others – those going through the same thing – and ALWAYS those who have not been be so fortunate.

xxxxx

This week is 9 weeks since my op and 14 weeks since my diagnosis.

As I’ve said before sometimes not a lot happens. Thankfully I am still feeling physically well.

I am still surprised by the response to my blog and that it has even reached people I don’t know. If you know anyone that this could help that may not be able to access it then please feel free to share my website address with them.  memyselfandbreastcancer.com

I came home from coaching gymnastics on Tuesday to the most beautiful, thoughtful and kindest gift I could have been given. My Harry Potter inspirational quote in a picture frame. I was so overcome by this kindness that I cried as it was so not expected; and again on Thursday one of my parents brought me in a ‘goody’ basket with lots of lovely, thoughful things that I can use everyday which was so kind. Thank you both so much. xx

I am always surprised by messages and acts of kindness – I am obviously liked by a few! Something that I sometimes find hard to believe!!

All my friends, work colleagues, aquaintances  etc. tell me how amazing I am, that I am such an inspiration and a lot of them cant believe I’m back to work. I am strong and I am a fighter and I will fight until I have no fight left. I will beat this again.

I am so pleased that my blog and my demeanour promotes me as an inspirational person – but – I don’t always feel like it – in fact I don’t really feel it at all. I’m just Ali.

BUT –

It is hard. Bloody hard. Everyday getting up seeing myself as the ‘real’ me and then I put on my prostheses and wig and become the ‘normal’ me. It is almost like there are 3 Ali’s. The one for work and everyday people, one for my family and friends, and the one when I am on my own. They all overlap of course and what you see is me, it is not a façade but I sometimes have to work at it. There is never a minute of the day that I don’t think about my Cancer. It is the last thing I think about at night and the first thing I think about in the morning.

I don’t want sympathy or ‘oh poor Ali’ but because I am currently so well and look so well (so I am told!) that it is easy to forget what I am going through and battling on a daily basis. But this is the case with many ‘unseen’ diseases such as MS, fibromyalgia, mental health issues, depression, chronic fatigue syndrome to name but a few. Because you look well you must be well.

These last couple of weeks I have found difficult and have struggled to be ‘me’. (Bet you couldn’t tell that from this post!!) I don’t really know why. Sometimes the feeling takes over and it is like you are in a bubble and all you can think of is the Cancer, what effect it is having on you and on your close family and friends, and even the question of will I beat it again. I want to be well and I want to survive and see my girls grown up and married and me grow old playing with my grandchildren. There should be no reason why I won’t, but there is always that ‘what if’ in my head. It is a scary thought and it doesn’t happen that often but it always close by.

I have one more cycle of the current chemo drugs that I am on and then I start the new drug. I will be honest and say that I am worried about this new drug as some of the side effects can be nasty. I don’t know how I will react, as I have said before everyone reacts differently so it is a wait and see scenario.

I wasn’t going to post this as it is more negative and shows me from a different side but I think it is important to let you know that I am not being blasé and saying that chemo is a breeze – it is not – I am not always strong – but I am well and that is good. I am thankful.

 

So it was all good news about my heart scan. I wore my wig to work for the first time and had so many lovely compliments and comments that some had no idea it was a wig. Even my colleagues who I work with said it looked really good and you couldn’t tell. I’m still not sure about it as it is longer than I am used to but I think it is growing on me! (no pun intended!!) I decided on Wednesday night to get my husband to shave the rest off. My head was so sore and uncomfortable. It is difficult to describe but if you could think that every time you touch your head it feels like hundreds of red hot needles. It really isn’t very nice. My eldest daughter says that I’m rocking my egg head!! (please excuse my Rudolph nose though!!)

 

Although things are good and back on track, this has been a difficult week. I have been very tired and my mood has been a bit low. I started the mental preparation for my 2nd lot of chemo so this could be an unconscious effect of that. I had my blood test on Thursday which was fine and on Friday I went for my chemo. I had to wait an hour once I got there because I hadn’t taken my anti-sick tablet – even though I didn’t know I had to and I didn’t have the tablet! Good news though my iron level has increased from 83 to 92 in two weeks, so that was good that I didn’t have to have a blood transfusion – this time. So full steam ahead. So I sat there for an hour and then I was hooked up!! I have said in a previous post that this part of it makes it real. You can carry on the rest of your ‘normal’ life – go to work, see friends, go shopping, do the housework etc. but when you are sitting in that chair watching the drugs go in, it brings it home and reminds me that I have Cancer.

So day 1 after chemo – How do I feel? – Again up until now I feel OK. No sickness or nausea although I am on a concoction of drugs to help! Day 1 after chemo means day 1 of injection!! And guess what?!!

Yes – I did it!! I managed it fairly well and it wasn’t sore just a bit stingy afterwards. I did need a “just get on with it Ali” from my husband though! For those who know me well will know how much of a needle phobic I am, so for me to be able to do this was a real achievement and I am feeling quite proud of myself!!

I picked up my prostheses on Friday and I just love the boxes they came in! They are so cute!

Lots of people ask me what they are like, what do they look like so I thought I would share ‘Fillis 2’ with you.

So they sit in specially designed pockets in a special bra and no one would know!!

I hope you don’t mind me sharing but the more we are open about these things the less taboo the subject is and it makes it more ‘normal’. The more open we are the more we understand. Too many people think that when Cancer is mentioned they think the worst, because that is what we have come to expect, but it doesn’t always have to be that way.

Today is just over 7 weeks since my op and 12 weeks since my diagnosis.

Everyone who knows me knows I am probably one of the most craziest Harry Potter fans (apart from a couple of others I know!) and this quote has meant a lot to me since my diagnosis. I couldn’t believe it was happening to me again – I went through all the questions – why me, what have I done, and why me a second time. This quote just reminds me that even in my darkest moments – you can find happiness. And you can.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Today is just over six weeks since my operation and 11 weeks since I was diagnosed.

I had my heart scan on Friday and my heart is working and functioning very well and at about 63%. Apparently your heart doesn’t work to 100%. Don’t really understand that. An athletes heart works at 65% and above – so get me!! I nearly have the heart of an athlete!!

So thankfully all is ok and we are back on track. Blood tests on Thursday so hopefully my iron levels wont have dropped any more and I wont need a transfusion and further delays. Chemo No 2 scheduled on Friday morning so at the moment only 1 week delayed. These things happen and have to be expected.

And now I start the mental preparation for cycle no 2. Knowing what is to come and having all that toxic liquid roaming around my body again and the following injections for a week. This makes it real. This reminds you that you have Cancer. This reminds you what a bastard of a disease this is and what you have to go through to make you ‘better’.  Will I be well this time like I was after my first session or will I have more of a reaction? I don’t know but I hope I am OK. I will deal with whatever happens as it happens.

On a slightly lighter note one of my chemo drugs is bright pink. I mean fluorescent!! This is called Epirubicin and it is the drug that makes my hair fall out.  It makes your wee bright pink as well!! It was quite a shock!! Just wanted to put that out there!! (Sorry – was that oversharing? – probably!!)

Update on the hair front! – it’s definitely on its way out!! I dread looking in the mirror each morning to see how much more has gone. You can see my head now and my hair is very thin. My head is sore and when I touch it, it feels like someone is sticking a hundred needles into my head! (needless to say I don’t touch it very often!) I have cried but there is nothing I can do to stop it, I’ve accepted it now and it’s time to move on! These pictures don’t quite show it in reality – it is much thinner but it gives you an idea.

 

 

 

I wore my turban this weekend when I was out and about and my eldest said I looked cute!! I will wear my wig for the first time to work tomorrow. I just hope I can put it on properly!! I haven’t tried to do it yet so could be interesting first thing tomorrow morning!! Wig pictures will follow (hopefully!!)

 

 

 

 

 

 

 

This week is pretty quiet with nothing much happening until Thursday, so I will post again on Friday and let you know how my 2nd lot of chemo goes. Thanks for reading and your comments of support and love. It really does mean a lot. xxx

 

I saw my oncologist this week to make sure I was fit and well for my second lot of chemo. He said that one of my chemo drugs can cause heart damage so I need a heart scan to make sure it is working correctly, particularly as it is the same drug as I had first time round. Oh joy!! I can’t get an ‘urgent’ heart scan until this coming Friday and as they need to do the scan before my next lot of chemo they have had to delay it! Fantastic!! I know that it’s for my benefit and they are only looking after me, but what they don’t realise, is that when you are going through cancer and treatment your life becomes revolved around them and all the subsequent appointments so you plan the rest of your life around them. I bought a really nice diary for 2018 and have all my appointments written in it neatly up until June (I can be very organised!!) and now I am going to have to put a line through them! That means that it’s going to look all untidy now!! And now I have no idea when my next treatment is etc. so I’m all out of sync! So I need to phone the hospital tomorrow to find out the plan. Perhaps I will write my diary entries in pencil from now on!!

I am also quite anaemic and my doctor said that if it drops any lower then I am going to have to have a blood transfusion. Your normal ranges for women is between 120 and 150 g/l (grams per litre) (a bit higher for men 130 to 170) and mine is 83. If it drops to 80 then I have to have one. I have been anaemic on and of for a few years and I cannot take iron tablets as they make me very sick so I am taking liquid iron – but I have only been taking them consistently since January! So to help raise my levels I have increased the liquid iron, but I eat quite an iron rich diet anyway – lots of greens, fish, meat, veg etc. So I thought I would give liver a try. (I don’t like liver!!) I bought a liver and bacon ready meal to give it a try (I couldn’t cook it myself!) and OMG!!! I thought I was going to be ill!! The smell, the taste, the texture – absolutely gross!! (Sorry to all those who like liver – but I really really don’t!!!) Maybe I should start drinking Guinness!! (I quite like Guinness and black!!)

A further update on the old hair loss situation – it is definitely coming out and rather quickly now! Yes I am upset but I know it’s happening so I’m going to stop feeling sorry for myself and moping about and accept it for what it is and carry on. I think I will start wearing my wig at some point this week and my funky turbans!  Watch this space for pictures.

Yesterday was 5 weeks since my operation and 13 days since my first chemo.

How do I feel? – Surprising OK!  I haven’t felt sick nor have I been sick. Injections weren’t too bad thanks to my daughter and now I start the mental preparation for chemo session 2 next week.

So far my hair hasn’t started coming out – but in preparation for that I decided to get my hairdresser/friend to cut me quite short. She has done a fabulous job and I am really pleased with it. The compliments I have had and how much it suits me is a real boost but I know that it wont be for long. Another few days and I will start to see a change. So here are the pics. No1- New Years Eve and No 2 Friday 2nd February.

  

This is so strange for me as most of my life I have always had really short hair and now that it is short again I find it strange to see myself like this. I don’t think this will make much sense to anyone!! But it is something I cant really put in to words.

On a different note I had to make the hardest decision that any pet owner has to make and after Nina being so very poorly since the beginning of January we said our final goodbyes on Tuesday. She was so loved and is so missed already. Sleep tight Nina. XX

   

 

Well – so far 2018 has been a pretty shitty year!! But on a good note I have gone back to work and it’s great to be able to take back control of part of my life. The girls at work have been so supportive even though I have only been there a few months.

This journey that I am taking is full of many twists and turns, ups and downs. Some are good and some not so good. But each and every one of us is on a journey and many of you can choose which path to follow. My path has been chosen for me so it is the one that I have to follow, and I will see it through to the end. (God – that sounds a bit morbid!! Sorry!!)

Inspirational quote for the day!