Having a steroid induced insomnia so thought I'd copy the poetry/readings we had at our wedding as they were so beautiful and for those who were unable to make the service, you can read the poems so it makes more sense in the blog. The twins actually did the 'As I Look Back' as part of their yr 6 literacy. I think it is a very grown up poem for their age.

As I Look Back

Author Unknown

As I look back on my life

I find myself wondering.............

Did I remember to thank you

For all that you've done for me?

For all of the times you were by my side to help

me celebrate my successes and accept my defeats?

Or for teaching me the value of hard work, good judgement, courage and honesty?

I wonder if I thanked you for the simplest things..............

The laughter, smiles and quiet times we've shared?

If I've forgotten to express my gratitude for any of these things,

I am thanking you now

and I'm hoping that you've known all along how much you are loved and appreciated.

Thank You for Coming

Andrea Gabriella

Thank you for coming and sharing our day,

Hope comes from loving, and loving from friends

After you leave, we will be left with the stars

Near stunned by the grace with which such a day ends

Know you coming has helped us on our way

You are the fields on which a marriage depends

Opening scenes no heart can convey

Unloosing sweet music that now will be ours.

Our Family

Author unknown

Our family is a circle of love and strength

With every birth and marriage, the circle grows

Every joy shared adds more love

Every obstacle faced together makes the circle stronger.

I think these are beautiful words and are worth reading in thgeir own right.

Wednesday I went to see the lymphoedema physio to get a new sleeve ordered. My arm is at least 1 -2 cm bigger than last december. I also collected all the goodies from the occupational therapist - good job she is coming round to show me what to do as some of them look very confusing.
I came home to find mum doing the ironing and no children. I knew Woody was out to see a friend but AJ and Laura had been invited swimming with their best friends so that was nice.
In the afternoon, I went off to London to go to a 'Living With Secondary Breast Cancer Taskforce'. It was a long walk from the tube to Westminster central halls but there was food - hurray. It was a high tea really but I had to get the waiters to do my cream scone as I couldn't manage. I met up with lots of people I've met in the forums so that was great. The actual evening was satge managed despite Joan Bakewell's efforts. They would happily answer questions about keyworkers and stats but not about access to trials or how the postcode lottery is still in existence. Anyway, the best bit was a few of us went to the pub afterwards and had a good chat etc and was lovely to meet different people. Didn't get home till 1130 - only to find hubby being ill with upset stomach again. The whole place stunk. I had to sleep in Woody's top bunk which was a major achievement at that time of night and a pint and half of cider!!
So - thursday - it was pack hubby off to his mum's again!!!
I had a lunchtime meeting so mum took the kids to see Ratatouille and then I took the boys to the opticians and mum took Laura home. Woody's eyes have changed a bit so needs new preswcription and to use them more often. He chose exactly the same frame as last time as he didn't see the need for a different style!!!!! Sounds like his dad!!! AJ's eyes are Ok at the moment but needs to be seen in a year as has slight stigmatism.
Friday - We had lunch with mum in law which was lovely and then I saw the neurologist. As I suspected it was another hoop to jump through exercise ie had to see this consultant to get mri. He disagrees with the consultant who did the nerve/muscle conductive tests and thinks it is rads damage and I probably have got scar tissue that is squashing the medial nerve as the pain is less and my movement is better - only 3mm- but it has made a difference in that I can get dressed on my own now!! Problem is now got to wait for mri date which he is putting down as urgent but could be 2 -6 weeks away and then they need to find a specialist to interpret it as apparently very few people have experience of brachial nerve injury. You would have thought as this is the regional neuro unit, we would have one wouldn't you!!!
Anyway, got Ct scan on tuesday and results thursday which may or may not give a clue.
My chest was not getting better so saw the GP again after the neurologist who gave me more antibiotics.
By 5pm, I was feeling distinctly unwell and I think taking all my tablets was the final straw as I was very, very sick and then had very severe diarhoea - bet you're glad I told you that bit. I don't think I've ever been that ill with a stomach bug before and not helped by my chest infection. We called a doctor out but we didn't really understand his english. He gave me an injection which didn't help at all. Think I was last ill by about 4am by which time poor AJ had started being poorly so poor hubby didn't get to bed till 6am!! Both AJ and Laura both got it. Laura was least ill but still unwell. Now hope it skips Woody as supposed to be takingkids and friend to a play area tomorrow.Thank goodness for mum - she kept supplying me with dioralyte and was looking after the children. Hubby looked after AJ who was struggling to get to the loo on time. I just spent the day in bed and kept sleeping. Eventually, I went to sleep at 9am and slept for 14 hours - I only woke up cos the phone rung!!
Somebody has now taken the babysitting book away as I couldn't cope so big thank you to you. Mum in law and uncle and cousins have taken children to the cinema which is a big help and are giving them tea so have time to catch up and have peace!!!
Chest still bad - so will have to see what happens this week. Toe just as gunky!!!
Thnak you to those who have given me cd roms, hard copies. If any of you have any more especially of your family/friend groups would love to see them. I know I'm being fussy but if poss could I have it on CD Rom as computer is not working well on picture front!!
One of my friends has presented us with photos in the plastic wallet in the same way as we had our photos displayed in so thank you for that as well. That is not a hint - I'm running out of space for photos on the walls but have got plenty of room fopr CD roms!!
Guinea pigs are settling in well and now called 'snowdrop' - white fluffy one with a brown flash and 'lightening' - black and brown with a streak of white. Hubby just built a small run for them so we can keep them indoors as they are only 8 weeks old. they are so cute and getting used to us now.
I didn't realise I relied on my painkillers so much cos as I've missed 36 hrs, the levels ave dropped and my secondary in my spine really hurt toady but improving now I've started taking the tablets again. Just worried about my chest - it's so noisy and I'm coughing up so much! Doubt they'll see much other than infection on the ct scan!! Also, temperature still high!! Pleased the children are out - thank you for looking after them

After the high of saturday, sunday felt a bit odd.
I had been fighting off a chest infection but sunday night it just started with avengeance but I buried my head in the sand this time as I was coughing up blood and couldn't admit it. Mondday, I saw the district nurse about my toe who was concerned it was still infected and told me to see the GP. I saw an inexperienced locul who was worried about 'overloading' my liver even though all my liver function tests were fine. She would only give me half strength antibiotics and somehow forgot to mention my chest!! I'm usually good at asking for things and don't normally forget soemthing as important as coughing blood up but she just confused me about my liver. Tuesday, the infection in my toe had grown so I phoned the hospital who told me to up the dose by 50%.
wednesday, my chest was really bad and toe still not better so saw GP who gave me stronger antibiotics for my toe and chest. Within 24 hours, my chest felt better but not much improvement in my toe.
Thursday, I still felt really ill but had appointment at oncology. When I arrived I burst into tears and got immediate attention and was ushered off into thenurse practitioners room and saw the onc immediately. Don't think I'd get away with it every week but that really helped. He thought, like I did, that my chest was better but he was not happy for me to restart chemo due to the infections and is booking a ct scan so we can see if anything shows as still no sign of mri date. He wanted to se me in 2 weeks time as then I would have seen the neurologist and should have had teh ct by then. It seemed a good idea at the time but now I've realised it will be 5 weeks without herceptin so will need loading dose again and no bone building drugs plus, it will have given the cancer time to be be reactive and grow again so sure this scanwill look worse tah if had it whilst still on chemo.
Saw the occupational therapist who has given me a lot of things to help me as there is so much you can't do without the use of your fingers.
Hubby took our friends to the airport at 230am friday morning and came back about 630am. He then went to bed and woke up about 1130am feeling dizzy and sick so ended up packing him off so I wouldn't catch it.
I had a phone call from the special needs co-ordinator to say that the ELSAs and staff were finding it emotionally difficult to cope with our situation so she had phoned the hospice in a non named basis and had arranged for the social worker to come to their inset day on 29th for advice and support. I would have thought that the ELSAs should have been getting supervision from the special needs co-ordinator or the school counsellor and I know the school counsellor gets supervision. It made me feel as if I'm not welcome in school incase I upset the staff!!! Well, that's tough - if I can go into school then I will and it is up to the school to get their own mental health sorted out!!! I gave the school permission to contact the social worker and told them who I work with.
I then had a phone call from the social worker who was concerned that the school weren't coping so she will go in on that monday but is coming to see us this monday and I will tell the children my prognosis this monday and then she will come round to mop up.
saturday - a friend did my food shopping and took AJ to a party and back again so that really helped. My sister-in-law cooked the most fantastic spag bol so a big thank you there. I always enjoy other people's spag bol so I do really enjoy the spag bols that other people cook for me as well!!!
Sunday - Hubby returned -very tired still.
Monday - first day of half term!!! I'm used to facilitating groups but not my own family!!! i used some of the worksheets from 'When a relative has a serious illness'. It was very interesting seeing who they would go to for help, what my illness has meant in good and bad ways and about how angry we all are and how if you worry, you get other pains so they all drew on my badly drawn pictures about the headaches and tummy pains they all get. Laura was very tearful and AJ just hugged blankie but it was a relief taht they knew and we could talk about it. The last few months I've felt they have known but nobody wanted to ask or admit it.
Would you believe just after I'd said I wouldn't live for long, Laura suddenly realised that Snowy the guinea pig was still in her hutch with all the night covers on so she went out and found Snowy cold and semi-conscious so again got hysterical. we managed to warm her up and cuddled her so when the social worker arrrived she had that to deal with as well as me.
The social worker was brilliant with them and they were very honest back and she is seeing us next week so we can talk about how we can work out the anger side.
Later, that afternoon. Hubby and Laura took Snowy to the vets and Laura made the decision to have her put to sleep as her prognosis was so poor and she was suffering. Poor Laura - she seems to have to make decisions or do things that 10 yr olds shouldn't have to. Poor Laura couldn't eat for the rest of the day and cried in her sleep once she eventually settled. Promised her new guinea pigs.
Tuesday -went to see new guinea pigs but need to get hutch properly cleaned etc. Laura much happier now she knows we are getting new pets. Mum also arrived which was a relief as hadn't realised how tired I'd got during hubby's absence and 2 days of half term!!

I had to get up early as had 9am hairdresser appointment. She did my hair well and sprayed it down well was hoping it would stay that way. It was drizzling so felt like a repeat of last time with Hubby being ill and rain!!! The afternoon was supposed to be sunny though.

My sister and her family arrived late morning as they were going to help us sort out the hall. They also made some paper flower decorations as Laura was very keen on adding her own decorative touches. Between, aunty and 2 cousins and Laura they must have made about 100 paper cream and turquiose flowers!!

We took longer to get ready to get to the church hall than we thought, mainly because we needed to take extra tables with us. as I hadn't anticipated that the cateres would need 3 of the 6 ft tables. How much food had I ordered????
Luckily, other helpers were there already and had unpacked a lot of the heavy soft drinks and cutlery and plates etc . It took quite a lot of different variations to get the tables out and enough chairs for everyone to sit on and there seemed to be so much action and movement of tables, it got quite noisy. We saw the celebration cake and hubby's morris minor birthday cake for the first time and we were both very overcome with how much effort and detailed the cakes were. This friend had also made 10 table decorations which were very beautiful. The celebration cake was a fruit cake covered in white icing and decorated with wildlife and flowers which were absolutely exquisite. The detail was amazing. Perfect daisies, dragonflies, ladybirds and a frog plus buterflies and pebbles and autumn leaves. It was absolutley stunning!!! The morris minor was amazing as our friend had apparently been over with the coloured icing to get an exact colour match!! I'd never noticed!!! She had also been raiding our garden for the greenery for the table decorations again - I never noticed!!!!
The children and cousins wanted to be ushers so we dropped them off at the church early. Our friend videoed the event so we could see them directing people to their seats. It also revealed the fact, that Woody is very good at doing a Prince Charles impression with holding his hands behind his back all the time.!!!
The service was very moving, especially repeating the vows as I could see various people with tears in their eyes plus our own watery eyes. I never realised that 'Love divine' had so many verses - sorry about that!! Nor did I realise that it had the word 'breast' in it which was not entirely appropraiate!! Woody and Laura read 2 poems. One was about saying 'thank you' and the other about the inportance of friends. AJ got cold feet so his middle cousin read his 4 line poem about the importance of family. They read it beautifully and I think that moved people as well.
We then did minimal photos with just us 5 plus grandparents. Unfortunately, no-one told me to put my bouquet down so in most photos it looks as if Woody is growing a cauliflower out of his head!!
The reception was busy and squashed but we had plenty of food and hopefully drink. Both hubby and I did speeches and hubby's dad proposed a toast. I think I managed to speak to most people but I know I missed out some so I'm sorry about that.
The evening disco was fun. The children had so much fun and the DJ so good with them and then we had the adult bit so we could do our slow dance and had fun dancing around my manager's Prada handbag!!
Lots of people helped with the clearing up which was a great help especially the early glass washer uppers and the final clearer uppers!!!
It was a lovely day and we had so much fun.
The dvd and photos shows me all the time with a manic grin on my face and this time it wasn't steroid induced!!!
Thank you so much to everybody who helped with the preparations, setting up and clearing away and thank you all for coming especially those who had a long journey. We really loved our day and hope you all enjoyed it.
We raised £700 which actually split evenly between the hospice and the cancer trust so they and us are really pleased with that so again a huge thank you.

The run up week to our renewal of our wedding vows. Rather hectic as still needed bits and pieces. Had a rehersal in the church tuesday evening - it was difficult to get the children to keep still and AJ became quite nervous at the thought of everyone staring at him. We'd found a lovely poem about saying 'thank you' which Woody volunteered to read. He was brilliant at the microphone and read beautifully and confidently. The problem was it made Laura and AJ want to do a reading too. That meant another trawl through the internet but found 2 lovely poems about the importance of family and friends. One was only 4 lines long so thought AJ might manage that but thought I would ask his cousins if he backed out.
Had my flu jab on wednesday - wondered if it was a rsik but had flu jabs before and always been OK. Then I went off to get my face waxed - not an expeerience I would want to repeat too often but just hope it doesn't come bak so thick and dark now I'm only on 1mg. Tgought my face was going down but alas still look hamster faced!!!!
In the evening, I went over to a friend's house to meet up with the other girls who were helping me organise the hall and buffet etc. Seemed still to be so much to think about.
Friday came and mum arrived so that helped having another adut to help me especially as I needed to go to sleep in the afternoon so she could do the school run. Eventually wrote a speech. Phoned up the hospital again and found that the neuro consultant wants tto see me before he refers me for an mri on my shoulder. Not happy about this at all so will chase this up with the oncologist on thursday 18th oct and will ask for a ct and bone scan as not been done since april and as getting so breathless at times and have pain in lower back and right hip as well. Generally, I just don't feel well.

I managed to chat to the ELSA about AJ and how upset he gets when Grandma comes down and she sid that he is settling better in school now and not so chatty. His work is definately improving especially his written work so that's good. Have parents evening week after next so see what they say then. I also managed to talk to the acting head teacher who although sympathetic to our needs is not legally allowed to recommend a school but she will write a letter in support of ensuring that the twins get their emotional needs met and will speak to the admissions office. Now all I need to do is get the forms done and cos of the porstal strike I will have to do it online - hope it works!!
Went to see the third secondary school on monday. This time it was after school and I went on my own. There were after school clubs going on so at least you could see some children. There were so many computer suites - more so than other schools so was very impressed. This schoool does not have a good GCSE achievement rate but then it has traditionally taken children from a very deprived background who recieve little support from parents in their education. As the school system was so muddled last year, there are now children there from what would have been our local school if it wasn't being closed so I think over the years to come it will improve and many children take some of their GCSEs early which seems increasingly more common. There seems to be adequate emotional support and the school nurse is there 3 days a week.
Tuesday - I saw the hospice nurse. She showed me the letter that herself and the social worker had written. It was supportive and stated that the children needed support and stability. This gave me the courage to read the letter from my GP as I couldn't face reading it on my own. This started off by saying that I had been fighting breast cancer with stubborness!!! Me - stubborn - surely not!!!! Hmm - he obviously knows me better than I thought then!!! aagin, it was supportive but whether the admissions offciers will consider that they meet the criteria under 'medical 'needs I don't know as apparently they consider the child's health and not the parent's health. To me though, your emotional health is just as important as your physical one especially in the education context.
I then made a mad dash into town and broke the speed record for using the mobility scooter. got a bot stuck in some shops where they put the rails so close to the lift. This especially applied to shops with children's clothes and shops which are reknowned for their cheapness. The staff were lovely though - all I wanted was a cheap bolero top for Laura to wear over her bridesmaid dress incase it gets cold on 13th.
I then went to the primary school to help with the reading with Yr 3 children. I seemed to have a group who are quite good readers and were reading with expression and fluency. I will get AJ in my group next week so that will be interesting to see if he reads at school to me as well as he does at home.
Wednesday - I went back to work which was nice to have that normality and I think I've now completed the audit I started in March. Good job the audit department understand my situation. I then went out for lunch and then to Boots to get photos printed off for the wedding renewal celebrations so if you are coming, please make sure you have a look and probably a laugh at the photos.
It was very hectic in the evening as I'd fallen asleep so was late picking up the children, and had to get Woody off to cubs for 6pm to receive his Chief Scout's Silver Award and then see the vicar at 630pm and then back to the cub hut for 715pm to see Woody get his award. Then I was off to a chocolate party - even got lots of lovely samples so was pleased and it was actaully reasonably priced as well and not those silly prices you often come across.
Thursday - back to my other job and my manager was really shocked that I was back!! I spent most of the morning proof reading someone elses' procedure and making lots of corrections around spelling, grammar and odd sentences that made no sense. Makes a change from people correcting mine but felt mean doing it though.
Then met another breast cancer friend for lunch which was great as I hadn't seen her for a while due to school holidays and other commitments. She is off on holiday again so very jealous.
Friday - Poor AJ had had a bad cold all week and he said he was told off continually for coughing in school so let him stay at home. I still had a bit of shoppping to do so took him with me. All the children love the cafe at John Lewis so always seem to end up there but they let me down - they had no caramel shortbread which is my favourite!!!
Saturday - Took Laura to the hairdresser to get her hair sorted for next weekend. It looked good but think they will need to use hairspray next week to make it stay. It was lovely to see her without her hair being completely scraped back all the time.
My arm is beginning too really worry me. In some ways, it seems better but I think itis just because I've learnt different techniques to overcome it. I have asked to see the occupational therapist to see if there are different tools or things I could use especially when cooking. I can't make my mind up if I have a new lump under my left armpit but keep hoping against hope that it is just a trapped nerve but really deep dopwn I think the cancer is on the move again as i'm getting more tired, more pain in my right armpit and my breathing isn't as good. Also, my blood protein levels have dropped which when I asked the consultant last time, he just said it was cos I was ill!!! Tried to get through to the neuro team but found out that the consultant hasn't even looked at my referral to decide how urgent my MRI is. Thinkiong what they said last week, I wonder if they will see it as urgent or just as a spread of terminal cancer. Think I will also ask about another bone scan as seem to be getting pain in right hip now and lower back and maybe ask about a general Ct scan to see if my suspicions are correct and that the cancer is regrowing. Then I will have to make a decision whether to try to push for a referral back to the marsden to ask again about tykerb or whether to go onto a tougher chemo which often makes people anaemic and tired and who always seem to need blood and platelet transfusions - I really want tgo delay that as it is also about a 4 hour treatment time and I don't know if I will be well enough to drive back as they have to give you lots of steroids and piriton.
Keep you informed.