Failed Surgery and successful Surgery - Saga Continues
Despite all my best efforts, I ended up at the General on friday 18th June in the morning and the sister did manage to get my line working. I drove up myself so was pleased I could do that and felt safe. She told me if I felt no better then to get admitted as I stood more chance being operated on as an inpatient than as an outpatient. I intended to do this after the family photos on saturday.
Fate had other intentions and friday evening I felt ill and kept falling asleep in bed with a cup of tea on my lap in bed. Laura kept waking me up to make sure I didn't drop my tea all over my lap. At 10pm, I felt very ill - it was almost in a labou pain sort of way. My stomach would constrict and loosen like labour pains or braxton hicks. We decided i needed to go in so Pete's parent's came to sit the children and Pete took me to hospital. I got the ward I wanted and was next to a lovely lady so that was OK.
They tried to do a stent via an endoscopy on tuesday but it failed as my tumour has not shrunk around my oesophagus so they could not do it as the hole needs to be at least 12mm and usually is about 3 cm so that was discouraging.
The next bit is about what happened next -
I had my stent put in on wed 23rd - the anniversary of my dad's death so wasn't happy about the timing but glad they had brought it forward as they were saying friday 25th as a maybe but probably next week 27th!!! I think my onc went mad and suddenly it was going to be done that afternoon.I had a ptca (percutaneous trans - something or other) which is more complicated that an ercp. They did not use enough sedation or pain killers and it was the most horrific thing I've ever been through. I could feel them push all these wires through me and kept screaming. In labour, I only ever whimpered!!!It took over 2 hours when it should have been about 40 mins but they told me it was more successful than they had hoped. I didn't feel too bad when I got back on the ward apart from falling asleep all the time and hallucinating a lot. The problem was everytime, I woke up they gave me oromoph even when I felt full of wind. I was able to get out of bed aafter midnight and off to the loo but by 8am the next day couldn't move. I got no help and just kept falling asleep and being given more oromorph!!! By 1030am, they were concerned by the amount of pain I had so organised a chest xray and abdo xrays. Nobody helped me apart from the porter who got me out of bed onto the wheel chair and into the toilet where he had to find me some loo roll. I was in tears by this point and shouted at everybody. Eventually, a student nurse came with me and she looked after me the rest of the day and gave me a bed bath. Since then, my pain has been not so good but it is very much wind pain and I'm severely constipated but it's got trapped on the far side of the bowel so had to have lots of different enemas and tablets - good job it was the bowel cancer reg's ontake team this week!!! Am home to just update myself and hope look less swollen tomorrow. I felt better till had my dinner and now just as swollen again. My jaundice is definately going but it is the wind and constipation that is the problem.Hope to come home mon or tuesday. Radiotherapy has failed on shrinking my solid tumour in my oesophagus but has made my breathing better so glad I can sleep flat now and it has helped my spine and shoulder blade pain so that is good. It is just so disappointing not to be able to swallow anything wider than 1cm hence why they couldn't endoscope me.Meant to be starting weekly taxol this week if bilirubin is OK. I had hoped to start this at end of sept but if a new tumour can appear within 3 weeks and block off my bile ducts I can't take that risk.
This week has been decorating week and I have resisted the temptation to peek in the room so look forward to seeing it next week. Thanks to you all for the organising, actual work and contributions to the task which as usual was the task from hell due to the previous owner's DIY skills and old, cheap bricks and plaster work.
Kids miserable due to heat so glad to be back to hospital I think now!!

AAAHHHHH - STILL NO DATE
I've spent this morning trying to chase up again when I'm going to get this stent put in. Eventually, the chemo co-ordinating sister managed to get hold of my oncologist who told her that I'd been discussed at the liver team meeting yesterday but the operation would be next week and the appointment would be sent by post!!!! He also said for me not to chase as it is all in hand. That's fine for him to say that but I need to arrange childcare and hubby needs to let work know - don't these people think!! Felt fine this morning but feeling all hot and sweaty now so obviously not doing as well.
Then the district nurse came and one of my hickman's lines won't flush or pull back so rather disconcerting. She tried on two different occasions and still no luck.
Tried the GP surgery but they said the poor oncologist's secretary is getting nowhere with the liver people at coming up with a date.
Now left very scared as feel if they don't get stent in quickly I will be dead in a matter of a week as you can't live with a climbing bilirubin for that long befre permanent damage is done.
Plan after discussing with the chemo sister is that I go in tomorrow first thing and get line flushed out and blood tested to see how high bilirubin is and see if that puts me higher up the list.
On top of all this, I've been food shopping with mum, starting to organise packing of our bedroom for the decorating to start monday. Just to add to the fun - the twins remembered this morning that they needed buckets and sponges for their side stall today at school which is a charity raising event so at 9am I was out waiting for the shop to open. They've had all week to remember this as well. Now mum is busy making a toga for AJ for Roman Day tomorrow. I hate these dressing up days. Whatever the theme, I always end up having to either hand sew or machine sew something - at least mum is here and can do that for me.
Feeling very hot and sweaty now so need to sit and rest.
Let you know tomorrow what is happening.

Help needed thursday 17th, friday 18th and sunday 20th July
I've a friend coming to do the ceiling on monday and it has just clicked that apart from another furniture shifter - have got 1 volunteer and hubby but could do with a couple more on sunday, I need to pack my clutter!!
So is anybody free today or friday to pack and bring over cardboard/storage boxes between now and then. Got newspaper to pack but if anyone got spare wrapping tissue could do with that for some non valuable but sentimental ornaments?Can anyone get me some boxes - if not in, leave behind car on drive in the presumption, nobody would steal a cardboard box would they???!!
Also not sure who volunteered to strip walls so need steam stripper and volunteers for next week to strip and put up wallpaper and paint.
Anyone free today or friday to help pack stuff? Just txt me first incase have to go to hospital to chase the liver team but a lot of it is self explanatory so quite happy for people to be in house alone
Thank you so much for all your help.
It really helped yesterday to be distracted by looking at wallpaper/paint so would help if could have help today.
We're so grateful. Hubby can't believe how much people will do for us and we really have no way of saying thank you apart from words and maybe a bottle of wine/beer.

NO NEWS - VERY ANGRY AND SCARED
Really angry - despite onc telling me the liver team would discuss me and let me know what the plan is, I've had no call. So after lunch, I've phoned the onc's secretary, registrar and chemo helpline. No-one knows which liver team I've been referred to but my onc has been trying all day to get an answer and had no joy. Would have been nice if he had told me that he had been trying though so tomorrow am going up to the breast cancer chemo clinic and kick a***
I look more yellow and wee is darker so know i'm worse but not going to casualty yet as have felt worse and it's only a few hours till morning to see someone.
DECORATING MY BEDROOM
Spent a lovely morning going round different DIY stores and despite the turquisey blue being the latest fashion, it seems that it is only available if you want patterned wallpaper. I know we could line the walls and then paint them but one layer of wall paper would be best. Think we've now found one and it was the cheapest as well!!!
Looking to buy new wardrobe doors which would be easier to paint rather than strip down and paint the louvred doors. B and Q were advertising on line, the doors we want but in the shop we've been told they are out of stock and not being reordered despite lots of people wanting them!!! Odd way to make profits - stop selling what people want and only stock what people don't want!!!
My friend actually has an old carpet that would fit and suit this wallpaper so she is very kindly going to let us have it, I think as we obviously need to measure it first!!!
So that has been a really positive side of today.
Thanks for the offers of help - think we will need help on sunday to move some furniture so that the ceiling queen can start her work!! Any offers???!!!

Becoming Yellower but Reason Found!!!
After a long day at the hospital, firstly to see the Gut Nurse about AJ, I had my CT scan done and then it was a long wait to get the result.
As usual, nothing to plan and my body being awkward!!! No consultant radiologist available so my consultant had to find the liver one who was also away so he had to see the registrar. Upshot is that they can see enlarged lymph nodes blocking my bile duct but it is a long way up into my liver making putting in a stent more difficult. The stent is a plastic tube they will put into the blockage so that the bile can flow and I can digest food again and my skin won't be yellow. If they can't do the stent via an endoscopy then they will have to do a cut and put a bag outside and then review and try again.
They are having an urgent meeting tomorrow so should hear tomorrow at some point when can go in. It might not be this week even if it is urgent so bit concerned at delay.
My blirubin has gone fro 70 to 200 from wed to tuesday - not itchy and hope it stays that way but then of course it looks as if I'm coping when I'm not. I feel ill when I eat and get all hot and sweaty but so hungry so have to eat frequently and small amounts and still pureed foods
Let you know more when I do
Thanks for offers of help with decorating - let you know when got this sorted tomorrow.

Asking for help and unfairness of carer's benefit and how to help me
Still very yellow but getting used to it - the trouble is deciding whether I want to try camoflauge by wearing yellow or be obstinately awkward and wearing something bright and clashy like purple!!! I'd ummed and aahed about 8 weeks ago whether to buy the yellow or turquiose shoes and skirt. Think I made the wrong decision colourwise but wore my yellow shoes out of defiance yesterday!!!
Went out shopping with mum for a couple of hours yesterday. Sheer heaven!! Driving my mobility scooter around an looking at things. Am so weak that even steering was hard work but it didn't hurt my chest so that's good especially as have reduced morphine to 30mg bd now for 48 hours and didn't need oromorph yesterday - did need some diazepam to relax my tummy and shoulder. Realised as I went to bed that had 0.5mg of clonazepam and the label said to take 2 at night!!! no wonder some of my nerve pain had come back.
This weakness thing is quite scary - if I looked at things to buy mum had to hold onto them for me or they got 2 heavy!!! Even a single duvet cover was too much too hold. You can see my arm muscles and leg muscles are disappearing. They've not been that skinny ever.
Good points - nobody stared at my freaky yellowness and infact were kinder than usual and didn't get that look of 'why is that young woman in a scooter when her elderly mum is walking and carrying everything?'!!!
The shop assistants were more helpful as well. M and S are gast becoming on my hit list for porr disabilty access. The new customer services area has shrunk so it is impossble to turn the corner from the queue into the desks. I did write and complain but no reply yet. Now the home department is impossible for me to get round. It's so crammed I can't turn round corners and 1 aisle was too narrow which must be illegal. It's also the most stupidist pplace to have narrow aisles as it's where all the glass and crockery is and they were in danger of me hitting the display and knocking it all over!! It was very tempting to have an 'accident'.
I also managed to eat a slice of cake in M and S - the capuccino sliced one so pleased.
Last night we had friends round and I had pureed Indian curry but the rice I managed withe puree. I did manage the roasted vegetable crisps and houmous and a few olives before the food was ready. The olives did feel as if they going to get stuck so only had about 4 which was disappointing as they were such lovely and garlicky ones.
Woke up this morning at 6am - these bloomin' bowels and needed a cup of tea and will go back to bed in a mo.
Roll on tuesday and the CT scan. Just hoping I can get through the next few days before the jaundice starts to get itchy as I'm dreading that and then hope they can see something that is operable and not painful and need to start chemo again. Think if nothing shows then will demand that I have urgent endoscopy and ercp (that means they look into the bile ducts) and referral to liver specialist as I don't want to wait any longer being this colour and darkening day by day. I'm also very desparate for something to be done so that I don't get itchy as well which is what happens if you are jaundiced as the bile goes into the skin and wee and not into the digestive tract and causes itchyness and being unable to digest food.
Carer's bit
Have been finding all the relevant details for my FAB assessment by Council to see if and how much I have to pay for my 4 hrs of personal and domestic care. The form and info is designed for the elderly as it lists all sorts of benefits for the elderly, pensions and nothing relevant to my income and expenditure relevant to the cost of my illness. We are trying to work out what extras I have to pay for ie - petrol for continually using car for everything especially to collect the children from child care, insurance for my scooter, special food to puree and anything else that is related to my illness that is extra. I think it will look as if I get lots of money as I get extra working tax credits due to the DLA element and I need to prove that this is not enough to pay for my care.
My friend has found me a carer for the 35 hrs and should be eligible for the £55 pw carer's allowance. Isn't that disgusting - the minimum hourly wage is over £5.50 and yet the Government see fit that a carer can earn less than £2 an hour!!! It's so wrong.
Help for Me
I'm now getting a bit more bold to ask for help especially when friends and neighbours who I don't know that well come round. I'm too weak to bend about and the kettle seems heavy so it's make your own tea now so this plea is bigger and needs a degree of organisation!!!
Quite often people ask us how they can help and we can't always think of things as other people are doing some of the more traditional help like houseworky things but this is bigger and requires a group of reasonably fit people to work together ideally
My sister in law has been wonderful and been round to help sort out Laura's bedroom so that hubby can make a start at somepoint in building her a new bed so that she has more room in her box room and hopefully be more tidy. The boys room is another project he wants to start but I've gone into selfish mode and want our bedroom done first.
I spend a lot of time there and really would like to have a decent room to rest in and receive guests into when I'm feeling grotty.
I know the sensible option would be to pay a decorator but we can't afford that so the only option is to beg and plead for a group of people who can ideally work together - not good timing I know as school about to finish and people have holidays booked but will beg you lot anyway!!!
As I think I've said before, the previous owner loved borders so have swirly beige wall paper and pink swirly borders that run up and down any door and corner, around electric sockets and light switches!!! Interesting!!! Uum - really want to highlight an electric socket don't we!!!
So what needs doing is as follows -
Wallpaper needs stripping, plaster to be retouched as the walls are old and plaster poor. Then either wallpapering or putting up lining paper and painting over the top.
Skirting boards, door frame to be stripped and painted - ceiling could wait but that be nice but is really the icing part of the cake so not essential.
Does anyone fancy stripping and repainting the slated doors on the 2 double fitted wardrobe doors (4 half doors) and 2 overhead cupboards (4 half doors)!! Thought not!! They could be taken off and done at home if easier although the framework needs repainting.
Hang new curtains.
The carpet can stay as it is beige and we can live with that.
Then we need someone to remake our bedhead as it is material covered and needs repadding and recovering and to match new curtains etc. Anyone know someone who could do that?
So with bated breath, dare I ask if there is anyone or a group of people free to have a decorating session asap with the thought it can be done over a few days and not last for weeks - many hands make light work!!!
The room's not that big and there's not that much furniture to move and it is the tidiest room in the house!!! Really begging and pleading now!!!
Any ideas/help welcome? Please don't be shy!!!
Can't really believe I've got to this stage in my life and desparately want the bedroom doing but it was done 11 years ago by the previous owner and I would like to be comfortable and happy and relaxed in our bedroom in the next few months as no doubt will be spending more time there. Bad timing on this cos of hols but if you're local and have some time and can do anything to help, it would make me very happy. I know I have friends/family who don't know each other but should be able to work together on this so if you could help at all or know someone who could Please could you either email me or leave a comment here so that I understand who you are.
Thank you - don't why I didn't think of this earlier in the year!!
Kate

Mystery Like Jaundice Deepens!!!
Well when do I do normal things ehh??
Have caused great excitement at the hospital today as nobody knows why I'm yellow and my bilirubin is raised. It is 76 so up but not dangerously high yet.My bilirubin levels were normal 3 weeks ago. The Ct scan from 11th June has been rechecked and there is nothing wrong with my liver apart from the 9mm one tucked away at the back of my liver and is nowhere near my main blood vessels or bile ducts so they are mystified as to why I'm yellow with raised bilirubin levels and general liver dysfunction.
It is getting more noticeable - Laura asked me this morning why I was yellow. I suppose it didn't help being in the sunlight in a yellow kitchen but has worsened since last night.
Had ultrasound today which showed that my bile ducts are enlarged and full of gas!! My whole tummy is full of gas - I feel like I've been invaded by a cross between the slytheen (the green monster things in Dr Who that unzipped their human skin suits, made appalling farty noises and were killed by vinegar) and the fat busting pill story where every night, a little fat toy like thing escaped out of a human body and ran out of cat flaps to join their 'mother'. Again, the person made strange farty noises and every morning, the human felt and looked visibly thinner!!!
I've lost 6kg in 2 weeks despite eating loads. Everything I eat just pops out the other end undigested. You do not want to visit me unless you are immune to smells and noises!!
The consultant radiologist said I had an odd liver - well nothing else so far in my bc journey has been normal so why start now!!!
They don't know if it is an infection - apparently that causes gas in the liver but not got temperature or any sign of an infection apart from a wee one so presumably my poor body is feeling overwhelmed by something.
Other possibility is that the cancer has caused my bowel and bile ducts to fuse together but too small to see on scan yet.
Got CT on tuesday and if nothing seen then either MRI or exploratory op to see exactly why there is gas and bile duct enlargement.
Onc feels my lungs could cope with the op and wants to treat me with whatever is right eg operation, chemo, stent so at least he is on my side now and I'm keeping them all busy with a different as yet unidentified diagnosis - so they are all excited and I'm scared stiff I could be dead in matter of days/weeks if bilirubin levels rise and no cause found or no treatment available or have an overwhelming infection as my bone marrow is so worn out from previous chemos.
Will see how goes over weekend and will go straight in if worsen.
Must go - need to lie down as only thing that relieves pain and wind.

Going Yellow
Just came out of hospice today after having blood tests for herceptin and zometa tomorrow and been to see my GP who confirmed that I am jaundiced and my wee is showing bilrubin.I told them last week in the hospice that I thought my wee was going dark and poo pale and yesterday definately looked yellow.
So - is this a drug interaction or rather a sherry and drug interaction or have they missed something again as when I had my last ct scan 4 weeks ago, they were so concerned about my oesophagus and heart that they did not look at my liver properly.
The onc has just rang and said he hasn't got hold of blood tests yet but ct shows only pre-existing 9mm liver met tucked away in a safe place. He will ring me later if levels high and will have ultrasound tomorrow as well so should be reassured but scared stiff. Only been off chemo since mid may and ct scan was 4 weeks ago so hoping this is just a drug interaction problem and not a rapid new secondary.
I want a chemo free summer!!!
Kate

Sunday 6th July
Had a very lazy sunday morning and just lolled around in my PJs until after lunch. I then tried to make an aqueous bath as fun as possible by using the shower hose to get as much bubbles and foam as i could. That 's the problem with skin after radiotherapy, you can not use scented products on it and as this area is quite big, the only thing to do is to put scoopfuls of cream in and sloosh till bubbly and then hope you don't fall over when getting out!!
Bay 1 has the reputation of being the boozy one!!! We'd missed out the other evening and we made sure we didn't tonight and all got our drinks.
I'd spent the afternoon filling out the memory books for the children, It's so heart wrenching - 'What are your ambitions for the future', 'how can you change things?' There is no nice answer to that - of course, my answer would be to be well, see the kids grow up and we all grow old together as friends and family but horrible to think about my lack of future.
The other women in the bay have been lovely and quite delightful at times. We've had some good jokes and moans as well We've had a good camaraderie and looked after each other emotionally - I'm the only one that can do things physically and that's very limited and I won't do it unless I'm sure it will not hurt me.
Last night, 2 of them started to go downhill quite rapidly and it has left me feeling very distressed. They are in the mid 70s so have led full lives upto now but it is horrible and scary seeing them suddenly deteriorate so rapidly and the stress you can see on the families' faces. I couldn't settle last night as one lady kept moaning, very softly but it upset me to see her like this and I didn't understand why they didn't call in her family as she wanted company and I wanted to sit and hold her hand but of course didn't as I wanted to sleep and i don't know her wishes or feeliongs about this as well. The other lady has been so normally bright and optomistic and hopeful she would adapt to her physical difficulties but suddenly went downhill with a chest infection last night and to hear her breathing so badly and getting so distressed about it upset me greatly. They called her family in at 6am but they are looking lost and confused and I'm beginning to wonder if they were ever aware of how poorly she really was when she came over here and if they thouoght she would go home.
It's suppossed to be rest time but I can't lie and pretend to go to sleep in a bay with 2 dying women and their greiving families. The other side of the Hospice has also got dying younger women so big families are there who are rightly upset over that side so running out of places to be quiet and do what I want to do and be discrete about it. I need a lovely little room or the rain to stop so I can be outside and that's not happening either now.
Onto better things - we did wonder if the Men's tennis would ever finish yesterday or if the nurses would find us all collapsed and exhausted with the tension of the points and rain breaks. We survived but in the end I lost interest which seemed a shame after all that effort.
Today, still sorting out finance and school things and must ring dentist for Woody as his tooth hasn't fallen out yet.
I have seen the chaplain which has given me peace and communion and now I'm on the internet so that's good for my head.

Saturday 5th July
I can not beleive that July is flying past so quick. I woke up yesterday with a lot of pain in the left side of my chest and back. More muscular at first but later changed into a crunchy bone pain so ended up having a lot of extra oromorph and diazepam to help. I did see my younger sister in law and her baby which was lovely and managed to sort out some things with her. She is coming over to help next week so we can sort out some things etc which will be good.
Didn't see anybody else after lunch and seemed a long afternoon which was noisy throughvisitors but did get a lot of Eeyore done so he only really needs his bow on his tail now and all the finishing off touches.
Couldn't get the hang of Dr Who but sure it will be repeated so many times I might actually get the hang of it in the end!!
The pain settled but I couldn't sleep so spent quite a long time compiling music for my tea party - food and drink has always been important to me so I want to make sure you have food and music at my sedate wake!!! Some songs seem highly inappropriate but I like them.
Felt fed up this morning as we got woken up at 730am to fill out dinner menus but then there was an hour to wake till breakfast and a cup of tea which was very annoying and so still don't feel quite awake and too lazy for a bath but I promise you I will have a bath today!!
Hope to go home wednesday as tuesday is busy with school appointments etc and would rather have a quiet evening here before facing the noise at home!!!

Planning For The Future Without Me
This has been such an odd week. I've tried really hard to get on with the organisation of my dying requests in the Hospice, writing the Will, seeing a Benefits man, planning a Thanksgiving Service at the Crem and negotiating prices and services offered by Funeral Directors. For me, it has been easier as I've now managed to get hubby to look at these things with me so it is not such a surprise when I get to the end. He will not read the blog so it has come as a huge emotional blow with each meeting we've had about each service.
I can't really believe that I am doing this with such detachment as in Aug - Sept 07, we were planning similar things but for the renewal of our Wedding Vows and in such a short space of time we are heading at the opposite end of the spectrum. It is the planning if music, readings, prayers and flowers that are so heartbreaking. Hubby suggested he might try to get some of the funeral tributes dried out and framed as we did for my sedding bouquet. We should have done this for the renewal as well but too late now.
I've spent ages with finance companies, banks etc and now need to get letter from GP to confirm that I am terminally ill so that we can transfer the children's accounts into the children's names with appropriate trustee signatures and for me to get hold of a very tiny private pension I'd forgotten about but will come in useful for the summer hols!! Unfortunately, there is so much we can not do as these companies all need the same original death certificate so will take hubby a long time at the end to clear things up which seems an added stress at such a stressful time. It seems so silly as the endowment is going to pay out the same at my death now or in 1 yrs time so they may as well pay it now and would help us out financially and make it less stressful for hubby.
The Benefits man was helpful and after I've gone at least we know how hubby and children can access benefits.
This Benefit System is silly beyond belief. As I get higher rates for mobility and personal care, someone is entitled to claim Carer's Allowance for me. I do need this extra money to pay for my increasing care. The problem is hubby can't claim as he is working more than 16 hrs a week and nor can my mum who is my main carer as she is over 65 nor can my inlaws who care for me because of the age thing. The Government puts a cap on how much pensioners can claim per week. Apparently, there is a minimum pension allowance and then this can be topped up with Pension Credit and then this can lead to reductions on council tax etc. On the other hand, the Government then limits the upper amount of income per week for Pensioners before financial help is withdrawn so infact most pensioners can not claim the full attendance allowance. So basically pensioners are expected to live off a set amount regardless if they are the main carer for someone other than their spouse or not and yet may still need to pay for carers!! Seems so long winded.
If someone wants to become my carer and either works under 16 hrs pw and also earns around just above minimum wage level, please consider caring for me as I do need help and I need help to pay for it as well.
The meeting with the vicar was useful but he is not computer literate and I'm so used to just googling something rather than having bits of paper photocopied everywhere. He is going to contact The Sisters of Senacor (sounds too much like Sennacot to me) who interpret scriptures and write prayers so will see what they can come up with and will also have to approach the children to see if there are any prayers they want to say and also ask you good people who know me to consider either writing a small piece about me to either read out at the Thanksgiving Service or to put into a compilation for the vicar or someone else to read out. So many of you know me from different walks of life that I think it would be better to try to get some order going to save confusion later on and that you don't get bored rigid when you are listning to my service!!!
The meeting with the Undertaker was interesting. Part of the reason why one of the quotes was so cheap was that there was no mention of a coffin!! Rather an essential part of the whole process wouldn't you think!!!! Anyway, now have proper quote from one company and can go back to the other company and get a like for like quote and meet the Undertakers so that hubby can decide who he wants to work with. There is apparently, an Open Day at one of these undertakers next week which seems odd but I suppose they have to drum up business as well as trade on their name.
One of the odd things we were looking at in the Brochure was the type of Order of Service pamphlets you can order - seemed very cheap and good quality so will do this but can also order a bookmark, thank you card for coming/donating and another type of card. What a business opportunity!!! Can't see why any of you would want a bookmark to mark my thanskgiving and can be quite sure but am sorry that hubby and family will be too upset to write to say thank you for all your help, contributions and flowers etc after the event so at this very premature time, I would like to say a huge advanced thanks for everyone of you who has made this journey so much more bearable for us and the hopeful continued support you will all give to each other and our families.
Sorry to be so maudlin.
Hoping to be home later so next post should bebrighter in content I think

Thongs and Incontinence Pads
I thought that as I have been a nurse for 27 years and quite a lot of that in the area of sexual health, women's underwear would not be shocking to me. How wrong I was!!!
Just before I went back home to collect the paperwork, I asked the other ladies if they needed anything from the shops. The eldest - so well over 70, said ''yes please!! Knickers''. I was thinking along the lines of Bridget Jones due to the incontinence problem so just thought I'd ask. She asked me to come over so I did and she pulled back the sheets and pulled up her very brief nightie to reveal a thong!!! I did very well not to laugh and went home with mum. Couldn't find the paper work but got other stuff and so mum and I went off to Sainsbury's. I don't think my mum could believe that a woman of her age was happy wearing a cheese grater especially with an incontinence pad. We spent quite a few minutes deciding on which style and bought 3 pairs. She was so pleased and kept showing the nurses the purchases and then today she kept showing her visitors including one of the mum's of AJ's class mates who I don't know well but was obviously shocked that the playground rumours were true and that I am indeed terminally ill and at that time was in pain and in PJ's - albeit boring, functional but comfy Marks and Sparks ones though!!!
I'm still reeling at getting this vision out of my mind!!!
Last night, I actually managed to sleep completely flat without oxygen which was wonderful for my hip until 430am when I woke up with terrible chest pain due to acid reflux. Oromorph and medicine helped the pain though.
My journey to the toilet meant that I walked quietly or so I thought between the thong wearing granny to the toilet but as I shut the door, she started screaming about me being an axe murderer so all the nurses came running to see what was happening!!!! Never a dull moment.
My poor Magnolia, she phoned me on tuesday afternoon in a state as she had bad tummy pain and to cut a long story very short, she has ended up in hospital having her appendix out but has developed a high temperature today so has been on intravenous antibiotics and can't really use her mobile so waiting for more news. Poor girl - since she updates you on me, I thought I'd tell you so that you can have some sympathy with her and my sister's family.
Spent the after noon with hubby, going through my last wishes stuff before we see the funeral director tomorrow. Want to 'do a Dom' as the place we want to use is £1000 dearer than the other. We've been successful with double glazing etc but it doesn't seem in very good taste to try with a funeral director but it's a lot of money.
Wifi signal better tonight - nurses busy so not at their station so not blocking the signal!!!
Get well soon Mags.

What have I done?? Got my cake and ate it!!!
In a bit of a state - not helped by sleeping pill, antinerve pain drug and alcohol and steroids so this post may disappear later.
Spent morning trying to sort out finance side - very difficult and not helped by missing paperwork from bank. Am really scared something wasn't changed when we last changed mortgages and yet I know we did do it so have to go back to house tomorrow morning to find papers so can discuss with man from finance or else with have to do battle with the bank to get copy of original and to prove their negligence. Not what I wanted to do right now.
Did go and get my toe sorted out but looks as if left toenail surgery not successful really which is a shame.
Spent a lot of time in my new office with wifi which is fine as long as the nurses do not put their drugs trolley outside door and then has no signal - very frustrating and not patient usuable unless in a certain bed so lucky can get this little office to myself.
Ward now driving me mad with 3 incontinent women over 70 so loos are a big problem with either me or the nurses clearing up so getting out of the bay is essential for my sanity so the gardens have been a sanctuary as well. Think will speak to fundrasier co-ordinator here as feel we need some garden cushions somewhere as those plastic chairs and wooden benches may look lovely but aren't half hard on your bum!! Then you will know next time, that instead of your wonderful donations going towards patient comforts like the sherry, (my slush fund) the gardens will get improved. Laura wants to build a pond here. She wants to raise money for it so obviously feels it is worth a cause.
Had the social worker here and had fun but it is obvious AJ has a more serious problem than just the worrying over me causing him his social difficulties so social worker will look into it. AJ was so difficult that he made my mum cry. His school report is at odds. High achieving - no effort and poor social skills so think we will push for proper assessment for adhd/autism or emotional probs. We managed to get good work done between me and the twins and hope that we got some stuff done between AJ and me and hopefully build some bridges between AJ and Grandma.
The high light was I ate cake!!! It was supposed to be banoffee pie but was a light banana sponge with thin toffee and cream and I ate it without choking. I'm not sure who was happier - me or the kids. It was lovely to hear Laura so excited about my eating and now I feel confident I can eat anything pureed which makes for an interesting social life but keeps me confident I can do this at home. Well, hopefully, someone will do the cooking and pureeing and as long as I can lift a kettle, it'll be ok.
Will be good at home and not overdo it, I promise. Going to get help with bathing and shopping and rest more. Children do help me at home so will keep this up as well - big question is will hubby obey the rules???!!!!

Weekend
My sister and her hubby and 2 younger daughters came to see me at the hospice so we all sat outside on the patio whilst I had my pureed cornish pasty and raspberry crumble with a glass of wine and they ate their sandwiches. Very saloborious really!!
Then back home to get AJ's hair done - we've got a son with eyes now. We'd forgotten he had them!!
I came back for my tea and had a quietish night and slept well.
Sunday, saw my mum, hubby, AJ and inlaws which was lovely apart from the fact that poor hubby is not coping at all and completely loses the sense and meaning of the conversation. Ended up having a big row in front of everyone which was awful.Hopefully, though it just shows what pressure he is under.
Monday - got moved back to the ward which was a bit of a blow but OK with it. Saw the solicitor to make will but the short car jpurney too much for me and ended up in chest pain at hospice by lunchtime and so oromorph and alcohol helped that. Then my friend from student nursing days ame and we had a very civilised afternoon sipping tea in the garden.
Poor hubby - he looks so desparate but just won't talk or take time off sick .It's like it's just clicked that I am going to die. We will have to find him some help even though he doesn't see he needs it.
We will have some lone time on thursday to discuss my dying wishes etc before seeing the funeral directors on friday. It's something we need to do together and again, the reality will hit him hard.
Last night, I saw all 3 children who were worn out and in Laura's case in pain from various injuries from the PGL holiday. Poor hubby just dumped them on me and ran off without even asking if I could cope with them. At the time, I did have chest pain but luckily, their godmother's sweets and Sky Sports News and more biccies soothed everybody and the hospice could see what is happening so hopefully help will be on its way to hubby.
Seeing social worker tonight with family and this afternoon Laura is going with her grandmas to get her blood test done as I feel it is too much for me to travel up there and she feels confident enough to have it done without me which is a good sign.
Off to daycare now.