To have come this far....?

12 July 2011

2011-07-12T08:37:00Z

Well, all those who've told me about Macmillans these past few weeks have been right on the ball!

I emailed them yesterday as they have a support centre inside Southampton Hospital itself. Within about fifteen minutes a response came back which was out of this world! I have been welcomed with open arms and the mail sounded wonderfully sincere. I've been offered all kinds of support and help and can't believe it after the koos-och-tech breast care(?) nurses here (apologies to anyone that understands pheonetic arabic - ah-hem)....DON'T LOOK IT UP, you'll never speak to me again - it's extremely rude indeed !! (thank you Israel for teaching me the profanitiesto use when I need them :-)) !!
What a different kettle of fish southampton is going to be - for support anyway, at present - hoping for much better non-intimidating treatment by the nursing staff I will encounter too!

Thank you with all my heart for the tips about Macmillans - I feel good about going now and not as alone as I thought I would end up.

11 July, 2011

2011-07-12T07:50:23Z

Well folks, time to finish the packing (done in the mornings when I'm relatively pain free) and closing up shop here in Ireland after being a resident for 17 and a half years. It'll feel sad to leave, and even more scary to be living alone for chemo - but I already have some support lined up......unlike Ireland support is there in the UK - and I hope there are not any nurses like in the breast cancer unit in Cork - otherwise it'll be out of the frying pan and into the fire !

Macmillan's have already offered me support and help with getting allowances and providing the forms for same - and that is wonderful.

My friends in Southampton (the same two who will try to get my son over to the UK AND have him when I am laid up) almost totally furnished the flat that they got for me, in just a few days - I would not have believed that people as good as this existed if I had never been in the position I am now - I am deeply indebted to them.

Spoke with my son on Saturday after a great deal of prayer that he wouldn't ask any open-ended questions that would cause me to have to tell him - I want so much to reserve that until his Godfather is with him in a little while, to apply for the study visa and pack up our house in India - then he will be able to have someone who loves him to bits there with him and will not feel so alone when he needs to ask questions after the phone call.

His Godfather has all the answers ready, including a lot of optimistic ones, so that my son may just be left with the fact that yes, I do have cancer, but that it looks like everything will be ok. Anything that happens after will be dealt with as it comes and I won't be alone in deciding what to tell him and when. Of course, it will be a shock when he finally sees me - but that will also be dealt with and I am sure that as he is old enough to understand, he will realise that it was not the best thing to have told him everything before he came over. Please pray that my friends in Southampton are successful in getting the study visa sorted and that he can come over to the UK very shortly.

And what of you - the friends who have also kept me going with your messages and love. You will always be in my heart, until I can get back online some place - probably before chemo starts I'd say... after that we'll have to see, but I won't be able to update for a week or so from Wednesday this week - got to give this laptop back too, as it's only borrowed. I thank Don for lending it to me as I don't know what the past few weeks would have been like without it - guess I'm just about to find out!

So, be safe, be happy and be well!

I send you thoughts, love, blessings and thankyous

and hopefully I'll be back on here soon.

9 July, 2011

2011-07-12T07:49:10Z

Just taken painkillers and hope to be active in about half an hour. Sadly, it seems my life has to be arranged around the few pain free hours I have every morning. Now down to packing, clearing up a little (amazing how much one gathers in just a few short weeks) - most of it papers, papers, papers.....bonfire time!

Thankfully nothing has to be packed perfectly; I've got a few boxes which have been here for some time - that we sent over from India and some that I left here with books etc...in. It will be lovely to have everything unpacked for the first time in years and to have lots of my son's things around me in the new place.....waiting for his arrival - giving me hope and encouragement - pleading with God that things will work out......please.

Where did the past few weeks go to? I lost all concept of time a long time back it seems. To think that I arrived at the end of April - and was supposed to have been back in India this very morning...

It feels now as if I have been gone from my son for a year - so much has happened in such a short span of time. My only wish left in this life is that we are permitted to have our dream in the UK. Something we have worked for, for SO long and seems within our reach now as everything has been gathered. Please say a prayer that friends Ray and Sue are able to continue where I was forced to leave things and that they are successful in bringing my son over. Whatever happens, I can not be away from him for Christmas and will have to save every penny I can to get there and at least stay in a cheap hotel with him for the Christmas period - after everything, it is the last thing I can do. But if he is not here by Christmas then our chances of every being together in the UK and him being able to attend the school will be remote, I guess. Something I don't want to think about. It does mean though that I will not stay in the UK more time than I absolutely have to and while I'm there, try to secure funding for me to get back and to find a school for him in India and continue our lives there. I cannot live without my child and I WILL NOT abandon him there. He trusts me, and had a bad beginning to life and I don't want him to become bitter and lose all his chances. Staying in India will stunt him and when I am gone, what then..... ?

Stop it, shouldn't think about things like that.....yes, I hear you. BUT I have always been a realist. My motto in life has, for many years been "Hope for the best, but prepare for the worst" That way, when I've expected the worst and it has happened, although it's very upsetting, it was at least on the cards and didn't come as a heck of a shock as it would have if I had been too sure of myself.

On a lighter note, I had been wondering if the Swallows that nest here apparently every spring, had survived - as I hadn't seen them around after the visit of some Magpies last week. Yesterday morning as I sat in 'the throne room' staring blankly out of the little window, I saw a small bird on top of the little chimney of Don's river camper boat. Other birds seemed to be continually swooping down at it and I thought perhaps it was hurt as it just sat there, not moving much at all.

I went out of my front door and crept carefully to where the boat was to see not one, but two swallow babies perched precariously atop the chimney! How perfect & beautiful they are! The swooping birds had been mum and dad who were now a little nervous at my presence, so I left the garden and went back into the bathroom to look in wonder and joy at their antics. Eventually baby 1 & 2 flew off and had a bit of a circuit of the airway near the boat. This continued for a long time with mum and dad periodically feeding them too.

I had to go out to get a prescription in the late morning, which ended up taking a longer time than anticipated (of course :-)) and on my return I saw an amazing sight indeed. I didn't try taking photo's unfortunately, as my presence again would have disturbed the dance!

There must have been at least twenty Swallow parents, including their babies, all taking to the skies, catching the thermals and playing so happily - teaching their babies to fly....back and forth they glided in the air....then turning in circles and all so beautifully choreographed. What a show they put on....and what a perilous journey awaits the babies and their parents when, sometime in August they take to the skies for their massively long journey back to South Africa. No one tells them which way they have to go, but unlike humans, they trust in the Spirit that determines what they do and when, which I believe fully in my heart is the little computer program put inside each and every one of them by the Lord Himself. Sadly, some of the birds will not make it, but hopefully their babies that survive will return here again next Spring and repeat the entire process once more.

What joyous things we see when we take the time to look. The Lord puts on a free show for us 24 hours a day if only we take the time to take time out and really look.

I think of the Swallows life and journey ahead and realise that I hardly take any notice of the Spirit that is tugging at me the whole time. Why? Because I want to retain control over my life and think that I have to help the Lord out by organising it - but watching these tiny creatures and how they put their trust in Him to take them where they have to go, mostly succeed. With intervention in the journey of life many do succeed and only when He is ready, does He call them home and not a minute before. He has plans for every living thing on the face of this earth and we make it very hard for Him by going our own way and not listening to Him, but putting our own plans ahead of that. Why are we so afraid to Let Go and Let God? Because we want to be in control.

But, perhaps I should just look at the life of the Swallow, and realise that there is a plan, if only I accepted it and

Let go and Let God, life would be so much easier :-)

Happy weekend to you all, with love and thoughts...

6 July, 2011

2011-07-12T07:48:19Z

Took painkiller just prior to leaving the house this morning and by the time we got to the hospital I was anesthetized and wavering along the corridors like a soton student on a Friday night :-) MRI was uneventful as the nice man doing them was wonderful. We talked about the idle PET scanner which I found out was close to his heart, and the fact that it had been installed 3 and a half years back and the hospital kept saying no to employing ......three administrators...talk about criminal, as there are three people, including my MRI man who can work the darn thing. His Father in law is 82 and has pancreatic cancer and has had to go to Dublin three times in the last 6 months - having had to wait 5 months initially for the first scan and they booked in the three scans at the same time otherwise he said his FIL might not have 'been here' at all waiting for a scan!

Anyway, he said there was a 'mass of something' where I told you I had the latest lump and to be sure and get it sorted.

So, I went upstairs to the breast clinic and who do I see....the same intimidating breast care nurse I saw last Thursday. SO, was soft spoken (yes, me...!) and polite to the extreme. She was not. She poked around and said it was not an infection and not fluid and was 'normal'. I asked her if she was 100% sure about that and she said that the surgeon who operated on me poor titty was around and would I like to see her. I like this surgeon very much, she makes me laugh and I have her in 'stitches'. She's lovely. So the surgeon came bouncing in - really - and gave me a kiss on the cheek and sat on the bed with me. She had a look and said 'Oh my God, my work is wonderful isn't it!' I said could I please have the titty back :-) She had a good look and GENTLE poke and said it was fine and expected that it would go like this and there was no fluid and wasn't the human body great that it got rid of all the fluid so expertly. She said that she was sorry I hadn't been told about the radiologist but there hadn't been time. I had to go see him as he would have to connect with a radiologist in soton and not the oncologist that had already been in contact. I said ok and she asked when the appt was and I said three this afternoon.

She said she would go talk to the 'luverly' breast care nurse (oh no) and ask her to contact radiology and see if he couldn't see me sooner to save me waiting around all day. She gave me another hug and was very sincere in asking about Tony, wishing me a safe trip to the UK and said 'What wonderful friends they are in soton, aren't you so lucky!...... :-) She said she would pray for me and hoped I got on flying in the cancer journey and would be sorry to see me go as she liked coming to see me because it was like taking a coffee break! Gave me a hug and off she went.

Sat there for 45 minutes and then got up and went to the reception and asked whether luverly breast care nursie was around and the recep said she was in a room and would I wait. I did. LBCN came out and I said could I see her a minute. She tutted and walked off to get another bad boobie lady into a room and returned to me.

What is it Maureen?

I wanted to ask you whether the surgeon had spoken with you about radiology?

SHOUTING she answered, in full hearing of about 20 or so ladies and their hubbies or whatever......THIS IS VERY BUSY BREAST CARE CLINIC!

I was so shocked at her words and the intimidation she was yet again causing me that I simply said

I'm aware of that (not shouting)

She answered: 'Well, what is it you want now then!'

I just looked her in the eye and said it was ok and didn't matter, turned and walked away.

Went outside and called Don from the shopping centre opposite and he came to pick me up. Went to Tesco's and Boots and came home, not having seen the radiologist. I was so upset and shocked by her attitude, which was on par with the same attitude she had last week, that it actually took a while to stop shaking and bursting into tears.

There is simply no defence for an attitude like that. But I guess it just melts in with the entire catalogue of events I've experienced at that hospital. there are about four people I've met there that have been great - the rest have been nasty. I'll just try and sort it with SUHT once I am over. I'm going to call SUHT tomorrow perhaps and ask whether they have my file etc... I might mention the radio bit, or wait until I'm there as the radio apparently does not start until after chemo has finished...bugger, I thought I had escaped radio - get over chemo and then have loads of other cells destroyed. But the one cancer was attached to the chest wall and had access to blood vessels etc...still, radio was not mentioned to me at all....never mind.

So ends the cancer journey in Ireland at his hospital, as I will not be going back between now and next week.

The dear friends in Southampton found me a flat last night. 1 bedroom, sufficient for now as Tony could have the lounge as his room when he comes to stay, but I think that I will move on once I know he is coming for sure and hopefully it will be not too long, ut we can do with thisplace for as long as it takes. It's got security facilities, ground floor, lovelt little kitchen, bathroom, lounge, bedroom and hallway. Secure hallway outside to front door for each of the flats on each floor 4 flats, 2 stories only!) So I've just booked the car ferry and we're away next thursday night!

SOME things are coming together nicely..... :-))

5 July, 2011

2011-07-12T07:47:09Z

Well, it's finally warming up in Ireland....though they say it's been warm for a few days - up here on the mountain you wouldn't know ... go down to the valley and it's hotter. Loads of rain and wind from 7 o clock last night, thrashing the TV ariel around and making viewing almost impossible...snow storm and noise time, all night!

Gawd knows what it'll be like on chemo, but I tell you something, I've already had a rotten ulcerated mouth and last night....well, I won't spoil your breakfasts, but needless to say I'll have to go back to bed this morning but try and rehydrate myself beforehand.

I guess I'll find out if the MRI will be done or not tomorrow after the mess of yesterday - below is a copy of the post I put on another forum, where like-minded ladies are who also have breast cancer:

...today I find no one can tell me if I have an MRI on Wednesday, after being called by the BCN on Friday afternoon to tell me I did have an appointment for one on Wednesday at 9.am. Then the mail arrives and I find I have an appointment to begin Radiotherapy on Wednesday afternoon at 3pm..... that's the first I've heard of it and my treatment does not include radiotherapy.

How strange, I tell the department when I call, radio has never even been discussed with me - and I begin chemo in about three weeks. They tell me they had this referral a couple of weeks ago - I tell them I have not. I call the consultants secretary and ask her to explain what is going on. She says we'd be better off leaving it until tomorrow when I come for my checkup (can't be bothered checking this mess out, in other words)... Eh, I don't have an appointment for a checkup tomorrow...says I! Oh yes you do, says the sec. I tell them tomorrow is impossible as the elderly gent who brings me has an appointment himself with a Chiropractor.

So, the call is finished in the end with me calling and cancelling the radiotherapy appointment who are a little worried that I won't be there, even after telling them all of the above - and ask me to ask the BCN to confirm it tomorrow. I have to make four more calls and still not really get anywhere, except find out that it was true what they said on the news the other day...

.........that there are two thirds more administrators at Cork University Hospital, than nursing staff.

I might add that they all seem to have their noses in a place that doesn't smell beautiful either.

Still, I'm not waiting up today to find out the outcome of this call yesterday, to tell the truth the entire thing at CUH has been a catalogue of events that I would rather forget entirely. This is, of course, in the hopes that SUHT is better!

4 July, 2011

2011-07-12T07:46:16Z

To just get a couple of messages from people that you love and people that love you, helps me to get this fight off the ground again. I've had so many messages here and by email and when I feel bad, I re-read them. Sometimes they only help me to remember that someone really does care, or at other times, they help me to get up off this fat ass and try harder.

To have people that you love dearly, is the most wonderful thing on earth. Some of these friendships are only a couple of weeks old and some are knocking twenty five years. One lady I met while at the Indian Embassy a few weeks ago - I simply asked her the way there, as I was coming from a different direction than I'd come from before and was a little.....lost. We talked for about half an hour and she has since never left it more than a few days before sending a text of comfort and sincerity.

I believe that with my faith in human nature at an all time low at the beginning of this journey and feeling very very alone - one of the lessons taught me is that I was wrong. There are some wonderful people out there. Unfortunately we are spread wide on the earth, but that doesn't really matter because you are still THERE.

UK, Ireland, France, Mauritius, India, USA, Northern Ireland, South Africa.

Thank you SO much for sharing this journey with me. You REALLY have NO idea what your love means to me...NO IDEA!

Real friends are worth more than any amount in the bank - and I would rather stay poor in that respect - because you have made me the richest person on earth.

I'm not as bad as yesterday - the pain seems easier, for the first time - but I did take the pain killer this morning so that I can function physically, a little better - of course the medication makes one's head feel out of it a bit and then very tired around lunch time - but I've also had to learn compromise. People that know me know how much I hate taking chemical medication - and now I will be full of it for a long time yet. Chemo frightens me to death, literally. Everyone tolerates it differently and of course I have no idea how I will fare. Whatever happens, I'll be living alone and hope to God I cope ok. Knowing most of the side effects helps, as even though they may be awful, if I know they are part and parcel, I will just have to tolerate them.

Apparently a huge dose is given initially so that they can see what effect it has - and then give yet more medication to combat ill-effects or lessen the strength a bit to make life a little easier.....so the first couple of times will be the hardest. Hair falls out about 10 days to two weeks after the first chemo. I'll have mine shaved off as soon as that starts to happen - I can't imagine my mental state if I can just see clumps falling and I believe it's better than seeing that, just to shave it off.....mouth ulcers, Hot Flushes (Oh no, not again!) skin yellowing, nausea, diarrhea, constipation,vomiting, bad pains in joints and body, burning sensations of the skin, rashes, nightmares, insomnia, impared eyesight, and a whole load of other stuff (ah, how nice) are some of the effects - and we are told that we have to think positive in this situation and that the bad stuff is killing the life-threatening stuff.....I wonder where one gets positivity at that time ? - I think it might just go out of the window :-)

Friends who don't run away from you when you have a massive life-changing illness like cancer, are the ones who keep you on track. Some people still have the subconcious notion that cancer is 'catching', and they don't know that their body language is betraying what they're saying with their lips... it's an in-built self preservation that we all have, except sometimes it hurts badly. Like a lot of illnesses, you can't always see cancer and the things it's doing to the sufferer - except when you go bald and make the choice to tell those who didn't already know. and then is the time that people stare and pull their children away - but not everyone is like it, thank God. I don't blame them - as I think it's a fear that is normal and it's up to us to help them realise that the person they know is still there underneath the cancer and is still the same - except that their world has been turned upside down.

Cancer has let me know who real friends are. Some have surprised me totally & unbelievably in their kindnesses, and with others the friendships have deepened to a level that lets me know how deep that friendship was anyway and that perhaps neither of us really knew until this rollercoaster began. I have recieved a few surprises and some of them have left me breathless - to know in my heart that I am loved so much. If you had asked me before this all began, I would have probably said that I believed I was mostly an option in a lot of people's lives, only to learn now that I'm actually a priority and that my feelings in any particular friendship were reciprocated - just that I never knew it.

"Don't walk behind me; for I may not lead.

Don't walk in front of me; for I may not follow.

Just walk beside me and be my friend."

Albert Camus

"Friendship is when people know all about you but like you anyway. " :-) author unknown

"Remember, we all stumble, every one of us. That's why it's a comfort to go hand in hand. "

~ Emily Kimbrough

"Many people will walk in and out of you life, but only true friends will leave footprints in your heart."

~ Unknown

"The best kind of friend is the one you could sit on a porch swing with, never saying a word, and walk away feeling like that was the best conversation you've ever had. "

~ Unknown

"A friend is the one who comes in when the whole world has gone out. "

~ Grace Pulpit

I want to thank my friends with every fibre of my heart. You are making this unforseen journey tolerable, despite the 'down' days, because I WILL KNOW, even in the darkest hours which may be yet to come, that you are there and that I am loved. There are never enough words to say thank you at times like this, but a touch, a smile, just a look or a simple email is all that is needed and that's what you give me.

Blessings to you all, this day and be sure my love is reciprocated forever....

YOU ARE MY STRENGTH AND MY LIGHT AT THE END OF THIS TUNNEL :-)

3 July 2100

2011-07-12T07:45:10Z

Nothing in life ever goes to plan really, does it? Now, having been looking at and chasing up a place to live from Estate Agents websites for Eastleigh area or Southampton itself, I am at a loss. Housing rent allowance will only be 460 for me - my son will never count as far as what they will allow me to have rent allowance for of course, so I can only go for a 1 bedroomed place, or a two if I can find another 200-250 a month from out of the sky, to pay for the rent each month.

Guess I've been away too long from the UK, when I can't even hardly find a studio flat for the amount of allowance I could be given - and for the next few months I can't work to make up the difference in rent either. I don't mind getting a one bedroomed place as my son will not be able to live full time with me for a while after he comes over (I hope to God that my friends in Soton can do it - otherwise I will have a meltdown I think) but most of the bloody places online were let a couple of weeks ago and no one took it off the site, have been poached by unknown websites and don't really exist now, will not allow DSS or some other such problem.

Looks like it's getting impossible for me to go to Soton - but the alternative in being here and stuck on the side of this mountain for weeks and weeks more with 'cabin-fever' is alarming for me. I've only been to the shops four times in two and a half months - and only short periods. I can't seem to be able to get out and do anything normal....and dear old Don doesn't go out much, only food shopping once a week and not to where I'd like to have a wander when feeling up to it.

Did the lottery in hopes that I might win a small prize, but nothing doing there!! Friends in Soton will try to find me a place this week - but it's not so much a problem in finding a place, but paying for it!

I wonder a lot now, why God allowed this cancer to happen when we were SO close to simply applying for my son's study visa after ten years of hard work and interminable stress associated with it and can't come up with any reasoning myself and that even now, things are so difficult in the aftermath of the diagnosis, that it just feels like my son is slipping away from me little by little each day - until one day I'll turn around and the entire dream will have gone.

In truth, it feels like I have already lost him.

2 July, 2011

2011-07-02T09:37:12Z

Well, I guess it was a 'normal' day at the hospital on Thursday...

The BCN I have seen a few times wasn't there and a very rushed, younger BCN shouted my name from behind a pillar when it was my turn. I got up and started towards the corridor and the rushed BCN came around the corner almost bumping me over shouting my name again. She talked as she walked, in the end, a long ways ahead of me, and kept stopping and looking at her cell phone.

'My' BCN was away and hello, her name was.... and we'll go in this room... She asks me to get undressed three times - (I was getting my coat and sweater off, and she was just darned impatient - and I rush for no one). Asks me to lie on the bed thing. I get on and lie down, she says to sit up. She says she feels no fluid in right breast/side/under-arm/back area that had drains removed when just one drain was still giving out 80cc's a day and the other about 20cc and the swelling is now that I couldn't exercises properly for a couple of days. I says, 'OK' are you sure. I explain that I am having a bit of trouble with the pain killers and constipation, bloating etc...and have cut down on them to try to fix my stomach.She gets cross and gets another nurse (it is almost 1pm by this time and the other nurse has obviously been eating when she pops her head around the door, looks at me and says 'No, no fluid there that I can see!' Stranger BCN 1 prods and pokes and only then takes off the dressing, very roughly, and I whince a few times. She says very aggressively that there isn't as much movement as there should be - that it is tighter than it should be - that I will END UP WITH A FROZEN SHOULDER (loudly) if I don't exercise. I tell her that even with more pain (after cutting down the painkillers) that I have still exercised about four times a day in the past couple of days instead of my usual ten or so. She again almost shouts and says she will write something down for me as I dress. I sit on the other seat as she finishes writing...

Mackie ...... paracetamol 2x3 times a day (if she had looked at my notes, she would have seen that Tramadol, diclac and paracetamol seem to constipate and bloat me to a point that I am woken with pain in my stomach a few times a night) Oxynorm 10mg morning, 10mg evening, hands the paper to me and makes for the door, opens it and says for me to continue exercise and then disappears down the corridor. I am left stunned. No telling me that I should make/wait for another appointment, ....just leaves.

I make my way down to where I see an open door and ask for directions to the Onco dept. I look at my cell-phone for the time and find I have been in with this BCN for 6 minutes in total. I vow then in my mind never to come back to this breast clinic.

Made my way to Onco-Man and saw the lady at the desk. I sat for only about fifteen minutes and was then weighed (ooooh don't those hospital scales lie their little digital heads off and put at least two kilos of weight on your poor little body every time! ) Onco-Man is ok, and I tell him of my interesting visit with the BCN - he asks if I informed her of her intimidating and aggressiveness and I tell him I didn't have time to do so as she disappeared so quickly and that I didn't dare say anything because I would have dissolved into sobs, given my emotional state right now. He is not pleased and says she needs to know. I agree.

I ask him how he would feel about removal of my remaining breast, as a preventative measure, bearing in mind that two of the cancer's found in the other one were invasive and agressive and can appear in the remaining one several years later. He said an outright no as I don't have the cancer bearing gene. I tell him how does he know that as I don't even know, bearing in mind that I am adopted and have absolutely no idea.

He starts to ask me this and that and I hand him my neatly types letter, asking for a transfer to the UK. He asks what support I will have there and I tell him. I also tell him that the hospital provide counselling in Southampton which I believe I badly need, and have a 'feel good - look good' program that I would love to attend. He says, puzzled, that they provide the same thing at this hospital and how did I get on? I tell him I have been offered neither. He is shocked. I tell him that Southampton has got to be better than simply being discharges and given two BCN appts, one of which he has already been told about and touched on the other, briefly. He asks whether the community nurse has been, given where I am staying (out in the countryside, a mile up a small mountain) and I tell him she came towards the end of last week, and had also been disturbed to hear of my non-support from the hospital. I also tell him I am running a lottery for me and several online friends, to see who would have been the winner as to when I actually would have started chemo, as I have been told....2 weeks time, twice a week meaning I have little life expectancy if that one is carried out) - 4 weeks time, once every three weeks and 6 weeks time, don't know how far apart and after an MRI. He is very cross and it is obvious.
He gets up from his seat, red faced and puts a hand on my shoulder and says he will call the UK now and for me to write down the address of my good friends in Soton as I will need to have an appointment for Southampton sent somewhere and can change the address with them when I have moved there. I hear his call from his office. He is very sweet on the phone to Soton hospital and it is obvious from his side of the conversation that I hear, that I am accepted. He returns and says he is very sorry about my experience at Cork University Hospital and I tell him that so am I and that the BCN's certainly don't seem in the right job and only add to my damaged emotional state. He is over-sorry, as I suspect that he thinks I may report the matter, but also seems to be giving me his support to report it, in a roundabout way.

He says he wishes me the very best in my journey through cancer and also to the UK and that he is sorry, again, that I seem to have been 'the one who slipped through the net....several times'

I walk out of the hospital, wondering what the heck the last few weeks have been and actually feel abandoned again in a strange way - though I am happy I will be going to Soton (14th July, night ferry - arriving 15th July in Swansea and the auld fella here Don, bless him) will take me in his van, with all my stuff).

Now to get a place to stay (friends in Soton are helping with that) and hope that Soton Hospital have a little more care than Cork University hospital.....oh well, I live in hope.

I am afraid... I have never lived in Soton, and I guess as I don't feel very strong right now, that I am a little fragile about going. BUT, I believe that I will have less pain and discomfort by the 14th and hopefully feel a little better emotionally too, so that I can at least feel better about starting this new chapter of my journey.

So ends my journey through cancer here in Ireland and a residency since 1994. I will leave the same way I came - by ferry - except not with my beloved pets this time and begin again in the UK while waiting and planing for my son and hope to God he gets to join me very soon.

The BCN called yesterday, Friday, to tell me I had an appt for an MRI next Wednesday at 9.am. Not looking forward to it as I have to lay on my stomach and have teh remaining boob poking through a boob-catcher for between half an hour and an hour - not sure how they expect me to be able to do this for that long, when I can't raise my arm up when laying on my stomach - oh well, again ours is not to reason why! I suspect they want to give me an MRI before I go off to Soton or were perhaps requested to do so from the Hoispital there - I don't know, all I know is that I'm afraid of being bullied again by Cork University Hospital and will simply not do what I am unable to do on Wednesday, and am NOT going to let them intimidate me ever again.

Probably won't know anyway, before I leave on 14th, what the results are and have asked Don to take any calls from the hospital after Wednesday - as I don't think I could emotionally cope with yet another visit with bad news, just prior to leaving Ireland.......toooooo much - I've asked Don to worm out of them, if they call, as to whether it is good or bad news. Good news can be given to me over the phone and he has promised not to tell me about any call after Wednesday from them if they won't tell him (bad news position taken by hospitals) and simply ask them to forward the report to Southampton and let me find out from them, after the move.

Blessings to all for as good a weekend as is possible for you, thoughts and prayers coming your way too - now and always, dear friends.

28 June, 2011

2011-06-28T06:46:33Z

Bad night last night... sobbing like a baby. Very difficult to bear all this and be alone. Dear old Don, the old friend in who's extension I'm staying in until I'm permitted to go to Southampton, is sympathetic enough for sure, but it's not quite the same as having a girlfriend to share with. Yesterday should have been the day that I went to Dublin to put in for yet another India Visa after the enforced two month gap that tourists now have...but of course I couldn't go. I'm not a tourist but it's the only way I could be there and stay with my son for these past ten years - so every few months I have had to leave. Before December 2009 it would have only been for a few days while I went some place to get another visa and return but since then, I've had to leave my little one for ten weeks each time and have the foresight to figure out when Christmas was and whether that next visa would cover it....I can't be away from him at that time of all times.

Only, this time has been different - I can't go back. So as far as I'm concerned today, my body has been hacked around, I've had to take chemicals I hate and my darling son is continents away. I don't know when I will see him again and just when, after ten blimmin years, we had absolutely everything together for his study visa to be applied for.

I am a wreck...talk about the 'down part' of this god-awful rollercoaster...I want to get off........NOW!

27 June, 2011

2011-06-27T07:37:22Z

Tired, muted and neither here nor there - might be a good way to describe the way I feel at the beginning of this new week. Doesn't everything take so much time? Or perhaps it's us, when we're sick and forget that hospitals are dealing with SO many others who are all waiting for results.

We want things DONE and we want them NOW! That's normal.....we'd like to have everything done and dusted within a few days and know where we stand with our lives - in reality it doesn't happen like that though eh!

I always wonder what is going on inside my body while all this waiting goes on - it renews, it multiplies, it does all kinds of things and not always necessarily nice things either. With cancer, things must almost change daily - cancer likes to do this - even if we don't initially know what it's doing, you can be sure there are changes going on.

Same old same old for the weekend and normally I would have got cabin fever being stuck on the mountain, but am almost afraid to go out now, for fear someone will bump into me and cause further pain or undo some healing that has taken place......feeling fragile I guess...

Remembering friends who have succumbed to this god-awful disease, Mary, Anne, Claire, Clare - and wondering where we will be this time next year......Oh too much - lets just get on with the day in hand and stop the miseries.

Wishing the constant nausenauseousnessd go away, and pains where I didn't know I had places...all causing my mind to work overtime in telling me that each new feeling or pain is a Met - some place in my body......

Got to phone the kidney man today and ask whether he has sync'd a treatment plan with the oncolgoncologist bet he hasn't :-) Sometimes I believe that as numbers only, and not names at all, that once we exit consultation rooms - that we are completely forgotten.

Please, once again, pray for little Charly. She is in France with her family on a 'trial' and was taken into theatre early yesterday morning with internal bleeding after going into shock. She is 8 for God's sake!!!

God, if you are really there and can hear us - help this little child who hardly remembers what living normally and without illness or pain is!

25 June, 2011

2011-06-27T07:21:58Z

OK, so I got to the hospital about 15 mins early - no mags to read and I am so fed up with cancer I wasn't going to get any of the well-read leaflets down AGAIN...

Just after 3pm, I heard my name and looked around to see my BCN. She came up to me and said
"I didn't know if you would come - I thought that even if you did that you would ask for another BCN and I am sorry about the way the phone call went and what I said - I shouldn't have"..... I just stopped in my tracks and gave her a hug and said that we all get bad days and I wasn't emotionally equipped to handle the phone call the other day and who can blame me after that young doctors appalling behaviour. We went to the room as friends again. She said my usual consultant was not there and that another cons would be seeing me. She checked the wounds, took out the drains (which I'm not too enamored about even though I wanted rid of one of them, as the other is still putting out about 70cc in total a day) BUT, she re-dressed and re-cling filmed - UGH how I hate that stuff, pulling, tearing, stretching and making me sore

It was then that I thought..........OMG what if the Consultant is the curly knob that informed me about the twice a week chemo cycle!!!! But it wasn't, it was another senior from the team. SO, I first informed him about the curly-knob-useless-piece-of-**it -excuse-for-a-doctor and said I wanted to punch him. He was appalled too and you could see from his eyes when he said "YOU want to punch him, no, I WANT TO PUNCH HIM AND WILL!" I did say that....." if he didn't do the job, I would come back again and again until I did and that he would take a week to be peeled from the floor and never have children"

OK, he had the results, which I had not expected.

In my poor old, (now of course, missing) boobie they did, in the end, find three types of BC and not two. The Cons said in all his time (27 years) as a consultant, he had never seen three types in one boob only, that it was rare and that usually, even though there may be the three there, that one might more usually be found during a second mastectomy of the other boob. In the end my poor little boobie had:

3xIDC (2.8cms and 1.9cms & 0.9cms)
1xDCIS (6.8cms)
2xILC (0.3 & 0.09) - not found until they sliced the poor boobie in the lab - (so that's where the so-called phantom pains were coming from - it was crying out to me from afar )

So, he asked if I would sign over my renegade boobie as they wanted it to preserve and use in medical students education - and as I didn't think I wanted to bring it home now, I thought it might as well stay on at the hospital ad-infinitum. He said that there were another three identified ILS which were so tiny and couldn't successfully be properly measured and that the students would have to find (or not) as they mostly only looked for DCIS and IDC in one breast (besides IBC of course which is more visible)and it would be a good teacher Well, apart from feeling a little miffed in that I had been told that my little boobie was great a few times anyway, but not by med students , I signed away rights to it forever (though it did cross my mind that my boobie might still be used and preserved even after I was in my grave - waaaaaaaaaaaaaaaah - a bit of me will be missing in my sarcophagus

NOW for the GOOD NEWS
NO FURTHER CANCER WAS FOUND IN THE LAST 23 NODES REMOVED WITH THE MASTECTOMY - NONE NONE NONE!
I have an appointment coming next Thursday with the Onc for an MRI/CT scan, and an ultrasound for the left boobie too, but the Cons said IF there are any mets that they would be so small and might not show up. BUT that the chemo would most probably see to them. I may not have to have so many chemo's (it had been put down as 24 on my records) as regular scans and something else I can't remember will be done. I will also not be having the chemo I thought I would as now it has to be re-thought. It'll begin in about 4 and a half weeks time and hopefully after that I will be ok for transfer to Soton. I will have Herceptin (17 @ one month intervals) and Taxol too and some kind of estrogen zapper for 5 years, but NOT Tamoxifen as I have totally refused it. They are ok with that.

For most of his speech I had a permanent grin on my face and my entire spirit lifted to a place I thought I would never see again. I AM ON THE FIRST STEP OF THE RECOVERY LADDER AT LAST!!! Now, I can tell my son the story (well, I will, after the MRI results) because hopefully now, we will have our happy ending. I don't even care about chemo any longer (though I suspect I will once it begins ) but you know what I mean.

What more can one ask for, no cancer in the complete axillary's taken from me and being told that I have so far - with God's grace, a marvellous prognosis! I was so excited that it took me hours to wipe the grin off my face. I kissed the doctor, hugged the BCN and did a gentle jig around the tiny cottage kitchen with Don and then monopolized the phone for a couple of hours. Went to sleep long after midnight and woke about 7.am - wow, I haven't done that for a very long time!

For all those who didn't get good news this week and the weeks to follow, my heart is with you - believe me, and always will be, because like the rest of you here, I also walk this walk and even though there was good news for me today, it's very much in my mind as we are still on the walk and will never quite get off this pathway because we continue walking with those who have just begun it.

22 June, 2011

2011-06-27T07:20:23Z

Appointment on Friday at 3pm for hospital post-op silly bra fitting, wound and drains check..and hopefully results - though I'm not holding my breath. Will also find out when chemo will begin and when I can start the transfer to Southampton, I hope.

Feeling low and sore, of course, up and down periods all day long. Miss my boy like crazy, it's been almost two months now and I should have been making my plans abut my return to life in India - and the study visa - but they have gone askew right now. Please say a little prayer for my son. Please God it won't be months til I see him again - it wont help the emotional part of the healing at all to be without my child. Have to call him Thursday....tell a little bit more....not all....not sure yet what I'll say....have to remember he is alone and shouldn't have any worries like this, although he knows I wont be back on time, he doesn't know when, yet.

I won't be able to go back to India to live, I know that. I won't be able to close our life in our house and pick what I wanted to keep and cherish and bring to the UK. I don't even know whether I will be able to bring him to the UK myself if he gets his visa (friends in Soton are working on this now) or whether all of the above will have to be done by someone else.

Someone said to me yesterday, when talking about something in their own life, that there was always tomorrow.......I replied that that was not a certainty at all because I am proof of how things can change in a heartbeat - and suddenly your entire world goes haywire...

Cancer is no respecter of persons !

19 June, 2011

2011-06-27T07:19:19Z

Home yesterday afternoon. Sore, achey and right-boob-less, but it will come ok in the end. Just need to rest up a little now!

Thanks for the love and prayers...

14 June, 2011

2011-06-27T07:18:37Z

The Embassy refused to give me clearance to go back to India for five days - even though it is only ten days until my two month enforced gap between visa's is over.

The hospital called while I was on my way back from Dublin and asked that as I cannot go back, would I please come in for Mastectomy surgery on Wednesday.

I have today only, to call my son, on the blo*dy phone an tell him the truth...on the phone, whilst he is 'alone'. I have no idea now when I will see him again. On Friday he told me how many days/hours it was until my proper return on July 9th early morning, now he will also have no idea - no light at the end of his little (massive to him) tunnel and worrying about his 'mummy'

There's much more I could write about how I'm feeling - but cannot. I am in a very dark place and don't want to see or take calls from anyone, especially as I have to make this call today. I won't be able to answer his many questions or hold him and love him and cry together during the planned few days visit or give him courage and stength to go back to the children's home - Indians do not hug and hold, it is alien to them or that's the way they make one feel. I wont be able to sort out our house - and when the rent runs out, if no one has manages to visit and sort things out, our things will be rummaged through, people will take what they want and the rest will be dummped in the field next door. This is how it works in India, believe me - even for Indians. Our life is in that little house

I go into hospital tomorrow to have the offending breast off on Thursday morning and axilliary nodes removed completely. Right now I don't care a jot, I have no feelings about it, thats one way about how I feel, otherwise not one way or another except that if the entire breast + is cancerous, as they think, I would happily do the surgery myself this morning - perhaps then my feelings would have an outlet - in seeing the pain that my heart is going through. There'll be a PET scan too, so they can see where this invader has spread to. I have no idea when chemo will begin.

I had wanted my son to see me looking relatively well and still with hair before all this began. Not to be. To say I am angry, very upset and deeply depressed would be an understatement.

For ten years we have prayed, for ten years our world has fallen apart bit by bit, prayer is no longer for me and God, whoever he is, long ago abandoned us. I will do as many others in this world and go my own damn way, they have happy lives and I can't remember the last time we were happy for more than five minutes before someone or something put the kybosh on it, for many many years.

Again, yesterday, I had SO many people telling me what to do, even down to half making arrangements for MY son with no consultation from me whatsoever. The day, as you can guess, ended very badly, with me screaming at them to stop it stop it stop it.

I need much heart and positivity to make this call to my son today and not sure if I can pull it off.

10 June, 2011

2011-06-27T07:17:50Z

Ok, not good news.

The report and meet today showed me that they found and removed the 2.7cm invasive tumour, and dug a bit deeper and found a 6.8cm invasive too. Microscopic clusters in nodes that they removed too. So it's stage 2, grade 3. (I was fearing stage 3 - so I thank God for that)...found a couple of tiny DC's in situ & thank God, 0.06 & 0.70 mm only and not about to 'break out'. She told me it is potentialy life threatening and not to forget that at all.......and of course the mastectomy now, followed by Cyclophosphomide/Adramycin(sp) & Taxotere chemotherapy, along with Herceptin for part of the chemo treatment in 6-8 cycles = 24 altogether. If a scan reveals a diagnoses of NED (no evidence of disease) after, I may not have to have radiotherapy, but have hormone blocking treatment for 5 years afterwards until a hopefully, NED is completely obtained, please God.

I am in a different land right now and the shock has not hit me....but then again I did prepare for the worst, whilst hoping for the best. Mets - they think - doing a PET,MRI and bone scan when I come back .... BECAUSE

.............. they have given me written permission to go to Dublin Indian Embassy on Monday (I go up on Sunday) and get clearance to return to India prior to the two month usual gap required & get the visa, hopefully the same day, and to stay until coming back on the followng friday. Thats the 19th, arriving on 20th, and leaving again early mornng on 24th not a nice trip for a few days (13 hours each way from Cork to Chennai with a quick change at Heathrow T5) - about 15 hours travelling time I guess, in total...but my heart will rest more easily when I have had my son on my lap and told him with love.

Then back and mastectomy the following week whilst still getting over the jet lag (which seems to affect me more now I'm....older...hmmm) & a much broken heart at leaving my son again

I've not come down to earth yet, so I' thought I'd write it up now. Tomorrow mght be a different story.

She said also that she had neer seen such beautiful healing of the lumpectomy/node removal sites in her life (thank you Essiac & God and all the prayer) Feel very sore, and unsupported a bit now with the dressings off, but it's nothing I can't get over...if my son can feel happy and get on with his life with all of HIS profound disabilities, then I would be a poor mother if I couldn't get on with the changes arising in my life. My son is my strength and courage.

...too much to focus on right now with Dublin/India coming up.

Blessings to you all this day...this would be a very very lonely journey without you.