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!!!