nosocomephobia

I've been quiet recently, getting on with my life, working hard in fact.  I've stepped up the teaching hours considerably and getting tired.  However, it's good to meet new people, feel useful and meet people who don't know about my history, like a fresh start.  I'm starting to feel myself and my energy levels are much better, although I do feel more tired much more quickly.  I've sort of got used to the drug side effects, they are part of my life now.  Friends ask me how I am and I say 'fine'.  Which is pretty much true.

However, the past casts its shadow.  I still haven't been to hospital for my MRI regarding my headaches but the headaches have stopped now, although the wooshing sound is ever present.  I can't bring myself to put myself through that horrible test again (it was the one that really freaked me out, sometimes it's better not to know what's in store!).  I still haven't made an appointment to see my oncologist, which I should have done in October (and here's the end of October).  I haven't made an appointment for the pre appointment blood test.  I thought I'd be looking forward to seeing her but I haven't made the appointment.  I have pervaricated and I wasn't sure why but I think I know why deep down.  I am frightened.

 


I am frightened of stepping inside a hospital and smelling the smell, feeling the memories, feeling ill, feeling pain, getting bad news.

I'm frightened that they'll find something bad inside and I'll be back to where I was, or worse.

I'm frightened that I'll have to stop Tamoxifen and take another drug which will have even worse side effects because they'll find from my blood test that I now have the menopause.

I'm frightened of getting those tests and the needles.  See I thought the needle phobia would go away after such an intensive spate of needle-related tests last year, I thought I'd feel better about the needles but I've just gone back to how I was feeling about them before.

I'm frightened of having the 'reconstruction' although I want it but I don't want to go through all the tests, needles, pain and anathesia.  And I'm frightened they'll say no you can't have a reconstruction and I'll be stuck like this forever with my ugly, misshapen, child 'breasts'.

And I'm still angry that my breasts have gone, by the way.  That has not gone away.

I feel like I'm approaching a bad place right now and it may go downhill.  I've started neglecting myself again.  I feel in between a rock and a hard place.

I know the answer - make that appointment, go, face up to whatever there is to face up to.  But I'm frightened.  I know I don't really have nosocomephobia, I've just been through a hard time and want to forget it, but I do know that I can't forget it, it's time to remember, take a deep breath and plunge back into the medical world again.

It felt good to write that down.

Show you care

It's hard being the friend or family of someone who has cancer, is going through treatment, has gone through treatment but still needs support.  It's hard because you want to do something, you don't want to see someone you love going through a hard time and a lot of the time, people just don't know what to do for the best, or what to say.  Often you might feel really helpless, frightened to intrude or scared to do the wrong thing.  Sometimes the person suffering doesn't even know what might help them too.

Everyone is different.  One person's help might be another person's hell and that's why it's hard to judge the situation and nobody wants to intrude.  And that's why some people might just end up doing nothing.

Personally, I think that's the worst thing - nothing.  Believe me, if you do something, no matter what it is, whatever you do will be appreciated.  I felt uncomfortable with those people who did or said nothing, who mentioned cancer not once (even if they knew), who seemed to shy away.  It made me feel that they did not care about me, which might have been totally wrong, but that's what it felt like.

I always felt a bit crap if I knew someone had had a death in the family.  I never knew what to say or how to say it and often said nothing and felt really bad afterwards.  Then, after becoming addicted to NYPD Blue (I have boxed sets), I found a phrase that I could use, the one that the Detective Andy Sipowicz (my favourite character) always used when facing bereaved relatives.  "I'm sorry for your loss".  It's neutral and opens the door if someone wants to talk and at least it shows you know and acknowledge the pain that the bereaved person might be going through.  So I make sure I say something.  All the books I've read on this subject report that saying something is always better than saying nothing.  Finding a good French translation is tricky and I'm not there yet, but I'll find a good French phrase one of these days.

I guess the cancer equivilant phrase might be "I was sorry to hear you were/are ill".  Believe me, this phrase WILL help and make the patient feel ok and be touched by your concern and again it opens the door for them to share more details if they wish, or to not open up but just to have a nice feeling that someone cares.

Now, going on to another way of showing you care - the - as they call it in the US - care package.  A mixture of thoughtful items that show you care and that will be useful or a luxury or just a really nice thing to receive.  Perfect if you are far away from someone.

For my Birthday, I received a big package from my niece in UK which arrived today and I thought, as well as it being a fabulous and thoughtful Birthday present, it would be THE perfect care package.  It contained a few chick lit don't have to concentrate too hard paperbacks, beautiful nail varnish, a cute carrying case and tin of tinted Vaseline, a selection box (I know, Christmas, already?) with sweeties and chocolate bars that reminded me of my childhood, a box with the softest socks in the world, foot cream and foot soak crystals and a lovely, touching letter on pretty paper.  I'm in heaven!  Every single item was thoughtfully selected just for me.  That makes the difference.

Amongst the care boxes that I was lucky enough to receive when I was going through treatment, there were cupcakes, English hard to get food products, loads of stuff from M&S (a rarity), Turkish Delight, walnut whips, loads and loads of paperbacks, smelly stuff for face and body, notepads,  Bio Oil for scarring, facial water spray, chocolates and chocolates and chocolates, newspapers, magazines, shampoo, shower gel, a personalised blanket, little charms, cinema tickets, a voucher for a facial and a silver heart.  And I'm sure I've forgotten something, it was all a bit of a daze to be honest but all was appreciated so very very much.

When my friend went into hospital for her mastectomy I gave her a hospital box containing tissues, trashy magazines, chocolate, lip balm, shower gel miniatures and a facial spritzer.  My reasoning was 1. you're probably going to cry at some point (tissues), 2. you'll have lots of time and not much concentration (magazines) 3. you'll probably have a bad taste in your mouth after the op or after the hospital food (chocolates, mints) 4. it's very dry in a hospital (lip balm and spritzer) 5. hospitals smell horrible (fragrant shower gels).  I think it had some Bio Oil for the scars too, I can't remember but that is a very useful thing.

I'm not saying for a minute that presents make up for other stuff like support, phone calls, texts, letters,  emails, cakes, home baked food, doing the ironing or cleaning for someone, taking them to appointments.  Don't get me wrong, just, if you wanted to send something if you're not able to be there for someone,  there is something you can do to show that you are thinking of them.

Anyway, I hope this post has given you food for thought and helped you do or say something to someone who will really appreciate it.  A little kindness goes a long way, it really does.

And thanks again to my thoughtful niece.  Love you babe!

Happy Cancer-versary to me, one year on

 

So here I am writing this one year ago, the day after the operation that took away the cancer, the day before my Birthday.

How are things one year on?  Well, everything has changed but nothing has changed!  How do I feel?  Well, I feel like I'm getting on with things.  I dare to think of cancer as in the past sometimes.  There are still physical effects, of course.  The scars are still there - thick grey, bumpy lines with pinched skin on the left and are still painful from time to time, especially if I've been wearing the prothesis all day.  And as far as I'm concerned, I don't have breasts any longer and they are just small lumps of fat, non sexual and pretty ugly when all said and done.  I am still working on accepting this.

I told my friend that I wouldn't want large breasts back again because I would have felt that they would be unreal.  What I want is my own beloved  breasts back but I know this is not possible, so maybe something can be done to make my existing chest more pleasant to look at and that would mean I don't have to wear a prothesis.  I have to wait until January to know about that so things stay as they are until then.

There are side effects to the Tamoxifen and the radiation has permanently, it seems made the skin around my 'breasts' and under my arm dark brown.  I am also more tired more quickly, and I forget and overdo it sometimes.  And sometimes, there are bad thoughts in my head.

I still see a psychologist who is helping me get on and make sense of this new world.  I have a few sessions left with the kine which I must get around to doing.

Life is worrying right now as I have headaches and a wooshing sound in my head so I have an MRI on Tuesday (put back, should have been yesterday, long irritating medical story...).  So of course I think 'cancer' but it probably isn't.  That is one thing.  I have to tell all sorts of people about the cancer and of course it informs any medical treatment for anything that I have now.  There will always be the worry that it might come back but I feel the longer I go on, the less intense is that worry, but it's there like a grain of sand rubbing away in an oyster.

I worked today and didn't have too much time to think about what I was doing this time last year (well, what the surgeon was doing to me for 5 and a half hours that is).  Then home to do homework with the kids and running around to get more Tamoxifen and Vitamin D from the chemists.  It was then that I stopped to think and cried because of a tiny kind gesture from the chemist - she saw on my medical card that it was my Birthday tomorrow and gave me a pot of face cream as a gift.  I was so touched I could barely get outside to my bike before I started crying.

I guess that sums things up really.  I have terrible terrible memories of that day, that operation and I revisit them seldom.  This photo takes me back but the memories are all there locked up in my head.  I got home tonight and let myself sob and let the memories come back.  My elder son was there and hugged me hard.  Thank god for my boys and my dh, they have made me want to get through this, they are my reason for living.

The good thing, though, that stays with me like a rosy glow is the kindness shown to me during before and after.  This has not faltered, the kindness still goes on and the special friends and my sister who looked after me, well, they are still supporting and loving, looking out for me and helping me along.  I hope I have something to give back now, but it has certainly changed my perception of friendship and love and what to appreciate in life.

I remember St L who made my horrible Birthday as good as it could be - blowdried my hair in hospital, made me this cake, brought some Orangina, the Union Jack cups, the balloons on the hospital room door.  What a star.  That was one of many many kindnesses that will stay with me.

I asked the Listening Brunette what to do about this bitter sweet anniversary.  She said 'faire la fete'!  So that's what I'll be doing tomorrow night.

And the main thing is that I have survived one year.  I'm still here.  If I hadn't found the cancer when I did, this post would be very different indeed.

I am alive!

Goodbye Eric

Eric taught my children to swim in bebe nageur classes.  He was a handsome, charming, cheerful guy, good fun to be with, you can see it in his twinkling eyes can't you?  I can still picture him in his wetsuit standing on the diving board directing, teaching, laughing, encouraging, loving the kids and their mad ways - all of them.  All the Mums swooned over him, queuing up to give 'bisous' to him.

I say 'was' because he died in the night of 3rd and 4th of September.

A few years ago he found out he had a brain tumor and suddenly his life took a terrible turnaround and his coaching and sporting activity came to an abrupt halt.  He had been in a wheelchair for a long time, having difficulties speaking.  His loving wife wheeled him to all the swimming galas (home and away), some of the training sessions and all the social events in the swimming club.  He got lots of kisses from the children, who all adored him and when I spoke to him he always remembered which class mine were in and who was their trainer.  His life was the pool.  It must have been devastating not to be able to continue his very active, sporting life.

He was 42 years old and leaves a wife and young children.

Fucking cancer.  This guy was a really great person, the sort of person that makes the world a good place to be.  It's wrong that he's gone.  Fucking cancer.

So here come the side effects...

I've been taking Tamoxifen for 8 months now.  So far, so, well, okay really.  Weight gain (well, can't lose weight despite eating a lot less and much better and exercising) - check!  No periods - check.  Nasty taste in mouth all the time - check.  Mood swings - check.  Tiredness - check.  Thinning hair - check, flaking nails - check, leg cramps - check.  I always considered that it could be worse - I might have cancer again, or other more serious side effects or other nastier treatments.

Well, maybe that day has come.  I've been having terrible headaches recently, almost like people describe migranes - seeing stars, having to lie in a dark room etc.  I also have a sort of wooshing sound in time to my pulse in my head all the time.  This has been for about 4 weeks new.  And I've been really really tired.

It does say on the instructions for Tamoxifen that headaches are a side effect, but a less typical one.


So, finally I went to the doctor to get checked out.  It was his young, cute locum, who was very thorough (except for the moment when he put his stethoscope on the side of my chest looking for a beat and I didn't have the heart to tell him he was listening to my prothesis).

It seems there is no neurological problem, however, to be sure I have to have an MRI and a blood test beforehand to check that the cancer has not metastied in my head or that I don't have a blockage somewhere.  Either of those scenarios sound horrendous so I'm pretty scared for 24th, hoping I don't have bad news, that would be such a killer exactly one year after my operation.

At least they are checking up on me and taking me seriously.

Cross your fingers for me on 24th.  I hate MRI's by the way, I find them very upsetting, sigh.

Cancerversary

It's around a year, give or take a few days, that I found out I had breast cancer.  I don't want to know the exact day (although I could easily find it out by looking back at my blog) because it's not a day I'd like to celebrate like a Birthday or a wedding anniversary or a house purchase or the birth of a baby - a happy thing.  I don't want to know because I don't want that day spoilt for the rest of my life, I want to live it free from cancer thoughts and bad bad memories.  That's not to say that I won't remember the day.  As Kerri says in her excellent blog 'Cancer is not a Gift', it's a day she remembers because it's a day she can't forget.  I feel the same way but I know that time will heal.

http://www.chicagonow.com/cancer-is-not-a-gift/2014/08/cancerversary-i-remember-because-i-cant-forget/

Memories are hardest when they're painful.  Some of my dearest and oldest friends lost a parent during the last 12 months.  I wonder how they will cope with the anniversary of their loved one's death.  For me, that's much harder to cope with than my cancerversary.  I'm still alive and with my loved ones.  They aren't in that position.  With my friends, we talked about the 100 days of grief and how it's a sort of turning point in the grief process for many people.  This originates from the Buddhist religion when at 100 days after a death, a memorial service is held.

This memorial service is known as “Tamboon Roy Wan”. The purpose of this 100 Day Ceremony is to gain merit for the departed Spirit and to help shorten the time spent by the Spirit in any of the Buddhist realms in which that Spirit may find itself.

100 days also seems to have some significance to cancer.  I found this article http://www.ncbi.n

The existential plight in cancer: significance of the first 100 days.

Weisman AD, Worden JW.

Abstract

"The Existential Plight in cancer is a poorly recognized but significant period. It starts with the definite diagnosis and continues for two to three months into the illness, approximately 100 days. The chief signs are the predominance of life/death concerns, e-en over worries about health or physical symptoms. One hundred and twenty newly diagnosed cancer patients were interviewed, tested, and followed from about ten days after diagnosis at four to six week intervals until three to four months had elapsed. Plight was analyzed from the viewpoint of coping strategies, resolution of problems, vulnerability, total mood disturbance, and predominant concerns. Patients who had higher emotional distress during this period had many regrets about the past, were pessimistic, came from a multiproblem family, and had marital problems. The widowed or divorced had higher vulnerability, as did patients who anticipated little or no support from significant others. Although vulnerability increased with advanced staging and many symptoms, at the time of diagnosis psychosocial distress crossed diagnostic and prognostic boundaries, enabling investigation to predict within limits those patients who will cope effectively or fail to cope with cancer and its ramifications."

Basically, the way you'll cope with a cancer diagnosis can be already predicted by your previous experiences and family situation if the health professionals take note.  Seems obvious I guess, but it could be an indicator as to which patients particularly need support.

The first 100 days of a first term presidency are also used as an indicator as to how successful and popular he or she will be.  Franklin D Roosevelt pushed through a bunch of bills in the first 100 days of his presidency.  Some people also have first 100 days celebrations when their new baby reaches this mark.

Anyway, back to the 12 month thing, I have been feeling uncomfortable about this cancerversary and will be glad when August is finished and September begins.  However, the one anniversary that I am not looking forward to is, sadly, my Birthday.  My operation was on the day before my Birthday and I spent my day in hospital practically unable to walk and in pain.  Nobody has died, I know, but it's still a day I'm dreading and unfortunately, a day I've been celebrating for 51 years now, so it'll be hard to forget.

Why Some People Change and Some Stay the Same

I've been getting regular mails from MindBodyGreen on health topics for a few months now.  They are always useful, interesting and give food for thought or encouragement (as well as lots of healthy recipes).

This one rang a bell; it's a story about a woman who had breast cancer at 25yrs old and afterwards changed her life.  I'm not into the whole 'life changing thing because I've been ill', but change has come, I admit; my attitude towards life has changed somewhat, not sweating the small stuff, taking more care of myself, eating better, doing exercise and generally a more pragmatic attitude.

So here's the article:-

http://www.mindbodygreen.com/0-14938/why-some-people-change-their-lives-but-others-stay-stuck.html