Have been trying to have a quiet week to recover from the busy weekend.
Poor Laura really seems not much better and her joints really hurt her. She is still having a sleep in the day and goes to bed early and wakes late. She just tends to sit and doesn't go outside which is so unusual for her. Wonder how long it will go on for?
Still no news from Primark - surely if the letter was sent friday, it should have been received by mon/tuesday surely.
Tuesday - I went to the Hospice in the morning. I can usually manage their meals OK but the menu is on a 4 weekly basis so it is getting a bit predictable as so much of the food I can not eat so have the same things week by week!! I got my hair done and some reiki. I also saw the lymphoedema physi who gave me the new sleeve and glove. This one actually feels as if it fits properly and is not too tight on my wrist so hopefully will reduce the hand swelling.
Then it was off to the MacMillan Centre for the Look Good Feel Better session. Parking was even more of a nightmare than usual. The queue for the disabled parking was not moving as someone had let a removal lorry into it and as the turning area is small, it could not get the angle right to get out. The poor lady in fron of me was desparate to get in as her hubby was really poorly and she needed to get in to see him urgently. Even after she'd explained and I'd explained, they still would not let her in. The lorry was trying to get out the entrance and hit the notice poles and signs before eventually getting out. I don't know who let him in but they should never have done that.
The Look Good Feel Better is a session run for women with cancer to show them how to use make up properly when undergoing chemo or after treatment. The main beauty companies get together and make up a big bag of cosmetics to give each woman meant to be worth about £250. There were 3 helpers and 12 of us women. I sat next to someone who'd I'd been emailing via the forum so it was great to actually meet her. I also met a lady who I'd not seen for about a year. She was with her daughter and didn't look that well. She indicated that she had secondaries in her bones which was a huge shock as she'd been on a trial where she'd been given the same bone strengthener that I have but 3 monthly to prevent bony secondaries.
The session was well run and we got some lovely cosmetics by various companies and I got a 3 bottle set of the various Poison perfumes. The lipstick colours were interesting - I wondered if the companies gave away their least popular colours as the lipsticks were frequently bright red or pink. I ended up getting a strange purple but an OK pinky brown colour lipstick. The eyeshadow I got was a trio pack of white, purple and brown. The assistant had to put that on me as when I use purple it always looks as if I've been given a black eye!!!
We all got chatting and I think there was about 4 or more of the 12 with breast cancer and all under 55 I would think with my new friend being under 40 and me at 46 so rather scary.
Whilst I was there in the afternoon, Laura had tried school but got very tired.
Wednesday - I had lunch with my manager and her PA. It was lovely to see them again and I managed to eat some bread with the soup. I then made the most of the 20% clothing at Tescos sale and am now down to a size 16 from a 20 last year. That evening I really struggled eating some stew and I ended up regurgitating it which was awful for everyone. I'd eaten a lot and most did stay down but my swallowing is worsening. I've tried to deny it but I can't and I'm still losing weight and although I seem to eat OK in the day, it seems to be at night that I can't swallow. I think it doesn't help that my top vertebrae is so painful and I'm stuck on the painkilling front as what I need to take for the pain means I can not drive. It is obviously a concern to the oncologists as well as it was mentioned at this meeting about me as they want to do radiotherapy to cover my spine and my lung tumour. If I take soemthing like a lorazepam or a diazepam then it helps the pain and also my eating as I think it relaxes my oesophagus so I can swallow.
Laura didn't go to school wednesday as she was too tired but she went in on thursday for the school leavers photo but I had to collect her after an hour. I bought a present for my sister which I can't say what it is as she may read this before she receives it!!
Thursday, one of my friends came over and cooked 2 lots of sausage stew and did some housework for me and another friend came over to bring some ironing back.
Thursday night, I managed really well at first with the tuna stew but suddenly choked on it again but I was on my second helping so not too bad.
Friday - Laura and I had a quiet day in as I thought the argos delivery was coming between 8 -1pm and it wasn't till noon I looked at the receipt and it said 12 - 8pm!!! It arrived about 230pm in the end!! The book case looks very narrow though but the order number matches the one in the book so time will tell when hubby opens the box!!
We spent sometime doing the photo scrap book together which was lovely.
I still hadn't heard from Primark or radiotherapy so went round in circles on the radiotherapy front and all I learnt that was I'd been rereferred on the 19th May which was about 3 weeks after the initial referral at the multidisciplinary team meeting so will have to wait and see. The problem is they often only give you 2 days notice so if it arrives next week I won't be here.
I gave a very angry phonecall to Primark who told me the letter had been sent off yesterday!!!! What can I do - i would go to the papers but don't want them to go on the obvious 'dying mother with 3 children' front but it seems so wrong that I've been waiting over 3 weeks for a reply now.
Had a very successful meal tonight of the aforementioned superbly, scintillating and sublime, spicy, sausage stew!!! Don't know what the magic ingredient was but it was lovely and it stayed down!! It might have been the diazepam I'd taken as well that helped with the swallowing but the pain was so bad in my back.
Woody was supposed to pack his own bag for camp but I still ended up helping him and then it was a quick goodbye and see him on monday. Just hope it doesn't rain too much - the forecast is awful.
Saturday - I'd really hoped I'd sleep in well but woke up about 830am. I took AJ into town to buy shoes and trainers. We couldn't get any - there seems to be a shortage of size 3 boys shoes and trainers in this city!!! Not sure what we are going to do as he needs shoes desparately.
I had to have a sleep this afternoon and then we went out in the open topped morris minor. It was fun and really good to be tootling around in the New Forest in an open topped car.
The others have eaten pizza tonight - there is no way I can eat that so think I'll try an omellette.

Weekend Away on Isle of Wight
We managed to get on the 6pm ferry easily and this time, we knew what those funny hand signals meant when we led the procession of cars onto the ferry. We did have the same man organising the loading as last time and yes, he did remember me so that was rather embarassing!!
When we got to the Island, we drove over to Shanklin but the map was uite useless with directions onto how to get to the Hotel!! We did it by a fluke of hubby's brain. He always knows where he is going - he seems to have an inbuilt homing system!! The room was small but lovely and clean and very comfortable bed. Thanks Julie for recommending this place - it was above our expectations and we had a good time.
we just dumped our stuff and went off to the Old Village and back to The crab where we'd eaten when i was there over school holidays. I was really looking forward to having the same risotto I had last time but they had changed the menu!! Why!!! the waitresses said that customers weren't that happy with the new one and we saw several people walk out after looking at the menu. It was too 'new foodie' if you see what i mean. Eventually, found something I could eat and the puddings were fab.
Saturday - was quite cold and grey but didn;t rain so that was better than we'd hoped for. I'd had a lovely vegetarian breakfast that I could eat and filled me up till the afternoon. We went to the Ventnor Botanical Gardens. It was stunning with very unusual plants in but poorly labelled. However, entrance is free and mainly manned by volunteers so it was so amazing that so much could be achieved by them. The hot house was lovely with huge waterlily pads. We had a up of tea there and used the oddest lift with the exception being the one in Prague, I've ever used. The
lift had to be operated by continually pushing down on this knob so not very disabled friendly and we let go when we first got in so stopped about 2 feet after we'd started and then read the notice so pushed the knob again!!! We spent ages in the plant sale area and thought we'd go back tomorrow to buy plants.
We then went onto Brighstone National trust shop and museum. Not very impressive and were glad we were already members. Found out that the gardens in mottistone were shut on fridays and satudays so went to the Old and New Batteries on the other side of the Needles/Alum Bay.
We started driving up the one car width road then noticed a sign that said no cars. we carried on regardless as we thought they should really provide disabled parking and the staff drove up there. We did meet 2 buses coming the other way but luckily it was at the only point there was a passing way!! We found disabled parking spaces at te top and looked round the Old Battery which had been used in the 19th century against France and the New Battery where they tested rockerts and satellites in the 1970s. Very impressive the New one as I suppose it has only just been opened up due to the Official Secrets Act. We had a good cup of tea there (you can always rely on the National Trust for a good cup of tea!!) up in the Old Coastguard Building where there was a good view and they even provided excellent binoculars to see over the sea and bird watch or whatever.
We then went for a drive round before going to an italian restaurant in Shanklin again. They seemed to have an obsession inmoving tables about so they could fit mmore people in. It was quite a squash and they seemed in a hurry to get people in and out. We weren't playing that game so spent ages there and when we left at 930pm, there was hardlyanybody there.
Sunday - I wanted to see the Shanklin Chine which was lovely. All sorts of plants and huge gorge and by walking slowly with my stick I could manage the steep climb. I forgt to say this was another steroid fuelled weekend after chemo whichis why I could do so much. Back to land zero next week!! Then back to the Ventnor Botanical gardens to buy the plants we wanted and off to Mottistone gardens. The sun was shining and we spent quite a bit of time there just sitting having tea. There were all these little ornaments that were dressed up in clothing and were named such as 'Gordon Pansy' which had a chef's outfit on and 'Walter Plant' with a watering can. I suppose it was to keep the children amused.
Then we tried to find the place where hubby had seen the red squirrels before. The road was so bumpy it hurt my back terribly and we didn't see any squirrels so it was back to the ferry again. The journey back was interseting - definately some sunday sailors who didn;t know where they were supposed to be in relation to the ferry and the buoys!!!
I went out to church in the evening and hubby collected the children.
I went to a very moving healing service which was extremely emotional and has made me feel a lot better. My friends are involved in that church and it was a lovely place to be.

SATS week
I'm now over a week behind with this blog. Last week was hectic so now trying to catch up.
Poor Laura's blood test came back as negative to glandular fever but her white bloods look like they have changed into viral infected ones so probably is glandular fever. She definately acts and looks like this is what she has got. She is so pale, her joits hurt and she is so tired that she sleeps in the day and about 14 hours at night which is unheard of for her. On top of this, this last week was National SATS week. I was quite happy for her not to do them but she has been revising hard and wanted to do them so after speaking to the very helpful and symapthetic deputy head, we arranged she should do them at home. He had asked for her to do them over a longer period of time as there are 2 x 45mins papers a day roughly. he had had glandular fever when he did his Alevels just like I did so he knows how bad it is. The SATS Board were happy for her to do them at home and either write her own answers or get the teacher to write them down for her. They would not let her do only 1 paper a day as they were worried that her twin brother might give her the questions. Honestly, whose reasons is it these poor 11 yr olds are put under so much pressure. The schools hate them, parents hate them - it is only the Government that want them and then the schools need good results because of the league tables!
So everyday, last week, we had the Learning Support Assistant here to sit with Laura while she did her exams and whilst the other children at school had an hours break between papers, she only had about 10 mins. She enjoyed showing the LSA, the guinea pigs and our ponds etc so that was nice for Laura. My mum stayed on to sit in the house as I had various appointments etc that week. We only have a longe diner so poor mum and I were limited to being in my bedroom or outside or sit in the kitchen. It was very odd.
I went to Exbury Gardens with one of my friends on the tuesday. It was lovely and hot and so beautiful. We go most years but this year was definately the best I've seen it. All the flowers were out and the colours were magnificent. We took loads of photos and bought loads of plants. I used my scooter over rather rough ground and it did struggle but it was worth it. It was very busy as they had many coach parties so the tea and loo queue were huge!!
Wednesday - I had an appointment with the neurologist. He was pleased that I now had mmore movement and feeling and less pain but wanted to see me again in 4 months and do another nerve conduction test. They couldn't get me an appointment till october and after I left I wondered why I'd agreed to this as it hurt a bit last time and as nothing had shown and it was improving, I feel I am wasting their time and mine and they are obviously so short on appointments, I don't see the point of going back when someone more needy could have this.
Thursday - mainly covered this in my link and previous post. Was very disappointed and woried though that my last gem/carbo will now be end of June when I so desparately wanted to go through the summer holidays without chemo and with hair. They have discussed me at a team meeting and want to give me rads now to the tumour squashing my oesophagus and to my vertebrae which is so painful. He felt I would get more relief by having 2 more small doses of gem/carbo 3 weekly then having the full dose 4 weekly. I was trying to buy time again. He did say though that they were also understanding why I didn't want to start weekly taxol till end of august and september and so would do what they could to achieve this. Might have to see if I can get them to give me more of the same chemo or the tablet one just for a few weeks to get me through.
Yet another cockup - the consultant cancelled the day 1 gemcetabine instead of the day 8 so ended up waiting about an hour and a half fo pharmacy to make oit up so late home yet again.
Friday - busy day as packing for children to go to grandparents and for us to go to the Isle of Wight. I went into town in the morning and wanted to buy Laaura a newnightie to cheer her up. I went into Primark as they only cost £3 there and I wanted to chase up why I'd heard nothing. this time I saw the proper manager who was surprised I'd not heard anything as the area manager had been over to the shop and all the people involved had been given written warnings. I got the nightie and a pair of socks free so wished I'd put more in my basket!!! When I got home, I phoned HQ and after being put on hold for 10 mins, I got through and they promised me a letter would be out that afternoon. I'm writing this now5 days later and I still have no letter!!! Going into town later so may go in and get them to phone as this is ridiculous and i'm not spending my money on phonecalls when it is their problem!!
Mum went home - it's horrible for us both when she goes as we are both upset so partings are always kept really quick and short so we don't get too tearful.
Hubby home early - children off to grandparents so next bit is the Isle of Wight!!

Have posted this on www.breastcancercare.org.uk under Secondary forums. You don't need to register to read post.
Basically, having 2 more gem/carbo 3 weekly which gets me to early July. they want to do rads now to tumour squashing my oesophagus and then weekly taxol. I didn;t want to start taxol till september as wanted to have good summer with children and never coped well for more than 6 weeks off chemo so a bit disappointed unless I can persuade them to give me an extra extra dose of gem/carbo.
Must go and will update later.

Suspected Glandular Fever
Poor Laura, she came home from the childminder's thursday evening and she was all fluey and fell asleep at 7pm. Friday, I took her to the doctor. He thought after looking at her manky tonsils and enlarged gland and that she was so tired and achey that she probably had glandular fever. I was quite shocked by this as I associated it with teenagers. i suppose it makes sense as her throat has been so sore for a while now and she has been has been so tired and achey and how i remember feeling when I had it. Poor girl she had to have a blood test. For some reason, maybe because she seemed dehydrated, the docto had great trouble getting blood from her. Normally, he is good at taking blood and this must have taken about 5 minutes to get 2mls of blood. She was so brave but went very pale and nearly fainted afterwards. We will get the result on monday.
Of course, with SATS next week this news caused major panic at school. The deputy head had to phone the SATS board to get permission for Laura to take her exams at home with an invigilator and to do them over a longer period of time. Laura is quite devastated as I don't mind if she doesn't do them but she has been revising hard and wants to do them so doing them at home which seems the sensible solution.
I then went food shopping with my sister in laws help whilst Laura stayed at Nans but away from her baby cousin which made her very sad but she did understand why. After this I had a quick sleep before picking up the boys.
It was a bit of a rush as Woody had to pack for his scout competition and be fed and out the house by 530pm. His rucksack was loaded up on the outside with sleeping bag and roll maps. Luckily by this time, my mum had appeared so she could help by ironing his uniform and polishing his shoes. He did look smart in his uniform!!! Just hope they do well now and get through to the second round like they did last year.
Hubby had left the house at 6am to go to Stevenage for a work meeting and he didn't get home till after 6pm so was rather tired.

AJ's Birthday

We did eventually make it to the bbq - I had to have a sleep first and the weather cleared up but it was very humid instead. We enjoyed it and it was good to catch up with others. I did try to eat a hot dog but ended up regurgitating it into one of the many various shrubs and trees. The host of the event looked after me and found me some cous cous that another friend had cooked. It was lovely and something that I could eat.
Tuesday - in the morning I spent some time with our childminder just chatting which was very nice to be able to have the time without the children running around. At lunch time, I went up to London to meet some other women with breast cancer secondaries. We did manage to find each other without too much of a problem although at one point, the person who taken over the organising and myself nearly went up to another group of women but then realised there were a lot of men in their group so it probably wasn't them. We sat out on the South Bank which was lovely. I'd earlier walked down to the London Eye and was amazed by how many street entertainers there were down there. I was quite tempted to go on the London Eye but at £15 seemed rather expensive way to spend 30 mins.
We all left about 515pm so I didn't fancy travelling home in rush hour so phoned a rather surprised friend who works in central London to see if she fancied meeting for a drink. She was free for a little while so we had a coffee at Waterloo Station and I came home on a 7pm train which was far more pleasurable. Did you know it now costs 30p to use the loo at Waterloo Station? Why so much?

Wednesday - this was not a good day for me. It was my dad's birthday and the day before my australian friend died a year before. Pete was off sick and I ended up in tears quite abit as there seemed to be nothing I could do without help. I needed the camping stuff down from the loft for Woody and my summer clothes although none of my skirts or trousers will fit as I've lost so much weight. It was so frustrating that I could not get up into the loft. I hate being dependent on people to do things that I have always done for myself and I get really impatient when I have to wait for help.
My friend had helped me change the beds so there seemed to be a mountain of washing to do and sort. Then the vista computer is still not working despite lots of people's help and I was getting so upset. I wanted to access my email folders where I have kept emails from friends that I wanted to read. I can't print anything, can't add to my Ipod and can't get letters etc done that I need to do to 'sort out my affairs' plus a few complaint letters.
I am fast becoming Mrs Angry from Tunbridge Wells. It is a real eye opener how difficult it is for disabled people to access things that able bodied take for granted. eg how narrow shopping aisles are, how few disabled parking slots there are in comparison to mother and baby ones, no chairs in changing rooms, how difficult it is to carry anything with a walking stick in one hand and lymphoedema in the other. The odd places where they put lifts and then how small they are - the list is endless.
I just cried a lot yesterday and it seems so stupid to get upset about something so trivial when I have got other more important things to get upset about. The problem was I still felt the same way when I woke up this morning and it took me a long time to gear myself up into a better frame of mind.
Today - thursday. I've seen the district nurse, my friend has hoovered and cleared up for me and I went out for lunch with some ex work colleagues which was lovely and the pub we went to has recently been refurbished and it was lovely food and relaxing environment and good company -thank you for taking me out today. I needed that change of scene and company.
This afternoon I went shopping again - shhh - there's new shoes in the house!!!
Now back to the 5-FU - I think I did post this before but now can't remember but there is evidence that 5-FU which is usually given as the first chemo women with breast cancer have, does cause brain damage and causes, I think short term memory loss and general brain misfunction. See I can't even remember what the report says or if I posted this before!!!! That is my excuse for keep wanting to give my maiden name - I've been married nearly 13 years now!!! - and my old home address as well as having no memory of conversations I have had. So that is my excuse for forgetting things and getting things muddled - the rest of you can just blame your hormones or your age as I know I'm not the only one with a failing memory as well as the failing eyesight!!!

Posting Comments
I've had several people say or email me that they have tried to post a comment but not been able to. For those of you that have posted a comment is there an easy way to get into the comments page that you could share with others and post instructions at the end of this post?
I do appreciate it when people post a comment or when you contact me in some form or other to say something about a post but it is frustrating all round when someone wants to post a comment but the system seems to be difficult to follow.
I can always make comments anonymous and you can post anonymously so that I don't know who it is from or you could give yourself some new name.
Thank you

Getting Better
My breathing did improve thursday night. I think the omomorph and diazepam also helped to calm me down. I'm still quite wheezy especially first thing in the morning and last thing at night.
Friday, my friend came down and we went out to a little old fashioned garden centre where i ended up buying even more flowers for the newly revamped flowerbeds. We did stop for lunch at one of the main stream garden chains but their plants were so much more expensive.
Saturday - hubby was working and in the end the children and I just stayed here until hubby had finished work when we met him in town. I took the opportunity of getting a few of the plants in with AJs and Lauras help. Woody was at football practice.
Hubby took the twins to spend their birthday money and I took Alex to Toys R Us to get ideas for his birthday. At the moment, the store is being renovated so the shop is in a giant marquee with very bouncy wooden floors. there were no disabled parking bays whatsoever and the staff were all parked in a cordoned off place right next to the opening. It made it a long walk and what with the bouncing not a very pleasant experience for my hip. I had to ask a staff member who for some reason was banging goods on the ground to stop as it sent searing pains across my hip and back. He was a bit surprised but did do it. I don't know if it is a legal obligation to provide disabled parking spots but I was not happy at having to park the furthest distance away possible.
Sunday - the big match. My sister, bro in law and their 2 middle girls came down. Hubby took AJ and Laura off to some woods to look at the bluebells and they also saw some badger sets. Laura even found a badger foot print so she was very excited about that!!! Bro took his 2 girls and Woody to see the Big Match. My sister and I went out for a cup of tea at a garden centre and nosed around around the plants and also a little craft shop where kids can make things while parents go plant shopping. I'll bear that in mind as they had some lovely beads and different sort of gift bags. I could see some beads that would match one of my necklaces so will go back at some point. My sister tried to phone to make sure the others had got to the match on time and couldn't hear what was being said due to all the noise. It was such an important match for Saints to win and this time they actually did and it apparently it was a good match to watch and the children really enjoyed all the singing and chanting etc so it sounded a lot more atmospheric than the last match we went to. I felt so relieved the Saints won so weren't relegated - more for Woodys sake and his friends!!!
We then came home and I had an hours sleep which made me feel so much better and then we all went off to a pub to eat. The food was good but they were so short staffed there was a huge gap between starters and main courses. The poor waitress looked shattered.
came hoem and got so wheezy again and couldn't stop coughing so had a very late night but have woken up now and my chest feels clear!! Hope it stays this way!!
Raining at the moment and we are supposed to be going to our friends daughter's 11th birthday BBQ at 1pm. Not sure now what is going to happen - what a shame.

Wheezing and Puffing
I'm sitting here shaking from all the ventolin I've inhaled to try to get my breathing back on track. I can't believe I only finished antibiotics for my throat 2 days ago and yesterday the doctor told me my chest was clear although I didn't feel it was right as my breathing felt slightly painful. Then this morning when I woke up, my chest was definately not clear.
All the family have had these nasty colds and coughs and poor Laura has been unwell since sunday which is so unusual for her. Yesterday, she alternated between being ghostly white and a red hot poker but the same GP said her chest was clear and her tonsils only slightly swollen. They looked huge to me and were covered in white spots but as usual you are told it is a virus. Are they doing anything about treatment for viruses does anybody know?? I'm so caught up in the cancer world that any other part of health issues just passes me by.
It is so hard to put myself first even though I know I should so I never went to the doctor's this morning as we had a 45 min drive over to see the orthodontist. The only place to park was in a staff bay so Woody went off to ask if that was ok and was told it was. Sure you can see what is going to happen next!! The twins thought the place was very posh and I suppose as it is in Milford on Sea you would expect that. I explained I couldn't walk far and my back was really painful so we sat down at the bottom instead of going upstairs. Woody was seen by the lovely orthodontist but immediately went into panic mode when they were trying to take an xray. I'm sure we are going to have to try something like hypnotherapy to get him through all the orthodontic work he will need unless anybody else has any other ideas?
After all this panic on monday about a short window of opportunity to get his mouth right, the orthodintist thinks it will be about 2 years before he can actually start any work as his adult teeth are slow coming through. Both Pete and I were late developers on the tooth front so hopefully by then Woody will be more mature to understand the importance of why he needs this doing. I am desparate for him not to have the same problem that I have - I can't bite into a whole apple or never been able to chew with both sets of molars at once so my mouth moves a bit like a cow's - I have to chew one side and then the other or make it go round in circles!!! I was so self conscious of my gaps as a teenager and it really dented my confidence and so do not want him to suffer the same. My friend said she'd never noticed my teeth (not sure whether she was being polite or was a little tipsy - sorry - you know how you are and actually I did appreciate your comment as I know you are honest but tactful at the same time!!!) but it was always a big issue to me.
Woody went into panic mode for an xray so really dread to think what will happen later on. Hopefully, he'll mature and understand why these things are necessary.
We then came out and yes, you were right I was blocked in by a woman who was apparently having a tooth extraction and would take 15 - 30 mins!!! My back by this time was agony - I think the angle of my seat in the car had been changed so was not being supported properly because usually driving doesn't make it that bad. There was no way I could sit there for that long and strong painkillers mean I'm unsafe to drive and probably illegal as well. eventually, after getting the receptionist out and tearfully explaining the situation, the woman came out and moved her car. For goodness sake - you can see my mobility scooter, the blue badge and the oxygen cylinder sign. What more should I do? Think Pete will have to design me a do not park behind me sign!!
By the time we'd got home, Woody only had a couple of hours left at school and I went to sleep which is the reason why I never saw the doctor then. I woke up several times in an hour coughing and feeling as if I would suffocate but by then it was picking the children up from childminders time and had to get Woody off to his special training for this Scout competition.
AJ and Laura played outside with all the other children in our roadunder the supervision of neighbours and I took Woody off to camp. I felt so wheezy that I got Woody to phone the GP to try to get me a late urgent appointmnet which he did but the traffic wasn't moving. Eventually, after dropping him off at camp and realising I wouldn't get back in time to see the doctor, I phoned the surgery and asked if the GP would do a presciption and leave it at the pharmacy as they close at 7pm and the doctors at 630pm. They did which was wonderful. I really didn't want to leave it till tomorrow as I've got so bad throughout the day, I didn't want to spend the night without antibiotics and risk being admitted to hospital again.
Anyway, the shaking has stopped now and I've eaten a fair amount of chicken curry cooked by a wonderful friend so feel a lot better. Still wheezing but it is only noticeable when I take a deep breath so let's hope and see that I can get over this without being admitted.

Living in a Pararell World



So many people tell me that I'm 'inspirational', 'courageous' and that they admire the way I cope with this disease. I don't really feel any of these things and I'm not really sure what else to do so I just carry on living my life the way it feels right. However, it is lovely to be complimented though.

I just wanted to write a bit more on a personal note why I think people get this impression.

I do wonder if we'd never had the children how I would have handled this disease and if I would have pushed for as much treatment or done so many things if it had just been Pete and myself. I suppose we would have probably gone away for weekends or holidays more together rather than just snatching a bit of time here and there for us but other than that I wonder if it would be different or is it just that I am because I am strong willed and determined that I would have been just the same. Who knows you can't relive your life.

Sometimes, it feels as if I am driven by an almost animal instinct as I just want to protect the children so much that it is factor that gives me the impetus to keep going on with treatments and trying to live a 'normal' life for them but also for Pete and the rest of my family and friends as much as it is for me to cling onto 'normality'.

The psychologist on 'Mummy's Diaries' talked about being able to walk or live on pararell roads and this is what I suppose I do. On one level, it is just about the day to day running a house, shopping and nagging about homework etc and then on this other level there is an increasing awareness that time is not on my side and there are things I want to and need to do. For example, planning my funeral and even the other night discussing if it looked as if I would die close to Christmas would it be better to either abandon treatment so there was a gap between my death and christmas or plod on!! More like the conversation you have about planning a holiday. Sometimes it feels like I'm living in a soap opera as this is so unreal and that's why I can talk about it in an unemotional way.
Of course, I have other days when I am just tearful all day and can't believe I will die and leave everything that is precious to me behind and I will cease to exist on this earth. It just seems so unfair that the chidren especially have this worry. Woody nags me to eat more slowly so i don't regurgitate and tells me to stop as I sound breathless. Laura dashes around doing things for me so I don't exhaust myself. This seems wrong for 11 yr olds to have to worry about these things but then that is the life that some children only know about as they have always been carers.

Then there is this 'hope' path of 'well a miracle will occur and it will all disappear and I'll be cured' even though I know this is so unlikely but you have to live in hope or maybe I mean I live in hope. I have to live on this level of hope or else I would just take to my bed and do nothing which is a waste of the opportunities that modern medicine has given me.

I suppose I've always been an energetic person and used to do a lot of exercise and walk miles and I think that has helped me to survive for this long and helps me to push myself. All that Jane Fonda and 'go for the burn' philosophy has paid off in a different way. I can't see how if I've only got a 50% oxygen exchange rate and a heart function of 60%, I do manage so well. My body must have got used to working anaerobically (without oxygen) even though I know the modern outlook on exercise is different now. I've never been good at sitting still as anybody who has shared a flat or been on holiday with me can testify!!! I've always knitted or sewn if I have been still.

I know lots of people read this blog from my family and friends and work colleagues to people who only know me from breast cancer forums in the cyberworld and honestly don't feel exceptional in the way I cope and with what I do. Without all your support either physically or emotionally, I would not have got as far down this road without you so next time you think I'm inspirational, please remember that I think the same of you all too and that I'm sure if you were living my life you would probably do it in the same way as well.