Just a very quick note as late and got to be up early for hubby's nephew's christening. I was planning on wearing my dress I wore when we renewed our wedding vows but can find everything but my petticoat.
I came out of hospital about 530pm on friday after the usual delay in pharmacy and my friend from school took me back to my mums and todday she took me from there to home so she's driven about 240 miles in a day in the rain. I'm so grateful to her though - it's made a big difference being home.
Thank you to Mags (my niece) for writing an update. I think she's better than me at blogging so might have to get her to dictate and write again!!!
The upshot of being in hospital was that they think it was a skin contamination thing that grew in the lab and not an infection in my hickman line but am not really happy as my white blood cell count kept decreasing and my kidney clearance rate deteriorated and I still had a slight temperature when I came home so will speak to my oncologist's team on monday and see what to do next. I really need the chemo on thursday as already I can feel my swallowing is not as good and will be away the following week.
As a reminder to myself, I need to tell you about being Queen of the commode and being to the pajama world what Imelda Marcus was to the shoe world!! Also, the continuing battle for cleanliness, the cardiology team and the patients I encountered.
Thanks for all your texts and phone calls and posting on the forums to give me support and encouragement. Dread to think what my mobile phone bill will be though!!
As Dorothy said in the Wizard of Oz 'there's no place like home' and especially my own bed and cups of tea, and a telly with a clear picture and of course - tra la la - a clean toilet!!

Hey everyone... This is Mags...AKA Magnolia I am Poodles niece. Unfortunately she is currently in hospital and needs lots of supportive calls as she is mightily lonely... So how did this happen I hear you cry....well sit yourselves down grab a coffee and read away.

She was away in kent seeing her mum and and my mum and family for easter. Having lots of fun with eggs and PLENTY chocolicious chocolate, when the day she was due to go home she threw up many times and stayed there for the night while the kids and husband left for home. She was due to join them the next day only to again be sick all night and day and be rushed to hospital by ambulance monday evening where she has been ever since....:(
In her own words "Feeling crappy and fed up in a hospital and hating being away from home mum's been with me everyday she lost her mobile again bless her... she forgot to bring my pj bottoms so I now have a chilly bum...( whether she wanted me to write this I'm not sure :P) But mum did bring her own pj bottoms? ? ? and so i'm now wearing mum's pj bottoms!!!!!! Good job i've lost weight *thumbs up*. After a few days they've now found that my long line is infected but not sure which antibiotics to use as it's taken days just to grow the bacteria to see its infected now waiting on testing it with different antibiotics or something to that degree.IF they have given me the right antibiotics then I should only be there for 3 days? if not ALOT more....Waiting to find out if I can go to southampton hospital if they have a bed it would be nice to be closer to family and to be honest its a bit like a second home....>.< so feeling very GLUM and in much need of love! Guessing my lack of blogging was due to feeling grotty last week as i was helping a colony of bacteria move in on my body..YIKES...So to sum up PLEASE CALL AND TEXT!!!!!! I am lonely and fed up and I've had enough. On the up side to be so far from home I can see grass, cars, life and humanity!!! So nice view.... I have my own ROOM which as tesco's say means every little helps! I do however have a toilet...but no sink....(EW) and have now been forced to take refuge with my detergent wipes. It's a 1930's hospital and staff are lovely but they work in appauling conditions not helped by me being a mad woman with baggy bottoms and hugging detergent wipes...The general cleanliness is a bit eurgh! A far cry from normality and even little things are missed. This place reminds me of the OLD (Ancient) apart of the school I went to with pipes sticking out on the walls...oh well... I just want to go home..."

So that was although written by myself from my lovely Aunt and we are all hoping ad praying she can come home soon!

Please call and text her she sounds so down at the moment not that I blame her!!! But she needs some real support...

Thanks to everyone from reading I will update again soon if she's not home.

Love Magnolia >.< her niece

xxx

I spent a really frustrating saturday night trying to book 2 caravans and ferries and after entering all my credit card details, I then found an error mesage on the screen plus a message saying that I would receive a confirmatory email. Well this didn't arrive and I suppose realistically I shouldn't have expected one at 10-pm on a saturday night but you get used to automatic replies so I thought this would happen.

Had to be up early on sunday as we were off to Monkey World but first had to pick up Woody from the Scout Lodge. We got there in plenty of time and all was well until greed got the better of me when I choked on a ccroissant and ended up regurgitating in the car park!! Then as went into admissions, they didn't seem to know we were coming but eventually it was all sorted out and we had a fantastic day out there even if it was abit chilly. Going around with a keeper, meant that all the primates recognised him and so would come close to the fence so we could see them really well and I also went behind the scenes abit. It was a really wonderful special day out and they looked after us really well. The golf buggy was fun and we ordered one of their mobility scooters as it is a bit hilly and uneven there for the afternoon when we had time for ourselves so of course spent ages in the play area. Not sure what was happening to my insides but when hubby was pushing me up high in the net swing thing, it felt as if my stomach and heart were moving up and down so we thought it better to stop. I didn't think it would be a good idea to collapse at such an isolated spot!!

This made me think more about my heart. I don't think I've got heart failure as my ankles go down after chemo and you would have thought if it was my heart failing then the strain of chemo would make it worse. However, after chemo, my ankles stop swelling and I can wear my gortex boots again - hurray!!! It is about 2 weeks after chemo that my ankles start swelling and my lymphoedema in my arm gets worse which leads me to think that there must be tumours growing in my pelvic lymph system and general lymph system. Don't know whether this is positive or not. It is not good if it has spread more but if my heart is still strong to continue with herceptin plus chemo then that gives me more time and hopefully more chemo. If my heart is failing, then the herceptin will be reduced or stopped and I won't be able to have the recycled chemos. The women who died very quickly were the ones who had stopped their herceptin and even when they restarted it, their cancer did not respond to chemo and they died within a month. I am therefore very reluctant to stop herceptin so although further spread is not good news, I think it gives me options where if my heart is failing then herceptin will stop and no further chemo - I can't bear to think that option cos that would give me a very short time indeed.

Still anxiously looking at the post everyday but none from oncology so let's hope it stays that way and then I don't have to think about possible brain tumours.

Wednesday - I felt better today and was quite happy until I had to take AJ to hospital. The first thing was that I was hungry so bought a banana and was planning to sit outside to eat it with AJ to eat his lunch. There was nowhere for us to go where we weren't being smoked over. Due to health and safety and a crane, we couldn't get to the non smoking area and people were smoking everywhere, - from the walk from the car park to the hospital entrance, at the hospital entrance, and in the smoking shelters. There was nowwhere for us to go inthe front of the hospital where we were not beiong smoked over. It is truly disgraceful and disgusting. The next problem that irked me was at the last appointment, we were told to go back to the day unit so we did this which is quite a long walk especially as I had been unable to take the painkillers the day before due to my stomach problems and my hip and back were hurting. We arrived at the ward and they could find no trace of us until they looked at the appointment diary and foound we had been booked into normal clinic at the same time but nobody had told us of the change of venue. The children's outpatient's clinic is right by the entrance to the hospital so it would have saved me a lot of walking. This then made us late for our appointment. Anyway, after all this, we are now going back 3 weekly and the nurse consultant is going to phone the school to ensure AJ has access to a private toilet. I told him to go to the deputy head as it would take forever to go through the school nurse and I thought it would be carry more weight if the deputy head got involved.
Thursday was Book Day and this year, the junior school decided as the Dr Who books had increased the uptake of library books by boys by over 200%, everyone should dress up as a Dr Who character. Right - I'm really going to be able to conjure up a cyberman, a dalek or an oob at the drop of a hat!!! Actually, in the end it wasn't too bad. The little black dress that has seen Laura as a Victorian maid, a witch was easily turned into Kylie's Astrid blackdress maid costume with the addition of lace around the collar and 50p spent on net curtains for an apron. The black jacket for Woody which has been used for a ringmaster and conjuror was turned into The Master and a reddish jacket from the charity shop with the addition of lace cuffs turned AJ into a clockwork man with his pirate frilly shirt underneath. There were some children that turned up as daleks and cybermen and plenty of Runaway Brides and various Dr Whos but a lot turned up as 'extras' and just wore their own clothes!!! No surprise that the teachers didn't dress up then!!
I spent the morning shopping and having lunch with friends and then had to go back afterschool to buy walking boots for the twins for their night hike friday night with the scouts. At least this time, they were staying in the lodge, the walk had been walked before so they wouldn't get lost and the weather was warmer!!! I was exhausted thursday evening.
Friday, I saw the hospice nurse and in the evening packed the twins off for their hike.
Saturday, I collected Laura from the scout lodge but left Woody there as he was staying over to help with the beaver sleepover. I thought as it was just AJ and Laura it would be an easy day as they would play. Oh no - this time they chose to argue but in the end I did get a sleep in the afternoon. Hubby was working.
In the evening I read in the local paper about short breaks in the Isle of Wight and thought that would be good so also spoke to my sister and mum to see if they wanted to come too. They did so it was now a case of trying to book somewhere - another time - another story!!

After the high of friday and saturday, I came crashing down on sunday which was rather unfortunate as it was Mother's Day after all.
! got woken up at 10 am with flowers and choccies and cards so that was lovely. I also managed a bath which is becoming a major achievement by the time you've considered getting my leg over into the bath!!! Sitting down and trying not to get my long line wet. Laura had made some bath bombs - like Lush do - it smelled slightly but not overpowering.
In the afternoon, we went to hubby's youngest sister to see her and her little baby and his parents. We all ate some chocolate and biscuits and plenty of tea but I felt cold and shivery in the car on the way over and even worse on the way back. I knew it would be hard to fit in both visits but I really thought I would be able to get to my friend's and have a quick sleep and be Ok again. Sadly, this was not to be. I came home to bed at 4pm and hubby couldn't wake me up at 5pm so left me asleep. I woke up just to see the last one on Dancing on Ice.
Monday, a friend came over to help with cleaning and hubby obviously had spring fever and cleaned the kitchen frenetically. we were waiting for the social worker and ended up having to phone as she had forgotten!!
It was a difficult visit as we were discussing my death, funeral and future plans for the children. Sometimes, it is so difficult for hubby and I to have time to talk properly together as by the time the children have gone to bed, I'm too tired to discuss anything meaningful so it is good to have an intermediary sometimeswe went to AJ's 'special assembly' where his class told us all about all Australia and then we met the twins. The smiles on their faces reassured me that they had got into the school of our choice. it was such a relief.
Had a terrible night, with nightsweats and stomach pain and remembered this was how I felt at this stage after last chemo. I felt truly awful this morning but had to do the school run cos of the double bass and guitar. I came home to bed and a friend put the washing out for me. Inbetween, numerous trips to the loo, I did eventually sleep for 4 hours.
Still feel as if I've been kicked in the stomach and don't know if I want to eat or not or what tablets to take to help.
Off to bed now to watch whatever footie is on with Woody and hopefully have a better night and feel better tomorrow. I've got things to do and need to take AJ back to the hospital again. It would be nice not to have to go to the hospital every week!!

Friday i knew I would have a long day and it felt so much better to have this extra energy from the 8mg steroid boost of yesterday, i took 4mg today.
I needed to go into John Lewis to buy a pressie for my 18yr old god-daughter. I'd looked at the .com site the night before and could see what I wanted but as it was on line, I couldn't order it as I couldn't use my discount card. however, i found something probably better at the shop and as my friend was also having to post a birthday pressie, she offered to post it for me. Thank you so much.
On the journey into town, i got a call from my portsmouth friend inviying me out for lunch so after a quick trip into town and managing a coffee, i then went out to lunch. Not sure if it was I chose wrongly or did not chew my food properly but ended up regurgitating in the pub toilet but then finished my baked potato ok.
Then it was a quick trip to the hospital for my brain scan. By this time, i had indigestion and was not looking forward to laying down flat but a couple of Rennies sorted that out.
the radilogist couldn't find a vein for the dye but the doctor did first time as they can not use te long line for the dye contrast as there has been one report worldwide of the internal tube bursting inside the heart so obviously nobody wants to take that chance.
The scan was quick - well I suppose i only have a small brain in comparison to the rest of the whole body scan I've had done before. The radiologist said she could see nothing obvious but of course it does not rule out extremely small secondary tumours but it made me feel happier so of course will worry now if get leter from hospital sooner than when i go back in a month for my chemo. I am expecting an echo appointment so will no doubt panic when the hospital appointment comes through for that.
Today, my sister and her husband came down so that myself, Woody and b-i-l and his youngest could go to the match. i was surprised how small the stadium seemed once inside it and you definately had to be of thin build to get into the turnstile. It was a 1 all draw so disappointing as our team had so many opportunities to score but they all seemed to run so slowly and their shooting skills were poor as was the marking of other players. Definately an opportunity squandered. I think I would like to go again though!!
Now trying to book tickets to see Coppelia with mum but haven't asked her yet if she is free so can't o it really!! Must do that in morning before off to sis-in-law and later onto friends for our usual mothers day dinner.
Still full from chinese meal - struggled at first - it was the prawn sesame toast that did it but ok after that once there was sauce. Ought to try to go to bed now.