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

Nearly there...

11 Sept 2016

I was hoping to do an update next week after my appointment with my Oncologist and was going to say all sorts of positive stuff but they have cancelled my appointment and moved it on three weeks. So my dose of positivity will have to wait!!

So back to being grumpy....

I've managed to get Epicondylitis (posh word for Tennis Elbow), obviously in my sleep I've been nipping out and playing a few sets with Andy Murray!! Much to my chagrin I need to wear a support thingy on my arm. I now look like one of those people who always wear a neck brace saying "look at me, I've got a poorly". Hate that. But it does make a heck of a difference painwise so I have to retract my criticism!

I've also arrived at the stage that takes people by surprise. The big treatments are over and your brain doesn't need to cope with that anymore so it turns inwards and asks "What the hell happened to me?". It's a bit scary and suddenly very real. Lots of "Oh my God" moments. Seconds after taking the photos in "My Last Treatment" post, I broke down in tears in the hospital corridor, luckily MIL was there to hug me. It took me completely by surprise. Friends who have been through this, have said this is the point where they have sought out help. So I'm launching into getting my strength and fitness back, you may have seen The Bond BC Challenge.

I think I will stay here in denial for a little while longer.

The Last Treatment

This week......

This week will be quite a big one
On Wednesday I will be all done
Treatment thrice weekly
Got me feeling meekly
Like I couldn't do it anymore
Coz my thighs had got so sore
From that painful slow injection
Designed to boost projection
From nasty lumpy bumpy bits
Getting inside my frumpy old tits
My bank account is now quite bereft
Hospital parking fees are just plain theft
One last trip to the Chemo ward
One last waiting room in which to be bored
One last three week wait
For symptoms to abate
For when it gets to week four
I should no longer be sore
Please understand Herceptin is a hero
Without its treatment my life could be zero
But my tolerance levels are pretty low
Of leading a life so damn slow
So hallelujah praise the Lord and amen
After this week my life should finally begin again!

Little Miss Grumpy

Last week I had an appointment with the Oncologist, a general kind of check up, I thought I would get them to look at my arm, which was more painful than normal and slightly swollen.  So I'm sitting in the usual waiting room, waiting as usual. I've never complained about waiting times, and I've waited a lot lately, because I understand everyone else has needs too, but I waited 1.5 hours today and I was starting to get a bit peeved.  Other patients were making grumbling noises and comparing appointment times, we realised we had 15 minute slots, is that long enough to discuss whats gone on over the last 6-8 weeks? Hmmm, my peeved status was increasing.

Finally they called my name. "Hello" said the Doctor,  "I'm the Consultant's Registrar, sorry she couldn't be here but..." I interrupted him "I've only seen her once and that was back at the beginning, I've seen someone different every time since then, so it doesn't really matter!".  Oh my Lord! Where did that come from? Be nice Alison, be nice.  We sat down and did the usual, how have you been etc, I mentioned my arm and said it was Herceptin side effects, the Registrar said that was unlikely, it was probably the Hormone Therapy. Uh oh!  Red flag to a bull, off I went "I disagree with you there" I told the Oncology Registrar with his years of training and experience. I went on to emphasise that my symptoms had reduced when I had my treatment delayed last month "which proves it's Herceptin" I said rather determindly.  Mr Registrar quite rightly defended his position by stating the majority of patients find their symptoms are caused by the Hormone Therapy not Herceptin. I interrupted him again "Well the manufacturers and the NHS website and other patients I've spoken with all say the same as me, whereas you Doctors all say its the Hormone Therapy".  Why was I arguing with him? What difference did it make? None! But rationality wasn't going to stop me. "I appreciate that until more research is done on the side effects, you will take that viewpoint". I stared him out, not for long because my motor mouth was off again "Besides if it the Hormone Therapy, that means I will have these symptoms for the next four and a half years and I'm not prepared to accept that!".  There! Take that! I'm done! Ha! You and all the others trying to tell me what's going on in my body!  Now, there is a possibility here that I was in a bit of a bad mood, a bit of the grumps had set in,  but did I care? Nope!  Mr Registrar took a deep breath and very calmly, as he probably wanted to either slap me or walk off, explained "In the medical profession we say, Never Say Never, there are Idiosyncratic symptoms which are particular to individuals".  Hmmm, not sure if he was agreeing with me or placating me. "If it is Herceptin, then you will be very lucky because your symptoms will stop when Herceptin finishes rather than lasting for four more years".  My mind was going "No no no, don't believe you", thankfully my mouth decided to stay closed.  I'd been very grumpy and had argued with this man for no real reason other than he was in front of me.  He changed subject to other test results and stuff, I just nodded appropriately. Time to leave. We stood up and shook hands. "Can you tell I'm feeling a bit fed up?" I asked him.  Not sure why, but he didn't respond just did a sort of half smile.  As I walked out of the room I'm sure I heard him bang his head against the wall while muttering..why me?  Poor man, I wasn't the kind of patient you want at 5.30pm on a Friday afternoon! 

As I headed towards the lift, guilt swept over me. Why had I given him so much grief? I had achieved nothing. Oh to hell with it, Grumpy 'R' Us today. Deal with it World, being nice is overated!

Super Heroes and Davids

I have only three more Herceptin injections to go, the end is in sight. I cannot wait to be rid of the side effects, after 9 months it is wearing me down a bit. I'm focusing on September, that's when they stop.  I do have to temper my moaning with what the treatment is actually doing, it's fixing me!  Thanks to the NHS.

The super heroes of the NHS just make it happen.  Those heroes manage to take our sick and broken bodies and with a slice and a dice, or a pill and a potion, they reset us back on track to recovery.  Sometimes that recovery is just about giving us extra time to spend with loved ones, sometimes the recovery invokes a brand new lease of life, other times its simply the cessation of pain, or it can be long and slow and involve discomfort and pain before real benefit can be felt.  All of the above situations have happened to my friends and family during the past couple of weeks.  These situations are not unusual and will be happening to people you know too, week in week out, throughout the country. 

There have been a couple of personal heroes in my life recently, both called David!  One donated his kidney to his wife, just wow!!  There are no superlatives to express that!  The other David, in a much more mundane situation, found me looking utterly despondent and forelorn as I had left my car keys in my desk three floors up. It was the end of the day and I didn't have any umph left, so he offered to get my keys for me. It was the end of his day too and a trip up three flights of stairs was probably the last thing he needed, but I was so so grateful.

Big thanks then to the NHS heroes and the everyday heroes in our lives.

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!!

Worrying

From 7/2/16

Whilst with the Oncologist last week, we talked about the stiffness and pains in my joints which is either caused by the Herceptin injections (10 left) or by the Arimidex (tablets for 5 years), she said it should start to calm down a bit soon, so I'm hopeful about that. She also said that the Yoga I'm trying hard to do each day (but failing) is very good as it helps to keep the joints mobilised. I must try harder. I'm kind of used to hobbling out of bed in the mornings until everything warms up a bit!! Next the Oncologist mentioned I needed to have a blood test done, this was to search for markers, which will show if there has been any recurrence of cancer. I had a strange reaction to this. I felt back in Cancer Land again rather than being in Almost Normal Land, where I have been residing since Radiotherapy finished. I prefer not to know what they are testing for, but at the same time I really really want to know that the result is nice and clear. But we can't have it both ways can we?!! I guess there will be plenty of these tests to come and that's a really good thing, but I will need to deal with the worry factor, the "what if". A friend has just been through the awful wait for results after a biopsy, it has to be the longest wait in the world. Your brain goes all kinds of places. Why do we do that? Why do we worry so? Back when I was waiting for the results of my diagnosis I was actually relieved when they told me what I had, yes relieved! Because I knew we could crack on and fix me. The wait for results has you in a limbo land of nothingness. I'm not sure that I want to spend my time worrying about results so I'm going to decide not to, what will be will be, I'm going to crack on with cracking on!

Hair Growth

From 24/1/16  -    Hair Growth

7 Jan 2016 - 11 weeks after last chemo

15 Jan 2016 - 12 weeks after last chemo

24 Jan 2016 - 3 months after last chemo

Fingernails and Smelly Stuff

I have always hated seeing people bite their nails or seeing the bitten sore nubs at the end of their fingers. But now my fingernails resemble those of a habitual biter. Oh the shame!!! It is an unfortunate side effect from Chemo. Because the chemicals kill fast living cells, fingernails start to get affected once the dead part of the nail starts to grow up to the top. Ridges develop in rows, which are 3 weeks apart! Each ridge shows when the Chemo was delivered. It's a bit like rings in a tree, but just not as eco friendly! Then the top part just starts to come away from the nail bed, it doesn't hurt as it's all dead. But it means I have no nails. No nails!!!! I've always had nails. What I don't get about nail biters is how do they cope? I can't cope! How do nail biters scratch that irritating itch? Find the end of sellotape? Pick up small things? Open an envelope? Squeeze a spot? Pick their nose? Open a pull ring can? Pick off a label? I am rather missing my nails.

On the positive side of things, I have finished Radiotherapy. It took 5 weeks because of booster sessions and the Christmas and New Year holidays. But all done now. I was looking forward to not having to use only Simple Soap but evidently the treatment continues to work for two weeks after the last one, so no lusciously scented body wash just quite yet. As my daughter said, I will smell of nothing for a bit longer! I have got some creams to apply for a sore bit and just found the containers they came in rather amusing!! A friend mentioned they may take some explaining in a drugs raid!!!

Be careful what you wish for....

Tomorrow is two thousand and sixteen
Changes are ahead of which I'm very keen
My body is becoming chemical free
Which means a more normal furry me
Oh yes, my hair is slowly returning!
It's a state I have been yearning
I've now got tiny little eye lashes
My brows are rows of dots and dashes
Once naked nostrils are no longer bare
The covering on my head is soft and fair
Actually it's soft and grey
But grey is cool now so they say
The colour doesn't matter to me
I just look forward to being wig free
It's not yet quite long enough
For my head to be in the buff
So slowly grows all the hair I want to see
Speed up please I'm impatient me
For the place that is growing so very fast
Is not on my head or lashes, they are last
It is my legs, yes my legs have lots of hair
It's some kind of retribution I could swear!

HAPPY NEW YEAR!! xx

Merry Christmas

I posted this on Facebook, but forgot to put it on here, so belatedly....

So here it is, Merry Christmas, everybody's having fun, look to the future now, it's only just begun.....I never thought I'd quote Slade, but it seems apt!

A big soppy thank you to everyone that reads my musings, for your support and love. I've had a few down days along the way and your friendship has brought me back up again.

Special festive loves to a couple of strong fabulous women, Juliet Still who is a 4 year survivor and Karen Jones who jogged along the same path as me. Ladies, without your friendship, advice and giggles, things would have been so much tougher. The future awaits us with boobs of all shapes and sizes!!

Merry Christmas Everyone xx

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.

Stirrups - Yee Ha!

It's been 6 weeks since my final Chemo and 3 weeks since having a Herceptin injection on its own for the first time. Did anything happen to me after my jab? Sure did! After I got home my feet blew up like balloons!!! I did the right thing and elevated them and slept with them on pillows and then just hoped it would go away. Which if course it did not. Phone call to the hospital and the Doc assures me that it is not Herceptin but the Chemo which has caused it. Three weeks on and my feet are still swelling up whenever I sit down. Walking and lying down are fine! I can also produce a rather lovely “cankle” look when my ankles decide to join in the swelling! Will see what they say on the ward next week when I have my next Herceptin jab. Just to moan a bit more, I have joint pain and stiffness too at times and it can be extremely difficult to get out of a chair if I’ve been in it for a while. I'm assured this will start to ease. But if you were to see me without my wig on and just my fuzzy bit of grey hair fluff, I seriously look like a 90 year man slowly creaking out of a chair!!! Yes man, not woman!! My hair is growing in a weird baby fine fuzz, male pattern baldness kind of way, also my nails look like they may be falling off soon, the joy of after-effects of Chemo!! Meanwhile I have been for another Echocardiogram, it was disappointingly ordinary, even the chap doing it was gentle and not like Cruella who attacked my ribs last time! More excitingly I have been for the set up appointment for my Radiotherapy treatment. Lee and I met a lovely lady in the waiting room who was unfortunately metastatic (got secondaries), but she was a joy to talk to. Lee was nattering away to her, while I got changed into the hospital blue gown, which had velcro all over the place and once on, couldn't quite contain my boobs, which I feared would break open the velcro at any point! I sat back down next to Lee rather gingerly for fear of exposing the Mitchell Brothers to our lovely lady, not the done thing really. They called me in and asked me to lie down on the scanning bed. 

There are attachments on there which look like stirrups, ladies you'll know what I mean (not the horsey type), but they are above where my head will go! Oh no, I can feel an inappropriate comment just waiting to escape from my mouth, regarding getting my ankles over my head, but thankfully I managed to refrain. Turns out the stirrups are for my arms so they are out of the way when the x-ray beams start to hit my boob. The very handsome young male radiographer tells me he is going to place my arms in the stirrups, then he takes hold of my sexy blue gown and rips open the velcro on my shoulders, takes my arms and places them above my head then rips open the front of my gown exposing my bosom. All I can say is I'm glad it was a very cold room!! He was a very nice young man!!! Ha ha!! His female colleague then set about my boobs with a marker pen, I think they wrote “stupid old trout” on my left one, but it was upside down so I couldn't really tell. I was slid in and out of the machine a few times and zapped at some point. When the lovely young man re-appeared he asked if I had any questions so I asked about my heart, as my Oncologist had said the Radiographers need to ensure they don't zap my heart, now my lump had been directly above my heart so…? He reassured me that the direction of the beam comes in at an angle and so misses my heart, it will catch a couple of my ribs and a bit of my lungs but that's all. Great, I think?!!! Now it was time to get tattooed. Oh yes, all ladies in the BC club get three free tattoos when undergoing radiotherapy. One in the centre of your chest and one down each side, so they can line you up to the machinery correctly. I steadied myself for this, as I have got “ink” already so I knew about the pain, but it was just one quick scratch at each site, nowhere near as bad as other stuff I've had done over the past six months!! It's just a boring black dot, a bit like the schoolboy thing on a knuckle. It's not big enough to even turn it into a flower!! That was it, all set up and done. They just needed to give me my start date, which is 8th Dec, which means I will be having Radiotherapy all over Christmas! Ding dong merrily on high!!! But yet again how can I complain? It's a tiny inconvenience compared to what it is doing for me. As I walked out of the room, they told me I can keep my sexy blue gown for the duration. How lucky am I? Now why has that young man run away?????

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.

Brows Lashes Make Up

My new make up has arrived to create an illusion of eyebrows and eyelashes. Not sure how long it's going take before they start to grow back, so I need to learn how to make myself look a little less Uncle Fester like!! I have had a lesson from a MAC consultant so I reckon I have the technique down! It is so seriously difficult sticking eyelashes on without a line of lashes to press against! Got myself an eyelash tweezer holder thing, but still difficult! Lots of practice this weekend.

Chemo photos start to end

First Chemo

2nd Chemo

4th Chemo

6th Chemo (last)

 



 
 






Last Chemo Tomorrow!

My last Chemo is tomorrow!  

What a momentous occasion!  I am so excited, not because any lingering cancer cells will have been killed off by the end of this treatment, nope, I am excited because I won't have to go through side effects again and a bit of normality will return.  Oh my good God what a relief that will be. To counter my unbounding joy at this, I have got a year of Herceptin injections ahead and we don't know yet what the side effects of that will be as the two injections I've had, have been at the same time as Chemo. 

But I am choosing to ignore that, I've decided that it won't affect me at all. So back to the positive stuff.

I can't wait to feel normal again (what is normal? My normal!).  No more feeling yuckety yuck.  Plus plus plus....My hair will start to grow.  I can't wait to have hair again.  I will never diss my thin lacklustre locks again! I want hair!!  Any will do.  It will be whatever colour comes through, mouse with grey I think.  I've not seen my own colour since I was 14 when me and Karen Harris started splashing lightening setting lotion on our heads!  No such thing as home highlight kits then!!  So mouse grey will do.  It may also grow back curly, so grey afro here we come!  They say it may come back thicker which would be amazing, but I'm not greedy, thin and scraggy will do!!!!  Eyelashes too!  I've missed my eyelashes!  How daft is that? When I rub my eyes it just feels wrong.  I miss putting on mascara.  I've got false lashes but it's really hard to put them on without an existing line of lashes to guide you.  My eyebrows were never thick, a youth spent overplucking to blame for that,  but to have a complete line would be lovely.  As for hairy annoying legs, armpits, moustache, chin, nose, lady bits, well you can keep all that! That's been the one and only good thing!!!!  I should have been listing all the yuck stuff that happens and saying I'm so glad this is the last time for all of that, but just take that as read.  I'm just excited about hair!!!  Am I shallow?  I think I must be.  But who cares?!!  Just give me hair!!  My nails are another matter, I think they may take longer.  They are currently starting to show signs of distress and it may take a good few months for it to grow out, so I'm ignoring them for now.

Apart from the shallow stuff above, I also can't wait to go out. Out anywhere!  Because my immune system drops down to nothing on this second drug regime, I took the decision (mine not Docs) not to risk mixing with people and picking up infections.  I have injections for 8 days after the Chemo to help boost my count back up, so why would I want to undo all the good I've done?  So apart from the hospital, I have been nowhere.  After this next lot of side effects are done, in three or four weeks time or so, I'm going shopping!  I'm going to stand in the city centre and see more people than I have done for God knows how long and I'm going out for a meal and I'm going into the office.  Freedom!!!!

Just slowly and gently, I'm not going to go crazy, I need to build my body back up. I feel like a gorilla born in captivity that they slowly reintroduce to the wild!!!

So it's hair, shops, meals, work (yes sadly).

I can not wait.

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

A Welcome Side Effect Would Be....

I've never been a skinny shape
When 7 stone there was no gape
Around my thighs jeans stretched tight
Against the wobble there was always a fight
I yearned to have long lean pins
Managed only half decent short shins
The trauma and worry of a big fat bum
For a seventies teenager was no real fun
Not conforming to a skinny size
My bum and hips I tried to disguise
My one saving grace
Was my tiny young waist
But straight up and down I did not go
Curves in those days a big no no
A tendency to spread was the norm
Child bearing hips always the form
If only Kardashians were popular back then
On the Bo Derek scale I would have been Ten
But that's how it is, just the same for us all
The more we want skinny, the fatter we fall
Age increases size, weight keeps track
But it's not so bad just look at my rack!
My bosom happily detracts the eye
With a whimper and sometimes a sigh
From looking at my rolling spare tyre
I can't deceive, my belt's not a liar
There is no excuse, I'm aware of that
I could eat less, do more and not get fat
But wait what's this? At last there's a chance!
A bad ass illness could just be the lance
To burst fat's hold on my wobbling bits
And lighten the load on my so heavy tits
My boobs big and bouncy have attracted a fight
The way I see it with a glimmer of light
It's bad, mad and wrong to look with such glee
At what side effects might just do for me
But if I go through a real rough time
At least the scales could come under nine?
I really am looking at this in a positive way
Onwards and upwards to a skinnier day.
The treatment is tough and there's no guarantee
I may win, I may lose, we sit wait and see
But my fingers are crossed I might get thin
With everything else surely this I can win?


What? Wait, I'm not sure I hear what you're saying?
I'm going to have to start seriously praying?
No don't bring me down it can't be true
The opposite can happen? Who can I sue?
You're telling me I will soon start to crave
Foods full of comfort, they'll all be my fave
Too tired to chew?
Pop a sweetie or two
No energy to crunch?
Have a soft carb lunch
Tummy won't do digestion?
Sugary drink's a suggestion
Taste buds receded?
Bread freshly so kneaded
A mouth so dry you can't swallow?
Fresh sorbet with ice cream to follow
Those meds and steroids are messing my brain
My reason and logic is starting to drain
They definitely told me some people lose weight
So why is Humpty Dumpty my inevitable fate?

From all the side effects, one may just have been
A nice new look, trim slim and so lean
But it's not going to happen, I will have to agree
Easy popping carbs offer comfort for me
A quick energy fix is first and foremost
So vital to help the counting cells boast
I simply can't worry about things expanding
There's time ahead to be more demanding
Day by day I'll eat what is right for me
And adjust my clothes to easy and free
But honestly, really, why couldn't it be?
That Chemo slimmed down podgy old me?

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!!

Thank you

Just one more Chemo to go
It's made my life a little slow
Apart from those around me
Whose lives whizz by so quickly
They spend their time helping
By washing cooking cleaning
Being a taxi and supporting
Wiping tears and understanding
Injecting, pill counting, supplying drink
Smoothies, fruit teas, ice to clink
How would I get through this
Without a loved one's kiss
I can be strong and determined to win
I can be weak and want to give in
I cry and get so frustrated
Yet always I am surrounded
By those who luckily
Seem to keep on loving me

And distance is no barrier
Hi-tech an instance carrier
A loving word here and there
The years and miles disappear
No one afraid to say hello
It makes my heart all a glow
Please never underestimate
The power and the fate
Of human beings connecting
It truly is amazing
The joy that can be brought
By just a simple quick thought
Never doubt that it's a good thing
To make someone else's heart sing

I'd like to say thank you all
Whether distance big or small
Whether years are many or few
I will always be grateful to you
My journey is not yet complete
But you've made it less of a feat
From people for who it's all a mystery
To those who have a big full history
From people who have a quick read
To those attending my every need
Thank you so much for helping me along
A tough journey but you've made me strong

Thank you.

Regeneration

I have never really thought about how amazing the human body is. I get that pregnancy and childbirth is a miracle, breast feeding too, the fact that your body feeds and makes a baby actually grow! But the fact that our body just cracks on and heals itself is wonderous. That papercut so sore now will be gone in 48 hours. Amazing! My body at the moment is pretty amazing too. It is doing a brilliant job at healing itself. This is why….

My current Chemotherapy regime does this to my body (sorry it's graphic):-

• Reduces membranes in nose resulting in nose bleeds
• Reduces membranes in lungs leading to breathing difficulties 
• Diarrhoea 
• Indigestion and acid reflux
• Total reduction of immune system, called Neutropenia
• Painful nails, may fall off
• Remaining eyelashes and eyebrows disappearing
• Inability to move any part of body at all
• Walking upstairs is like climbing everest
• Complete and total exhaustion 
• Having to be spoon fed
• Symptoms of flu 
• Dry eyes
• Weepy eyes
• Spots where eyelashes were
• Pains in joints and muscles needing powerful painkillers
• Having to self inject for 8 days each time
• Nausea 
• Lips ultra sensitive to heat
• Dry, rough sensitive mouth
• Mouth ulcers
• Dizziness
• No strength
• Headaches

I have pills, potions, remedies and coping strategies for all the above and thank the Lord, they are all temporary and don’t all happen at once. By about day 14 after treatment, they have mostly subsided and my body, incredibly, starts to mend itself. The power of the human body is quite incredible and we don't give it enough credit for what it can do all by itself. Experiencing the stuff above is quite honestly dreadful, horrid, at times unbearable, yet it all stops. My body regenerates. When all this is over I am definitely going to give mine more respect and treat it a little nicer. I am so very very grateful that this is all temporary, I can't begin to understand how those with a chronic illness cope. I am currently in the position of having to poison my body with toxic chemicals on purpose to kill off any lurking cancer cells. It seems so wrong to me now that we poison our bodies quite willingly with tobacco, drugs, alcohol and junk food and dismiss the side effects so lightly. Why don't we care about the damage we are doing? Our poor bodies. Don't think for a moment that I'm going to become a teetotal vegan evangelical nut, oh no, I'm looking forward to a good few glasses of red! But I'm not going to just expect my body to be able to deal with any old crap I throw at it, I need to show it a bit of gratitude. So everything in moderation but a lot more fresh fruit and veg and I might even begin some serious exercise. There, I've said it now, going to have to do it!!!!