Monday, 21 December 2015

Five years and counting

It was on this date five years ago that I'd just had my first dose of chemo for lung cancer and with Christmas just round the corner, I was beginning to feel the effects. I remember sleeping for hours in the chair, dipping in and out of the many films that were showing on the TV as I entered that strange twilight world of cancer treatment. It had snowed heavily two days previously, when I'd spent the day in the chemo suite.  Winter was throwing everything it could at me. 

And yet here I am five years on - grateful to the NHS, the physician, the oncologist, the surgeon -  alive, well, looking forward to another fabulous time with my family. Who'd have thought it possible? 

Merry Christmas everyone!

Friday, 6 November 2015

Five years and counting

Well, I've made it.  I've arrived at the five year point since diagnosis of lung cancer.  This is unusual and my consultant confirmed that fact today when the word "cure" actually passed his lips.  I am unusual, not least because I had chemo before surgery, but also because the odds of surviving lung cancer for long are horrendously low.

Instead of casting me out into big wide world, he's asked to see me again in six months - because I am an odd case. He originally told me that after five years I'd be in the clear.  I sort of think he didn't really believe I'd get to this point.  But now I have he wants to keep tabs on me.  And while I get very anxious every time I see him, there is something very reassuring to be told that all is well.

He's asked me to talk to a supporters' group which he's going to set up comprising lung cancer and mesothelioma patients and I've agreed.  I warned him that I will wax lyrical about diet and lifestyle, but he has no objection to that.  As he put it jokingly, it's pay back time.  And actually he's right.  I do find myself being approach several times a month either by people who have been recently diagnosed with cancer or whose relatives or friends have.  I do what I can to share the knowledge that I have gained. 

I've been told by many people I should write a book,  but the shelves are full of books by inspirational cancer survivors and I don't really want to go back to the place I inhabited for so long during treatment.  This way, I can help without getting too heavily involved and it won't allow cancer to define my life.

Some will be shocked to know that I celebrated tonight with a good meal, a large glass of red wine and - horror of horror - icecream and chocolate sauce with sugar in it!  Well, just once in a while I'm sure it won't do too much harm. 

I shall sleep well tonight.  Goodnight all.

Tuesday, 27 October 2015

Hair today, gone tomorrow

This is a interesting observation which may assist others who face the chemo regime where they won't lose all their hair, but it will just thin, as happened to me. I'll stick some tags on the post in the hope that it will be found by those who seek such information.

Back in the summer of 2011 when I was receiving chemotherapy treatment for lung cancer my hair thinned in that a lot of it fell out at the same time. I'd been warned this would happen but told I wouldn't go completely bald.  As it was I don't think most people noticed any change.

It began to grow immediately, while I was still having chemo, and I faced quite a marked period of whispy bits sticking out amongst the long tresses and a distinct second layer which could be seen clearly as it lengthened.  It's all more or less the same length now.

What I've noticed in the past couple of months is that a lot is falling out again at the same time, leaving it quite thin again.  I can only conclude that all the hair that started growing after the first falling out, has now reached the end of its natural life and stopped growing.  Yes, I can see small whispy bits of new growth as before so it will all come back.  I just find the whole thing fascinating and felt I should note it for posterity, if nothing else.

I still have that chemo curl by the way because the hair that didn't fall out during chemo is still believe it or not mainly in place. That leads me to conclude that the new hair has had a shorter life than the old hair which is still there and falls out on average every five years.  This new stuff has only managed four, but given the state of my body when it started out I guess that's not surprising.

Oh one more thing, another check-up is looming at the start of next month.  I have no reason to think that anything suspicious will be found and I'm looking forward to saying a fond farewell to the consultant.

Wednesday, 15 July 2015

Time for a curl

Yes, I know, it's been ages since I've written and that's been because my days have been filled with the work involved in the disposal of someone else's possessions.  My mother died in the middle of April after a sudden decline and it has fallen on me to sort out everything.  It's been a full time job and sometimes I didn't think I'd ever see the light through the forest of unending forms and the thick undergrowth of legalities.  But now it's nearly all done and there's time to think of other things.

Strangely enough, the one thing that I'm thinking about is that after all these years, after a teenhood sleeping in those plastic and foam rollers, after a really bad perm in teh 80s the result of which I absolutely hated, and long after I'd ever given up any hope of ever having so much as a bend in my hair that was all my own - I now have one!  Yup, it's true.

It's very odd, but even one of my daughters remarked on it the other day: mum you have a curl in your hair.   At the very end there's a lovely little turn and just the hint of a wave. Being me I have to know why and I think the explanation is in the chemo hair phenomenon.

The end of my long hair has now been trimmed to just about where the chemo first occurred. You'll remember I'm sure that I can see the bands of six chemo treatments on every strand of my hair.  Well it looks as if where the damage occurred I have a nice little wave. Out of all the side effects that was one I hadn't bargained on - but it's so nice.  I keep looking at the turn in the mirror and feeling a strong sense of satisfaction that I can go out in the rain and the kink will still be there, only more so. 

Friday, 15 May 2015

Another all clear

I'll make this quick.  Such a busy time, so much to do.  I popped along to the local hospital yesterday, had an x-ray and a few minutes with a consultant's side-kick.  All clear again.  But he (at odds with what his boss had specified)  still didn't want to put me on yearly check-ups, and instead said I could go along again in another six months. That's fine with me because although I do get horrendously nervous, it's better to  know and feel elated, as I now do.

Thursday, 7 May 2015

All clear

An auspicious day, no, not the general election, but my follow up appointment for the breast op.  I arrived early as I normally do, and amazingly was called almost immediately.  I saw a "member of the team" who assured me all was well.

It was at this point I found out that I no longer have any milk ducts under my right nipple.  I also found out that the increasingly inverted nipple is a side effect.  Now, I think it's a bit late to start telling someone the side effects of surgery eight weeks afterwards.  Another piece of interesting information I derived from the staff member was that smokers or ex smokers are more likely suffer from nipple discharge. That's fascinating. 

So my campaign to get the information from the Breast Unit sorted so that patients are informed continues.  In theory there is a meeting pending with Head of Cancer Services at the local hospital and a member of the breast team.  I'm waiting for a date. .......

Now there's just the lung checkup next week and my life should be blissfully free from any more NHS appointments for at least a year ......................... fingers crossed, eh?

Wednesday, 29 April 2015

Standby NatWest to repel business

My mother died last week at the ripe age of 91.  At the end it was a blessing that she passed from this life very peacefully with nothing more troubling than a failure to get comfortable in her bed.

I am setting about the procedure known as probate so I need to open a bank account in the name of my late mother's estate.  Well, my husband and I have a joint account with NatWest in the nearby town so it seemed the obvious thing to me that I would ring the branch, fix an appointment and then open the account.

Ah, but how to call the branch?  Ring the only number available an 0345 one.  Straight through to the automatic voice who wanted to know my account number.  Now, given that I wanted to open a new account and not talk about the existing one I resisted the voice's repeated demands to input my account number.  Instead I hung on and yes, I was rewarded by a message to say I would be put through to a real person. After a small wait the call was answered by a gentleman whose first words were so garbled as to be almost incomprehensible. I told him I wanted to fix an appointment with my local branch.  He responded by asking for my account number.  I repeated that I wanted to talk to my local branch. He lied to me that they didn't have a direct line.  Come on guy, who are you trying to fool?  I refused point blank to give him my account number because I didn't have it with me.  He took my name and started to look up my account number.  I repeated that I just wanted to be put through to the local branch for which I'd repeatedly given him the name.  He refused.  I told him I was wasting my time and rang off.

OK, maybe I was being awkward but hey, who's the customer here?  Who is the bank supposed to serve? And to be honest it was only my bloodymindedness that made my hang on repeatedly while being told to put in my account number that got me to speak to a real person.

NatWest - and I do hope you're reading this - if you want customers, you have to make it easy and you have to get yourselves into the mindset of your customers. Which means the first message on your 0345 facility should be "If you are phoning to open a new account press ......"  And for existing customers, if they want to talk to their local branch, you should let them.  Local banking? - my foot!

Monday, 23 March 2015

2, 4 - no six - or 8

It was precisely a week since I had my sub-areolar ductal tissue excision and the phone rang with a follow-up appointment.  No, not two weeks as the leaflet I was given at discharge says, No, not the four weeks that the surgeon quotes.  No, a whopping eight weeks of waiting.

I'm thinking that if anything untoward had been found they would have told me and that's why the eight weeks is nothing to worry about.  Ah, but then what if there are incredibly busy .....?

Poor old NHS - you are so awfully bad at looking after the emotional health of your patients.  Why do you not realise and why don't you do something about it?

Tuesday, 17 March 2015

Done and dusted

Friday 13th turned out OK.  I duly turned up late morning at the treatment centre, was admitted and eventually got to talk to the surgeon. She explained what she was going to do, that I wasn't going to lose sensation, that to all intents and purposes my nipple would look exactly the same afterwards.  In fact, talking to her I felt much less worried than I had been for the weeks leading up to this. Why on earth don't they give you the information to start with?

Coming round after the general anaesthetic I felt fine, no in pain at all, just a little discomfort.  I was transferred back to the ward: then obs, cup of tea and a rather insipid cheese and tomato sandwich.  Having been there a couple of hours or so I got fed up with being on a bed and not being able to bend my legs.  I was wearing those tight socks they give you to mitigate the chances of deep vein thrombosis but quite obviously to me, as I was on the verge of  cramp, I needed to get my legs moving. So I got out and sat on the chair.  After all, one of the leaflets I'd been given said that I'd have to do things for myself when on the ward, like going to the loo, etc. 

"You can get dressed now," said the nurse when she eventually got  back to me. 
"Don't you need to do obs first?" I asked. 
"No, you had those done when you went to the toilet." 
"I haven't been to the toilet," said I.
"But you're sitting in the chair."
"Yes, I got very uncomfortable and was about to get cramp on that bed."
"You shouldn't have got out without asking, that's what the bell's for."

It was only then, as she picked up my notes from the table, that I noticed concealed beneath them a large yellow notice telling me not to get out of bed until I'd been given permission!

Performing the discharge procedure and handing me a leaflet, the nurse then proceeded to give me a list of instructions while I tried desperately to make notes with pen and paper.
"Don't worry, it's all in the leaflet," she said.
It not all of it was. No surprises there of course. In fact the leaflet, nearly a year out-of-date, was the one that I should have been given right at the start as it referred to the sequence of events starting with the initial consultation. 

You have to love the NHS because it manages to do the job -  just.  What it seems to be hopeless at is effective communication. Time and time again I've uncover inadequacies, inaccuracies, inconsistencies and muddled information in NHS leaflets.

So what now? -  I expect you're asking.  Well, I have to wait about four weeks for the lab results of the tissue removed, that's according to the surgeon, or two weeks according to the leaflet!

Friday, 6 March 2015

Missing info

I waited about a week before chasing up the breast clinic because when I looked at the information I'd been given to bring home, I realised that - while I had loads of general information about day surgery procedures - I did not have so much as the name of the operation I am facing.  The appointment came by phone after about a week of no communication. It's Friday 13th - which doesn't worry me at all.  What does concern me is that even when I received the confirmation letter for the appointment it said no more than "breast surgery".

Eventually a copy letter from the consultant to my GP arrived. Now I'm not sure who I actually saw for the assessment, as someone else has signed the letter. It is broadly accurate.  What I don't understand is why when consultants write these letters they always contain a general health narrative, telling the GP things which are never quite correct but which -  in any case - the GP should know very well.  Most of the letter is a waste of time!

But at least I now have the name of what I'm facing. I am having a sub-areola ductal tissue excision.What I'd Googled was the right thing and online I was able to find answers to all the questions which I was not invited to ask at the hospital.  I am actually wondering if they will ever give me the opportunity.

There is clearly something missing in terms of information for women like me, who are inevitably worried they might have breast cancer. Have they forgotten to give me the info sheet? Other hospitals have them. I've found them online.

I feel a letter of helpful suggestions coming on - but I'll wait until after the procedure I think in case there's anything more to add to the catalogue of missing information.

Wednesday, 18 February 2015

Off I go again

Last October I had a bit of breast discomfort which soon abated.  I was slightly concerned but then a mammogram appointment landed on the doormat.  So off I went and had my tits duly squeezed between the X-ray machine plates.  Back came the letter saying everything was OK.  Given that I flagged up some previous tenderness, the breast screening nurse said to keep an eye on my boobs. Quite difficult really - it's a touch thing, isn't it girls?

Anyway while checking them I discovered some clear liquid from one nipple and you could feel the milk duct was slightly more apparent.  I thought it would go away, but these things nag at you - especially when you've had the escape that I have. So off to the GP last week ....

From there it's been a rollercoaster with an appointment in just over a week's time at the Breast Clinic and that was where I've been today.  The consultant squeezed the nipple, said he didn't like clear liquid and hence he would like to do surgery and remove the offending milk duct.  Just the fact that something is going on there at my age (65) seemed to give him grounds for concern. It's a day case but needs a "general" and subseqently all that sitting around being post-operative I guess.

It's a bit of a blow I have to admit, and I had a little cry when I got to the pre-op assessment at Outpatients.   Not something I would normally do, but I had rather been taken by surprise by the outcome.  Somehow I'd (rather stupidly) thought I'd be teflon-coated from now on.  But let's face it, even the best non-stick surface ultimately fails!! LOL

Friday, 2 January 2015

A new year, a new perspective, a new vision - not really

Here I am in 2015 - a year which for just a few months, I didn't expect to see.  I still haven't worked out why I was saved, I still haven't come up with a grand plan for living the rest of my life.  I have cheated over Christmas on diet - but I am still resolved that healthy living is the key to existence.

I'm definitely happier and most alive when doing positive things. Spending time picking holes in planning applications has to be done, but I can feel the stress build when I have to do it.  So far we have managed to keep the hopeful neighbours' ridiculous eco house at bay but they just keep trying.  I am now convinced that I am the only person who really understands the planning history and where we now are with the whole thing - but even that's a challenge and I've had to write it all down so that I don't lose the plot.

My health is good. I do eat well and in the main I avoid processed foods altogether and I ingest things which I know are beneficial.  The most interesting of these recently is the vitamin D which I've obviously been deficient in for many years.  What amazes me - and I apoligise if I've said this before, and often - is how one can be deficient in something for so long and get away with it.  The body - in fact all of nature - is so very clever at making do.  I believe that cancer only finds us when the imbalance is such that the body can no longer "making do".  The research publicised today on that subject claims that cancer is a matter of chance and random mutations.  I reckon there is a lot of luck, but I really cannot believe that you can't influence your chances of either getting it or recovering from it by doing what it is that puts your body into perfect order.

So how will I approach 2015?  Well I'm going to carry on doing what I'm doing as it seems to be working. And having said that, I wish you all a positive and happy year, filled with good vibes and love.