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.

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!

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

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!!

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.