16th October 2016 - Ciao Baby

I put this on Facebook but forgot to put it here, so this is from 16th October 2016...

Ciao Baby!

Enough was enough when it came to grotty hair colour, so off I went to the hairdressers to get some bleach slapped on me head! I couldn't take being mousey any more! Six weeks after my last Herceptin treatment and I decided my hair could take a bit of rough treatment for the sake of my vanity. Miracle worker Geri wove in bleach and colours and gave my hair a decent cut. When she had finished I cried! I felt like a little bit of the old me (pre-cancer me) was returning! I didn't realise how much I had missed Old Me. Geri was a bit teary too and said that was why she did her job, for moments like that! Bless her!!

I also set about shifting a bit of weight and exercising to see if I can recover even more of Old Me. Doing well so far.

Then last week I entered the Oncologist’s office full of hope that they wouldn't want to see me for another year. My optimism took a bit of a blow as the grumpy Registrar (same one that I was grumpy with last visit, but I choose to pretend I didn't recognise him!), told me they would see me again in 3 months and do a cancer marker test too. Which is good, I know it's great to be so well looked after, but I've had enough now, I've got blonde hair again, time to leave all that behind!! One good point is that he will review my Hormone Therapy tablets to see how my side effects are. So back again in 3 months.

But I have decided that now is the time to call it a day on this group. My lovely friends, you have lifted me so high and kept me going with your fabulous support, which I need you all to know was so very important to me and helped me enormously. I have been NED - No Evidence of Disease since my surgery in May last year and have no intention of allowing my body to change that, at any point, oh no!!

I will be keeping my blog up to date:-

http://bondbaldandboobs.blogspot.co.uk

Feel free to have a look at that if you would like to. I've put advice and stuff that I found helpful, on there as well as all these posts, might be handy for anyone you know who is going through this old malarkey (way too many of us).

Ta rah then!
Xxxxx

A Giggle For A Fumble!

A Giggle for a Fumble!

I thought I'd hit on something that would make my millions! Because of my perforated eardrum I needed to keep water out of my ear. I considered how to do this. Cotton wool? Nah, it would get soggy. I needed to cover my ear somehow. Plastic bag? Rain hat? Shower cap? Ah, shower cap. A mini sized shower cap for my ear! That would work. That's it, my idea will help water phobic ear people and make millions for me! £££££ Cha-ching! Very wisely I decided to check on Amazon to see if anything similar existed. Uh oh. There they were, the exact same thing I had invented. My imaginary millions flew out of the window and floated away. Oh well. I'd better buy some then. Next day they arrive and I shower happily without the need to put my head to one side and quickly flick away the water. They work very efficiently. Only problem is they are hysterical to look at! Lee and I have tears rolling down our faces. I look so silly!


So I am sharing this daft vision with you, but I want something in return, I want you to ask five people to have a good old feel of their boobs. Ask them all to tell five people too. Men as well, they can get BC also. Please have a fumble of your own boobs too. You never know between us all we could save someone's life. Finding a lump early can save your life. Sure it may mean a bit of a shit time for a while, but better that than death forever! There's no death for a little bit. Seriously find it early and stats are 97% survival. Get fumbling!!! Five friends for fumbling!!!!

Hopefully I've given you a giggle in return for a fumble!

Ear Ear....

What? Eh? Sorry? I can't hear you! That is now me.

After nearly a year of treatments I caught a cold. I'd had no infections at all during Chemo. Fellow chemo-ites fell by the wayside, but not me! My Manuka honey, ginger and Green tea built up a defence to help with my non existant immune system. It was probably more to do with luck really, well that and removing myself from society! So just when I thought I was safe, I succumbed to a sore throat, a thick head, dribbly nose and gunky eye. Then one afternoon my head kind of filled up. Felt like all my sinuses were full and my ears were underwater. My ear did a few loud popping noises then a mega loud long slow scratch like a needle dragging across a record and my ear starting to leak! My eardrum had perforated!!! I didn't have a clue it was going to happen. If I'd had warning I would have done all those blocked sinus things like steaming and hanging your head over the end of the bed! But no warning, just bang, perforated. Because it was leaking, I stuck cotton wool in my ear and looked like one of those sad people trying to say....look at me, I've got earache! Next day the doctor prescribes antibiotics and tells me to stay away from anyone with infections. She also says it will take a minimum of four weeks to repair itself!! Four weeks!!! It's driving me nuts. Push the palm of your hand flat against your ear, that's what it's like, deaf but with a swooshy noise. The weird thing is, I can't tell where any noise is coming from. If my phone is on my deaf right side, I hear it in my left side and so look to the left. I become very puzzled as to why I can hear my phone but can't see it!! I have sympathy now for those cotton wool ear types!


The really bothersome thing about it is my Herceptin treatment got postponed for a week. I know it's only a week but I didn't want to see that end date get extended. I had been lucky and had been well enough to not have any treatments postponed until now.

On the positive side, I'm sleeping really well, because if I lie on my good ear, I can't hear a blinkin thing and nothing is disturbing me!

Five to go......

Whinge, moan, whinge

I've been quiet for a while. I haven't had any enthusiasm for writing and sharing my thoughts. Which is not like me. Everything kind of got on top of me and I lost my oomph!

I haven't even wanted to go on Facebook, couldn't be bothered.  So my apologies for all the birthdays I've missed and any exciting/important posts that I haven't paid any attention to!  I've been far too wrapped up in my own doom and gloom to give two hoots about anyone else!!!!!

Soz!

What follows is a catch up, a bit more me, me, me, because that's what my blog is all about anyway!  So here we go.....

I'm so incredibly fed up of the whole cancer thing, it's now become tedious and boring and I'd really like it to all be over. Self indulgent moaning I'm afraid.  The good news is that my 12 month post diagnosis mammogram showed no evidence of anything nasty, which is excellent.  My 12 month post surgery check found that I've got lymphoedema (swelling and shit) in my boob.  Normally if you're going to get it, you get it in your arm, but no, it's in my boob!  Basically the lymph system stops working because of having lymph nodes removed, Chemo and surgery.  They have offered me treatment but it's held in the local hospice!! It's the only place they do it. Well I just can't bring myself to go there, so I'm going to sort it myself.  Amazon Prime to the rescue with brushes, tape, creams and YouTube for Yoga videos.  This is added to my whinge list because I really don't want anything else to have to sort out.  Also added to the whinge list is that I found an odd patch of skin, which the consultant said is eczema, and I'm sure it is, so I need to apply some steroid cream. (Not had eczema since I was 12!).  If it doesn't go away they will do a biopsy.  Here we go with that "be aware of symptoms, but don't think it always means cancer", seesaw to balance.  I've been assured that you get used to that and it becomes easier. Whinge.

I have 5 more Herceptin injections to go, out of a total of 18, so I'm nearly at the end. I've just invested in a selection of lavender/wheat heat packs in varying shapes and sizes to help with the bone and muscle pains. If I strap them all on at once I could do a fairly good American Football player impersonation!  I've given into this as my willpower for ignoring the pain has got up and left the building.  My energy levels have recinded back to about 30%, which brings me to the Spoon Theory,  which I found out about from my lovely sister- in-law Jackie Bex.  See the attached photo. I have an allotment of energy spoons per day so I have to choose which things to do carefully or I go into negative spoons. The Spoon Theory is brilliant and describes exactly what the energy thing is about.  I didn't understand it pre-diagnosis, but now I so do!

For a bit of positivity.....my hair is growing (albeit slowly thanks to Herceptin, whoops fell off the positive wagon there!).  I have even dyed it, just a semi permanent, as I didn't want to damage what little I've got!  The dye has sort of blended my grey and mouse, so it looks a bit better.  I may have to have it trimmed soon, to tidy up the wayward bits.

So that's me all updated. I am fed-up of fed-upi-ville at the moment, but I am eternally grateful for being able to be fed-up.  I've not lost sight of what could have been.

Just Another Year

I wrote the piece below yesterday, I don't want to change it but I have to put these words first.....

I have just learned of the passing of an old school friend, Gaynor Joseph, from cancer,  she had a different kind to mine, a less obvious one. Gaynor was a very gentle kind soul. She did the right thing and kept going to the Docs but no investigations were done until it was too late. Should that be happening in this day and age? Should any one with concerns be turned away? I know NHS resources are tight but the cost of catching a disease earlier must be cheaper than trying to deal with it in the later stages.  I thank God my lump was an obvious lump. I was lucky, there was no doubt about what it was. If I had been dismissed I may not have been able to write the following.....


Just another year has passed. Don't worry I know its not the beginning of January, I know it's the first half of April 2016. Just another year ago, in the first half of April 2015, I faced a new challenge, one I never thought I would encounter.  I had found a lump in my breast and did not know what the future would hold or even if "future" was a word I could have in my vocabulary.  In the past 12 months I have learned a whole new vocabulary and have become fluent in Cancer speak.  I learned about Wide Local Excisions and Clear Margins, FEC and Docetaxel,  Rads and Boosters, Targeted Therapy and Over-expressing Proteins, Hormone Therapy and Receptors. My world became a mixture of whizzing whirls of hospital visits and slow stagnant stays in bed, smiling steadfast confidence and bewildered beaten doubt. I entered a world that many others already existed in and many others will do so in the future.  Without the love and care of my family and friends, the lows would have taken over and I wouldn't have noticed the highs. I have been truly blessed to have the love of an amazing man, my soul mate, Lee Bond and the totally selfless unending care of a wonderful mother in law Chrissie Bond. My offspring injected me, fed me, wiped my tears and made me laugh by abusing me with their sick sense of humour, a grounding that is always needed! My other family members and all my friends have all been invaluable in their wise words and generous kind deeds. I'm not going to turn this into an award acceptance speech, so I won't name names, but thank you a hundred million times!!  After 12 months I'm still having treatment, so still tripping back to the Chemo ward every 3 weeks for Herceptin jabs, which will finish in September. But for all the thanks above, the biggest gratitude has to go the NHS and the incredible research that has given me the treatments to fight this disease. Love on its own can't do it.

Because of all this I am looking forward to April 2017 when I can say .......  just another year has passed.


My thoughts are with Gaynor's loved ones xx

Little Victories

From 13th March 2016

Little Victories

Saw the Oncologist last week. Had the results of my Cancer Markers blood test, which were in normal range for both recurrence and spread elsewhere. This will be tested again over the years, if my levels rise it may be a hint that something is going on. I feel it is a little victory. On the downside my stiffness, swelling and pain will last until the Herceptin stops in September, or until the Hormone treatment stops in 5 years time, as they can't tell which is causing the side effects! I can hack it. The little victories are worth it!

My hair is growing apace and sticking up all over the place if I don't tame it after washing. My eyelashes are back to full length and my nails are finally, finally, starting to appear. I only have one long enough for a bit of a scratch, but it's a good scratch! All are small victories.

Got my first year mammogram next month which will set my mind at rest, I have a few lumps for it to have a look at, but I know they are innocent. Getting a good result from that will be another small victory.

Small victories all add up to that one big victory.

My Favourite Things

To celebrate all the things that I now have or can do, please sing aloud, to whoever is with you, the following lyrics to the tune of "My Favourite Things" from "The Sound of Music"

My Favourite Things (Breast Cancer Version)

Lashes on eyelids and mascara to coat them
Eyebrows with arches and pencils to fill them
Eyes blue and sparkly in all colourings
These are a few of my favourite things

Soft hair that covers my head now it's growing
Shampoo with lather so frothy and flowing
Essence of vanilla it beautifully brings
These are a few of my favourite things

Perfume with amber or jasmine or roses
Sandalwood ylang-ylang it's all for our noses
Shower gels scented with spiced floral springs
These are a few of my favourite things

Restaurants with family and takeaways delivered 
Shopping with daughter and giggles unmeasured
Driving around with my own set of wings
These are a few of my favourite things 

When I look back, when my brain zings
When I'm feeling mad
I simply remember my favorite things
And then I don't feel so bad

Written with gratitude to the amazing healing properties of the human body xx

Defessus

From 14/2/16

Weirdly this week I have found myself having to defend and explain why I get tired. Someone I had been talking to didn't mean any harm, but when I replied to their "how are you" question with "I get very tired very quickly", they said "well I get tired, everyone gets tired" and they kind of dismissed my response. It was odd. I went on to explain in more detail how I feel and why the treatments have caused my tiredness. But those words fell on deaf ears. I think I have hit the "well you look alright" scenario that people with an illness get. It felt so strange giving a justification for feeling the way I do. I am considering ditching the effort that I put in to making my face look presentable and instead going barefaced with a sign that says "having treatment for cancer"!!!! My beautiful sister in law who is on dialysis and waiting for a kidney transplant always makes herself look gorgeous and sophisticated, people look at her and say "but you look well". You stick your slap on your face, you smile and laugh, show everyone that life carries on, go home and collapse in a heap away from people's eyes. You don't want to shove your illness down people's throats all day everyday, so you put in the effort to look OK. But then because you look OK people think there is nothing wrong with you and you must be a hypochondriac if you mention any symptoms!! Conundrum or what?!!

My answer to all this is to keep my pride and keep my slap on, but I have deduced that the words "tired", "fatigued" and "exhausted" just don't cut it. They are too commonly used and don't explain the actual way poorly people feel. Breathless, dizzy and a bit sick, your plug gets pulled, your batteries run out, you need to lie down now, you can't move any part of you, talking is too hard. But you keep smiling and saying you're OK. This happens daily, repeatedly. So I have found a new word. I am going to use "Defessus" from now on. It is Latin for Tired, but I feel has much more depth about it. "How are you?" "I'm really suffering from Defessus right now", or "I'm doing well but Defessus has got the better of me"!! I'm sure that will evoke a better understanding, without it ending up sounding like a plea for symphathy.

Every person that has an illness please feel free to introduce Defessus into your vocabulary!!

Radiotherapy

One week of Radiotherapy done, 4 weeks to go. My very first session had me giggling to myself. They have to line you up to the dots tattooed on your body, this takes a bit of time and patience on the first session. They had trouble lining me up, the Radiographers were shifting me slightly up, down, side to side. The lady radiographer in charge happened to have a German accent, and I struggled not to giggle when she said “You may zink you are lying down properly but you are not. Get up, get up. Walk around ze bed and get back on”. So I did, rather briskly, given that I was naked from the waist up and was following orders!!!! I lay back down. “Zat is better”, thankfully my dots lined up this time, I was not looking forward to what may happen next if they had not! The Radiography itself is rather strange. The zapping bit of machinery is positioned and the Radiographers leave the room. There is no window from their room but there are cameras so I assume they can see me. When they leave they switch the lights on, so there is no visual indication of any zapping. The only noise is a bit of clunking. It feels rather odd, perhaps vulnerable, you lie there still and semi naked as they remotely operate the equipment and then wait for them to reappear to move the equipment to its next position. You don't know if it has finished or not. I have wondered if they grab a quick coffee before coming back because it does take a while sometimes. It's also occurred to me that if anything happened to them, how long would I lie there for? At what point would I think they are not coming back and decide to get up?? “You vill lie there until I zay” ran through my mind!! At what point would I defy the authorities and just get up? Would the machine still be issuing radiation rays and would I get zapped in the brain as I sat up? Luckily at this point the Radiographers did reappear, actually it didn't take too long, just enough time for my overactive imagination to have kicked in!!

The only side effects so far are lightheadedness, feeling very tired and bit off my food. I also have one slightly tanned boob (or toasted as my Mother In Law said!). All of which are nothing compared to Chemo. My wonderful MIL has been taking me there and back and we have of course disseminated the others in the waiting room! Most people are lovely though, apart from the ones the MIL has heard moaning about having to have treatment! Not sure if they think about what may happen to them if they don't have treatment! Takes all sorts.

On a nice Christmassy note, I went to my works Christmas party. I managed a couple of dances and a couple of glasses of wine but then I needed to lie down and people may have wondered why I was lying on the carpet under the table (but then again from previous years, maybe not!), so I headed home at 10pm. Am glad I went but suffered for it the next day. It was my cancer treatment equivalent of a hangover! Loved seeing all my work friends though. Fab people xx.

Statistics, Damned Statistics and Pies

I've nearly reached the end of the very last Chemo cycle and it was time to discuss the next lot of treatments with the Oncologist.  I'd got through the worse days of this cycle and started to feel a little optimistic about getting back to normality as the last couple days have each been an improvement and the only way is up from now. In my head I am only a few days away from being in work each day, whizzing round the shops, catching up with friends, a normal mad paced life.  So my smile was quite big as I sat down in the Oncologist’s office.  She proceeded to tell me all the possible side effects of Radiotherapy, which they have to do and I signed my piece of paper to give consent to the treatment. She then told me I was still susceptible to infection for a while longer and my energy levels would not start to increase until after Rads, probably the new year.  My upbeat optimism came crashing down. I knew in my heart it would take time (plus my friends with experience have told me), I suppose I just didn't want to hear it. Chemo over, that's it, fixed, back to normal, crack on my son!  I suppose I've run out of patience with it all.  It's the mental battle of balancing not actually being ill with feeling so ill you can't function normally.  The cancer hadn't given me any symptoms but the systematic poisoning from Chemotherapy has destroyed my body.  Yet I know it is all for a mighty good purpose, keeping me alive.  I'm just so fed up of it. So I felt a little deflated. I want to run before I can walk! I want to stand before I can sit. Socialise before I can be social. Have a 10 minute conversation instead of a breathless one sentence.  All in good time my friend, rest, rest, rest. (I can hear Juliet’s voice saying this!).  We also need to see what effect the Herceptin injections have and won't know this until the next visit to the Chemo ward for just Herceptin. Humph!  I'm hanging on to my optimism but I can feel it dripping through my fingers like gloopy treacle slowly pooling in a dark brown puddle on the floor.  The other thing the Oncologist discussed was the Hormone suppressing therapy.  If your cancer is Hormone Receptive (this means it is fuelled by hormones) you need to have tablets, to help prevent that type of cancer recurring, most commonly known as Tamoxifen, but mine is a different one.  The receptive levels are assessed and if high enough, the treatment is prescribed. Mine were borderline.  Here lies a conundrum. I asked the Oncologist what percentage difference the treatment would make to my risk of recurrence, she worked it out and it was 2% at 5 years and 4% at 10 years.  It seems nothing does it? 2%??? There are many side effects with this drug and I will have to take it for the next 5 years. So how does one compare the element of side effect risk versus the 2% improval offered?  Weirdly to me it was no contest, I'll take the 2%.  I think this is because Chemotherapy has similar small percentages, I think it was 5% for me, so having been through that, why stop now? Percentages are an odd thing. I had a 20% chance of getting a particular aggressive type of tumour, which I did. That shocked me, I never thought I’d be in that 20%. Let alone that the 12% risk of any woman getting breast cancer would apply to me. But it did.  Perhaps that's why 2% means a lot? It just doesn't seem like something you should dismiss and refuse.  If someone told you that there is a 2% chance that you would be shot and killed tomorrow morning when you left for work, would you go out the door? I bet you would throw a sickie and wait until the next day when you knew it was safe!  Perhaps it depends on your circumstances, how lucky you are feeling.  Maybe I don't feel very lucky, so 2% means a lot? Feeling unlucky and pessimistic, I scrape up as much of my gloopy optimism off the floor as I can and leave the Oncologist’s office.  Never one to dwell in the land of the pessimist, I decide such feelings need to be addressed so it was Fish 'n' Chips for tea washed down with a can of lager and Blackcurrant & Apple Pie with Ice Cream for pudding. Mood instantly lifted. Statistics? What statistics? Pass the pie.

Doing Daft Things for Cancer Research

Oh my! My rather gorgeous nephew Samuel Wilson is doing some fundraising. He is doing mad stuff and you can watch it online (don't ask me how, I'm over 35). He is doing this in memory of his Grandad and to support me!! Am rather overwhelmed by this. So good people, please support and donate if you wish. It's for Cancer Research!

 https://www.justgiving.com/SoItsMaestro/

Bravery

I never understood why people described cancer sufferers as being brave.  I just didn't get it.  Surely being brave is jumping in a river to save a drowning soul, or defending your military position against certain death, or standing up to bullies in the face of actual pain and humiliation.  That's bravery surely?

Yet cancer sufferers are paraded across our TV screens and newspapers like gods we should worship.  With all the accompanying wordy waffle of the feats of their bravery.  I couldn't understand what bravery had to do with it.  If you've got to have some medicine to fix you, that decision isn't brave, it's just foolhardy to refuse!

Apart from kids.  A photo of a bald headed little kid with a tube up its nose and an IV drip and trolley being dragged along, would of course elicit only sympathetic words like "Brave little thing" from me.  I don't know why I discriminated between children and adults.  Perhaps I saw the children as innocent and maybe viewed the adults had caused their own downfall in some way? (A discussion for another day).

Now that I have a Breast Cancer diagnosis I do feel a little differently about the "Brave" word.  I still don't think it's a good fit.  I think "Coping well" or "Handling it" or "Getting on with it" are better descriptors.  But I do admit to feeling that I may be a little bit brave at some points.  This is usually just before a Chemotherapy session.  I really, really don't want to do it.  My body has just started to heal after the last poisoning session and I am fully aware of what is about to happen to my body all over again and I quite simply do not want to do it.  Yet to me it is more of a question of survival than bravery.  Survival comes top of this particular decision making criteria.  (Anti chemotherapy souls may dispute my survival theory here).

But with all this unsolicited experience to my name, I am, whether I want to or not, expanding my comprehension of bravery.  I get it now that those dealing with illness face challenges which are met head on with stoicism, pluckiness and fearlessness.  That is their brave decision.  They could decide to deal with it by complaining, moaning, making a fuss, blaming medical staff for pain and turning against their loved ones.  Yet to remain resolutely defiant that you will not be brought down by this mass of unfair circumstances is most definitely a brave decision.

So I take it all back, my easy dismissal of yet another brave cancer victim.  Anyone who can sit and watch that chemotherapy liquid infusing into their body with the full knowledge of what will follow, is most definitely brave beyond words.

So there, I'm brave.  So are many ladies including Juliet, Marion, Karen and Tracy. Here's to us. (Plus all those before and those that will follow, too many).

I also have to include a mention for the Kidney people out there, both dialysis and donor. Jackie, David, Ruthie and Gaz. Wow.

Brave people xx

One favour, please do not comment saying I'm brave, my detractors will say I have only written this to get "brave" comments. It's not been done for that reason, it's a simple discussion on what "brave" means to me. So no brave comments!!!! Thank you x

Going Public

We are a strange lot us human beings. Thankfully we are programmed quite strongly to help each other with survival. However underneath that we have multi faceted layers of complicated feelings, worries and anxieties. So many what if's, I'm not sure’s and what will they think’s? We are all going to react to major circumstances in our lives in many varied ways. These reactions may serve us well or they may result in more devastating problems. We just don't know. All we can do is go with the reaction that feels right for us. Only time will give us the clarity of hindsight. During my current progress through the web of illness recovery, I have discovered that we are all a little fond, myself included, of a subtle criticism of the way people deal with their illness. I understand this is a basic human response, as we want to validate our own choice of action as being the right one. The problem I have found with this, is that while it helps to strengthen your own resolve, it fairly well decimates the person you are criticising. I have chosen to go all out and tell everyone everything. Others tell no one but their closest loved ones. There is a whole range of individual and unique reactions, from those who go over the top and leap on the "Illness" train, with a need for attention that makes you cringe, to those that stay so quiet, sheltered and reserved that they become resentful that no one understands what they are going through, because no one knows. It is such a difficult balance between dignity and ignominy. That balance will only be chosen by the person viewing you. You have no control over the way they see you. We may feel so passionately that someone is making such a wrong choice in their life and feel there is nothing ahead for them but impending doom. We may have tried to explain this to them, yet they dismiss our concerns and assure us they know what they are doing. Hopefully what we do is sit by, watch and be ready to pick up any pieces should the worse happen, without ever saying those awful words "told you so". But if we end up wrong and everything goes right, can we say "I'm sorry, I was wrong". I'm not sure we can! Everyone has valid good reasons for behaving how they do, even if they can't elucidate why, it just feels the right thing to do. When I was first diagnosed, I took some time to decide how to deal with it. There is so much to consider apart from all the medical facts and the practical problems, but the biggest worry is other people. It is so easy to upset them. I know that sounds mad and should be the last thing you worry about, but for me it was one of the first things. I had to somehow balance my feelings and needs with theirs. I've always been happy in my own company but I do love knowing I have the support of my family and friends, without that I'd feel very isolated. I don't want to be mobbed by people, that would drive me nuts, but I am very very fortunate in knowing I could turn to any of them and say "help". That means the world to me. So my decision to go public about my breast cancer was, of course, multi faceted. Firstly laziness came into it. Trying to keep everyone updated was going to be much easier done all in one place! Secondly, I hate awkwardness, I dreaded meeting someone and having one of those conversations where we dart around the subject that no one will broach, yuck. I'm much happier when someone says "how are you?" and I reply "shit" and we move on. Love it. My next reason was one I am very passionate about and it's now become a clichéd word "Awareness". I feel compelled to tell people to check their boobs. Following on from that is my need to help others, whether they are diagnosed or are supporting loved ones. To me knowledge and understanding are so important. Sharing a recovery journey is one of the most important coping mechanisms for me. Hearing that someone has a similar side effect, reduces your anxiety levels. Comfort in numbers. Lastly I love writing, always have done. I have that need to be creative and lying in bed tapping my keyboard gives me such a wonderful release. I did try crochet (which I love) but it was too much physical effort! In truth I would be stifled without this wordy therapy.

I'm aware that I sound like I'm justifying my actions and that's not what I want this to be about. I want us all to be aware that other people's choices are just that, other people's choices. We must try hard not to take slight or be hurt by them. We must put our feelings second to those of our friend or loved one and do our best to support them through their choice. It's a big ask I know. Because underneath it all, we just love to be a little bit bitchy, don't we?!!

So read it, don't read it, criticise me, praise me, share my words, delete my words, understand me, ignore me. It's your choice and I respect it. I'm just happy doing my thing and very much hope that by doing that no one feels I am criticising them!

Complicated darn world!!

Sonic Pings and Sheldon

This week's adventure was an Echocardiogram. 

I will be receiving a treatment soon that could cause heart problems, so my heart needs to be monitored. I received my appointment letter for the Echocardiogram and it made me giggle. Strange you may think, but the opening paragraph was so random, it had to be written by Sheldon (Big Bang Theory). This is how it went....."Dear Mrs Bond, Ships use very high frequency sound waves". Feeling bewildered? So was I. It continued "projecting down into the sea to monitor the depth of water and to look for moving objects in the water". Yes, Sheldon's still explaining. "Recording equipment picks up the echoes bounced back from objects below the water enabling their size, shape and movement to be monitored". OK Shelley, what are you wittering on about? Ships? Water? Sound waves? Where is this going? For a moment I felt I was in work reading an engineering working instruction! Then Sheldon became a little clearer, "This procedure can be used to study the anatomy of your heart". Ah ha! So I need a ship, some water and some sonic pings? My brain was a little on the side of confused, whilst giggling to myself that this was the strangest appointment letter I had ever received! Wait, wait, Sheldon almost manages to talk a bit of patient speak "The Doppler Study uses changes in the frequency of reflected sound to measure blood flow through your heart". So it's just a fancy scan!   Now I know we all crave more information from the medical world, so I will not be critical and heck it did make me laugh!!! Hubbie and sons inform me that ships send sonic pings down to hunt for submarines, so it did occur to me that the odd sub may well be found floating around my heart, but the type with ham, cheese and tomato!!!!

My wonderful MIL (Mother in law) collects me and off we go for my sonic ping adventure. The Cardiology waiting room is full, as all waiting rooms are, but we are good at this now and are Kindle ready. We sit down, the MIL manages to sit on part of another lady patient's bag, which she tries to whip away quickly. Apologies given etc, the lady says "Don't worry it's only an Echocardiogram!". We smile and make the right noises, but I'm thinking, why have you got an Echocardiogram in a carrier bag and just what does one look like? The object in the bag looked to be the size of my Sky Hub. Very confused and with so so many questions I wanted to ask, I did the right thing and said nothing. I did think, I may have my own soon to transport around in a carrier bag!  Not enough time to resort to the Kindle as my name is called. The Cardiac Physiologist (lady doing the pinging), takes me into a room and tells me to strip to my waist, it crosses my mind how easily I do that these days, will I be stood in Sainsbury's one day and over the tannoy I hear "Shelf strip down in aisle five please" and before I know it, I've released my boobs to the unsuspecting pickles, sauces and tinned goods customers? Back to the pinging, I put a gown on and lie on the bed. Sticky pads get applied and wired up and lashings of lovely lubricating gel gets slowly smeared all over my chest. Steady boys, steady, if only it were going to be that much fun!!!  I'm told to lie on my left side and my Pinger says "I'm not really hurting you but I have to press hard". Oh dear Lord but you are!  Ouch and double ouch!!!  She is pressing the Doppler doodah very hard into my left boob, right on the site of my surgery. This is not good I tell myself, I'm not liking this.  It's pressing down right onto my ribs.  She finally releases the pressure.   Then she tells me to breathe in, in, in and out and...... hold it!  I'm holding, holding, still holding, s..t..i..l..l.. holding.   I start rolling my eyes and pursing my lips, trying to stop my brain from thinking "Hello, I am not breathing!".  And release. Praise the Lord, I grasp a few quick breaths.   Uh oh, the Doppler Pinger is on the move, she plops my boob out of the way and attacks me in the side of my rib cage, I mean right in my rib cage, this hurts!   She does apologise though and I understand she has to push or the pings wouldn't work.  More deep breaths in and out and hold.  Oh no, more eyeball rolling, lip pursing.   I am going to expire. My brain is screaming "breathe!!!".   It also occurs to me at this point that I should never seek an alternative career as a deep sea free diver.  At last she says "Oh sorry, release"!!!!!! She forgot to tell me!  She then says "just hold it for as long as you can".  A little late in the day for that important message don't you think Cruella De Vil??   Then the door opens, a man says "Hello" from the other side of the curtain.   Please don't come in, please, my boobs are spread all over the shop, dignity where have you gone?  Cruella kindly pulls my gown half over one boob.   Thankfully he doesn't come in any further, they exchange a few words and off he pops.  Sometimes I just hate the helplessness of undignified hospital body bits exposure.  So a few more rib cracking thrusts from Miss De Vil and she tells me to move onto my back, she Dopples my tummy with the same manoeuvres and then sticks it in my neck.  Any other situation you would be wrestling someone off who purposely tried to throttle you!!!!!  Throughout all this I did hear the occasional sound of blood swishing through my heart, which was reassuring. I didn't hear any hatches being battened and calls for "Dive, Dive".  Also reassuring.   All done.   My lovely lady Cardiac Physiologist (can't call her Cruella anymore, once the Doppler was out of her hand, she stopped being a sadist), then told me my heart was all good, it was all balanced and everything was working normally.  So it's official I have a good heart!!!!   Gel wiped off, clothes back on, back to the waiting room to interrupt the MIL from her Kindle, which did look like it irritated her a bit, has she found a legitimate escape from the FIL?  As she also has a good heart (huge one), she packed away her Kindle and drove me and my good heart home.

Overall a positive day, but I hadn't been given my own Echocardiogram, just what was in that woman's carrier bag?

Loves to CB xx

Amazing Coppafeel Rae Morris video

Please watch this amazing video by Rae Morris for Coppafeel charity.  I am in the position on the left, don't be the one on the right.  Feel those boobs!  If you download the video from iTunes, all the money goes to Coppafeel

Coppafeel charity

Chemo and Daytime TV

Halfway through my chemotherapy
And I haven't once watched Jeremy
Even with all this time on my hands
I refuse to succumb to TV demands
Daytime TV is no place for me
I'd rather set my imagination free
So my brain wanders from place to place
Improving my lot is not a fast race

I'm slowly marching through each week
Obviously without being too meek
I've dealt with the first three infusions
How nice if the next three were just illusions
The therapy now changes, it's all anew
Side effects will come out of the blue
The unknown is what causes most concern
But from a path travelled once I will learn
What helps, what hinders, what will heal
Only then can I wholeheartedly feel
With true judgment and cunning wile
I still don't want to watch Mr Kyle!

Look for Lumps = Look for Life

Be honest ladies, how many of you have run your fingers over what felt like a lump, had a mini electric shock of fear course through you, then hurriedly move your fingers away and ignored what you may have just found?  

My hands are up, I've done it in the past!  My boobs are naturally lumpy anyway and whenever docs and nurses had a rummage in them, they always found something, but it was always a harmless natural lumpiness.  Anything that I found I always put down to that too. I quite simply sectioned it off to those compartments that us girls have in our heads, that are titled "nothing to be worried about". We don't want to make a fuss and take up the time of NHS staff for simply nothing. But that really isn't the right attitude nowadays.  

I bet you will know not only 1 person with Breast Cancer, but more likely at least 2 or 3 if not more.  You may even know people that have passed away from it.  It does seem to be everywhere now.

Thankfully when I felt my lump, I just knew it was a nasty one.  It felt different.  But I did have that fleeting moment of thinking "Ignore it", seriously I did!  Luckily that disappeared from my brain in a nanosecond.  But what if it hadn't?  What if I had ignored it?  Not wanted to make a fuss, not wanted to go through the awful waiting for results? The period of keeping it quiet in case it was nothing and I looked a fool for making a song and dance over nothing? Quite simply, my lump would have grown and spread, I would be looking at a very different scenario than the one presently before me.  

Once you can feel a lump it has the ability to spread, this means you have to leap into action, not sit around pondering whether to do anything about it!   Did you watch "The C-Word" recently on BBC1?  It was raw watching for me as I had only just been diagnosed, but a Mammographer that I know, reported an increase of 30 women who, following the programme, noticed changes in their boobs and followed it up, 3 of those women were diagnosed with Breast Cancer.  That was just in one hospital in one town.  Potentially that one programme has saved 100's of lives.

So you see if you find it early enough and follow it up, you may well save your life!  We have to accept that Breast Cancer is out there and its likely to get you, so let's stop it in its tracks!

I want looking for lumps not to be equated with a dire outcome, but a positive one, looking for lumps should equal looking for life.  Go looking for lumps, understand your boobs, know their road map, know how they feel throughout your cycle, you will then stand a good chance of feeling any changes and acting upon them straight away, look for life.  Impress on your daughters and granddaughters that this should become a habit for life.  I support the Coppafeel charity because they start with the youngsters, they offer a free checking reminder service. Take up that service whatever age you are.  Lets make lump finding a positive thing. Please also remember it's not just lumps, but any other changes too.  Get to know your boobs!

I've had the results of my scans

I've had the results of my scans......

We had been fairly petrified of what we were going to hear, a bad result meant we could be given a scenario of how many years I had left, but praise the Lord and hallelujah, the results were, no secondaries! This means my cancer has been contained, so my surgery and chemo etc should all be effective at knocking it on the head! (We will need to wait until treatment is finished for those results). So at this moment, after the scan results, I am very grateful and much relieved!

But....

I have to say "But". Why? Not because I am the most negative, pessimistic soul ever, but because I am a realist. I like to have all my facts and figures, know what the reality is, decide on my course of action. I also say "But" because I need to look after everyone around me. I need to be careful with their emotions and feelings. I care for them because they care for me. If after my treatment, I was to say I'm "all clear" they will quite rightly rejoice and feel relieved!! However if after 1 year, 5 years or 10 years, my cancer comes back, they may think, she told me she was all clear, what has she done to herself? Did she not look after herself? Didn't she do all the correct things she was supposed to do? I know they may think this, because I've thought it myself of other people. Have you not been a little bewildered by people you've known who have gone through all the chemo etc and said they've beaten it, but a year or so later it returned? I was. I now know that it comes from a complete lack of understanding of how breast cancer behaves, or rather misbehaves! This is how it goes, the surgery, chemo and radiotherapy should kill off anything that exists. The hormone and targeted therapies will help to reduce the risk of recurrence. So BC can then just decide to pop up again either as a repeat of the first time or as secondaries in other parts of the body. This is where my "But" comes in, I know my statistics, I am aware. I have less chance of recurrence than someone who smokes dying prematurely, 50% of smokers will. Most smokers live in a dream world of denial. I'm not in denial. If cancer dares to strike me again in the future, I will be prepared. If I told people it was beaten and then it came back, how puzzled and mystified would they feel? I have accepted, that albeit in the low percentages of chance, there is a possibility it could return, the rate is approx 25%. (To all smokers out there, look at me and realise that I have a better chance of living longer than you!!! That might make you give up!!). The recurrence rate is roughly the same for all Breast Cancer club members. It's the only cancer where you can't say after five years it's all clear, because it can come back after even 20 years! You can however, say that your cancer has been treated. Treated and cured, I have learned, are two different things. Now please believe me when I say I am incredibly positive and I am not being negative in any way, I am just being realistic. I have a future. A future filled with laughter and love, my future. What this future will have to contain though is for any lumps, bumps, aches or pains that arise, I will have to view them with a little more suspicion. Now trust me, I can handle that! The answer I will be looking for is, there is nothing wrong. I will not be spending my life thinking it may be cancer, now that is negative! However it is a conundrum, looking for lumps and aches all the time is negative, but ignoring them is negative! What's the one thing that we are all persistently told? Examine yourself, get it checked out. So why then after a diagnosis would you not follow that advice? It is the most positive action ever. I've saved my life once already by finding my lump in time, I'm definitely up for saving it again should those pesky blighters dare to return!! I believe taking a pro-active stance is positive. This can't be viewed as having a negative outlook. So when I say I have "no secondaries...But" you now know that it's a positive thing to say "But", it will help those around me to deal with possible future shock and most importantly, it may well just save my life! Again.

Bald Showers Are No Fun

Bald showers are simply no fun
With no hair there's nowt to be done!
Ten minutes each morning I would spend
Washing and rinsing hair root to end
Lathering, rinsing, massaging with froth
The water completely carried me off
It took me to a island paradise dream
With waterfalls crisp and sparkly clean
The sun envelopes me with a healing glow
I add conditioner to the smooth liquid flow
I feel the suds slide down my back
Of joy and glee there is no lack
The sparkling water splashes through my hair
I'm enraptured by the sense of clean fresh air
No longer a razor called Venus have I
Its a real life sponge I drape up my thigh
Removing hair in a turquoise sea so blue
Much better than stubble flicked into the loo

A ten minute morning adventure
From real life a moment of censure

But no longer can I enjoy such bliss
With no hair its simply all amiss
Five minutes is all it will take
No exotic island tour to make
I now have no reason to drift far away
There's no tresses to wash at the start of my day
No more depilation
To aid relaxation
I get in wash my bod and I'm all done
That's why bald showers are no damn fun!

My boss left his job this week and I sobbed my heart out.

My boss left his job this week and I sobbed my heart out.

Not because he left, but because when I said goodbye I shed a tear, then without warning the floodgates opened. I became a blubbering sobbing mess.

I returned home from his leaving do and fell into the arms of my bewildered husband, heaving, gasping, muttering nonsense, tears streaming down my face. "What's wrong?" Asked my husband, holding his arms tightly around me whilst trying to look me up and down to inspect for any signs of outward damage. Talking in the gulp, gulp, grab breath, one word, gulp, parlance of a bereft sobbing woman, I tried to explain "I," gulp, gulp,"feel", big breath, more tears, "so sad". Floods of shoulder shaking tears. My body gives up, being upright can only be supported by my husband. He moves me to the sofa and we sit. I'm wrapped up in his love. He wipes the tears from my face with his fingers "Oh Sweetie, what's happened, why are you so sad?".

"I just don't want to be doing this". There I've said it. My bravery, my stoical resolution, my smile no matter what, my Dunkirk Spirit, my inspirational status, has all come crashing down. It's hit the floor with a resounding smash like a redundant chimney tower being demolished.

I had gone out that evening for the first time, for a normal night out with friends, since my diagnosis. It was also the first evening out with my new "1920's Hollywood" look, A.K.A. a headscarf, dangly earrings and a bit more slap. I felt fine, I was looking forward to the copious giggles that I knew would occur with my workmates. I have always been very lucky with the people I have worked with, laughter and bad taste jokes have always been in plentiful supply, whichever Company I've worked for.

So there I was in the pub with my lovely friends, being normal. Except it wasn't normal. I'd joined everyone a couple of hours after the start, as I'd been home for a sleep. I wasn't drinking, I am allowed to, but I'm keeping it very limited. I wasn't having a meal because I need to keep the risk of infection to a minimum. I had no hair, but instead a headscarf on my head.

Whilst I sat there enveloped by the warm companionship of my friends, it was different. I was viewing everything around me with suspicion. The sauce bottles and menus had congealed liquid over them, the table had sticky patches on it, the woman on the next table coughed, the plates did not look clean, my friends meal looked undercooked, there was a used tissue on the floor. Oh my God, I had turned into Miles from Frasier! I've already got hand gel in my bag. It was like I was a newborn babe being taken out into the world for the first time. You wrap an imaginary bubble of protection around that baby and by staring hard at people you can will them not to breathe over your precious bundle. But I had to do my own staring and willing. I felt apart somehow, the gooseberry on someone else's date. My levels of self protection were at Defcon 1. I couldn't stop wondering how many dirty hands had touched my glass and straw. Dear God, paranoia? But no, this had been drummed into me, be careful. I have a low immune system, no way of battling infection. I take my temperature three times a day everyday, if it rises it could be a sign of infection and off to hospital I would need to go.

This was not a normal night out.

Then my headscarf came undone. My poise and perfected elegance unravelled. I dashed to the loo with the same fear as if the arse in my trousers had split. The underneath of you does not get exposed. The veneer of clothes and accessories should remain intact. As I re-tied my scarf my hands were shaking. This was not good. This should not happen. This was upsetting. How odd. I knew that the pre-diagnosis me would not have bothered to re-tie it and slung it down on the table with a "Sod it". But suddenly I felt vulnerable.

I looked at myself in the mirror, my face more heavily made up to balance the loss of hair. Was that me? Am I still there? I felt like a drag queen without his wig.

Deep breath taken, scarf sorted, I rejoin my lovely friends for some more laughter. Then it's time to say goodbye to my boss for the very last time. I feel a lump in my throat, a tear starts to roll, oh no, am I really going to blub? It's on its way, I try a breath and a gulp, it's no good, I spurt out "I have to go home now". I scuttle away. Rushing towards the door the tears are streaming down my face, just get outside is all I can think, then my headscarf comes undone again, I sob.

I'm outside, I get in my car and swear at myself. Stupid stupid cow. What the f**k is wrong with you?

I get home and collapse into my husbands ever strong, ever calming arms.

I go to sleep still gently sobbing. I wake up to find I'm in the same state, tears start to trickle. A nice cup of tea might fix this. Oh my Lord, I'm off again. Where the hell has all this emotion come from? I consider myself a strong and capable woman, like everyone I've dealt with lots of shit over the years and come through it still smiling, but today I need help. Today is not a day to be brave and stoical. Today I give in. I text a friend who is nearby, brief details that I've had a major meltdown. She prescribes an afternoon of chocolate and cake and she will bring supplies.

She arrives on the doorstep, we look at each other and instantly cry. We dissect my feelings. We cry some more. More tea, more chocolate, more dawning realisation. I'd reached that moment. It was my time to crash and burn.

My friend dug all these feelings gently out of my soul. I could not understand why I was sobbing, was I really that upset about my boss leaving? It turned out to be the catalyst that unleashed my built up anxieties.

Without friends like this our world would not be as rich. I am lucky in that I know I could have dropped my blubbering self on any of my friends doorsteps and they would have all scooped me up. A true mate is one that you can cry in front of with no make up on, unwashed, unkempt but not unloved. I am blessed.

I am so glad I wasn't afraid to ask for that proverbial shoulder to cry on.

It helps. Big time.

Fortunately my brain and my tear producing hormones have now written a peace treaty. The dust from my collapsed chimney tower has settled. I will expect to feel like that again at some point. This is surely what normal is. Otherwise to be a in constant state of controlled vigilance, guarding against raw emotional fears, cannot be healthy and can only lead to years of suppressed resentment. I'm not going to do that. I'm here, this is me, life at times is shit, but for the majority of time, life is a gossipy giggle with real good friends.

As well as remembering to tie double knots in my scarves, I'm now back to being irreverent, rude, rebellious and a little bit naughty. Because being good all the time isn't normal either!!!!

Kisses to MK xx