Organisation and chaos in the home and improvement in the hospice.
My family are finding it so hard to cope with the different routines that are now necessary due to me being at the hospice. We need to find a system to help everyone to know what they are supposed to be doing and to remember where this system is and how to access this. I'm trying to remove myself from day to day organisation so I can have a rest and others can get used to a new way after I've gone.
Good example was that today, the twins were off to their school trip todayand hubby and I had discussed this and what needed to be prepared before today. 10am my friend brings me home to find three children - 1 a friend - and no bags to pack from the loft and no waterproof clothes and shoes gathered together. Good job my friend is fit and agile and can get into lofts then!!! I supervised the packing and everyone else including the twins did their bit. I wanted them to follow the list and make sure they knew what they were taking and why.
Tonight, thought hubby coming over to see me but AJ had stayed late at a friend's and wanted to stay at home with his dad on his own. No problems with that idea - I wanted the peace and space tonight but in the morning, hubby is off to work aat 630am and who is having AJ then!!! I left them to it and know my sister is seeing me in the morning and we will take AJ to the barbers so he looks less like a ruffian and more like a surfdude!!! Not sure what will happen after that but I need to rest.
Well all that feeling that there had been a mistake and the rads had failed to fire, I woke up yesterday with a sore throat and heavy feeling in chest and this morning woke at 5am to feeling as if insides and outsides of chest are on fire. Started the oromorph at 5am, 8am, 1pm and 7pm. Now on increased level of slow release morphine so improving but hope they don't need to increase steroid as I get so restless but that would be better than the pain.
Now in a side room with a patio and bathroom. Spent lunchtime with large glass of sherry and oromorph plus some aromotherapy so had chilled afternoon.
The confused lady in pain is much better and I feel so much more at peace here now and confident that my dying wishes can be fulfilled.
Now I've even got wifi - I'm a very happy bunny.

Still part of the human race
I really big thank all of you to know that so many people take time to read this blog and it helps us so that we are not always fielding phone calls etc to give out the same info. This makes me feel as if I'm still in the 'normal' phase of life and wanted to be treated as such as well.
I know everyone worries about not telling us some of the sad/ worrying things that happen to them or to somebody we know but we do need to know. Please don't think it will worry or stress us. It stresses us more when we can see there are problems but nobody will tell us what the matter is. Life, birth, death carries on as usual and it is important we are involved. Secrets will come out and it becomes ever more difficult when we don't know what we are supposed to know and yet the visitor/caller/texter is thinking we shouldn't be told incase it upsets us.
Quite honestly, you all know I'm nosy and if I'm worrying about you then it stops me worrying about me and my problems and you never know we may be able to help. I always feel so quilty that I take so much off people with their kindness and I can't repay them so if I can be a listening/texting ear then please talk to me or hubby.
We went through this when I was having infertility treatment and nobody would tell me they were pregnant. I would always find out (obviously!!) and in the end felt more left out.
I know it is done with best intentions and of course, everyone is entitled to their privacy but please don't forget to tell us the important bad as well as good news.
The neighbour over the road has had a baby so that's good news and on the bad front, one of my friends has died suddenly from bc this week - diagnosed 6 months after me and another friend with the disease is also very ill.
We can cope with difficult situations and it does give us an opportunity to be able to repay some help sometimes even if all we can do is listen or text. Besides - I'm nosy!!!!

Feeling Out of Place
When I got here to the hospice on friday, it was so different from the daycare setting and seemed really clinical but now I've made my messy impression upon my bed area it feels more like home. it drives one of the nurses mad as she dislikes clutter!! I just wanted my pics up of the family and the cards on display and the helium balloons and flowers around but she thinks it's messy!!!
I felt so well and as the hospice puree the food in the kitchen here, I can have a normal adult diet pureed. Milky rice pudding and raisins pureed are lovely so is rolyploy and custard puree!!! As I don't like gravy that much, this is the area where I struggle but now they puree it with soup instead so feel as if I'm getting some fruit, fibre and vegetables. I wasn't sure what was in ham puree or beef puree - all one consistency and same colour. If it is pureed in the hospital kitchen, it arrives in a pretty, piped, dried out fashion with gravy all over and tastes like how I would think wallpaper paste tastes
It's different here than i thought as has 5 x 4 bedded bays plus 5 side rooms. It was very disconcerting to find that a lady had died in my bay in my bed about 4 hrs before I arrived and it certainly worried me as it was not how I imagined it to be from all what I've been told about hospices. I've talked it over with the nurses, the special hospice nurse and social worker and doctor and feel that when my time comes they will do their utmost to keep to my wishes in a single room. It would seem so wrong for my family and friends to see me at the end in a bay. It's not what I or they want and I was looking forward to annoying any visitors with my ipod being on all the time as well!!
I had felt so well here upto today, that I felt a fraud not helped by the senior house doctor saying they didn't normally take patients like me. today, as predicted 7 days after finishing rads, my throat burns and feels constricted as does my oesophagus and it feels as if someone is sittting on my chest. Breakfast was painful this morning and the mug of tea also a difficulty so trying not to panic how worse this will be. Dare I say this - my skin is holding on and only looks slightly pink - probably fall off next week now.
I've had some oromorph and if it worsens I know they will increase the long acting morphine tablets I take. Most of my medication is now in medicine form and most taste OK apart from amytryptylline which is so bitter. I know why as it is dangerous in overdoses but it really is bitter and I only have 30mg!!! They started me on a new nerve pain tablet which has helped but it seemed to help at the same time as the aromotherpay did so don't know which did the trick. They stopped me using the heat pads to my back cos of the danger of making any radiotherapy burns worse so that was a blow but the tablets seem to be working. It would be nice to use Had really bad night as well as a lady who came in yesterday afternoon became confused and aggitated overnight, fell out of her chair as refused to go to bed. Said she had pain but refused medication and kept banging her crutches on the floor. Good job I'm on steroids as it is keeping me awake. I was the only mobile one so seemed to be the one who kept getting things for her and I'm supposed to be here for a rest. Know they will sort out her problems if she will let them but she seems either unable or unwilling to co-operate.
Another thing we need to look at incase I get confused so hubby or other relatives can take control so I don't distress others.
Went onto the secondary breast cancer forum chat room last night at my inlaws to talk about how to explain to children you've got secondaries. Very useful but sad and there is no consistency of help in schools etc which seems so wrong and no central registry for women like us to access. The forum members have all helped each other and it was at our long thread that made the charity have a special chat session.
It also made me cross as I had made an hour's podcast about living with breast cancer secondaries around november time and they only broadcast about 2 minutes worth of me prasing their forum so have asked them to reevisit my podcast and see if any of it can be transcribed or rebroadcasted so there is some little bits of info there about how we coped or not coped.
Thanks inlaws for bringing me to and fro and letting me use the computer - much appreciated.
Now off to see what will happen with dinner!!

Quick Home Visit from Hospice
Well after I went home last sunday, the light was fixed in the toilet and eventually the other toilet was fixed as well which was quite a relief.
I carried on having more radiotherapy through my chest and back to get the canver in my shoulder blade, spine and lymph nodes and the squashing tumour around my oesophagus. They came for me at any time and not the one scheduled on my time sheet so that was a bit confusing.
I evetually moved to the cancer ward rather than the leukaemia ward as I could not see my children on that ward. Ended up in the last bay which I'd never been in before and opposite 2 ladies who were still in from my last hospital sat at the beginning of june!! Both looked much worse which is scary.
Had my last rads on thursday but only just as they nearly forgot about me!!! Then on friday got transferred to the hospice. Am in a 4 bedded ward with lovely views out of the window but will take time to get used to the routines etc and not being able to make tea when I want!! On the plus side they do give out alcohol with meals!!! Will go to my usual day care on tuesday so don't have the worry of driving there and parking!!
Visiting times are open except for between 1-2pm so glad about that as need afternoon sleep.
Have had a lot of visitors which has been lovely and now that I'm in the hospice I can have flowers as well!! They are considered an infection risk on the wards so hope to get some flowers as had just got some when got taken into hospital so missed them. Have got 2 helium balloons and some paper flowers Laura made so got something else to look at.
Had a rather frightening conversation with the registrar at the hospice yesterday regarding whether I wanted to be resuscitated. I suppose I should have seen that coming but hadn't. I said yes for the moment as said to AJ I would not die suddenly and so even if they can only keep me alive for a few hours at least I would not have let him down.
I suppose with the fluid round my heart and the tumour pressing on both sides of my heart and the oesophagus it is not a very impressive picture of life.
Before I left the hospital, I had a chat with the senior oncologist, he was quite confident that the tumour would shrink with the rads but the next week or so the pain and swallowing will worsen. He is keen for me to be off chemo as long as possible but will give me taxol or something else. He doesn't think lapatinab/tykerb will be allowed by NICE as the costs outway the length of life it gives which is rather disappointing but not surprising considering the length of time the trials went on for. It has been licenced which means in theory you can get it but the NHS is supposed to use only drugs approved for by NICE so lets hope it doesn't turn into another herceptin saga.
Off to do other things now.

Hospital again, radiotherapy and not being able to eat
As Mags said, I went into hospital tuesday night after being sick for 6 hrs and so was very dehydrated and had appeared to have lost 10lb in a week. I did manage a cup of tea on arriavl at hospital which in true dippykate fashion was not straightforward.
Laura had earlier jumped over a flowerpot and landed badly on her knee and by th evening it looked to me as if she'd chipped her knee cap. Hubby had gone out in morris minor to see his friends just outside of Winchester. I was still being sick from a pureed chicken dinner and whilst I was phoning up NHS direct to get advice about Laura, I was continually bringing up saliva and being sick. The man on the end of the phone wanted to assess me but I old him I would phone the chemo helpline.
I honed hubby so he could come back home and rang his friends and just burst into tears and was still regurgitating so they offered to come down. There was not much time between them arriving and hubby arriving so I think some speed limits were broken!!! Hubby took Laura out but then returned after about an hour as he took her to MacDonalds and they had a milkshake etc and he thought she was OK so brought her home and I was still depsarately holding onot my bowl.He phoned the helpline and they had no beds but said they would phone back when they did. Our poor friends sat with us and my continual regurgitating and at about 1130pm thought it best if we asked hubby's brother to come over. So our friends left and bro-in-law came. He took me to hospital and had to push me in yet another misbehaving wheelchair.
They put a drip up - hooray for Hickman lines - and gave me some medicine so I stopped being sick and evetually fell asleep at 230am.
Wed - got visited by 2 friends and hubby but can't remember what else happened!!! A student nurse helped me to bath and wshed my hair, She was just about to qualify and had never washed anybody before. Unbelievable - when I trained it was the first thing yoou learnt and in yr 3 we were frequently in charge of the ward!!!!
I know they had a team meeting about me and thought best plan was to abandon chemo and start rads asap and then have taxol and they even agreed to tube feed me if necessary. I think they were as shocked as I was that i had lost 10 pounds in a week. Felt as if now lost about 2months of my life but I couldn't go on being sick and unable to eat or I would have died from starvation or dehydration.
thurs - sister and her daughter Magnolia (Mags) visited which was lovely and I needed their support. Had a ct scan which showed lung tumour bigger but oesophagus not looking more squashed but is now dilated above the narrowing so that is where all the food keeps being stored and why so much comes up when sick. Liver one is smaller so gem'carbo must have done some good but central chest lymp nodes now effected. Saw the registrar who said I could have rads planning that afternoon so I did so came back looking like a target for shooting. However, it now seemed that whilst they all still agreed to tube feeding me if needed, only 1 consultant was willing to give me more chemo.
I also saw the palliative care nurse who arranged for me to have a continuous morphine drip and I got an airbed which whistles when you sit on it but is so wonderfully comfortable.
fri - had herceptin but onc had forgotten to sign for bone drug and they had to remake the herceptin up as was out of date by then. It only lasts for 24 hrs so £2000 down a drain!! Had first rads. It is in the central area of my chest and is done on my front and on my back but is over skin where I've had previous rads so danger is skin might break down and not heal.
Saw the children in the day room as am on leukaemia ward so children not allowed. Also another friend visited which was lovely.
Saw the consultant who said I could go home over the weekend in the day but never wrote it in the notes!!!
Also saw the dirtician who gave me ideas about a pureed diet.
Saturday - waited for the doctors but got forgotten so couldn't go home so very upset and ended up with really bad shoulder pain.
Sunday - came home for a few hours. Very glad as toilet crisis on ward. Only 1 toilet between 12 patients. One toilet reserved for man with diarrhoea, the handle fell off the cistern in the other and even the one we could use, the light switch is broken and there is no window -only the emergency light so it was weeing in twilight - not great!!

Mags again sorry, Poodle WONT be in the hospice full stop btw she WILL only be in there to rest and recover after such strong radiotherapy. Sorry if stressed anyone.
Love Mags
xxx
GET CALLING TEXTING COMMENTING

Hello all this is once again Mags...Unfortunately...
Poodle has been taken into hospital again as she couldn't swallow and was regurgatating everything, she couldn't even swallow her own spit. She is quite upset and frightened as we can all imagine. Poodle is going to have to have the radiotherapy asap instead of later like she planned. She will be going into a hospice after as she will need alot of looking after so I am not sure if she can update anytime soon so I will try and update you if not. She needs alot of support and calls and texts. Sorry to be the bearer of sad news. LETS BE UPBEAT NOW.... We all know she's a fighter and I know she has the fight in her...she's not beaten yet!
Love Mags... GET TEXTING CALLING COMMENTING I WILL SEND ALL BEST WISHES HER WAY IF YOU CAN'T CALL.. THANK YOU FOR YOUR SUPPORT.
xxx

I must have totally overdone it on holiday as I only woke up at 1115am on sunday morning and that was because Woody was concerned that neither hubby or I had surfaced!! I immediatley did 2 loads of washing and then decided I felt so awful and my mouth just burned throughout so in the end I phoned the chemo helpine and got told to go to the ward. I was obviously not in the best frame of mind as I just thought they ould take some blood and give me some mouthwash and then go home. WRONG!!! They wanted to admit me and as my blood came back showing I was dehydrated and anaemic , I needed intravenous fluids and 2 units of blood. It took ages for the mouthwash stuff to be sorted and for the doctor to write up all my painkillers etc and he still missed a lot out.
As the car was in the carpark, I had to get hubby to come over so he could bring me my clothes etc and collect the car. Luckily, my friend and her husband came over and she packed etc and looked after hers and our children so that her husband could drop mine off to give me my stuff and collect the car.
I was in the ward I liked but in the place that overlooks where the dustbin men come and the crusher is. It was very noisy and they started work at 545am and often we didn't get our night tablets till 1145pm so had very little sleep.
Although my care was fine, it was very upsetting to see the elderly and frail and confused lady opposite me getting such little care. The nurses never checked she took her tablets so were often left there until the next drug round. She also had a sore mouth but never used her mouth washes as she kept forgetting what to do so in the end as I had the same as her, evrytime I did my mouth I would get her to do hers. Isn't it terrible that such basic care is missed and so dangerous not to know when or if she took her medications.
It gave me a lot of time to rest and I got on quite well with my life story and cross stitch.
I came home on tuesday lunchtime via my friend bringing me home to find the suitcase from our holiday still unpacked and the dry washing oin piles on the settee. I was o upset and tearful. Anyway, my friend helped me tidy up and she did loads of ironing.
It was our wedding anniversary so we ordered a chinese takeaway which was disastrous as i could not swallow it and regurgitated all night upsetting Laura particulary and really all of us.
The next day when I woke up at 9am I felt terrible. I had a bad headache, I was sicxk and felt hotophobic. I got my friend from over the road to come in and then another friend arrived to help with cleaning and washing and looking after me. Then another friend came so she gave me a cold compress and took me to the other hospital to see the consultant radiologist. After all this confusion in the hospital about how bad my bony spread was now and how rsiky radiotherapy was I did not want to miss this appointment. I must have looked a sorry sight with a cold compress on my forehead, dark glasses and her massaging my neck. It did help though. We waited over 2 hours to see the consultant who told me that now 3 chest vertebrae had cancer in as well as my left shoulder blade and in my ribs. We had a good discussion about when to have the rads as the rads to my oesophagus will mean that I won't be able to eat properly for 2 -4 weeks so trying to tie that in with the school holidays as well.
Raher worried about this especiallyas 2 women who have had this type of rads to the oesophagus said it was extremely painful and they couldn't swallow or talk for about 4 weeks. So think I will need to alter my plans and have only 1 more gem/carbo next week and then rads and then that gives me time to recover before the school hols begin. The only problem being if my breathing doesn't hold out for that long as it would be about 10 weeks till they restart school and the me I wanted to start taxol. I've never managed to be off chemo for that long before so can see may need some taxol before the 2 weeks holiday with hubby etc in mid august. What a dilemma!!
The next dilemma is to decide on hymns, a scripture reading and whether to use the video service offered free to the crematorium so that people who can't make the service can still see it via a password protected video link to the PC. Does that sound odd to you? Would you watch it if you couldn't make the service?
All feels surreal and my not having this last gem/carbo I feel I'm shortening my life but hopefully the quality will be better as really can only swallow soups and milk puddings at the moment and the children are getting so distressed by my constant regugitation. This all seems so unfair.
I've spoken to the social worker and Simon Says and will see the hospice nurse on monday as want to see if swallowing and pain is so bad whether I can go into the hospice rather than the hospital if I can't cope at home.
All in all a very worrying time but at least I know why my shoulders are so painful now.
Kate

Half Term
Oh dear, I seem to be behind with my blog and it's going all out of order again!! Hope I don't confuse you all too much.
Woody went off to his scout camp for the Bank Holiday weekend and it wa actually dry for him until the day they came home when it just chucked it down so he brought home lots of mud, leaf mulch and wet bedding, shoes and rucksack. Trying to get leafmold out of a sleeping bag is an interesting experience. They had spent one day making a raft and falling into a manmade lake so all those clothes were absolutely soaking and very muddy!! There was even leafy bits in his underpants!!! It had rained so much that the water came in under the tent so he was sleeping in puddle!! He seemed to have enjoyed it and came back with the usual bruises and cuts from falling off go karts etc.
That evening, we all went off to see Brainiac which is a science based programme on Sky. On telly they have done some amazing things like seeing Jon Tickle fro big Brother walking on top of a swimming pool of custard!! Unfortunately this is not practical in a theatre!! It was a brilliant show and very funny but there was quite a bit of toilet type humour which didn't seem appropriate for some of the younger children. They did some exploding experiments and an amazing smoke ring experiment. They also did some very funny things like spinning on an office chair by first of all by using his feet, then a fire extinguisher and then a rocket. It was quite a manic show but worth it.
The next day we went off to Kent to stay with my mum before going off to North Kent to stay in a caravan that a friend had kindly lent us. Tuesday night, there was a tremendous thunderstorm but apart from waking us up didn't think much about it. When we got to the caravan site, we found that there had been no power since 230am. Our friend had made up all the beds and provided us with food and towels. The children went off into the outside swimming pool whilst mum and I unpacked. that afternoon as it was still drizzly, we went into Ramsgate. There had been flooding overnight there and several shops were closed due to flooding and there was lots of mud everywhere. We tried again to buy AJ shoes and failed but bought Woody some socks. He had forgotten to pack any. He might get away at scout camp by wearing one pair of socks all week but not in my company!!! We had a lovley cream tea before going back to the caravan via a scenic route.
Thursday - my uncle came down as did my sister and her youngest 2. We sent the children off swimming so we could have an adult chat and found out a lot about my father's side of the family which was fascinating but not something I want to post about here. In the afternoon, it poured down so we went to an inside pool which had a flume and a wave machine. The flume must be the slowest I've ever witnessed and the wave machine seemed quite pathetic as well but they enjoyed it and we enjoyed the rest.
I'd been suffering from 2 mega mouth ulcers since monday but now the whole right side of my face was swollen like a hamster cheek. I phoned the chemo helpline but as I didn't have a temperature they felt it was OK and if it was still a problem when I returned to go to the hospital. It was a relief not to have to go back to that hospital in Kent. That evening we ended up back in East Kent in a Beefeater for dinner. I had to reject my dinner. The description was 'mushroom and spinach pasta in a blue cheese sauce'. The pasta was hard. The spinach was rocket!!! I had 3 thin slices of mushroom and the sauce was minimal and didn't have any taste of blue cheese at all. They were very good and I had a ricotta and spinach cannelonni which was much better and easier for me to eat.
Friday was dry and again my sister and her 2 came back down and we went to a wildlife park. There were some fantastic peacocks, meercats and prairie dogs who were so cute. We spent the day there and then came back for tea and then I took the children to the nightclub. The 2 boys went on stage and told a couple of jokes. Then it was adult bingo time. I have never played bingo before and had to ask a couple next to me how to play and what to shout. I bought 3 tickets the first time and didn't win anything. Then the second time I bought 6 tickets and I won the full house. Unfortunately, so did another woman but still came home with a £60 profit. I can see why gambling is addictive!!
Saturday was a hot, sunny day so we went to Broadstairs. The children even went in the sea and there is even an oldfashioned lido which was visible when the tide was out. Laura had a lvoely time with her net and bucket and caught several little fish, shrimps and crabs. She also got nipped by one. I played swingball with Woody which was great fun and not too exhausting as I coluld just stand still and hit the ball when it came round. Asit was a saturday, we didn't want to leave until after Dr Who. By this time the hot water had run out so I just put one limb in at at time to wash the sand off and the children went swimming. We got home about 1030pm so just went staright to bed. It was brilliant and really hope we can go back again. Thank you so much for letting us use your caravan.

Hello again this is Mags just adding a lil bloggie for Poodle :) just wanted you all to know she is in hospital again.. only till tomorrow.. hopefully...but send texts and call i know she loves company to teh outside world and now for a story shall we say...mmm?
Well my aunt had a great half term staying at a nice caravan they went to the beacj children went swimming saw my mum and the kids always fun... they did go the last two days with no hot water... very er...refreshing? especially after the beach and jumping in a minus a million degrees shower?!!!! ARGH. However she did win at bingo.. even though she says it was her first time... i don't believe her i think she's been on fox's bingo website if anything... damn beginners luck lol... AJ was quite happy asking to put the winnings even tho they were split with a fellow bingo lady into saving for a Wi or however it is spelt.. not gonna happen.. they have enough electrical whizzy things as it is it's going toward a nice day out =D...anyway she did have a brilliant time untill the holiday ended and she realised she'd over done it and was confronted by BEAST MEGA ULCERS. Or BMU as their medical name referred to... :P. She has now had to have 2 pints of blood as she is very anaemic and all in all feeling a bit crappy... time for all the loving texts people.. I EXPECT A TIDAL WAVE !!!!!! oh dear my grammer and spelling is awful I do apologise Poodle... Hope I have done you proud.. my Bingo-ing Poodle <3

Love you always

Your Mags

xxx

much love guys get sending and calling!!!!!