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1761

BAD BAD BAD NEWS

You all remember my nephew Marc with the tumor (and cerebal palsy)
He ha been in and out of hospital since then my sister Cheryl got some antibiotics for him last week as his breathing was bad,he was getting worse the next day so he was admitted to hospital but they have said it’s not a infection but it’s his heart.
He is on oxygen and different meds but none of them have worked so they gave him one more lot of medicine and have said if this doesn’t work then there is no more they can do for him.

My sister doesn’t talk to my mam my auntie doesn’t talk to my mam so my sister won’t let my mam see Marc,I have been trying to get cheryl to let mam see him anyway on Sunday Cheryl said to me that I could tell mam that se can see Marc.
But there were some guidelines to follow …

  1. that my mam was not allowed to visit Marc while Cheryl was there.
    2)that my mother was not to talk to others about her (cheryl).
  2. my mam was allowed up to hospital after 4pm yesterday.
    So I told my mam this (not about the conditions though) then my brother rung my mam telling her (mam) that Cheryl said my mam was not allowed up till 6pm now,then yet another message later on saying no visiting at all allowed on the Monday now.

Then at 6;20pm my mam got another message from cheryl via Paul my brother saying she said (cheryl) that they (mam & dad) can go up now till 8pm my mam said she couldnt get the bus and she hadn’t had a wash to which Paul said your grandson is dying it doesn’t matter if you haven’t got a wash just go,to which she said BUSSES!! so he said TAXI,anyway my mam didn’t go cos she said by the time she got there she would have to go cos it would be 8pm and cheryl would be back.
So my mam never went which really annoyed cheryl even more.

Anyway I spoke to Cheryl last night and she said are they coming up?
I said no,I said they are going first thing in the morning,cheryl said no there not,I am not giving them permission, so thats all I knew now all last night I was thinking about Marc how much suffering he has had all his life,I remember waking up from a dream about Marc.

I got my kids up this morning at 7 am I went back to bed and next time I looked at my watch it was 3;30pm (time for Owen to come home!)
My phone was ringing I picked it up it was my mother she said " can you do me a massive favour" I said “what” she said " well cheryl has rung and she said we can see Marc",so I said “good” then she said " there is no buses well the number 13 is not running and the 16 is only going from town (town is what we all the top town shops bus station etc) so I said " what do you want me to do"?
She bellowed “I’M JUST TELLING YOU” I never said anything she said " a taxi will be 1 hour" there has been loads of accidents" I said " why has it been icy"? She said and Jake is coming at 5pm (it was 4pm then) " will you ring Cheryl and tell her "
I said " why didn’t you get the bus from town"?she shouted OH IT DOESN’T MATTER I WILL ASK PAUL" then she put the phone down on me!!

This is why evryone doesn’t want anything to do with her! god she blows hot and cold constantly.

I had a message (text) from Cheryl it said Dale is coming home from the army (dale is marcs broter).
I rung Cheryl she said they have said she can take Marc home tomorrow , I said " oh good " but then I clicked on to what she meant to die,I was crying throughout this call, I had woken not 10 minutes since with one almighty headache (probably stress).

My mam rung again later and said " everything is sorted now" I said good,and I said please don’t shout at me it’s not my fault all this is happening, she said DON’T YOU START THAT AS WELL (she meant cos Cherylwon’t talk to her), I said " I’m not you did shout at me she said well I was in a panic".

It’s horrible watching Marc go through all this I have been crying since I have got up,I’m trying not to think about it but my mind wanders back to Marc.
So now it’s just waiting for him to die aged just 22.
Marc has a special place in my heart he was the first born in our generation and he was also the first born after me & Cheryl had our stillborn baby boy’s.

My friend Christine came yesterday she has just finished chemo and is due to have surgery next it was booked for 6th Dec but she has had a message saying her op has been put on hold as she said she needs a CT scan (she had one at beginning like all of us) as she had had a xray and so now they want her to have another CT scan,she’s worried sick now.

Did I say I had been to see Derek Acorah?? yes I did he never came to us but after he signed for people who wanted his autograph and I had a photo done with him !! hehehe lol xx

1762

Caron,

Going to write properly tomorrow and we’ve spoken. I am so sorry about Marc, just hoping he doesn’t suffer too much. Sending you both good thoughts.

Victoria xx

1763

Caron,

So so sad to hear about Marc. I know how fond of him you are. It is enough for you to go through, without family making matters worse and creating more problems. I don’t think family are the most sensitive at times, mine have given me a hard time in the past. My thoughts are with you right now.
Kathy

1764

Caron

Life is tough sometimes. I was so sad to hear the latest news of Marc. I sometimes think that family are the hardest people to deal with and yours sound like no exception. Sending you all my love

Take Care

Eileen

1765

Hi Girls

Thought you would be interested to hear my surgeons latest opinion on my never ending seroma.

He wants it drained again under ultra sound and then a tight dressing attached to try and stop the fluid refilling the cavity. When I asked if the final surgery option was always successful he replied with perfect honesty ’ No-it really will be a case of do it and pray!’

I have been in clinic every wedesday afternoon for the last 4 weeks, it begins to feel as if this problem will be with me forever.

Good news is the oncologist doen’t want to see me now for 3 months, and in fact has said that her part of my treatment is done, only get in touch if I suspect a further problem.

Take Care

Eileen

1766

Hello ladies,
I meant to write yesterday but was feeling the effects of the swine flu jab: aches, pains and general lethargy. I set off for work in the morning but in the end turned back as I thought: I’m not feeling well and I need to put my health first. The work life balance thing can be difficult at times, but reading posts on here, particularly those from Debsincornwall remind me that it is important to fill our lives with good things and good thoughts as we just never know what happen somewhere down the line. All too often I find the kind of wisdom Debs imparts is learned to late; and wouldn’t it be wonderful if we were all as wise as those who have already lived through a particular experience. On a lesser scale there is the hair loss issue. So many ladies lose their hair on chemo because they do not know about the cold cap, or do not think it will work. But having lived through the experience and used the cap, I would do so again, because it removes at least one unpleasant occurrence that happens with this disease.

Time seems to have flown by this week and my travels from last week seem an almost distant memory. The last six weeks before the end of the year are the busiest times at work as it seems everybody is trying to cram as much into the diaries as possible, in the fear perhaps, if we don’t do something this year, it may never happen. It is about immediacy and the present. The whole cancer diagnosis and living in the knowledge of the disease certainly makes me think far more about achieving those things that matter, but now I look at some of the meetings and think: I’m not sure what the purpose is here; or where it lead to. The disease seems to sharpen the mind, once the fog of chemo has lifted.

I have not been coping too well on the hormone therapy and now take three drugs for this, making a grand total of five different drugs if I include the two for asthma. I think I escaped the hot flushes and the extreme temperature changes on the chemo and now I see what you all mean. The evening primrose oil produced a nil effect so now I’m on these sinister looking tiny blue pills called Clonadine. The list of side effects is scary but I will stop if I start experiencing: hallucinations, extreme depression or hair loss. In the meantime I hope they alleviate the temperature issue, as it is making dressing in the mornings a nightmare. Too many clothes and I fear I will melt and too few and I wonder whether I will be heading for hypothermia.

On the travels last week: I enjoyed part of a morning in Manchester before a meeting. The city has gone through a sympathetic regeneration programme, and there are still handsome terracotta buildings as well as some wonderful new ones. And it is good to see the trams running again through the centre. I went to Primark which is the largest branch I know of in the country. I tend not to buy the clothes but I do love the accessories, sparkly tights, scarves and gloves. I bought a fluffy pink scarf for only £2.50 and some gold lurex tights for just £6! We also go to the shoe department to look at the outrageous designs, and not quite sure who could ever wear the six inch heals and platforms almost to match. OH encouraged me to try some on as we were both curious as to whether they actually could go on to a human foot. And my conclusion was: I’m not sure they could. But of course some women must like them or Primark would not sell them.

Last Thursday I travelled across from Manchester to Newcastle for a “Narrowing the gaps through leadership conference” organised by a local authority. The event was inspiring and the authority managed to attract almost every headteacher. I do like to get out and visit teachers and schools where I can, as it makes my work seem more real somehow. In the evening we went out to The Gate which is a big shopping complex that includes a fourteen screen cinema. We went to see Paranormal Activity which was a big hit in the US grossing billions of dollars and was made for just 11,000. The principle was scary but I was less convinced by the execution of it. I’d recommend it though to someone who enjoys films of this kind. Afterwards we went out for a meal to an American diner where they played hits from the 1950s including lots of Christmas tracks. I enjoyed the meal but for most of it was going through a ‘cold spell’ so had to keep my coat, scarf and gloves on which I’m sure the other diners thought was a tad eccentric. On the Saturday morning I went to look at the stalls of the German Christmas market in the centre of Newcastle on the corner of Grainger Street, near the column and close to where the lone piper stands. I bought two bead bracelets from the market that look like they are made from liquorice allsorts. One was for me and the other is for my friend C.

I have watched a few programmes on television this week which I’ve enjoyed. I tend to have the television on in the background if I’m working - which has been a lot this week especially when I was writing the newsletter. I really liked the Delia Smith Christmas programme where Delia revisited her favourite seasonal recipes from her iconic series which must have been shown about 20 years ago now. I am planning on making the Caribbean Christmas cake which includes tropical fruit, though may not add the marzipan or icing.

And I was gripped by a programme on BBC4 about ghost stories on tv which showed clips from various dramas, documentaries and films that have been shown on the channel over the years. They showed footage from Ghostwatch - not sure if you remember this which was a mocumentry featuring Michael Parkinson, Sarah Green and a family in a haunted house in Enfield. I won’t write too much about this - but you might want to look it up on wikipedia which gives an interesting account.

Today I am going out to look for Christmas cheer in the way of shopping and decorating the tree. I am grateful that I can do these this whilst I know others are not so lucky.

Caron I am hoping everything is okay with you and am worried about you. Derek Accorah featured in the BBC4 programme about ghosts. I really want to come along to the next one you got to where he’s present.

Thinking of you all and hoping that you can enjoy Christmas a bit more this year, as last year I think for all of us was all rather a nightmare.

How are you coping Jo on the Xoladex: here I am just now with the fan on!
Gail I imagine you are being taken up with all things Kai and Christmas
Andie wish I had your card making skills. They’d come in handy just now. And I hope the new approach to the seroma works. I’m on that three month wait now too!
Kate enjoy your curls, from what I’ve read they eventually grow out.

Lots of love

Victoria xxxx
Our February meeting is something really lovely to look forward to in the new year!

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No won’t be a good christmas again, Marc has died on 4th of phumonia my sister said she knew that would take him he’s had it so many times.
It was cos of the tumor pressing on his heart though,Cheryl held him as he died.
One thing at least the poor sod will suffer no more,he’s had such a tragic life.

My mother isn’t one for tact never has been she’s never been very maternal and thats why Cheryl can’t understand her.
love Caron x

1768

Oh, Caron love … so, so sorry to hear your sad news. How devastated you must all be.

I always pick up on your posts 'cos you seem to have a similar sense of humour to mine, but not tonight sweetie.

Hope you all manage to find some peace, like Marc has now.

Take care lovey, xxxJacqxxx.

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Caron, we’ve spoken and you know I’m thinking of you lots. At least Marc’s not suffering anymore, that’s the best I suppose you can think about it. And hoping the herceptin tiredness wears off soon.
Victoria xxxx

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Caron,

I’m sorry to hear your sad news.

My condolences to you and your family.

Kathy

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Caron

I so wish, as friends ,we lived closer to be there when you need a big hug.

Marc will suffer no more. You and your family must hang on to that.

Take care, phone if you need a chat

Eileen

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Caron, thinking of you and your family and i’m so sorry for you all for your loss particularly as it is so close to Christmas! It was supposed to be a good one for us all this year?? Life is so cruel!

Lots of Love

Jo XXXX

1773

Caron,
So so sorry to hear about Marc. So tragic. Sending lots of love.
Gxxxxxxx

1774

Hi girls,

Just a quickie. Very sudden decision to go to Spain for a week. We’re
going tomorrow morning and won’t be back until Tuesday. In case I don’t get round to my card writing today I’d like to wish you all and your families a very happy Christmas. I’m sure we’re all hoping for a better year next year.
Love to you all,
Kathy

1775

Hi

With Christmas approaching I thought you could do with a laugh, or a smile at least. Hence the picture of me dressed as a clown. It was taken a few years ago when OH and I were heavily involved in a fund raiser for our local hospice.The community came together and we raised over £25,000.

I hope you are all keeping well and looking forward to the Christmas and New Year festivities. This time last year I was on Tax, just started Herceptin, had no hair and was suffering from a cold which caused me problems right through the holiday season. In fact I had no reason to think I would still be here a year on.But here I am with no ongoing appointments for the next 3 months, hair regrown, Herceptin finished and next years holiday booked.

Really looking forward to Feb. to meet up again.
Take Care

Andie

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Eileen,

What a fab pic! It made me smile, so glad that all is well with you. What a great fund-raising amount, really impressive. I too have been thinking a lot about where I was this time last year - just about to start 6 chemos and absolutely terrified. This year I’m back at work and have regained a certain amount of normality. Oh, and the hair growing back has been soooooo exciting! Tears never seem to be far away though but I count my blessings every day. Christmas is a really emotional time anyway but it is nice to be able to get into the spirit of Christmas and actually look forward to it.

I wish you, and the family, and all the lovely ladies on this thread a good christmas with your families - and who knows it could even be a white one! That would be just great.

love Pat x

1777

Hello all,

Just wanted to wish you all a very Happy Christmas! I don’t have your addresses so haven’t sent any cards…although always so disorganised I might not have sent them anyway. kai and I make them and don’t send them!!

Saw Kai as a king in nativity last week. The tears flowed. This time last year, I had written myself off. I’m so emotional this year. I thank the lord and the medical profession that I am here. This time last year…sick for Christmas…in hospital for New Year!! Hoping not to repeat that this time!

We are staying home for Christmas and off to Norfolk for New Year. the house has more fairy lights than one girl should own! But… I am just giving in to my inner sparkle.

Steve off work now, as took him 6 hrs to get home last night (a 45 min journey). We don’t want him stuck anywhere as he is cooking Christmas Day!!

I think about you all often. I know we are having up and down times and there has been some very sad news this year and more recently. But I hope there will be a moment for you to find some peace over Christmas… to feel good that we are still here! We may look different … we may have bits missing…we may have poodle hair… we may not be able to lift our arms… we may have raging hormones, headaches, back aches etc etc. (Or is that just me??) But we are still us. Grab your loved ones and give them a big hug and lots of kisses. Grab strangers if you like…just don’t get arrested!

Thank you my lovely girls for being here. Looking forward to seeing you all very soon.

Many Christmas kisses to you all,

Love,
Gailxxxxxxxxxxxxxxxxxx

1778

thankyou all for your thoughts over Marc,don’t want to dwell on it as it’s nearly crimbo and a good posibility it will be white!!

I have done most my crissie shopping maybe a few bits and bobs to get and the big food shop to do.

Cass this time last year I had just had my first EC (horrid horrid stuff that!).
Can ppl answer this question pls…
How is everyones hair now? ie do you have to shave under your arms?
Just asking cos I don’t have to shave both arms.
My hair every morning looks like I have had a 10000 volts running through it every night!
I have only had to shave my legs twice since chemo which is now 7 months ago.

My friend Christine has had her mx now and I went to see her last Saturday, she was very pleased to see me she is recovering well (she looks better than I did at that time!).

Well we had some wallpaper for the kitchen well it did have artex on the walls (bloody stuff who invented it? they need a good slapping!) so it’s took ages and ages to get it off the walls but then it was getting too near xmas to do it but I finally got round to doing it yesterday (can’t move now I might add!).

Ooh yes I had some spotting last week I am wondering if my periods will return?
I was sure it didn’t matter if they did for me as I am only ( I say ONLY!)her2+ but Steve wanted to make sure as we don’t want to take any risks so I asked my nurse and I am right it doesn’t matter to me.

Now for another question can ALL ppl who read this answer if it is relevent (ie has been over or abouts 1 year from dx)
Is it the rule that you have your first mammagram after 1 year from dx???

My BCN told me I needed one as it was 1 year (nov) but when I saw surgeon he said my first mammagram will be next September, so now I don’t know who is right? if she (bcn) I need to be chasing it up.

Swine Flu jab first I wasn’t getting one as I wasn’t in criteria (yeah right, nice try!) then I got told I could have one (nice of them to let me have one)when I had it I was asked did I get told I needed a second vaccination I said all I know is I need one,she said she might be contacting me again about the second dose (I only heard of ppl having one)anyway it appears we do need 2 so everyone who has had chemo you need to follow it up if you haven’t had a second dose.

V I am not certain if it has to be a certain time scale or not, I was told it was 3 weeks though.

I am still having lots of trouble sleeping (actually that’s a lie it’s waking up I am having trouble with!) I could sleep and sleep and sleep if left alone I was told it’s still from the chemo and could be 18 months after finishing it.

This time last year I remember Shelly saying 5 more sleeps to go 4 more sleeps to go etc etc I asked what was she on about and she said she is pissing her pants to me (makes me smile that).
love caron xxx

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hahaha I always knew I would be famous! (pic)

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hi caron,I had my first mamograme one year after treatment had finished.It may of course be different in other areas.Hope this helps. Best wishes mel xxx