I forgot to say yesterday, I had a lovely surprise - a white van turned up with a parcel for me for a change!!!! It was a lovely red heart helium 'hug' balloon that stands on its little cardboard feet and has outstretched hands and bobs about in front of the radiator and is making me very happy!! It also came with a box of chocolates - the only problem is I don't know who it has come from as there is a message but no name!! So a big thank you to the anonymous person/people as it cheered me up and still is for that matter.
I also felt happier that I can now do my cross stitch again as enough movement has returned for me to hold onto the frame. Still feel upset about the knitting but will have to teach myself the one handed method I think.
I went shopping in Chichester today. It seemed so civilised and has still got a lot of independent shops or the smaller shops like Monsoon. It is also all on the flat which it is ideal for me and has independent tearooms so we managed to have a lovely brunch and later another lunch!!! We actually managed to shop for about 5 hours!!! Good job I was feeling better today as I couldn't have managed that on wednesday!! My arm still has red patches on which are very itchy and a bit bumpy but is so much better. Last night, the scar on my left elbow (where I broke my elbow and has the lymphoedema and cellulitis) split open a little bit and revealed a little pus but today the whole area looks better but that open area is still sore. It is hard trying to fit in 4 doses of antibiotics before food in 24 hours though.
My breathing has also improved since having the antibiotics so must have still had some infection there as well.
Now all I need is for my oesphagus to heal after that awful sickness bug. I do struggle at times to swallow food and it hurts. I can't believe that the GP reckons it will take about a month to heal. I'm OK with soup and cereal and minced dishes with sauces but pieces of meat and especially bread when I first eat seems to get stuck but then when I drink, it seems to open it up and I can swallow but it remains sore. Since I had the CT scan after this started and nothing was seen, we are going on the assumption that it is just where I must have torn it when I was so sick.
I've been asked by one of the breast cancer charities to do a podcast about living with secondary breast cancer and its effects on my family, friends and work colleagues and general life etc. I am interested in doing it but worried I might either bore people with my endless ramblings or scare people. I suppose I can speak about what we've done as a family over the last 14 months when I was diagnosed with secondaries even though my hip pain had started 4 months previously and my breathing had been an issue for a long time - it just didn't show whatever scan I had. Will let you know if this comes off.
Off out to see friends tomorrow evening for a meal and then staying overnight whilst the children are at the Grandparents which is a huge help especially as they are going over about 2pm so I can have a sleep. I'm then meeting the Gobby Gang on the sunday!!

I spent monday morning with a friend trying to tidy the front room and this time it looked like we'd actually made progress. We found room for AJ's double bass which is quite an achievement in itself!!
As hubby was off, in the afternoon we went into town and bought a few christmas bits and had tea and cakes in John Lewis - 'with the best view over Southampton'. If that's the best view then I dread to think what other views could be like!!!
Monday evening when I was putting the compression bandaging on, I wasn't sure if the top of my arm looked slightly pink but just went to sleep. When I woke up tuesday, it looked a little pink so I put my sleeve on and thought no more about it. The district nurse was, i thought, coming in early to do my dressing on my toe but she didn't turn up till noon. She was rather shocked by how bad my toe was and thought I ought to have more antibiotic. I also showed her my arm which rather shocked me as I now had a 6" red area above my elbow joint and a 3" one below. She arranged for me to see the GP at 430pm. After contemplating this, I then thought I should phone the chemo line which I did and surprise, surprise, they wanted to see me but not till 2pm. Luckily, a friend could take me there but I ended up waiting 2 hours to see a useless SHO who didn't seem to understand why i was so worried and also was not interested in he fact that since I'd had that gastroenteritis illness, I've found swallowing certain foods very painful. In the end, he gave me fluclox at 500mg 4 times a day and said to go home!! Poor hubby had to bring the children over to get me so we went into Burgerking on the way back.
I didn't feel happy about just having fluclox so phoned the GP who thought I should have penicillin as well so now have 2 sorts of antibiotics but orally and I thought when you had lymphoedema and cellulitis, they were supposed to give you IV antibiotics. The docs said they only did that now if you were neutropaenic. We drew round the area and will wait and see what happens next!!
I phoned the secretary to see if the referral to the marsden had been done and it hadn't and she said she had only just recieved the dictaphone tape. That was 12 days after I first saw the consultant about being referred to the marsden so am not happy.
Wednesday - felt very low and couldn't get motivated at all. I sent out an SOS to 3 friends who all came over to help at different times and do different errands for me. Then they took me out for lunch so I had to get dresssed at that point. It was lovely to go out for lunch again though.
I had wrapped up my knitting for a friend to do as I can't do that now cos of my numb fingers. It made me feel very sad as it was yet another sign that my life is ending - this feeling started on monday after I'd thrown away all my university stuff and school governor stuff. It is not being helped by this lack of movement in the referral to the Marsden and being told by the secretary that she will phone me when she comes across this letter. In other words - it felt like she was saying - 'don't keep phoning me cos you're delaying me'. I feel as if I'm on the bottom of the pile and they are in no hurry as i'm incurable.
The only good thing was that the specialist chiropodist clinic phoned and gave me a cancellation appointment for the next day.
Today, I went to the chiropody centre for an assessment and they will take both sides of both of my big toe nails off and chemically treat them so that they don't grow back at the sides. At least, they do it under local anaesthetic as I think it will be so painful. They will probably do this in about 2 weeks.
Have now spoken to chemo clinic and the onc has said he has dicatated the letter it is just a case of the secretary typing it!!
Off to shops now for food and buying pressies for the chemo team etc.

Now have got a new extra bannister which is proving very useful as I need to cling on half way up to get up the stairs. I've also got a nw made to measure lymphoedema sleeve - well it was made to measure for someone but not me!! The middle finger part is about 1cm too long and it is so tight on the index finger, the tip of it had gone blue within 3 mins!! But - at least this time, they have spelt my name right!!!! I've also got a new long handled shoe horn but it has a spring on it so it is awkward to use and I don't understand why it is there!!!
On Saturday, the boys had a daytrip out with the beavers to a theme park and meet Father Christmas. Someone took the wrong toy home so AJ ended up with a sort of playdo thing and Woody a sort of mini mecanno set. They were absolulety exhausted when I picked them up!! Laura went off on a sleepover at 4pm and had to return quite quickly as she realised she had not packed any pjamas!!!
Before Laura went out on her sleepover, she and hubby went out on an Autumn Watch tree hunting do at the local park. It was poorly advertised so poorly attended which seemed a shame as she came home with a lot of lovely pictures, mazes and made a couple of apple bird feeders loaded with seeds. It looked really good.
Sunday - Hubby took Woody out on his bike so they had good fun. I had an afternoon sleep and couldn't work out when I woke up what time of day it was and if I needed to get up quickly to get the kids to school!!
We eventually got round to putting the 'spooky halloween' gingerbread house. It looked fantastic but tasted disgusting!!!
I cooked a sunday roast - the first in a long time and asked hubby to peel the potatoes. Well, don't quite understood what he did but he managed to slice quite a big chunk out of his right thumb with the new potato peeler so ended up using all my new kitchen gadgets - the jar opener, the ring lid puller and the spikey thing to hold the potatoes on when being peeled. It is a fantastic device. So the only thing I haven't used yet is the sock putter onner!!!! I was really pleased to achieve the meal without too much extra help although everyone helped out by laying the table and making drinks etc. We also managed to have a good laugh at the table as well which made a change from the usual dinner upsets we have. Laura has really developed a liking for gravy - I think she must have drunk about half a pint of the stuff!!!
Next post - being ill again

Well on monday, myself and 2 friends from work set about on the big declutter. It left me exhausted both physically but emotionally as well. however, firstly, one of them did make me a big butternut squash soup which is one of my favourite soups. Even with all my new gadgets, a squash is too big for me to cut!!! It was delicious. I've eated 3 portions and froze one portion so have something to look forward to.
We threw out what I suppose is a lot to do with my past and a lot of it needed to be shredded - School Governor papers mainly and other minutes that I've had from various committees I've sat on and also all my literature research for my degree that I will never complete. I've kept my written essays - I felt I had to leave something behind. At least it has given us some room for hubby's books.
What am I supposed to do with all my paperwork from the Tax Credits people - how long do I need to keep that for? I've got piles of it - one famous day we had 11 envelopes from them all awarding us different amounts!!! We seem to get so many papers from them - usually no less than 4 at a time - what do they do?
It seemed sad saying goodbye to my old life as I've always been involved in things like Brownies, Guides, Sunday School, various committees like the NCT and After School Club and then I was a School Governor. Now all I do is attend the hospital or hospice but I suppose I am trying to go in on a tuesday to listen to Yr 3 reading but don't sem to be very reliable as appointmnets get in the way!!
Spent the other evening putting all our wedding renewal cards in an album and am now starting on writing things for the memory boxes and write things about my life as I met at the age of 31 so I have a past that he wouldn't necessarily know about - think it will look like a CV as I want to put down where I worked etc and holidays and all the incidents that I was involved in!!!
Just had a letter from the MRI dept - got that 20th Nov so not that far away. I then relooked at it and found it said MRI head - didn't think my shoulder and armpit were part of my head so have just phoned and someone had pushed the wrong button when booking!!!!
Yesterday - was another 'goodbye' day. I went to the 'Farewell to a health clinic party'. The things the NHS put money into never ceases to amaze me. Anyway, after leistening to many speeches, we had the food. Vol-au-Vents -ddon't know why I like them so much but I do!! Sandwiches, sausage rolls, fruit and quiche. Mine was really watery but apparently some people found that the quiche had not been defrosted properly - feel OK - but otherwise would have reported it!! For decoration, there were about 6 clumps of helium balloons tied to weights. I asked if I could 2 clumps home - most people there were elderly apart from a few managers so couldn't see it as a problem. well, they were happy for me to take the balloons as long as I left the weights behind as they had paid 'good money' for them and wanted them back. After my workmate and I promised we would return the weights, we took them into the car and then noticed that each weight cost £1.50 - I would have happily given her £3 for all that hassle. They didn't seem concerned about the frozen quiche or how much food was wasted but were bothered about 2 £1.50 weights!!!
Just waiting for district nurse to look at my very manky toe and have been told that it shouldn't be long before I see the proper School of Chiropody for an op on my toe. It is so painful now again.
I went back to see the onc yesterday to read the ct result - wish I hadn't now as showed new spread around my aorta which I find scary but apparently cancer doesn't usually invade the aorta!! Also, lot of spread of the general lymphangitis across all my chest but especially my right side but tumours bigger around main bronchus and right branch of bronchus. But - always trying to cling onto something positive - liver one unchanged and one under right armpit has only grown from1 to 2cm. Also, apparently, when reach end of chemo or chemo not working on bronchus I can have some radiotherapy to help my breathing which is I suppose something to cling onto.
BUT - the onc hasn't referred me to the marsden yet and I thought he was fdoing that last week so not happy so will have to chase that.

This is the first time that the 3 children have all been at the same school so inset day on the monday after half term was much easier this time. Woody went out with a friend and played pitch and putt whilst i took Laura and AJ to an indoor play area. I think half of Portsmouth was there!! I spent the time writing thank you letters - well I'd paid £6 for the entrance fee for 2 children so wanted to make the most of it!!! We then went to KFC for lunch and then I came home for a sleep. Seem to be spending a lot of my afternoons asleep now.
The social worker came back in the evening and we tried to think of ways that would make life work better as a family to stop the rowing. The children came up with a few ideas so will have to see how we get on.
Tuesday - mum arrived which was a relief as I needed the help. The occupational therapist came to show me all the new toys/gizmos to help me with what I remember as a young nurse being called 'activities of daily living'. So, I now have a special device to put my socks on, twisty laces so I don't need to tie shoe laces, a device to open tins and lift those difficult pull rings!! Also a fantastic chopping board device which has special pins to put veg on so I can peel them with one hand, and a holding device so I can grate cheese and it will hold onto bowls so I make cakes. Also. a fantastic peeler which is super sharp. Felt really pleased with my new things as now I can be more independent.
In the afternoon, i had to go for my ct scan whilst both grandma's took AJ and Woody to the dentist. I thought Woody was having 3 teeth pulled out as his adult teeth have grown through but the baby ones are still there. In the end, he only had 1 removed so rather puzzled by that but at least it made me feel more positive for the future that he will go to the dentist when I am no longer here. Strange the the things you worry about when you knjow your life is very short. Even after all that trauma, the tooth fairy still forgot to come - think i will have to ask for a new more reliable tooth fairy - this one is rather forgetful !!!!
In the evening, hubby and mum scooped out the pumpkins and the children cut out the faces. They all managed this independently and made some very excellent and scary faces!! I love Halloween.
Wednesday - I went to work in the morning and started to set up another audit so felt I was doing something useful and it was good to be back in the office and joining in with 'normal' chat. In the evening, the children went out trick and treating with a group of neighbours and their children. They all dressed up and it was good fun for them. They came back with well over half a bucket of sweets!! We then went out to watch fireworks at Woody's friend's house where he was at a party that kept us out of opening the door to lots of trick and treaters!! We still had a lot that came round after 8pm though!!
Thursday - quick nip into town and then onto the hospital to get my results. The waiting room was quite quiet but still ended up waiting over an hour to see the onc but at least managed to catch up with one of my friends there and got chatting to someone who I see frequently but never chat to.
When I did see the oncologist i was shocked to find that it was his last clinic as he is off to Oz. I thought he was going in a few months and not this soon so felt really upset about this plus as i expected 3 of the women who used to make up our little secondary corner had all died so that was a real wake up call as 2 of them I had seen go down hill very slowly but one of them went very quickly and she was the ame age as me.
The results were not reported and I didn't see them on screen but apparently my lung on the right is worse and the armpit one has gone back to 3 cm again - I know it hurts. Hopefully, the reported version will not throw up any nasty surprises. I will go back this week to get full report though as i have a need to know.
We discussed various options and I really would like to try tykerb. I feel as my lump can be felt and my breathing has changed, I would know quite quickly if tykerb is working or not. I really do not want to have the gemcetabine/carboplatin option until after christmas because of the associated side effects of anaemia and low platelets, both requiring blood nad platelet transfusions so would be in hospital a lot. However, I don't want this cancer spread to become uncontrollable or grow too big before next chemo. the worry is that even after 5 weeks off chemo, my white blood cell count is still low and I'm slightly anaemic and my blood proteins and calcium levels are low so obvioulsy my body is finding it hard now to fight this cancer and it is beginning to win which is scary. I'm not ready to die yet and even though I should have at least 3 more chemo options left, I'm not sure now if my heart, kidneys and bone marrow can cope.
In the end, I spoke to all 3 oncologists there that day and the breast care nurse came up for a long chat!! They all have different opinions of tykerb and 1 of them thinks I'm now ineligible anyway. The onc had tried to get hold of the the guy at the marsden but neither he or his secretary got back to them so will chase this next week.
I think my face has gone down slightly and my ankles have stopped swelling so much. They still do a bit and I'm having to wear either my support socks or my over the knee socks or else I end up with huge dents in my ankles.
i had the herceptin and zometa and left about 445pm so not bad for a 1215pm appointment!!!
Friday - just tried to catch up with myself and had another sleep.
Saturday - what a beautiful sunny and warm day for november. We went with a friend and her 2 daughters to a public park but which used to belong to a private land owner so all the gardens are well sculptured with lakes laid out and the children enjoyed themselves going over the stepping stones and paddling in the water. The colours of the trees were really beautiful especially as the sun was out and the sky so blue. It was what I wanted to do last weekend but was too ill to get out of bed let alone anything else. I love autumn and the leaves were still in heir crispy stage and not gone to mush. Rather exhausted me so guess what - i had an afternoon sleep whilst hubby and twins walked grandparents dog and AJ watched a dvd.
We then went onto a firework party. It has become an annual event but this is probably going to be the last one there as they are moving away which i am totally gutted about. I love the squash and apple soup and the pumpkin pie and it was good to catch up with people. The fireworks were lovely - another one of my favourite things!!
Sunday - it actually happened!! We managed to go out on the yacht which we had ben planning to do all summer but what with the appalling weather and being away never happened. i never dreamt we would be going on a yacht in november and only needing a layer of fleece to be warm. Unfortunately, there was hardly anywind so spent most of the time using the engine which was a shame but we did go over the wakes that had been left behind by the ferries and red jets so that made the journey more exciting!! We had lunch on the Isle of Wight and teh came home. It was definately colder on the way back and we needed our hats, gloves and waterproofs to keep warm. It was a fantastic day so thnak you for taking us. laura came with us and she took the helm as did hubby which they enjoyed. Laura spent most of the time sitting on the diving board at the front of the yacht and seemed to really enjoy the experience. The boys went off to grandparents - AJ said he couldn't bear to have a day away from his toys!! It's lovely that he enjoys playing so much and using his imagination.
Saying that, it was distressing in the evening as he seemed to have settled off to sleep but then came into our rom very distressed as he wanted to check i hadn't died. It was very upsetting for all of us.
Overall, it has made a positive impact on our daily lives that the children know I will die as they seem more at peace with us and AJ's behaviour has improved and although they have quiet moments, we can now openly discuss this. They knew anyway that I was doing worse and were all expecting me to die but couldn't talk about it. The school people now know they don't have to cover up the truth and can do some constructive work with them with the support of the hospice social worker.
It is so difficult to live your life knowing you are covering up the truth and so i feel as if a weight has been lifted off my shoulders. It i still so difficult to believe i will die and there are so many things we need to set up in place. I need to declutter so people won't have that job later and sort out the memory boxes etc. It is a complictaed and time consuming business dying when you have to get on with the daily routines of packed lunches, homework and general life as well as make sure certain things are set up for the future. I'm so scared I will run out of time before i get some of these things done.