Oh Gail, you go girl, rant away! we’re all in a bit of a ranty mood at the mo!, Yes ranty mood not randy, can’t remember the last time I felt that!lol
What was it then, your hospital stay, was it panic attack or did they find infection? either way our poor bods have been thru so much in a short space of time, nothing surprises me!
As for tomaxofin side effects, that’s enough to send us over the edge, i must admit i haven’t stopped fretting about it since i got out of onc appointment yesterday! I have CT planing scan for rads in 3 weeks and a toxicology test on same day to check if it’s ok to go on taomaxifin and if it is i’ll start there and then. I just wanted to have a bit of extra time to try and shift weight before i get on medication! Ho Hum! Poor us!
Hi Shell, Good luck today with Marsden appointment! let us know how you go with Prof Smith! I know you’re going to Fulham one so hope you avoid all the nutter’s that are going to be in town today, chasing all the Bankers! yes i did say bankers! My husband has had to go into town today dressed down, but honestly you can spot a banker a mile off even in civvies. He couldn’t wear Jeans and t-shirt could he, had to wear jeans, shirt and jumper, not really a cunning disguise but at least he plumped for trainers and not shiney shoes like some of the other bods he saw on the platform this morning!!
Anyway, good luck Shell and as always, thinking of you lots!
Jo XXX
Have any of you read any of Julia Darling’s poetry? She wrote of illness etc and seems to have been an inspiring and clever lady. I went mad in hospital with people trying to get blood out of me …pin cushion in the end. They even went in my groin to get blood in the end!! Felt like noone was listening. Went back and read some of Julia’s poetry today and this one was very poignant to me!! her website is at: juliadarling.co.uk . We know most of our health care people are trying to do good by us, but I sometimes want to scream about this being my story and my experience and to please not try to fit me and my “stuff” into the right “medical box”.
Gailx
Injection
Brown walls. The clip and gleam of hospitals.
Here I am again, having scans, being told
To roll up my sleeve, be still.
And here he is, a freckled man, jabbing at my
hardened arteries, not listening when I say
not that one, that one’s dead.
He fails to draw blood, disappears.
In walks a woman with headmistress eyes.
‘This one’s a squealer,’ says the nurse,
so she sighs, rears up with a needle.
I just want to howl for mercy,
to gulp and scream, tell my story,
again and again. Make them sit still, listen.
HI ALL,everyones gone quiet again ??/
Been for my cheno today not bad going in but seems to take forever now.
Really bad news about Marble : she said shes taking the stitch out tomorrow but if she prolapses again shes more or less said its curtains for her, so been crying today, I can’t see why she wont prolapse again tomorrow .
I really dont want her put down for this but I know they can’t help her now (you’d think they would be able to ?).
well thats me all sad and dejected again caron (love)x
Just caught up with all the posts. We are back from 4 days in Dorset where I had a spell of guilt free relaxing (At home there is always something I should be doing - in a hotel its all done for you)
We were is Swanage a place we have visited on and off for the last 20 years. It was as sunny, quiet and peacefull as always but I was haunted with thoughts of how many times I would be able to visit before this b***y bc got me!
Now I am back to the real world and must yet again go and have this seroma of mine drained again.
Gail You are allowed to rant and rave as much as you want. We all have our moments. I could so relate to your poem, I had never seen that one before.
Bright I know you are still away and hope you are enjoying yourself. Well done for keeping going with the cold cap and preserving your hair.
Caron Glad the chemo went OK I found Tax easier than AC so I hope you do too. Sorry to hear about your poor pussy cat, and I loved hearing that your puppy uses the cat flap.
Jo If your rads planning is in 3 weeks time, how long ago was your surgery. Has your scar healed OK?
Shell You are in my thoughts so much. I hope your appointment at the Marsden went well.
Sorry to those of you I have missed, I will go back on the posts and catch up with you later
Ah - Swanage! I went there on a school holiday when I was eleven. First time away from home on my own - felt terribly grown-up! I still have the photos, posing by a ship’s wheel on the sea-front.
andie, welcome back! My friend is going down to Swanage on Saturday for 2 weeks Easter Hols, so if weather stays like this it shoud be lovely. Her mum and Dad have a cottage down there. My mum lives about half and hour away from Swanage so might pop down and visit them if I feel up to it! My Surgery was back in October and again in November so am well healed but still at times feel like my seroma is back, but don’t think it is, it’s just the numb feeling coming and going so feels a bit weird!
Caron, hope chemo went ok today and you don’t feel too bad! Having just had my 3rd dose of TAX it definately feels like it’s accumilated and I seem to be going downhill a lot quicker than after the last dose, feel lousey tonight actually and went for a lie down at 4.30pm this afternoon and didn’t wake up till about 8ish this evening and now can hardley move, all my joints feel knackered and I think i’m about to loose a finger nail!
Thanks girls for your support. I’m fine, the odd moment in tears. sorry I’ve not acknowledged before but I’ve been packing up and then then I had trouble with my laptop. Saw the onc in Maidstone on Monday, she was lovely, but I won’t start rads for 4-5 weeks, so I’m in 7oaks for at least 2 months. We’ve found a lovely place to rent in Somerset, very small but beautiful, part of a manor house in the most beautiful village, just a little way from the school so I will probably see my grandchildren most days. After the pub I’m looking forward to some peace. Just need to relax after all the strains of the last few months. Didn’t know of the financial mess until 3 weeks ago as John felt he couldn’t tell me with everything else that was going on. It’s late I’m tired ,will speak to you all soon. Isn’t it odd,how we’ve never met and how you’re all the best friends ever?
Thinking of you all especially of you Shell,
Love Kathy
Caron- Sorry to hear about Marble…I will be thinking of you today and praying everything goes ok…xx
Gail- I like your poem, gona check out that web site.
Andie- glad you had a fab time on your hols.Hope your seroma isnt playing you up too much.
Kathy- Glad to here your settling in to your new home.
Bright- I hope your having the time of your life on your hols…im sure you are.xx
I went to the marsden yesterday and they are going to put me forward for Phase 1 trials,they are at Sutton so might get to see you Jo…
There is also a trial called Beatrice,its not being done at the Marsden but if Phase 1 trials dont suit me i am going to be referred to the hospital thats doing the Beatrice trial.I think its at Guys hospital…
I am so glad they havnt given up on my and have given me hope for the future…
Oh Shell, I can’t tell you how much you’ve made my day! I’m so delighted that Prof Smith has obviously offered you this trial, that’s great news and obviouly the offer still very much stands that if you need a place to stay whilst backwards and forwards to Sutton Marsden, then you are very welcome to stay here! Can’t wait to see you, when does it start then?
I’ve been to Marsden today actually as I had to have an ultrasound scan on both my breasts. All through chemo i’ve been experiencing lots of breast pain and the Onc thought it sensible to check it out, so since finishing my last chemo on Monday I’ve been beside myself and worried sick about todays scan. I’m pleased to say that they can’t find any lumps or bumps so therefore I have to assume everything is ok!
I’ve been really depressed and tearful today,obviously i was very worried about the scan and then my poor Mum had to have our cat Ziggy Stardust put down this morning. Very sad, I loved that cat and he was sort of one of our last links to my Dad which sounds a bit weird.
Also I feel upset as lots of my friends are delighted that I’ve got to the end of my chemo and I think they feel we should be going out partying and celebrating but it’s weird I just don’t feel like celebrating at all which sounds so ungrateful but I think I’ve suddenly realised that this is just the beginning of it all, and the rest of my life, however long or short, will be full of days like today living on a knife edge! That awful feeling when you go into a room to have a scan and you watch their faces to see if you can guess if they are going to tell you good new or bad news!!! Also this last last Taxotere has absolutely floored me, I feel really poorly today, the worst i’ve felt over entire chemo!
Shell, that’s really good news. It feels good just to be still in the fight!
Jo, it’s the old roller-coaster thing, isn’t it? You’ve been thinking you’d feel great when chemo was over, but actually you’re exhausted by it - and then to lose your lovely cat! Only pet-lovers really understand how it feels to lose a loved pet - in many ways, it’s as bad as losing a human, though different. Especially when the pet is a link to someone you loved. Pets kinda become the repository of your memories, a link to the past - I felt awful when we lost the last of our dogs that we’d had when my mum was alive.
Shell - so good to hear your news about the trials and that you can keep fighting all this stuff.
Jo - I was depressed when my chemo ended. Felt like I was in a safe (if painful) land where i didn’t have to face the real world! Coming out of it is scary. I was also down after my op and results. I’m very up and down. One minute I believe the docs when they say thigns have gone OK and then I read the stats for my survival or a sad story in Bella magazine and I’m right down again.
Have monster at home today which is nice…but still so sore…terrified he will jump on me! It’s hard living with a Power Ranger at home!!
Firstly apologies from Brighlight she is having problems with her internet connection but she will post as soon as she can.
MARBLE : really worried yesterday as they said they were taking the stitch out and if she prolapsed again that was her lot (so to speak)
When we rang the vet thought it was too late to take the stitch out as she didn’t want her to prolapse in the night and be uncomfortable, so she said she would take it out tomorrow (today) I thought this was better as Marble will have more time to heal even if it was just another 12 hours.
Rang today she said she has taken the stitch out this morning and so far so good , she has told us to ring tomorrow now and she said keep your fingers crossed for her xxxxxxxxxxxxxxx ( my fingers )
Even if she prolapses again now I have told Steve to say I want them to try 1 more time and to keep the stitch in as long as they can…
SHELLY I’m very pleased to hear a bit of good news for you it’s the least you deserve after all you have been through, still thinking of you every day.
Jo so sorry about Ziggy seems we have much in common atm, I have only ever lost (well not lost he got run over) one cat called scruffy (because he slavered all the time!) he was only 9 months old.
Then the cats protection brought me Poppy as they knew how upset I was over Scruffy , so I kept her then a couple of days later my sis rings me up seeing if I want a kitten , I said " Ive already got one now (POPPY) but she explained that she would probably end up with concrete boots on in the dock !!!
I then said bring her down then , I couldn’t resist when I saw her pretty tortoiseshell face this was Marble.
Gail be careful after your op I doubt your recovered yet???
Katemate hope you are settling into your new house and you have many happy years to come in it.
Bright hope you enjoyed Hadrians wall ???
It is now 3 days since my tax I had some shooting pains last night from my navel to my groin area and this morning I had a whacking headache, so not done much had a visit from my mother for 5 minutes.
Going to have long soak in a mo.
Have not got thrush yet (don’t speak too soon) or a sore throat !!
love Caronxxxxxxxxxxxxxxxxxxx
caron- I hope Marble gets back on her feet (paws) soon…My fingers and toes are crossed for her.xx
Jo- thanks for the kind invite to stay over at your house.
I dont know when i will be able to start the trial or if im suitable for the trial till Wednesday, i have an appointment at Surrey at 12 o’clock…So sorry to hear about Ziggy Stardust, losing a pet is a terrible thing.((((hugs))))…
Hope all you other ladies are ok, thinking of you all.
Hello ladies,
I’ve lost three posts so far and have almost given up hope of writing until I get home again as the internet reception here keeps cutting out. So this is my last attempt!
I am having a nice time in Newcastle and Northumberland – two places I’ve always wanted to visit. Today I went to a section of Hadrian’s Wall that it is possible to walk along at a place called Housteads which is also the site of a Roman fort with the same name and affords splendid views over the hills of Northumberland National Park. We picked a good day as it was blue skies and sunshine and I was struck by how quiet it was – with just the sound of birdsong and the wind through the grasses. Every mile along the wall there is a ‘milecastle’ which is a place where the Roman soldiers and guards used to stay to defend the wall and England from invading Scots . It was easy to imagine what it would have been like those 2000 years ago – as there were really no signs of modernity apparent to the eye: just the hills, the trees and the puff of wood smoke from an ancient property somewhere out of view – which could easily have been a fire lit by Roman guards to cook supper or keep them warm for the night – though the Fort like most Roman properties was fitted with under floor heating. Writing of modern things – the fort also had the most perfectly preserved latrines/loos out of all the Roman Forts in Northern Europe.
Other highlights of the trip so far have included a bracing walk around the city walls of Berwick on Tweed – and it was a real surprise to be tracing the river one minute and then to see it opening up into the North Sea the next – with only a lighthouse in the distance marking the edge of England before the sea and Scandinavia. Berwick also had some lovely shops and I certainly succumbed to the cookware store in Bridge Street where I bought various things for the kitchen including a set of silicon fairy cake cases and a new pastry brush. And I fell in love with South Shields – a hidden coastal gem, with some beautiful ornate Victorian buildings that resembled miniature palaces along the main shopping street – and the floral park was filled with the scent of hundreds of flowering hyacinths which blended with the salt of the ocean as the gardens ran down to the sea. We had the best fish and chips ever, in what appeared to be a run down restaurant on the seafront – with background music which kept sticking on the middle section of Sheena Easton’s “my baby takes the morning train”. The cod I ordered had pinkish sheen to it and had only been on land for a few hours from the fishing boats which come into the harbour of North Shields – a fishing port reached by a ferry on the opposite side of the river Tyne.
I still feel very tired from my last FEC some two weeks ago now, with the pangs of nausea every so often. Next Thursday I have my first taxotere, which I am nervous about: though Andie has reassured me that it does not always have to be so bad in terms of the side effects.
I have also had to cut my hair into a short style as it has got so tangled with not brushing it for nine weeks. It was a mistake I think not too brush it – but still I have a full head of hair and if I don’t lose it on the tax I’ll have a good six or seven months growth compared to if it had all come out. But it is curly at present – something I’ve never liked. I am still going to wear my wig until my hair grows longer as I do not like short hair much and it doesn’t suit my face shape.
Shelley – so pleased about your treatment possibilities – you really deserve this better luck
Gail and Jo – so sorry you are suffering at the moment – I am sure also that there will be other job possibilities so don’t worry if you missed the deadline on the last vacancy.
Kathy – hope things work out on the domestic front, you don’t need this on top of everything else.
Caron – I’m thinking of Marble as you know – and hope she gains strength through the night.
Andie – glad you enjoyed Swanage but sorry about still having to have the seroma drained. It must really be getting you down.
Love Bright x
Shelly So glad that the Marsden are on your side and trying to find some way to help. Like everyone else I have everything crossed for you that it works out.
Caron Heres hoping that no news is good news for Marble. Although I breed cats I still have a few old favourites and it is heartbreaking when they are so poorly. Last year I was left in charge of our neighbours two cats while they were on holiday. We live opposite a school playground and one morning I looked out of my bedroom window and to my horror I could see what looked like a dead cat in the middle of the locked playground(It was scool holidays and the children were not around). My worst fears were confirmed when I managed to get hold of the caretaker and he bought one of my neighbours cats to me. It had obviously been hit by a vehicle and was dead and in an awful state. Because they still had 10 days of their holiday to go I had to decide how to deal with their very dead cat. Fortunately on their return they agreed absolutely with what I had done, and we are still good friends.
I hope the tax side effects are not too bad.
Bright if you are able to read this I hope you are having a really relaxing break
Kate I am so sorry to hear of the problems that you have had on top of BC. Somerset is a lovely place so hopefully you will be happy there.
Gail What a fright you must have had when you became poorly and they could not find out what was wrong. Your little one sounds lovely, I would quite like to live with a power ranger. The granddaughter who I will care for during the easter holidays wants to be a ballerina. At the moment the practising is more like a fairy elephant but she thinks she is amazing - I will not burst her bubble.
Jo I know what you mean about finishing chemo. Although Chemo was awful I sort of knew what to expect and it did not frighten me. Then I moved onto surgery and into the unknown and was very apprehensive. Soon now I move to the radiotherapy stage and am again unsure of what to expect and quite frightened.
Susanne Where we stay in Swanage is quite near the centre used by school children for their field trips, although I can’t place a ships wheel.
I went to the hospital today yet again to have my seroma drained. The amount of fluid is gradually reducing and the BCN has made me an appointment to see an oncologist (Not mine, she is on holiday) next week for him to decide if I can go ahead with radiotherapy planning booked for next thursday. I have my fingers crossed that he agrees because I am getting quite paranoid about cancer cells lurking in the lymph nodes near my neck, I want any zapped and out of the way.
Next week in 4 days I have 4 appointments at the hospital. I thought once chemo was out of the way the number of appointments would decrease. Not so at my hospital. I even have an appointment to find out about the preventative measures required to avoid lymphoedema.
Don’t know weather to post or not? (don’t want to speak too soon!)
Marble: rang this morning vet said she’s still intact so we could either leave her there till Monday or bring her home !!.
So Home she is very thin now she has had a couple of poos now ans so far so good (fingers crossed) The vet said if she doesn’t prolapse this weekend she thinks she will be ok !!.
Steve’s dinner (yuk) well I have got oral thrush again so all I wanted was weetabix only Steve put 1 drip (honest) of milk on it so I said it don’t matter !!!
put my horses on for grand national so should be good?
all take care love Caron x
Hi everyone,
Caron, I’m keeping my fingers crossed for Marble.
Andie, I know what you mean about the short hair. I gave up wearing my wig a few weeks ago because it was causing the hair to break. I hate it being this short, but at least it has returned. Some people become permanently bald on tax.
At the moment I’m in Sevenoaks, I’m going for my rads planning in Maidstone on Thursday. I’ve left my husband in Somerset sorting out the mess there. He can’t move into the new place until the 17th, so he’s staying with my son and his family until then. After the traumas of the last few weeks, I’ve had a very restful week with my friend. We’ve been friends since school and insisted I stay with them whilst having rads.
Did you realise the next person who posts will be the 1000th on this thread. So thanks Caron for starting it.
Love to all
Kathy