Update

Firstly, sorry for not updating sooner.  I'm doing ok, desperately trying to get as fit as possible before Radiotherapy but my mind is more ready for it than my body at the moment.  I returned to yoga last week and while I was happy to be able to go, I was frustrated at not being able to do as much as I would have liked.

So, on to the important stuff,  after a fashion I did get the results of my ocular MRI.  Whilst it was discussed the same week at the MDT meeting, trying to get any details out of them has been hard work and stressful.  Very long story short, I finally went to my lovely GP and got print outs of all my reports, pathology and MRI's so I'm now equipped with all the info.

So, the latest MRI shows no major change in size of the mass behind my eye.  Specifically the mass is surrounding a nerve.   After being told repeatedly that my facial nerve pain is unlikely to be caused by whatever is going on behind my eye since the trigeminal nerve does not pass near there.....guess what?  The MRI report clearly states that the "maxillary division of the left trigeminal nerve" is involved. I won't bore you with the details but basically the radiologists opinion is that as there has not been major change since January, a secondary breast cancer is unlikely (phew!).  A nerve sheath tumour is to be considered and a neurological opinion is recommended.  So this is now a completely separate medical 'issue'.   Can you believe it?!  Actually, I can and am quite calm about it.  What I'm NOT calm about is the amount of time this has taken to sort out.  I have made an appointment with the head of the MDT so I can find out what referrals they are making and why it is still taking so long.

I have my first appointment to find out about radiotherapy on Friday Poole.

I'm generally feeling good.  Have now lost five fingernails and five toenails but the damaged parts are very nearly growing and new nail growing really fast.  My hair is also thickening up now, picture below. Yesterday I met quite a few of my Tiny Talk families at another coffee morning, this time to raise money for Shine, and a great excuse to get together and catch up while eating cake!  It was lovely to see everyone and I am very grateful to everyone who organised it, donated things and came along.

Easter weekend

As promised, some photos of our mostly sunny Easter weekend.  We had a nice relaxing weekend, got some jobs done on the boat, visit to the aquarium and spending time with Adrian's Parents.

MRI take two!

Had my MRI for my eye today, it was long and noisy!!  Hopefully after all the nagging I might get somewhere next week when they should have the results and have made a decision on what to do next.  

Meanwhile, I am putting it all to the back of my mind for a few days, we are off to Plymouth in the morning for some adventures.  Many photos to follow next week I'm sure.

See you on the other side..... have a wonderful Easter weekend everyone :-)

The road to recovery starts now

Following what was a more emotionally challenging week than expected, I am now back on form with more determination to regain my health and body than every before.  Putting my back out was the last thing I needed but it is almost recovered, which is pretty miraculous all things considered.  My muscles and joints still ache most of the time but this seems to be the norm for a long time post Chemo.

It's hard to put into words what I struggled with last week.  I don't think you really process the enormity of each stage until it is over, that might be part of it.  I'm still internally absorbing that chemo even happened, whilst at the same time trying to forget every minute of it!  Surgery has not been bad at all and I realise how lucky I am to have come through it with minimal loss of body parts.  However, I have still had my body irrevocably changed, I have scars, admittedly neat and tidy ones, thank you Mr Surgeon.  I am somewhat lopsided, and while nobody will ever be able to tell in clothes (swimwear will be more obvious), every time I get undressed I have to get used to the new me.

I have struggled with the conveyor belt approach I have experienced at my hospital.  The discharge from surgery was no different; an appointment in a years time and that's that, it just seemed so violently abrupt.  It took some tears and talking with my Mum to realise that what I really needed was a long debriefing following a harrowing event.  It was exactly the same with Chemo discharge.  I don't even know what they could do, or talk to me about, but somehow my brain needs someone to explain what happened and why!  Obviously that is not possible and the control freak in me is struggling with that.  I can't explain it any better than that.

Abi said to me today 'Mummy, you look magnificent since they have taken the lump out', I 
really don't know what makes her say these things but she has been so sweet to me 
throughout this whole thing.  She was so worried about the surgery, it must be a relief for her that it was over.  We played down the second op and she had a sleepover at a friends, plus I recovered so quickly I don't think it really even registered with her.  But she is obviously glad it's over.  I am happy to look magnificent in her eyes :-)

Anyway, getting back to where I started with this post....recovery is back on track.  I want my health and body back, not a vague resemblance of it.  I have exactly 2 stone to loose and a lot of fitness to regain.  I know that baby steps are what it takes and I'll have to accept a pause or even backwards step during and after radiotherapy but I'm ready to do all I can before radio starts.  Adrian's been tasked with nagging me every evening to do my exercises to strengthen my back and tummy to prevent hurting my back again.  I'm returning to my walking routine, at least two miles every day.

End of another phase

No more surgery...yay!  So that's that, another step complete.  Confirmed grade three cancer, oestrogen and progesterone positive (which just means the cancer is driven by these hormones.

I now have to take a drug called tamoxifen for five years, this drug prevents any cancer cells  that may still be lurking in my system from being activated and growing, thereby reducing the chance of recurrance or metastasis.  Here is how it works if you are interested (probably not, but I am!)...stolen from Wikipedia .....

Some breast cancer cells require estrogen to grow. Estrogen binds to and activates the estrogen receptor in these cells. Tamoxifen is metabolized into compounds that also bind to the estrogen receptor but do not activate it. Because of this competative antagonism, tamoxifen acts like a key broken off in the lock that prevents any other key from being inserted, preventing estrogen from binding to its receptor. Hence breast cancer cell growth is blocked.

Of course there are drawbacks....it is considered a carcinogen for one!  It particularly increases the risk of endometrial cancer.  As it blocks the action of oestrogen it can also cause menopausal side effects such as hot flushes and weight gain.  I already have these effects anyway as my ovarys have been sent to sleep by the chemo.  Deep joy!  None of these things were actually discussed with me I was just sent off with a prescription and told they would see me for follow up in a years time!  But of course, I had already researched all of this so was well informed.

Next step is radiotherapy, I'll get an appointment for planning in a few weeks time.  I'm now discharged from surgery and go to Poole Hospital for Radiotherapy.  

The excuse from the hospital regarding the eight week delay in doing anything about my eye 'mass' is that the breast department can only request breast MRI's not other parts of the body......what????  Ok, so somehow someone finally sorted it out on Friday and I have an appointment on Tuesday.  They will then discuss the result at the MDT (multidisciplinary team meeting) and get back to me.....not holding my breath so will be chasing it up again after Easter.

So that's the updates for now, my back is improving everyday, I'm beyond exhausted by everything and looking forward to hopefully feeling well and forgetting about Cancer and all in entails for a while over Easter.  Weather permitting we'll be sailing the seven seas (well Plymouth Sound, but we can use our imaginations :-) )

Easter Holidays

Well, it's not been the best start to the Easter holidays - putting my back out and on top of that Adrian is away in America on a work trip this week!  Luckily I have my wonderful friend Liz here to help me out with the kiddies :-)

My back has been a bit of a worry as it's never been this bad before and I had several days of excruciating pain making even the smallest of movements.  However after a few Chiropractic treatments from the wonderful Anna and her colleague, Beth, I feel I am on the way to recovery even if it is slower than my impatient self would like!  I have also once again confirmed I am pretty impervious to narcotics, so no chance of me ever becoming an addict!  Diazepam, Co-codamol and oramorph on top of my regular amytriptaline, all had pretty much no effect on pain and not even the slightest hint of an altered mental state......disappointing really.  I'm surprised they managed to knock me out for a general anaesthetic as I seem to be so immune to medication!

In other news, I finally complained at enough people that I have an MRI date for next Tuesday.  Despite being told by 3 different people that it was all in hand and in the process of being done....over six weeks after the specialists in Southampton requested a detailed orbital MRI it had still not been ordered.  The Breast care nurse was most apologetic on the phone on Friday and said she had called the department herself to request the appointment.  So, thankfully, said appointment arrived in the post this morning.  I am pretty convinced that the specifics of what is to be done have been lost along the way and I will have to check on Thursday when I go for my post-op appointment that the radiologists have been told what scans need to be done.  I've said it before, the NHS is amazing and we are definitely lucky to have it but there is something wrong somewhere and it can be very frustrating.  Anyway at least it looks like things are moving forward with my eye investigations, it's just lucky that things have not got much worse while hospitals and departments have been faffing around.

If all is well from post-op and I'm not in for any more surgery, and my back is up to it, we will be off to Plymouth to stay on the boat for a few days over Easter weekend.  I'm not holding my breath and getting too excited about it as my life does not seem to want to run smoothly at the moment but it would be nice to get away for a few days.

Once again, some of my lovely Tiny Talk families have organised a coffee morning, this time in Milford on Sea at the Community Centre.  It will be on Tuesday 29th of April 9.30-11.30, so any local people, if you are free please come along for some lovely cake and tell your friends.  All proceeds will be going to Shine Cancer Support.

Warning - not an optimistic post!

I'm feeling rather beaten today.  I have an excruciatingly painful back, following the well known dangerous activity of picking up a pen off the floor on Tuesday!  It seem to has finally broken me after two days of intense pain despite taking everything in my home pharmacy, including morphine.   This is like a bad joke :-(

On a happier note, Adrian and I celebrate out 10th wedding anniversary today, last year we thought of many different things we'd like to do to celebrate, none of which we can do now.  However we will celebrate by remembering the wonderful ten years we have had and being thankful for the pretty perfect life we continue to have with our girls.  If I can get off the sofa without screaming the house down, we will go out for dinner.

I need lots of hugs just now, that is all, so if you see me just give me a hug that will make me feel better.