hair loss???

Sounds as if you had a busy day Caron. I’m thinking of following your ethos when it comes to food - just one meal a day, anything you like - and you are bound to lose weight, because even the most calorific of meals is bound to come in fewer that 1500 calories. I read once this is how Cliff Richard maintains his weight.

I cannot write too much now as in a monthly work panic mode - newsletter time, and I’ve not even started yet. Aches and pains I’d been suffering last week seem to have subsided though. I’m putting this good development down to forcing myself to take a capsule of cod liver oil every day. One burst in my mouth yesterday - and the experience is not one I’d like to repeat again.

Yesterday we went to Great Comp garden in Kent (not too far from Sevenoaks). It is one of those hidden-away kind of places but once you find it, it is a real gem. The garden was created and maintained by a Mrs Heron Maxwell for 55 years. She was an ardent feminist - and you can really see that in the design. It lacks the flounce and frothiness of Gertrude Jekyll and Vita Sackville West’s creations. Instead there are clean lines, lots of impossibly green velvety lawns, fir trees clipped into streamlined shapes and the occasional purpose built folly: a temple, a ruin - just to add interest. There are two fine long borders though of perennial favourites, cardoons, dahlias with deep red flowers and black stems, ornamental yarrows in yellows and pinks, and pentstemons in bloom indicating that we must be beyond mid-summer. The garden reminded me of those classic and inviting railway posters of the inter-war years - enticing the traveller out to the country or new suburbia for the day. Mrs Heron Maxwell was an energetic figure - a suffragette, a campaigner for women’s sport - she held women’s cricket and hockey competitions on the lawns of Great Comp, and was the first chair of the Kent branch of the Women’s Institute. But in the event after 55 years of doing all that she could for women’s rights and maintaining her stylish garden - a final determined visit to see her deep blue flowering Gentians in her bath chair proved too much and she died. No doubt happy though - for the blueness is a sight to see.

Have a good day ladies.

Bright xx

Ohh well I can write loads! god I am fuming!!!

I remember saying to Steve during chemo " I bet after I have surgery people will just presume I am alright now"!!

It’s my Dads birthday next Wednesday anyway my mother came last week and said she was ordering a cake for him, she left an envelope here sealed up, anyway for some reason my mam hasn’t been for 4 days??
You might think this normal but when she has been every day since dx I am wondering why she hasn’t been , there is some trouble going on but nothing to do with me, I try and stay on the side lines.

Now I’m sure my mam is losing her marbles? as often she thinks she has told you something when she hasn’t.
Steve is away from tomorrow morning till 12pm tuesday night.
Ive been wondering about this envelope? I said to Steve I bet she thinks she has asked me to sort the cake out??
But she hasn’t!!!
Now it is late in the day and she still hasn’t been?
So Steve opened the envelope up (I knew it had the photo inside what she wants putting on the cake)
There was also a letter to Asda staff it said…

Large photo cake trimmings of your choice for 28th July
MY DAUGHTER WILL PICK UP IN THE MORNING !!!

Well I’m sorry but I can’t carry the cake can I ???
Besides this she hasn’t even asked me!!
Let alone this there is no money for it in the envelope and if I am picking it up who do you think will have to pay for it? also she wants me to get the biggest bottles of asti she hasn’t told me how many? and again left me any money!!
I knew she would now think I am back to full health, the poorliest person in the family and she expects me to do her bidding!

Anyway besides all that my boob has gone hard where the blood/water is and still the big dent from what ever I wear is this right??

A very confused a cheesed off Caron xx

Caron, you say she thinks she’s told you something when she hasn’t - how old is she? I know we all tend to get more forgetful as we get older but it’s possible she IS “losing her marbles” - may have early-stage dementia. That can be extremely frustrating for all concerned, but it’s no good getting angry with her - she can’t help it. And one of the most frustrating things that happens is that she’ll seem to be lying, making stuff up - but again, it isn’t deliberate, it’s just that the brain fills in the gaps (this can get pretty bizarre!)

Of course she may have always been like this, but that doesn’t mean that early dementia isn’t making it worse. If she has it, you will need to change your life-long habits of how you behave with her. “Sitting on the sidelines” and waiting for her to remember to tell you something will just lead to more confusion - you need to speak to her, remind her it’ll be quite a while before you get back to your usual self and able to do what you used to do (repeatedly if necessary) and explain what you can and can’t do. In fact, maybe you need to do that anyway.

Mums, eh? Mine had a bizarre obsession with ironing everything. Took me years to stop her offering to iron my woollens whenever she came to stay!

Sorry you are not having a good day Caron. Hope things improve tomorrow.

Bright x

Ohh Susanne if only you knew!!

No it’s not dementia more likely that her brain is pickled if you get my drift??

Sometimes she thinks she has told you things when she hasn’t.
I didn’t want to just ignore the cake just incase she did think she had asked me to do it?

Anyway we did get the cake later my mam rings and mentions the cake I said the thing is mam we have got the cake now cos I didn’t know if you thought you had asked me to.
Do you know what she bellowed down the phone???

WHY THE HELL WOULD I WANT THE CAKE NOW!!!

God I give up! can’t bloody do right thats for sure!
I explained the cake is alright till middle of August.

Back to normal now then ! me being shouted at, only it hasn’t happened since before dx.
Oh well I will consider myself well and truely spanked!
love Caron x

Hi girls,

Victoria, you,ve inspired me to go to Great Comp. I’ve looked on their website and it’s not far from me. I’d like to take my friend, she’s been so good to me with all my problems. She’s off on holiday
on Saturday, then I’m going to Ireland so hopefully will fit it in before then.

Caron, I totally sympathise with you. My counsellor phoned me on Friday to ask me why I’d missed my session on Thursday. I told her that she’d cancelled it. No she said I’d just misunderstood.
I was flabberghasted.

She’d written her holiday dates down for me and I’d put it in my purse. I’d cleared my purse out on Wednesday so I couldn’t check.

When I was tidying John’s work papers away yesterday, the slip of paper had fallen in with them.

Lo and behold she HAD cancelled. And I’m the one seeing the physciatrist!

The trouble is you end up feeling as if YOU’re going mad.

Andie have you started your counselling yet?

Suzanne, how many chemos to go?

Gail and Jo, hope you’re enjoying your hols.

I’m looking forward to Ireland. The mad red headed Irish woman is visiting her family and taking me with her.
Whenever I go anywhere with her, it ends up a boozy session. Her family are great, they’ve sent me me cards, rosaries, holy water, candles. Such kindness!

She’s inLake Bled , her son got married there yesterday. She didn’t invite her two best friends!!! So V and I dressed up, big hats and all, took champagne and glasses to Chipstead lake and sent her a photo of us enjoying ourselves.

Surgeon tomorrow, yoga Wednesday, counsellor Thursday. Horribly medical week!

Love to all Kathy

Been to hospital today to see onc he was pleased and he did say “you are basically CURED”!!
I thought they never used that term specially so soon?
I said whats my chances of it coming back in the other breast?
He said if you get it in the other one it will be a totally different cancer, it’s very unlikely to go into the other one but he said if the same one came back then it would go in the same place or somewhere else in the body.

He is putting me forward for a trial on herceptin either I will have herceptin for a year or 6 months.

I think it’s because the herceptin damages the heart so they are trying to see if 6 months worth is as good as a year to reduce the effects on the heart.
Wonder when I will find out if I am 6 months or a year?

I am now waiting to hear about radiotherapy he said it should be in 7/ 10 days.
love caron xx

Well that was encouraging from the onc Caron. That must have made you feel good too.

I saw the surgeon this morning. I had a long wait, but it was worth it.She was very thorough and efficient and spent ages explaining and drawing pictures for me. I was tohave had LD like you in the west country.

I’m now having two different recons.

Onthe non cancer side I’m having a LD and as soon as poss.
Onthe other side I’m having a DIEP but not till a year after rads.

Its amazing how these doctors differ. I’ve got to see her colleague for his opinion, but she says she wants to do her best for me. I can’t really argue with that, can I?

Its been a tough year and I really wanted it all over and done with by 2010.

Hi

Really good news Caron!!.

No Kathy I haven’t seen the counsellor yet, evidently she is on holiday. I did go to a support group meeting on Friday but have mixed feelings, I think I would have benefitted more if I had gone earlier.Most of the people there are much earlier in their treatment, I felt a bit of a fraud still getting upset easliy when I have finished active treatment when they are still dealing with it.

Andie

Andie,
Don’t beat yourself up about getting upset, you have to deal with your feelings and not worry about everybody else.

Ihave days when it’s ,oh so difficult. The BCN was so nice to me today that tears came into my eyes. I’d felt ok before.

Don’t give up on the support group yet, as you get to know people I think it’ll be easier. But you might find that the one to one counselling will suit you better.

In a way I think finishing active treatment is quite hard, you perhaps aren’t in shock, but you end up focussing on yourself and not rads or chemo etc.

I’m off to Ireland on the 13th for 10 days, but if you are up to meeting before or after just get in touch. I’d love to see you.

Love Kathy

Glad you are going to Great Comp garden Kathy - I’m sure you and your friend will like it. And hope you have a lovely time in Ireland. Just wondering now whether I’ll be asked to wait a year for stage 2 of my reconstruction - as I’d thought the surgeon said a couple months only. Seeing him in September so I’ll ask then.

Good news for you Caron - well done. Speak to you soon.

I’m having to stay up tonight for a while with work - so cannot write more now. Tomorrow is my final rads sesion - just as well as skin is now becoming itchy as well as sore - especially the area above my collarbone.

Thinking of you all.

Bright x

Hi Bright,
I’m sure if they told you a couple of months I’m sure that that’s what it will be. Each surgeon seems to have their own preferences, and when it will be done.
Underno circumstances would Taunton give me immediate recon like Caron, but would give me both recons this autumn.

Maidstone, will give me Ld fairly soon,on good side. Have to wait another 10 months for DIEP.on cancer side. Longer op but better for me including fat off my stomach.
She won’t do Ld on good side, because of putting expander in
treated breast as it could (probably won’t) encapsulate ang cause problems in the long term.

She and her husband work in con junction with each other at Maidstone.

They will not do unnecessary breast surgery. She asked why I had my good breast removed. It was purely for prophylactic reasons. I don’t think they would have done both for me in Kent.
Apparently they are one of the best in the south east. I have been impressed by the BC team and feel confident they have my best interests at heart.

Not long for the rads to be finished now, have they given you any dressings. My skin got very scabby and it was so sore when it rubbed on my clothes. The dressings were brilliant.

Speak soon Kathy

Hello Kathy,

Skin seems more or less fine so far - just a blister near the top of the collarbone that looks to be healing.

I’ll write more later - as got deadlines today for work. Sometimes I think now it would have been nice to have some proper convalescence time!

Love

Bright x

Hello us who are left behind!! (poor us!!)

Been to see BCN today for more drainage 225mls I asked her for path report she said we don’t usually give them, but she did take me in her office and read it out to me here goes(all good news)

Firstly I was a grade 3 (not 2 as previously stated, as she said that fits in with being her2+)

I am ungradable now as it regressed.

I had 15 nodes removed and not 17 (that was Steve’s fault, I said it was 15 then he added the 2 that were involved).
Also 1 had fibrosis (does anyone know if fibrosis can turn cancerous?)

Clear margins of 10mm (phew).

All in all she said I had a good prognosis and also that there are some cancer’s that are not responsive (like poor Shell’s) some are moderate in response and some are fully responsive like mine.

V… I asked her if my cancer was weak (sort of what you said) as it responded well and she said no I had an aggressive cancer just that it responded well.

Got to go back next week for more drainage, and also I have an appointment next Wednesday with the radio therapist dr.
love Caron xx

That’s good news about your report Caron. I often think whether having chemo before surgery would have given more information on my cancer’s level of responsiveness to drugs. You were lucky to respond so well to the chemo, and poor Shell was at the other end of the scale.

I have been down in Rye for the last two days as the decorator wanted to collect a key to the house. I did spend much of the time working though as suddenly got a whole series of deadlines to meet. I don’t mind though as it has been good to take my mind off the disease.

We have been staying in the Ship Inn near the quayside - and there are some interesting bric a brac shops next door housed in former fishing net huts. My favourite was a old kitchen store - and I bought several cookery booklets I remember from my childhood including ‘Cooking with Stork’ margarine.

Last night I ate samphire for the first time - quite pleasant, which is a green plant that grows wild at this time of year in the marshes on the outskirts of Rye. I do like to try new things when I can.

Hope everyone is okay… looking forward to a holiday soon. Still not booked anything yet.

Bright x

Hi Girls

Had another appointment today at the seroma clinic. I was seen by 2 BCN and they both agree that a seroma this long after surgery and rads is very unusual but not unknown. They have referred me back to the surgeon again because they believe the time has come for it to be drained under ultrasound to make sure it is drained completely. It could well immediately reform and then is the time that I will probably be expected to just put up with it until it reasorbs back into my body. That could take months but the BCN has never heard of one not reabsorbing. They have yet again tried to reassure me that seromas are a nuiscance but not sinister.

I have also finally heard from the counsellor attached to my cancer unit. She only works on a friday and has given me the 9am appointment next week. I will go loaded down with tissues. I am getting so annoyed with myself every time I dissolve into tears. I am not depressed, just terrified of the responsibility of being alert to any possible problems. This poor lady has no idea what she has let herself in for agreeing to see me!

Bright you make Rye sound lovely. I think I will persuade Peter that he would like to go there for a weekend soon.Looking forward to our meet on wednesday. They made me get on the scales at the hospital today. Oh Dear! Diet here I come.

Caron your cancer sounds like a text book case that has been dealt with perfectly. Will you be having your rads at the hospital where you had your surgery.

Kathy Thanks for the offer of a meet. Unfortunately fitting one in before you go away will prove a bit difficult with grandchildren and hospital appointments, but will definately sort something out when the little ones go back to school.

I hope Joy and Gail are having really good holidays. We have to wait until end of September before we have anything else planned although I am going into London tomorrow to see Oliver.

Have a good weekend everyone - Sorry Susanne - missed you out, hope you are OK still having to deal with Chemo.

Love
Andie

Hi Andie - don’t worry, you don’t have to remember everyone! I rarely do. Sorry to hear about your seroma - damned nuisance, and not too pleasant either, I would think. I still have lymphodema in the boob, 5 months post-op - only way to deal with it is by massage. I’m just a bit worried that the swelling could be reducing the blood flow to the nipple, which sometimes looks yellowish rather than a healthy pink. The doc told me that rads might improve it, or might make it worse - wonderful!

As for the chemo, last one on Tuesday! For those just starting, or still dragging themselves through the swamp, it does seem like an eternity, but at last I can see the end! It’s a wonderful thought that this time, when I start to recover, I won’t have to go and let them do it to me again - I can go on getting better (well, apart from letting them fry my boob on their radiotherapy machine!)

Hello ladies,

Hope everyone is okay.

Looking forward to you coming for tea on Wednesday Andie… thinking of some creative things to bake. And hope the ultrasound will help drain your seroma once and for all.

Caron, I’ve just written to my chemist friend with your question on regression.

Suzanne good luck with your last chemo.

Kathy - hope you are enjoying sunny Kent before going to Ireland. So many places to visit.

Yesterday I went to the Musueum of London in the Docklands. My third visit infact - first last year to see the general collection, then back to see a special show on Jack the Ripper and then yesterday with my parents. It is set in an interesting part of London, at West India Quay - with boats moored in front of the row of restored warehouses that includes the one housing the museum. First we walked along the quay and looked at the old river cranes - vast structures that are now purely decorative features as they were judged too costly to dismantle and take away. Instead they now serve as a reminder of the original purpose of the place: a working port with the ships sailing in and out carrying different cargo. Over head there is the train line of the Docklands Light Railway - and it is quite a spectacle to see the shiny red driverless trains passing by. Reminds of the little trains in De Chirico paintings. There are other curios along the front that are worth stopping to look at including London’s only floating church, well it is really a large houseboat with a wooden cross and a list of services which are open to attend. And a giant capstan painted in a chequer board design. We had lunch in one of the reasonably priced cafes along the quay - sunny and breezy on the terrace and almost seasidy. I chose coronation chicken on foccacia - not very much mayonnaise (a good thing) with lots of chopped up apricot and sultanas which were nice. The museum is a good one. Organised in terms of chronology over two floors. My favourite parts were the models of the old London Bridge, from the 1400s and 1600s, where there were once houses, castles, gatehouses etc all running along the top of the bridge - with the buildings supported on ‘Starlings’ that projected like giant structures into the water. I was also struck by the detail of a statue of Princess Pocahontas complete with Indian headress - and by an account of Prince Lee Boo, who was brought to England from the Pacific Islands by the crew of the Antelope a ship of the East India company. The ship had been blown off course and came to land on the island of Pelau. The islanders helped with the restoration of the Antelope and the Island’s King asked that his son go back with the crew to England to learn about English customs. It resulted in an early example of cultural sharing - Lee Boo showed the English how to throw spears adeptly - while he met with English craftsmen and writers including the poet Keates. Sadly his stay in England was all too short as after only five months he succumbed to smallpox, despite the intervention of the King’s own physican. He is buried in St Mary’s church in Rotherhithe. - A really interesting part of London to visit by the way. Great for long walks by the Thames.

I thought I’d escaped lightly on the rads but now a few days post finishing them, I’ve noticed what look like blisters forming (skin not broken yet) on different parts of reconstructed breast. I think I’ll have to get in touch with rads department on Monday if they get worse - and ask about the gauze Kathy.

Mixed weather here in London. Going shopping soon in Bromley. There is the Glades shopping centre there, which I’ve always wanted to go to.

Bright xx

Andie, no I have to go to Hull every day for rads they don’t do it here, everything but it seems.
Also must day this I had my seroma drained with ultrasound and it came back right away in fact the breast one has gone hard now and is a odd shape now where my bra only leans on it it’s indented quite bad.

V samfa !! we call it ! we used to pick it and pickle it we got it from Donnanook (which we aptly call Donald duck!)
Donnanook is a bombing range for the RAF.
They fly over first make sure no one is near the targets ! lol.

Had a lovely night last night we went to a wedding reception (Jordan’s girlfriend’s mam) the group were fantastic all mod stuff Specials etc.
I almost felt normal, apart from the time I was brushing my wig (not a good idea!)and it came clean off, luckily I was in the loo and more lucky was no other ladies were stood in front of the mirror, just me and Chloe I quickly made a hastey retreat into an empty cubicle!
But a good night was had by all (can’t remember the last time I went out).
Jordan’s girlfriend Beth was a bit worse for wear though.

It’s been raining here for days now on and off I wonder when summer will be here?

I wonder how Gail & Jo are , having a fab time no doubt.

Susanne when do you think you will be starting rads?
I have my first appointment next Wed so think I will be a couple of weeks yet.
There was a lady who wrote to me on here but I can’t remember her name now she had polymorphic like me just wondering how she got on?.
love Caron xx

Thank you for your cards.
It is lovely to know your friends are thinking of you. nearly everybody I care about has had a birthday or anniversary in the last 10 days and I am so busy buying cards and presents that I tend to forget my own. My youngest grandchild is a year old tomorrow and sadly I’m not going to be able to see him. However, we’re going for lunch with my daughter, her husband and the three little angels. I believe my youngest son and his girlfriend are coming as well.

WE didn’t get to Great Comp, Victoria, ran out of time. But I AM
going to get there.

Does anyone else feel it’s odd without Gail and Jo? I hope they’ve enjoyed their holidays, but I’ll be glad to hear from them!

Love to all,
Kathy