Caz 

thsnk you. That’s so true xxxx 

Hi everyone,

Happy New Year to you all!!

I am just on my way home from spending a week, down in Somerset,  in a farm house with my whole family - sisters/nieces/parents/in-laws/kids. All I can say is it felt like a good idea at the time and a week was far too long!!

I have had to bite my tongue quite a lot and nearly came to blows with my mum yesterday, for having digs at my alcohol consumption (it was New Years Day, everyone was drinking, and I didn't have any more than anyone else!)

I would have blamed my foul mood/firey temper on the tamoxifen but had taken an empty box with me!!

I am just looking forward to getting back to 'normal' life now. Tidy house, work, no hospital appointments/treatments/cancer. I am feeling a bit more accepting that I have to take my medication so am going to try harder to take it more regularly than I have been doing!  No appointments now until the 2nd April!

Sam, hope you are feeling ok after the last chemo treatment. We are here to help you through ops and radiotherapy! 
Christine - what is the plan next for you? Do you have to have radiotherapy?

Sangha, keep strong. We are here to support you.

Michelle, Hope your mum is recovering ok. Let us know the results when they come through. Fingers crossed those lymph nodes are clear.

Caroline xx

Hi Caroline, (and Sam and whoever else may be reading)

Happy New Year!  I, too, had a week away doing nothing except sit on my backside reading. I wasn't allowed to lift a finger. I loved being there but a week was too long.  My son felt obliged to sit and keep me company, despite having stuff to do in the garage. He has a state of the art TV with surround sound and lots of streaming channels. Unfortunately, I am quite hard of hearing and couldn't hear much on it despite wearing my hearing aids, so I sat reading while he watched Peaky Blinders, (2 whole series.) I had told him that I often use sub titles at home because the sound isn't clear on many programmes with background music etc. but it didn't register. It was only the day before I left that he said something about only watching Peaky Blinders because I wasn't interested in watching anything.  I explained then that I couldn't hear it, whatever the volume because there was so much booming base. Later on he asked if I could hear it now and I could!  He'd switched off the surround sound with its cinematic bass. So that last evening I watched some really good new films.

I suffered terribly with the old knee, much to his dismay. He really thought it was brought on by too much walking and that enforced rest for a couple of days and a TENS machine  would cure it.  It might have done if I hadn't had to climb a steep staircase every time I needed the loo. I would come down using the same leg to step down followed by the other, like a two year old! 

I am not complaining, honest!  I was taken care of so well.  I slept like a log on the guest bed mattress. Note to self, when buying a new mattress get an Eve, so comfortable!  My son would get up and take Archie out with his little dog Charley in the morning, as soon as he heard Archie moving about, then he would make breakfast in time for me to rise having taken my Lansoprazole (which has to be taken half an hour before food) and had a shower.  He would then take his partner's breakfast up to her in bed, which he does when she doesn't have to go to work, (he's on a sabbatical until February.) She works really hard and was having the whole Christmas and New Year holidays as a well deserved break. He would make lunch or take me out for lunch, and they would alternate between cooking delicious healthy dinners. I really should eat like that all the time!  In fact my shopping cart today contained a lot more healthy food than usual!

One moment of embarrassment was when Archie did a poo in the back garden, on the artificial turf. I went looking for it and thought I had picked it all up (it was dark at the time) but I had actually stood in some and walked it back into the house, all the way up the stairs to the bathroom!!! Cream stair carpet!!

I felt really bad as they were running around clearing up all the spots of poo!  Their house was immaculate until then.

Apart from that, Archie was amazingly well behaved, he hardly barked at all. He was amazing in the car, both going down and coming home, never made a sound, just settled in the front seat and watched where he was going. I hoped this would last but no, as soon as we got home he reverted to type and is his usual naughty barking self.

 I go to the hospital physio tomorrow so I'm going to ring my nurse and ask if I can see her afterwards and get a prescription for the hormone blockers.  I have ordered a vibration plate exercise machine from Ideal World, not because I want to slim, but because the only positive medical benefit I could find for those machines is that they improve bone density and it seemed a good idea to have something non chemical to allay the bone thinning effects of the medication. I have also bought some super scales that measure bone density, I don't know how, but it will be good to keep an eye on it.  I am willing to start the medication and if I don't suffer too badly from side effects I will continue taking them, so, watch this space. I have enjoyed my normality for the last few weeks and hopefully that won't change, too much.

So decision made!!!!!

Christine xxx

Hi Christine,

Wow! Pleased to hear you had a wonderful time at your son's, but more pleased you have decided to give the medication a try! Another part of the process/journey we can do together. I have put my medication in the bathroom and have been taking it when I clean my teeth. Managed so far to do it daily! (Only been 3 days :D)

I am also back to the gym tonight!! Onwards and upwards!!

Caroline XX 

Hi, 

I've been told by a friend that she takes it after her evening meal, as she feels less nauseous in the morning that way.  I'll just have to work out what's best for me!

Congratulations on going back to the gym. It's not my idea of fun but my son's partner lives for that, and running! Actually, I'm going to ask today about an exercise class run by the hospital physio department. My therapist mentioned it at my first visit, and now I'm back to normal, except for the knee I think I should sign up.  I think it's just a six week course to get going after the surgery etc.

Cxx

Hi

Just a quickie to let you know am still in the land of the living though don;t feel like it.  For those who watched Dracula I look and feel like Jonathan Harker post leaving castle!

Will write more when have some enery......soon I hope...

X

Hope you feel better soon. Take it easy until you do! 

Cx

Ok, I'm back!

Someone thankfully flicked a switch overnight Monday so yesterday felt human again and comfortable in my own skin...always a plus I find.  Timing was good as well as had my (please let it be) last MRI, this took 3 hours as had raised with the hospital CEO about radiology depts unwillingness to use ports to deliver contrast.  Both my hands hurt so I refuse to have them cannulated and it always takes at least 3 attempts to find elusive veins, a joy for me and the radiologist (and the consultant they eventually have to call to do it!).

So I was accompanied by the hospital deputy director of nursing who also experienced first hand the refusal ( on no solid grounds other than unwillingness to challenge the norm and invest in some training/education) of the radiology dept to use suitable equipment (my port) and make life just that bit nicer for the patient (crazy eh?).  Anyway feel like I've achieved something as the radiology chief auto-bot (catch phrases "no" and "its policy") promised to review their outdated policy - and I made him look me in the eye & shake on it too.  Luckily the dep dir of nursing is on a similar mission so something will happen for future me's.

So had an uneventful new year (never a big thing for me) as was in zombie mode.

My mission today is to gather the 30-odd (I may have overdone it) questions re surgery into some sort of order, I'll be nothing if informed.  And Christine your experiences have been really useful in this respect so thanks again.

So we'll see whether pesky lumps are still with us at meeting with surgeon next week, am not really sure the implications of whether the lumps have dissipated or not - I mean they're still going to do the mastectomy.  The boyfriend will be with me at meeting, always a challenge as he's not comfortable with anything medical.....am sure he'll be a great help!!!  And as am a terrible partner do quite enjoy watching him squirm, and some of my questions will definitely have that effect...

Christine - how's your Wallee life? (Love that film and do think it will be reflective of our future - in a lot of ways already is!). Is the TENS machine working yet?  Do hope you get some knee relief soon and hopefully its improving now you're free of your son's (still cream??) stairs.
Your plight re hearing is like my mothers (I was amazed at how much hearing aids cost!) but she is quite insistent at having the volume so high so the house shakes & my ears bleed, apparently her hearing aids need their tubes cleared or something and luckily for her unlike your son (who's just like the boyfriend, boys & tech eh) I am far too tight to have such expensive TV equipment....mind you mine is all hand-me-downs form the boyfriend (too tight to invest in something so trivial myself).
Am glad that, despite the naughty stairs, you were very well looked after.  Cream carpets always a bad idea in my book (how impractical?), better to get something more cat sick coloured I find personally.
Interested to hear how you get on with your bone thinning strategy as have early osteoporosis and am keen to keep dem bones in good density and know that the hormone meds that am soon to take will not help, am hopeful that calcium and exercise will help but we'll see.  Back to gym with Caroline and cycling from tomorrow...
Not sure if I mentioned but from Monday will be on Zoladex (to dry up ovaries as not sure whether am in or post menopause, I think post as no periods since March) and sometime soon Letrozole is my hormone drug of choice so am with you both (will however be ensuring that I take a full box on my travels Caroline!!).  

Think I'll be glad to have hormones dampened (though am not at all sure how these things work) as following the chemo have become alarmingly over emotional (not like me at all), especially when reflecting on lovely things that people do.  Nearly had an episode whilst telling the matron of chemo unit yesterday how fabulous her team had been, she was really worried it had all got too much and I needed someone with me at the MRI...bless her.  Thankfully my (superglued) false eyelashes held in there.

Happy lack of hormones eh??  I hope they're kind to us all.

Caroline -  Your Mum had a go at you about alcohol consumption eh? cos you're only 16 and not a grown lady after all, and after all you've been through I'd be welcoming a week of being legless, never mind a wee bit merry for a day.  Mothers however can be from different generations and am sure she only had your best (liver?) interests at heart.  Thankfully both mine can, and often do, drink me under the table ( am convinced they suffered during prohibition and have been making up for it ever since...).  Bunch of lushes that we are.
I am planning a week (when feeling up to it) of living on copious amounts of alcohol (from breakfast through to night cap time) blue cheese and pate....I will warn the local A&E beforehand to get stomach pumps at the ready.
Hope you're enjoying your "normal" life (often under-rated).

Sangha - Hi and although chemo was quite challenging at the end up till then I had very few side effects, never was sick or felt nauseous.  It was just at the end when I felt the cumulative effect of the treatment and bear in mind everyone is different, I know people who have sailed through it.  I lost a fair bit of my hair but for me that's not important (and I look quite good, as do a lot of people, with very short hair) I just got sick of it falling out and not being able to style/wash so had it shaved off...a good decision for me.  
I certainly second Caroline that having a positive disposition will really help, use it as an opportunity to chat to cancer support staff and patients, I really enjoyed this aspect, especially as am far too gobby for my own good.  Also do use friend and family support, people will amaze you and I hope will support you in challenging times.
Good luck with your treatment.

Right enough from me, time for a lovely shower (oh dear its gone midday).

Sam X
 

Hi All,

Glad to have you back, Sam. Before I forget, for your mother, you can get perfectly good hearing aids on the NHS.  You require a referral from your doctor, first, then you get to choose where to get your hearing tested. You can go to a Specsavers.  Full audiology tests and digital aids tailored to your own hearing.  All free, plus ongoing free batteries and tube cleaning etc. for three years. You get tested again, then and continue. The alternative is to go to your hospital audiology department, paying hospital car park charges and waiting times. My friend's husband went down the hospital route at the same time I went to Specsavers and we have identical aids, plus when he lost his after a drunken dinner party and I had mine chewed to destruction by Archie, we both paid only £68 for each new one.

After all you have gone through so far I am sure you will find the surgery the easiest part of your treatment. Recovery from the initial surgery will be fine.  You might find your reconstruction a bit harder, but just think what you can do with your pert little boobs. Go topless on the beach, be a page three model, (do they still have those?) and buy shirts that button down the front without having to worry about gaping!

If you already have signs of osteoporosis you may be offered something different to Letrozole as that is a bone killer. Or you might have to have the bisphosphonates that will protect them. I've said I don't want the bisphosphonates but if my bones start crumbling I suppose I will have to now I've started on the Letrozole. That's why I want to find other ways of improving bone density.

Zoladex, lovely - instant menopause! Hope it's not as bad for you as my  instant one was.  I was on HRT then I was advised to stop it because of the risk of getting breast cancer (Ha!)  I agreed and stopped it, but I was told later it should have been tapered off, not just stopped. The result was a short but very traumatic menopause. Just have plenty of sheets around as you may be changing your bed every day, I couldn't believe anyone could sweat so much!

That all seemed just for Sam, now for you all, more generally 

I've been to the physiotherapist today for my knee and had the works, ultrasound, TeNS and laser treatments plus massage and exercises. It felt great when I left with orders to go straight home, have a cup of tea and put my feet up. An hour later it's started hurting again  She has suggested I go to the docs and ask for something to keep me going for the six weeks until my NHS physio appointment, possibly a cortisone injection.  The last one I had on the other knee a couple of years ago worked wonders, so I hope I can get one for this knee because there is nothing to make you feel old like not being able to walk!  

I have ordered a TENs machine that is due to be delivered this afternoon - that, at least,  will stop the pain and I've ordered one that I can move around with, that might be enough to keep me going. The physio said I can keep it on all the time if I want, you can't overdo it, apparently. I hope I'll get some housework done then, I am just doing the bare minimum at the moment and I made such good plans to start clearing out the clutter I've accumulated over the few years I've lived in this house. 

Day three of the Letrozole, so far so good, but I expect it takes a few days to kick in, I'll keep you posted re side effects as I notice them.

C xx