I could not sleep last night until 430am. This was due to having 8mg of steroid at 1pm. It is so annoying as I am always twitchy so can't settle to anything constructive and am tired the next day and can't get on with the things I needed to.
I decided to risk the wrath of the onc's secretary and asked her to get someone to phone me back about my blood results. I was really surprised that the reg phoned back within 30 minutes and said generally my blood results were OK but my kidney function test - creatinine is 100 which is high but it has been that for about 3 months. I then remembered that one of the other oncs thought I was not drinking enough water and on the one occasion that I did drink loads before my blood test it was improved. Think I will have to cut down on the alcohol and coffee and drink more water - think I'm going to be more continental with drinking more water with my coffee and alcohol. I already have my afternoon siesta!!!
I woke up at 10am and took it slowly but could feel that I could swallow more easily already.
Hubby had ordered the cinema tickets which was really a waste of £2 as there was only about 8 of us in the cinema!! I think the film was funny but i went to sleep through part of it.
Came home and went to sleep again for another hour. During this time a friend and her daughter had come to visit so more pressies for the children.
Now it is after midnight and I don't want to go to sleep but should really make an effort but my ingrowing toenail is manky again and I'm so hoprrendously constipated that I have every sympathy with AJ as I can't concentrate on anything else!!
Must go as it takes about an hour for my bedtime routine what with using the compression bandages on my lymphoedma arm, redressing my toe, swallowing lots of tablets and warming up wheat bags and generally tidying up and settling down.
Night night

i met my friend off the local ferry which had been delayed by a bigger ferry breaking down just outside the port entrance and was being towed in by tugs. After that it was an easy journey to the hospital. It was 9am and the waiting room was already half full. There were 3 clinics at once but I saw the oncologist at 915 even though I hadn't had my blood taken by then. I had utter faith he would order it. He commented on that I seemed so much better and gave me a piece of paper for 3 weeks for the third dose.
We then waited till 1pm to be called into the treatment room for the start of what I thought would be a marathon session of drug infusions. I had the gemcitabine over the hour and then the carboplatin over just under an hour and then sat and waited for the herceptin and zometa(bone strengthener) for about another 45 minutes, the nurses hunted high and low for the drugs and then we found out that the oncologist did not want me to have these other 2 drugs until next week as he thought it would be too much for my body. This made me very angry as the onc had walked through the treatment room about an hour previously so he could have told me then. The receptionist was jsut about to go home so she had to squeeze me in for next week. It is the children's first day back at school and my appointment is at 9am so will have to leave at 8am and also go to the hospital for my blood test with the children on the last day of their school holiday!!!
It also made me worry that there was something wrong with my blood tests and it was too late to ask anybody as the medics had left the building.
Got home about 430pm in a not too happy mood but at least I could eat turkey curry without a problem which is amazing considering it was only 6 hours after treatment.

It is such a relief that the children are of an age where they stay in their rooms opening their stocking presents or rather sack presents until 8am!!! They seemed happy with their lot in their. AJ still believes in Father Christmas but I expect this will be the last year as he has been saying things like 'Father Christmas isn't real in shops' as he is too busy in Lapland making presents for all the children. Hubby bought me a stocking this year - last year i bought him one and he didn't do one for me and this year it was the other way round!! I got a penguin candle - can't burn him - that would be murder!!! A penguin igloo with ginger penguin biscuits in and a penguin biscuit container with shortbread biccies in and a penguin mug so that was in addition to the penguin teatowels from my sister so that was the start of my penguin collection for this year plus a cuddly penguin who has been introduced to all the other penguins in our house!!!
We even had breakfast before proper present opening time.
AJ was so excited with his presents especially the Teenage Ninja Mutant Turtle car and the Dragon's Castle. Laura was happy with her manicure set - now I need someone to teach her how to use it as it was never my forte anyway before the chemo damage set in plus all the other bits and pieces. Woody was pleased with his 20Q improved toy. It is amazing - how does it get the answer from the questions it asks. Sometimes it couldn't guess it until qn 22 but I was still amazed by it. It does tend to ask the same questions though like 'does it have buttons?' and 'is it smaller than a loaf of bread?' but it still got 'lego'!! I got a penguin egg cup to add to my collection and a warming wheat filled cuddly penguin - is there anything penguiny I haven't got I wonder?!!!
I also got a lovely greeny necklace which went perfectly with my green jumper - now need something to hang all my necklaces up on - I'm thinking along the lines of a chrome/silver mug tree as I hate the look of those headless manequin things.
Dinner was late again - 230pm and again we didn't want any tea to eat so now have a freezer full of 'party platter' food and I need the space.
Boxing Day got off to a quiet start and at 3pm, we went off to hubby's parents. Due to a collection of reasons, we were the only ones there out of hubby's siblings but it was lovely anyway. I was definately suffering on the eating front and couldn't manage to eat very quickly and was still on the savouries whilst everyone was eating their sweet course. I did manage to drink well so that helped.
Present opening time and I got more penguin stuff - napkins, slippers, and a guest towel so I was very happy. Probably need to hunt round the house and will find other things I've missed out.
All in all, I had a fun couple of days which was marred a bit by my trouble with eating again.
Hope you all had a good time.

Well sitting here hoping we are all organised for tomorrow. All the pressies are downstairs but we do have a bit of a label/present problem so it could be interesting tomorrow.
Poor Laura came back from camp with such a bad cold and cough that she ended up having tuesday off sick and got some antibiotics for her chest.
Monday and tuesday was school production days so each year group did their own little sketch show or panto. Laura was in the choir bit but had to mime as she was coughing so much, Woody was the techy man and did all the powerpoint bits and music effects etc so proud of them both.
AJ was a competitor in the archery competition for Robbing Hood of Sherbert Forest. He was upset that he didn't have any lines to say but he was definately acting!!!
Tuesday got off to an odd start. My oxygen machine started bleeping madly and at the same time AJ came dashing in saying all the lights were flashing which they were. We went dashing around unplugging things incase there was a power surge but within 5 minutes all the power had gone. It was about 640am!! We were told there had been a fire in the substation but it turned out to be a cable fire at the end of the road. The odd thing was, we could see the houses that back onto ours had power and so did the people who's gardens backed onto the houses opposite us. We then found out that there would be no power till early evening. It was a good job, my emergency oxygen supply is for 10 hours and I didn't really need it now during the day. It was amazing all these things I wanted to do but couldn't cos of having no power. Luckily, we have a gas hob so still could have boiled water for tea - life would have been unbearable without tea. I'd have been forced out to buy one!!! We took some boiled water in a thermos up to a friend as they are all electric. We did get our power back by 1230pm so that was a relief.
On wednesday, one of my friends and her husband came down to see me and brought me a photo album with her written memories in and I also received some other wonderful letters and photos from other friends. Did we really look that young and wear such clothes - how scary!!
Thank you but you've all made me out to be such a lovely person and I don't think that is entirely true is it!!!
Thursday was the children's first day off school which confused me as it felt like saturday. Beginning to suffer again with chest pain and being unable to eat properly again - such a shame so close to christmas - will be having it pureed at this rate.
In the evening my friend who I worked with and who makes cards came round with her guillatine to help me with my photo albums. She has made such a beautiful job, and so quickly, it puts my efforts to shame!!!
Friday, Woody had an almost all day party at his friends house and then returned the next day to go to watch the footie and spent most of the day there.
Saturday night - 2 couples from hubby's college days came over. We had a chinese takeaway and used the dishwasher so it required little effort apart from finding which takeaway to go to. Our favourite had been shut recently and opened 'under new management' because of rats in he kitchen!! What a horrible thought as we used to go there quite a lot so now we are all wondering what we have eaten!!
Sunday, my sister arrived so there was 11 of us for lunch which my bro -in-law mainly cooked and it was such a beautiful piece of pork but unfortunately, I am now really struggling with meat but I did try to eat a little.
Poor hubby had developed a cold/flu thing so spent most of his time in bed or asleep. We opened pressies about 4pm which was rather emotional as I'd put special photos of me with mum and my sister plus a big multiframe photo of us all in. We all got very tearful so hopefully that will be all the tears we shed over christmas over and done with.
Today, christmas eve has been quite a quiet affair and I'm struggling more now with eating and needing my oxygen more and needed an afternoon sleep so roll on 27th and let's hope I can get the same good reduction in symptoms I got last time but will last the 3 weeks. It is so scary being unable to swallow and getting food stuck and being sick/regurgitating. It hurts and effects my breathing as well and I'm scared I might just collapse but usually it just pops out and then I feel better.
Well feel I must have done sommething wrong - don't normally have this much time on christmas eve to be blogging, usually, rushing around trying to get evrything ready.
Merry Christmas to you all and thank you for all your support and help through this year especially.
Kate

I woke up Saturday morning feeling quite well which was a shock but at least a nice one for a change!!
My friend came over from Oxford for the day - we did our nurse training together so have known each other 26 years!!!! She bought over a photo album of us over that time period. It probably should come with a health warning - there are some seriously dodgy perms and jumpers contained within the album!!!
I can't remember always wearing such brightly patterned jumpers but unfortunately, there is photographic evidence to prove it. I also had a very scary array of flowery trousers!!! Definately a fashion victim - probably still am but it would be worse if I was still thin so being overweight probably does have its advantages!!!
Not only are there pictures of dodgy perms, flowery trousers and garish jumpers but it also looks as if I went shopping in Portugal with no bottom half of my clothing on. You can see my T-shirt which is not that long and my handbag and I am probably wearing my bikini bottoms but that is hard to spot. I think I was lucky not to be arrested!!
It is amazing to think how much travelling in Europe I did in the 1980s and early 1990s and I'm so glad I went to Turkey and Santorini during that time as the more I see of these places now, the more commercial it all is.
I know it is not a very impressive list as I've never been to the US, Asia or Australia but here is where I have travelled to:

Italy - Rome, Venice, Naples, Pisa, Pompeii
Greece - Crete, Rhodes, Santorini, Kos, Lemnos, Athens
Malta
France - Paris, Ardeche, Dordorgne, Limoges, Mont Blanc
Luxembourg
Germany
Morocco - Tangiers
Yugoslavia - Porec - think this is now Croatia
Turkey - Bodrum, Kusadasi
Southern Ireland
Wales
Scotland
Belgium - Bruges and Brussels
Holland - Amsterdam
Portugal
Majorca
Spain -
Tenerife
Czech Republic - Prague
Austria - Vienna
Switzerland - Geneva, Berne, Lucerne

I will need to confer with friends which parts of Spain, Portugal and Majorca I've been to but know a lot of them are now highly commercialised and not how I would remember them.

To totally change track - I keep worrying how the twins are coping in camping in this cold weather. It is only 3-5 degrees centigrade in the day and zero at night. I really hope they are warm enough especially at night. AJ is happy as he has his Dad all to himself today as I am entertaining my friend. They have been having a Legofest!!!

Sunday - feel even better and now the chest pain has gone in the day but it was bad at 4am this morning and ended up resorting to oromorph to get back to sleep.
Hubby collected twins at noon. They were so tired and looked ill really. They had enjoyed it and seemed on the whole to be warm enough. They even tried new foods and Woody proudly told me, he ate peas and broccolli yesterday and even tried christmas pudding - he will always try these foods at Scout camp but never at home!! Laura had different sort of cooked breakfast this morning - baked beans, fried eggs, chicken and stuffing and bread!!! Woody had baked beans and sausages.
I have also been able to eat a proper meal that needed chewing and I cooked it all by myself (apart from the mashed potato - but that has a secret formula from my hubby's side). Paprika chicken - haven't made that for a long time.
Another achievement has been, I've not needed any sleep yesterday or this afternoon so feeling very chuffed at present. How long I will feel like this for tomorrow, I don't know. I need to do some food shopping but am going to Waitrose as it tends to be quieter and I might as well use my partner discount there!! Then we've got both AJ's school panto thing in the afternoon and the twins one in the evening. Probably won't be so perky at the end of that.
Decided that as I am coping, hubby will do normal hours next week as we need the money. This time off he has taken to look after the children and me has been counted as sickleave and we are unsure if he has been paid at full or half rate. It also means no overtime money that he usually gets when he is working out on the deliveries. Luckily, he is off monday so hopefully I can cope with 2 mornings before school and then it is holiday time anyway.

After all the doom and gloom of thursday, I woke up friday morning at 1030am!! No pain in my chest!!! I also could manage to eat something other than liquid - I still needed to drink plenty as I ate but at least i could get to eat something more exciting than very thin soup. Feel more hopeful now and feel I was right to push for this chemo.
Saturday evening, we went to hubby's sisters for the evening for christmas nibbles etc. It didn't get off to a very good start as I immediately regurgitated all my food but after that I was fine and managed to eat some crisps and bacon and cheese rolls plus red wine and port!!
Sunday - still painfree and feel well if a bit tired.
Monday - actually went to the shops and did a little shopping. It is difficult to get the scooter plus oxygen in some lifts - Boots is particularly bad for the size of its lift. Unfortunately, I seem to have a chest infection - determined to do this without resorting to antibiotics. Hardly need oxygen at all now but do need it for sleep.
Tuesday - went to AJ's In2 Music concert at his school. They had very kindly reserved me a chair but it was right at the end and what with having a different chair and my oxygen, I felt very obvious and got very tearful and ended up getting a friend to sit with me until the concert started. It was the turn of the guitars, double basses and violas. They also sang as well as played . It was quite lovely but I think we made the right decision withe double bass as it sounded really good.
wednesday - the nurse and techno guy came down from breast cancercare and I recorded my podcast about living with secondary breast cancer. I was actually losing my voice so don't think it will be very good and I spent all my time going on about the children so it will be really boring for those without children. We talked for over an hour so far too long as well.
Late afternoon, I met up with an old (actually she is much younger than me so it is not quite the right word!!!) Folkestonian from work and I managed to walk a little wat without oxygen to the outdoor shop to buy thermal underwear, gloves and hats and a rucksack for the camping expedition. The young lad was really helpful and ran up and downstairs getting things for me as I explained I was unwell. Then when I paid, the older woman assistant was really rude to him about where he had left the pin and chip machine so i made sure I made it known how helpful he had been to us. We then went for a coffee before meeting up at the Bella Italia for a work christmas meal. I actually managed to eat a cannelloni and a chocolate mousse. It was lovely to eat normally again and not have to worry about regurgitating food.
Thursday - felt OK in morning and went out shopping with a friend. She found it very interesting how people just don't see you in a scooter and how narrow places are for scooters and wheelchairs. We actually had time for a coffee and long chat which was lovely as we so often only see each other for a couple of minutes as she hands me her dinner that she cooks each week for us.
In the afternoon, I suddenly felt awful and spent between 2 -7pm in bed asleep. Then felt really fluey and was freezing cold and back in bed by 9pm. Now feeling I've made wrong decision and if this is what my life will be like then I might as well give up now. I just felt so ill.
On a good note, getting responses from people about their memories of me in the past so that is encouraging.
Friday - got up at 10am and feel so ill. My friend is coming round for a chat. At the time, I wanted the company but just wanted to go back to bed and curl up and never wake up. Anyway, my friend came and we had a good chat and she did some food shopping for me. I still felt awful though. She persuaded me to get some antibiotics which I started that evening.
By 7pm - I felt better than I had done for a couple of days. The twins and I packed for their camping trip - yes - they are camping in this freezing weather.
Hubby was babysitting after taking the twins out aud I felt well enough to sit with AJ to watch a couple of episodes of Dr Who before he had a late bed. Then I couldn't get to sleep.
Beginning to feel much better and that it was the right decision so here's hoping that the next cycle I only feel rough for a couple of days. I don't mind sleeping some afternoons but hopefully not all and I hope I don't feel as rough as i did thursday afternoon and friday morning.

I've come back from a very distressing day at the chemo unit. My oncologist thinks I am now too ill to have any chemo at all as he feels my cancer won't respond and it will ruin the quality of my life. He feels there is a small chance that radiotherapy might relieve the blockage at the bottom of the bronchus but it might do more damage to my lungs aand my previously radiated skin. He doesn't think a stent will help as the tumour is too large on the outside and pushing inwards. He did consult with another consultant who specialises in radiotherapy who thought it might be possible to have some radiotherapy but I was indanger of it damaging my heart and lung and skin. This tumour is now around my right side of my heart, my aorta and my main bronchus and the right branch of my bronchus. I mentioned that I was having trouble swallowing and when he looked at the Ct scan at the end of October, he spotted that the tumour is now squashing my oesophagus and that my oesophagus completely disappears in one shot on the Ct - yet again not reported.
We had a long discussion about options - he is not prepared to put in a long line for chemo or fluids and is not prepared to put a feeding tube in so basically I will jsut dehydrate or starve to death and he is saying they would not let that happen. If my oesophagus closes off then how do I get fluid in? eventually, he agreed to try 1 dose of gem/carbo chemo to see how i get on with it but to miss out the day 8 dose. If I tolerate it, then he might consider a long line for the rest of the course.
He feels I probably have 3-4 months left at the most so feel very devastated. I pushed for the chemo as that is what the consultant at the Marsden said this was the best option but he was worried about my ability to rebuild my blood cells.
So now feel am now on the final countdown and I don't know what to do first or what I should be doing.

It was a very strange hospital stay. I either had loads of visitors or none and time went very quickly.
A lot of the other patients were very ill and one lady died next to me which was rather distressing. The lady diagnally opposite me came from Jersey. She had come over originally for a week's course of radiotherapy but went down hill and had ot be admitted. The hotel being paid for by the Jersey equivalent of the NHS were prepared to pay for the hotel whilst she was being treated as an outpatient but then refused to pay when she was in hospital so he was effectively homeless!! Eventually, the liaison officer found him a shared room in hospital accomodation but what an awful situation to think that they will pay for your partner when being treated as an outpatient but if you are rreally ill and in hospital, they refuse to pay for your hotel!!!
There was also a patient who had funny turns at 7am by which I mean very violent turns. He threw a dripstand through a window and tried to attack the nurses with it onne day and another day, he threw a glass and water jug and the other day, he just swore and became very verbally abusive. It was very scary and security took a long time to come up. The rest of the time he was OK but it was something about 7am which made him flip.
I did not see the consultant at all and my own registrar 3 times and other days saw the duty registrar. My registrar kept talking about a 'limited window of opportunity' to get on top of this cancer and desparately tried to get hold of the marsden to give a decsion about tykerb.
I did have a bone scan which showed I had slightly more spread in my rib bones but not much else.
I was still having trouble with swallowing but as I wasn't that hungry it didn't seem that much of a problem. I thought it was still to do with the gastroenteritis so wasn't concerned.
We had to organise the home oxygen which wasn't a problem but they would only give us one unit to do up and downstairs. They did not deliver any portable oxygen or a carrier or a conserver so that you only use the oxygen when you breathe in and it is not puffing out all the time.
I had to come home with the hospital's portable oxygen but before i did I checked out with the respiratory nurses who I had to let know about having home oxygen. They did not know!!! I then asked my friend to google it and found we had to notify the home and car insurance, have stickers in the car and notify the fire brigade!!! Surely the respiratory nurses should know that or there should be a leaflet telling you what to do!!
I came home with a huge supply of pills but not the painkillers - sensible aren't they. I did not come back with my new packet of lorazepam or diazepam so what a waste.

Just a quick note to let you know I've been refused tykerb/lapatinab as now consiered too ill for it. The conultant at Marsden thinks like my local hospital does that I should have a platinum based chemo to try to get on top of my worsening lungs. He is also talking baout this 'limited window of opportunity' as I have deterioriated so quickly. He is also concerned that although there are other chemo options, the spread in my bones means that my bone marrow will not be able to keep up with producing enough red and white blood cells and platelets.
Got chemo this thursday but will try to fill in gaps in between later.

Sorry not to have kept you upto date although I think most of you know now that I've been in hospital for 9 days. Went very quickly but rather scary that time can go so fast and you don't realise it!!!
Well to go back to where I left off on the 16th November!!!
On saturday 17th, we took the children off to their grandparents so we could have a grown up night away with a meal with friends. We went to stay with one of hubby's old college friends plus wife and another one with his partner came down from Cambridge and we stayed in to eat and then played Cranium. Probably if my brain had been fully functioning I would have really enjoyed it and been able to take part more but I felt so tired and weak I couldn't participate properly so sorry about that - I felt a real party pooper!! It is an excellent game and if you are a fully functioning member of the human race, it is an excellent fun.
i got woken up the next morning by my mobile phone which was a bit of a shock but lovely to have a child free morning. Hubby then took me up to Reading to meet my Gobby Gang friends. This time we met at a Beefeater as one of the girls had a bad back due to the imminenet collapse of her lumbar vertebrae due to secondary breast cancer. She is only 30 and was totally unable t sit and had to eat her dinner standing up. I have no idea how she made the car journey -her friend had driven her to meet us as she wnated to meet up. She is very brave but it was so upsetting for us to see her in so much pain.
Monday - now things are getting hazy. Apparently, a friend helped me tidy up in the morning and hubby and I went out to John Lewis in the afternoon but truthfully I don't remember much about the day at all.
Since our wedding vow renewal day, I had steadily been going downhill. I'd had chest infections, cellulitis in my arm and toe plus the infected toe nail and gastroenteritis and kept feeling dizzy, sick and intermittent headaches. i wasn't sure whether it was the increasing amount of antibiotics I was taking or whether i was developing brain tumours. I knew i would have to mention it on my next trip to the oncologist on 22nd November but I became ill before then.
tuesday - i woke up witha really bad headache and was sick several times. Unfortunately, it was double bass and guitar day. I hoped the double bass lesson was late in the day so i could get someone else tot ake it to school but no - it was a 9am lesson!! Somehow, i got us and the instruments into the car and drove to school. The childminder came along and took the double bass off us and I do not know why I left the car and went into the school office but i did. Once in there, it was obvious I was not the full ticket and the reception staff took the children off me and got them out ofthe way and they said I could sit in the first aid room. By this stage, the only way I could move was by holding onto the walls and AJ's teacher had to help me into the room and lay down. The ELSA'a found me the sick bucket and after a few minutes they called hubby to come home and then between the office staff and the ELSAs, they drove me home and hubby arrived about 10 minutes later.
I felt so ill, I didn't want to go to the MRI scan but hubby persuaded me we should go so at least someone from oncology could look at me. My headache was still so bad and I still felt sick but somehow Hubby got me in a wheelchair down to the MRI suite. I again have very little rcollection of the scan apart from being told it would take 45 minutes and they gave me earplugs as it was noisy. i know they had to do some repeat scans and I remember the noise being that of someone drilling the road up but inside your house and apart from that nothing. Good job then that I kept slipping in and out of semi-consciousnessness as I am inclined to be a bit claustophobic so had no opportunity to panic!!!
After this, hubby took me up to the chemo waiting room where hubby had been told to take me to be seen. The receptionist took one look at me and got me into a consulting room so I could lay down on the examination couch where I spent the next 4 hours. Not one nurse came into see me during that time. I was seen by the SHO who tried 12 times to get the cannula (drip) into my arm without success. No chemo nurse would help her as I knew they would be able to do it and nobody took my temperature, blood pressure, pulse or oxygen saturations. I did go down to xray for a chest xray and was sick there.
After Xray, I remained being very sick, I couldn't lift my head off the pillow and kept dozing or slipping in and out of consciousness. I do remember pointing out to hubby at one point that my fingernails were purple but no-one seemed to realise how ill I was and hubby couldn't find anybody to help us.
Eventually, at 5pm I got taaken up to the ward and this poor health care assistant did my observations and found my oxygen saturations were 85%. She was very calm and just said 'Oh they are a bit low. I think you need some oxygen.' Within about 10 minutes of oxygen, my headache went and I felt so much better. I'd been ill through oxygen starvation - bit like altitude sickness I suppose. I was also given an antisickness drug which probably helped and started on intravenous antibiotics for a chest infection and the continuing cellulitis in my left arm.
What a nightmare!! Luckily, mum was coming that day as it was her birthday the next day and we were supposed to be going out for a meal to celebrate it so at least the children could be picked up after school and hubby could go and get my things without a panic.
What happened next - you'll have to wait and see as off to bed now but at least you know I'm back at home writing this.