5 months on

It's been 5 months today since I was operated on, 6 months since I found out I had cancer.

How are things going is the question my friends ask.  Well, here goes:

Physical
My scars are beginning to flatten out and are softer and apparently less livid.  The area around the scars is still mostly numb and my breasts are both lumpy, which gives me no end of sleepless nights.  My scars are still sore and sensitive - it hurts to wear my 'bra' things too long so I tend not to wear the prothesis unless I'm going out and seeing people or working.  The left hand scars are puckered where the radiotherapy has shrunk the breast and it's sore when I stretch.

My left armpit and around is still very dark over quite a large area going down my side and under my arm, so it looks like that'll be permanent.  The underarm hair has not grown back under that armpit.

I almost have full, non painful movement in my left arm thanks to the careful administrations by the physio.  There is still some 'pulling' in my arm muscles near the elbow but I can do most movements without being frightened it will hurt.

My body is pretty much the same size as it was before although I started some exercise 3 weeks ago gently on the wii fit for 40 mins, so that is strenghtening my legs and hopefully will help my muffin top eventually.  I don't feel confident enough to exercise in public.  I went swimming a couple of weeks ago and that was fairly awful with my body shape, I didn't want to get out of the water.

Sleeping - since I've been taking Tamoxifen -  is very difficult - I get about one night in 4 where I sleep right through and feel rested afterwards.  The rest of the time I wake up constantly as the sleep seems much lighter so dh's snoring is all the more likely to wake me despite the earplugs.  Today is one of those days after a terrible night of waking up every hour.  I feel like I used to when I had been up all night with a crying baby.

Tiredness - I am so much more tired, I definitely feel old.

I also have frequent night sweats which are very unpleasant and I feel very thirsty after them and usually have to change my nightwear in the middle of the night as it's soaked.

I also have much more frequent nightmares, usually about dying or something happening to my family.

Periods - I have had a rejuvination of my periods - they have been every 28 days since I started Tamoxifen and are painful.  Before they were lighter and about every 3 months.

What changes have I made to my life? 
Well, change is difficult isn't it, long-lasting change in any case, so go easy on me when you find out I haven't converted to vegetarianism or lost 3 stone or found God.

- I choose green tea over coffee and tea at home - I haven't given them up but I don't fancy them so much.
- I do a lot more home cooking using a lot more vegetables and I plan a bit more in advance.  My kids are eating a lot more veg.
- We eat fresh tomatoes and onions every day
- we eat very little canned food
- We don't drink so much alcohol (that's dh and I, not the kids), we tend to save it for weekends or going out
- I have started exercising every other day, in a gentle way at home
- We eat more fruit than before
- I have slightly changed my wardrobe (not too much money to do that though)
- I work less
- I think I stick up for myself a bit more
- I know that I am loved and appreciated - the good wishes, care and attention of my friends and community and some of my family has taught me that I was much more loved that I ever thought I was.  This is good!

Mentally, looking back to that fateful day when I was operated on, I don't really feel that I'm actually living my life in a full way now.  Maybe because it's the winter, but I feel that before the sun shone much more and life was much more simple and fun.  There is not a day goes by when I don't think about the change in my body and the fear of the cancer coming back comes into my mind several times a day.  I am more fragile, cry more easily, and I don't really, honestly see how life will ever be good again, carefree if you like, most of the time I feel like I'm going through the motions of living - I want to live, I want to see the sunset but I haven't found the point of it really.  Everyone I know thinks my morale is good, but I don't really see that being miserable in public will help me, I save that for the home and my poor family who mostly don't know what to do with me when I'm down.  I see a psychologist weekly.

I have not yet looked at my 'breasts' in the mirror although they are never far from my mind - I have to touch them and the scars to oil them every day but I don't want to see them.  It often surprises me when I look down and see my flat chest in my unfilled clothes, I still feel like something is missing.

I've taken on a little more work starting in March so I hope I'll be able to cope with that.  I have to sit down more frequently when I teach these days.  I am doing some diy in the house during the school holidays and I'm going to try to do some ironing too.

I'm a different person - not like those thrusting, vibrant, glowing women you see in Good Housekeeping every month, those who do marathons and set up charities and lose loads of weight and say 'cancer was a gift'.  I'm a shadow of myself, struggling to find my new way of living and coping, I think that's it in a word, I'm coping.

It's all about sunsets really

Since my 50th Birthday I've been wondering about the meaning of life and what it's all about and really really searching for meaning in all of this and a sign that my time here is worth it and what makes it worth it and the hope that I've made a difference, and what does that mean anyway.  It's been a fairly fruitless search full of never ending circles coming back to the starting point again and again.  No answers, not even a sniff of one.  This quest has been all the more confused by the appearance of cancer just before my 51st Birthday.

So I was looking out of the window this weekend and I took this photo.  It's a great window onto our back garden, which is south facing, so we get lots of sun and a beautiful view of the sunset.

 

And I realised that it's all about sunsets really.

When the sun sets, it's the end of the day for most people and with it the satisfaction that the sun has come up and now it's going down and you've survived, lived, endured, enjoyed, another day.  The daylight hours have come and gone and you are still here to greet the night time.  The day might have been really amazing full of wonderous, exciting things - you may have won the lottery, had a baby, handed in an assignment at last, broke the world record for something, cooked a delicious meal, swam the Channel, married a Prince, hugged your children tightly.  Or the day might have been a really terrible one - you might have got the flu, someone you loved might have died, you won the silver medal instead of the gold, broken your leg, been cheated on by your lover, you might have found out that you had breast cancer.

Or your day might have been just satisfactory - the kids got to school on time, you finished the thing you wanted to finish at work, you had a pleasant meeting with your boss, the homework was done not too brilliantly but done, the train was almost on time and wasn't too packed, you tidied the house, made an reasonably healthy meal, did a little sport - just mundane stuff, not great but not terrible.

But at the end of the day, the sunset marks the end to all of those days good, bad or mediocre and time moves on, the sun slips away, sometimes in a glorious show, sometimes very discreetly without you noticing it.  And it is gone.  The day is done, you've lived the hours that the sun gave to you - maybe in distress, maybe in glory or happiness or just in a contented way.  But whatever way those hours panned out, they are gone and the sunset is here to mark the end.  It's non-negotiable and it's the one constant thing all of us living on this planet share.

And that's life I think.  The human condition is that we just want to see another sunset, to know that we have the potential to live yet another day and when it is is done with all the myriad of potential that the day brings, we did it, we got to the end and we're watching that sun slip down the sky with a feeling that whatever happened, the day is done, we've achieved what we achieved, we've lived what we have lived.

And the glorious anticipation that there's another wonderful day tomorrow.

The New Normal

One of my favourite cancer bloggers has, once again, put my feelings into words.


http://www.chicagonow.com/cancer-is-not-a-gift/2014/02/living-with-cancer-the-new-normal/

Yes, the new normal.  Well I'm not quite there yet, some meetings, a mammogram and the small matter of several surgical interventions involving general anasthetia in a year's time, (if I'm allowed to that is).  Someone asked me today what nice thing had I done today.  I genuinely said well I purchased a swimming costume that I can look almost normal in and I changed my prosthesis for a smaller one that I feel more comfortable with.  My friend looked at me, appaled.  Maybe I should have said 'oh I walked my kids to school and the sun was shining' or something?  You see I didn't think my answer was particularly shocking - this is a reality - my reality and it was a good thing to finally find a swimsuit that doesnt make me feel mortified about and will allow me to walk out of the changing rooms without hiding.

So your reality changes.  Things will never be the same.  I had lunch with two dear friends last week and ended up crying (it was the ultra sound day and emotions were running high and I was feeling overwhelmed).  My friend wrote me a lovely email shortly afterwards to say that she was sad to see me so distressed and for her, she thought that once the surgery was over, that was it.  She hadn't realised how extensive the after effects would be - treatments, worries, lacking confidence, depression.  You get the picture.  The thing is, I had not realised either, so I totally understood..  I thought it would be all over after the surgery.  But, although this might be the most shocking part of it, there is a whole lot more to come.  The new normal becomes normal - us humans are suprisingly adaptable sometimes - but it's not a nice place to be this new normal, I never wanted to visit this place.

Weepy Week

It was a pretty tough week last week.  I had the kine, who was actually very sweet and gave me an anti-stress massage instead of the normal kine.  Then I had Tuesday and the ultrasound of my right breast.

For those of you keeping with the story, my right breast has some fairly large lumps in it.  The lumps were very hard and localised under the scar from under the breast to nipple and the surgeon told me to massage the lumps.  So I have been doing that.  I've been very meticulous in putting Bio Oil on the scars and massaging every single night before I go to bed.  Now the burns have subsided on the left, I'm doing the same there too.

Anyhow, the lumpy bits in the right seem to have moved around and maybe split up and I started getting worried.  My oncologist examined me and said they are scar tissue in the breast, they can't be removed because the breast will be too small if they're removed.  It is basically my fault for choosing the path that I did in terms of surgery.  Yes fuckin choosing, not much of that going on really was there really?  Second oncologist thought they were scar tissue but would I like an ultrasound to be sure?  Yes I would.  Dr Pink gyne said get them looked at in an intense sort of way.

Which is why I found myself outside the same Centre Imagerie that I visited that fateful day back in August.  Lying on exactly the same couch in exactly the same position on the same machine wondering about my 'healthy' breast.  It was very very hard not to cry with the worry and the dreadful memories that came back.

I waited for an hour for the results in a dim cafe full of old men, to keep out of the icy rain, stirring my crème round and round again.  It seems that the ultrasound showed what was probably scar tissue but the operator reccomends a mammograph sooner rather than later to get a 'control' picture that can be followed if the lumps evolve into anything else.  So, essentially good news.

 but not definitive and a suggestion that I need to be checked up on sooner not later.  I just thought 'when does this ever ever stop?  When will I be free?' and the answer I got was 'never so shut up and put up and be glad you can be checked up on'.  This did nothing for my feeble mental state.

Already I was enjoying a very heavy period that came out of nowhere and very close to the one I just had, when normally they are about every 3 months now.  So, I guess this is a gift from Tamoxifen.  I thought the periods would stop with the menopause but no, see, you can get the best of both worlds - the change and still have your periods extra heavy with this fantastic drug.  Well, thanks for nothing.  Yes yes I know, they are stopping the hormones so theoretically stopping tumours developing, maybe.

Later that day I ended up in tears at what should have been a nice lunch with two friends so that was a bit crap especially as I had to teach immediately afterwards.

Couple of days later I went to see the doctor to get him to sign the prescription for my bra jelly that I didn't think I'd ever need and that I'm totally ashamed of and mortified that it's there and necessary.  I just makes me sad every time I take it off, it's like taking part of my breast off, reminding me what's missing or strapping on my tumour again.  It's just weird weird weird.  dh had a feel of it and he thought it was slightly amusing.  It is and that's what so horribly embarassing about it.  I wear it as little as possible.

So doctor sits me down and asks me how I am.  Well, the tears came flooding out, as they had been all week at the drop of a hat.  It was nice that he took the time to talk, I appreciated it.  He thinks I am depressed.  I think he's right.  He wanted me to take anti-depressants.  I politely declined.  I just don't want to put yet another unnatural thing in my body.  Too much already.  And in any case, if the sadness needs to come out, well it does doesn't it?  As far as I can see I am (just) holding down a little part time work.  I do break down frequently at home for no reason whatsoever so that's not great and I am a bit shoutey at the children and I don't much like to go outside of the house unless necessary.  But as far as I can see anti depressants just mask the problem; they don't address it.  So i'm in the film Carry on Crying for the moment.

I saw the Listening Brunette on Thursday who was lovely in fact and sort of gave me permission to feel like shit.  She was not surprised at my depressive state, as everything had happened so quickly - the surgery, radiotherapy and now hormontherapy - that she almost expected a real low to come now when I'd had a chance to think.

I had an atelier Belle et Bien scheduled at the hospital on Friday but as the transport was so bad I was 20mins late.  I phoned them to tell them and they said don't bother coming.  Well, that was a blow too, I'd been really looking forward to it.  So, cue more tears.

There were some little peaks of happiness this weekend.  It was Théo's 11th Birthday and his 10 friends were coming round to go bowling then for pizzas.  As I left the house I said to dh 'I have absolutely no inclination to do this party at all.  I would rather go to bed' and then when all the parents came to pick up their kids, they stayed for champagne and our house was full of fighting kids and noisy parents, I found it incredibly stressful and overwhelming.  My Mum called so I sat on the stairs saying 'make them go away Mum'.  I was absolutely shattered.  Yes that's another thing, I've been really tired since the radiotherapy stopped.  People say this can go on for years, well I jolly well hope not.  Enough already!  So that was not a peak of happiness, here it is-

What was good was going to MT's Birthday party.  An excuse to dress up (ahem, this is not a really easy thing to do yet) and to get made up - I'm good for that.  I chose my outfit carefully keeping a cardigan for cover up if I felt too self conscious.  Most of my friends there knew about the cancer and I only got one person giving me the up and down focusing on the tits that are no longer.  I danced.  I didn't know it was ok to dance, I wondered if the jelly would move or fall out.  It didn't but it wasn't break dancing or anything!  And I found myself meeting new people and ended up under the influence of margaritas in the car park being photographed with Ms Aniston with cowboy hats on, smiling.  It was a good night.

So hopefully that week was a little blip.  Life goes on until the next appointment.