A hard, but good day

Well today was the day, we moved Stewart from the wonderful Bexley Oncology wing at St James's hospital to the even more wonderful St Gemma's hospice. The walk through those front doors took courage on both our sides but the welcome was warm. Although when we went up to the ward and I told the nurse that I was here with Stewart, she said "he's not here yet". "yes he is" I replied. "No he isn't" she said, " yes he is" I said, he's with me. That made us all giggle and broke the nerves.

The Doctor and the nurses were wonderful, laughing and joking when appropriate, kind and thoughtful at other times. We settled Stewart in and they came to discuss food. There is a daily menu but also if that doesn't appeal another menu of regular meals is on offer. Well after seeing that, Stewart has decided to stay there - now what does that say about my cooking skills!!!! But how wonderful to see him eat a meal, albeit small and actually enjoy it. We then had visitors all afternoon, my sister and her youngest daughter, my brother, sister-in-law and their eldest daughter, Stewart's Uncle along with the Rabbi that I work with. After about 2 hours I shooed them out as stewart looked like he needed a rest. I left him in peace and quiet whilst I went to pick up Gemma from school. Well, everyone came over to ask after Stewart and offer their support and it is very warming to see people who don't usually talk to me come over.

We went home and packed a case for Gemma cos she is staying with her best friend Jof tonight, and her other friend Felicity tomorrow night. She's having a great time at the moment which is the way it should be.

We then visited Daddy and after a cuddle, hug and kiss, 2 biscuits and a sweet she was bored, so I took her to Debra's (Jof's mum) where we were eating that night and waited for Alex to appear off the school bus with their daughter. We went back to see Stewart and as I am so confident in the care from the nurses and knowing another friend was popping back, I actually joined the two youngest at our friends for dinner. We laughed and we cried, especially after hearing Gemma and Jof discussing Stewart quite matter of factly, and the fact he has cancer and isn't going to be a grandpa. It's amazing how kids can compartmentalise things and see things so rationally.

I had a lovely evening and felt safe knowing that once it was over I could still visit Stewart which I did. We had half an hour together, mainly because he needed to sleep and I had a wonderful chat with the nurse looking after him, May. She offered so much support, even saying that i could pop in at 3am if that's what I wanted - mind you if I did that Stewart would kill me. But how wonderful is a hospice that offers to convert a hospital bed to a double bed so that you can be together. It's not an option I will take up at the moment but I do feel comforted that when the time comes, I can lay beside him and hold him in my arms (without falling off the bed). It also means the kids can join us and cuddle him.

The one thing this has spurred Jamie and I on to do, is raise as much money for cancer research (especially melenomas) and St Gemma's once this is over.

I am how now, and feeling the calmest I have felt in 2 weeks. It's been a roller coaster of a ride which isn't over by a long shot, but at last we can be safe in the knowledge that his care is taken care of, he can have all the support he wants and needs and that when the time comes, he will be in the best possible hands.

For those of you who have wondered where Jamie has disappeared to in this post, he was ordered by me to attend a reunion of his summer trip group. He missed the reunion of his last summer's trip due to being in hospital and I want him to have space to enjoy himself and neither Stewart or I want him to miss out on the support and fun his friends can give him. Next weekend he is off to Scotland to see his girlfriend, but I know that the months ahead will be hard for him so am pleased we can give him this at least.

On a slightly sad note, tomorrow Harley will be picked up to be taken to his new foster home. I know that this is something we have to do for Stewart's peace and safety (especially with the rish of infection etc) but I still feel sad and guilty that we have to let him go. He was the puppy we picked from a large litter and although he is hard work, he will be missed as part of the family. I know where he is going is better for him and will give him the love and space he deserves but just a little bit of me is so angry that Cancer can not only take away the love of my life, but take away the pet we have reared from 7 weeks. It's a bastard of a disease and I vow to help find a cure by raising as much money as possible in Stewart's name once this is all over.

Frustration

Evening, well today has had some highs and some lows.

Stewart managed to get through till 6am this morning without any extra pain relief which was brilliant and after a very hectic morning which saw Gemma being late for school and the phone ringing off the hook, I got to the hospital just after 10am. I took Stewart down for his radiography and then we both went back to the ward and dozed for an hour or so. We had the meeting booked today to meet the consultant in charge of the chemo and we were to be in clinic at 3.15pm. Well that was a joke, we didnt get in to see her until after 5pm, which meant stewart had sat on a hard chair for 2 hours which meant the pain was returning. To top it all, the fact we were late in meant he missed his dinner on the ward - not much use when he is losing weight right before my eyes. To say I was angry was an understatement.

However, the blood test results were optomistic and he starts chemo next friday.

We went back to the ward and we managed to have time to chat today. Stewart spent a lot of time talking about things, which although made him cry, was really positive. We closed the curtains and just talked whilst I gave him a foot massage. He is such an amazingly strong man and I am in awe of his courage. He gave me so much tonight, affirming his love for me and telling me that he loved me. I know it is a sad time, but this was wonderful. I obviously told him how much he means to me and that he is and always will be the love of my life.

It hadn't been a good day for me, I had felt so down throughout the day but I left the hospital with warmth in my heart. I just don't know how I will live my life without him by my side. He is and always has been my rock, my inspiration and I can't imagine waking up without him in my life.

I had also spoken to one of our wonderful social workers at the local jewish welfare board who talked me through everything I am doing with the kids. We decided it was time that Gemma knew the truth as it is bound to come out in the playground soon. So when I came home, I sat her down and had to tell her that her daddy wasn't going to get better. I explained as much as I think she could understand and to see her little face crumple was so hard, it broke my heart. Jamie, being the wonder that he is, came in and just held her in his arms whilst she sobbed and then held me too. What did i do to be lucky enough to get such a wonderful son.

Just before she went to bed, Gemma came in and said "thank you mummy". I asked her what for and she replied "for telling me about daddy so that I can hug him lots". My poor baby, why oh why does she have to go through this, why do all my babies have to go through this, it is so unfair.

I also had to tell the kids that we have found a long term foster home for Harley, our dog. He is a huge lump of a puppy golden retriever and I love him so much but with Stewart having chemo and being open to infection, I know that along with the fact he is boisterous and noisy which is too much for Stewart to cope with, that we need to find him somewhere to live. A wonderful couple who bought one of Harley's sisters is going to long term foster him and if he settles in they have said that if we wish to rehome him, they will take him. He will green fields and long walks and rides on boats so a wonderful life lays ahead of him. How I will say goodbye I don't know but I do know that I have to, for everyone's sakes. Once he has settled there and I hope is there for a while, because that will mean Stewart is here, it would be unfair to bring him home somewhere where he won't have that sort of life.

So today has been a day of mixed emotions. I am back at the hospital tomorrow morning to take Stewart to his fourth radiotherapy and then to take him to St Gemma's Hospice. However, his notes and medicines must travel seperately by taxi - it's hospital policy. No wonder the NHS is in such a mess.

A better day

WEDNESDAY

Well, Wednesday came and I rang the hospital and Stewart had had a better night, only having three extra injections to get him through (he'd had six the night before).

However, we all overslept and although Alex managed to get up in time to get the bus to school. Jamie didn't which after the night before probably wasn't a bad thing.

I went down to the hospital to meet with Ash again who was again amazing. She has confirmed a bed at the hospice in a room of our own for Friday. Ok, it's a big step to make but I know it's the right one. We discussed various things together and Stewart was totally rational in his thinking which makes things a little easier.

He had a good day with the pain relief being increased and up to 10.30pm when I last spoke to him, he hadn't needed any extra injections which means I hope, that he has a good nights sleep.

I managed to talk to Ash privately, and she doesn't think that Stewart will go back to work again, but doesn't count it out but is being realistic. Something I am aware of but Stewart isn't ready to accept.

We have had visitors on and off all day, my parents, Jamie, my brother, my friend Debs who couldn't quite cope with seeing Stewart yet and sobbed her way through our cup of tea which we had downstairs, and then her husband Richard popped in tonight. I think it was his visit that lifted Stewart the most, he was so understanding and supportive and gave Stewart such a lift.

I have spent the day setting people off crying, everyone I spoke to cried - i really must rethink what I say to people LOL. It is so touching that so many people genuinly care for us and the kids.

we managed another quick cuddle and then I had to face coming home to tell Alex the situation (I can only handle telling them one at a time). Luckily my friend, Fiona came over from Manchester to help me with the kids and whilst she kept Gemma occupied and put her to bed (she must come and read me a bed time story cos she's brill) I spoke to Alex. I knew he'd cry but it still broke my heart and what broke my heart more was after we'd chatted and I'd answered his questions he went upstairs to take some time out and his wonderful big brother went into his room and sat with him. How amazing are my kids (bigheaded it may sound but I am genuinly so proud of them).

well, Jamie and I chatted and he thanked me for being so honest with him. I feel like a torturer to put my kids through this but I think what he said made me realise that however hard it is, that honesty is the best policy.

Having got my room back to myself tonight (Gems slept in our bed the past couple of nights) I am off to bed, I will sleep cos my eyes are closing as I type this so I bid you all good night and sleep tight.

He's just amazing

Sorry for not updating yesterday but I was just so exhausted I couldn't face it.

TUESDAY

So to update you - We have met Ash from Palative Care and if there was ever a lady who deserves angel wings and a halo, this is her. Her manner was calming and reassuring, and totally honest. She has put Stewart onto a syringe driver so that we can start actually dealing with the pain relief properly. This was fitted whilst she was with us and within 5 minutes he was my Stewart again, chatty and sat up and taking an interest. She went through what we knew, what we wanted to know (which was the results of the latest CT scan) and then told us the options we had open.

At this point, we didn't have the results but she did tell us that the consultant would be round to let us know later that day but in the meantime she mentioned the dreaded word - hospice. But she explained that this wasn't somewhere he must go to die, but somewhere where his pain would be correctly managed without waiting 3/4 hour for someone to administer it and that once this was fully controlled. Obviously this came as a shock but as the local hospice, St Gemma's, is only 5 minutes from home and having had experience of it with family members we did know what a wonderful place it is. Having chatted to us about various options she left us to think about it but promised to be back.

I went off to take a call from my sister and she suggested that it would be a good idea to use that as a stepping stone for going home as psychologically he would know that going in for respite or to up the pain relief didn't mean he wasn't going to come home again. On the way back to the ward I bumped into Ash and mentioned this. She totally agreed, having thought about it and was delighted that I was in agreement as this would make it easier to persuade Stewart, who naturally is very scared.

Later that afternoon the consultant came in and we met another wonderful person. He gently asked us what we were aware of and then explained that the CT scan had shown cancer in the eye muscles, various places under the skin (head, back, arms etc) as well as one kidney, pancreas (which is causing all the pain) and lungs. So hey, that didnt leave much that isn't affected. I think he was taken aback by the fact we just accepted it but in truth I think we already knew. He talked to us about St Gemma's and totally agreed that it would be better for us than the hospital. What blew me away was that he knew about the kids and their ages and could talk to us about how to help them. We mentioned that it was 5 minutes from home and he asked where we lived - how funny is this - he used to live in the next street!!!!

After he left Stew went to meet my mum and Gemma whilst I grabbed 5 minutes to ask him the questions I needed to ask. He didn't rush me, he gave me time and more importantly he was honest. So basically we have somewhere between 3 months (possibly) to a year (if we are lucky). Now that bit isn't good news and it really hasn't sunk in.

I also spent time talking to the nurse looking after Stewart, who was in floods of tears throughout but a great support.

Stewart has been amazingly calm and that evening we spent time talking together and I mentioned that it might be suggested we use the hospice as a stepping stone to home and why - I more based the info on the fact that once we are under the care of the hospice it is them we call if we need advice, pain relief etc and being so close it will help us. It also will mean the kids can be supported all the way through, and I think he understood it.

Before leaving that night, we managed half an hours cuddle on the bed, with the curtains closed which gave me some strength. Being back in his arms where I feel safest was wonderful, especially having had very little physical contact as he has been in so much pain (and no, there was no hanky panky :) )

On coming home there were visitors till about 11pm, firstly my slightly batty but wonderful friend Ruth (who I shared my 40th birthday party with and puts everything on a spread sheet). She brought me a present of an emergency bag for the car containing a bottle of water, a box of tissues and enough chocolate and sweets to last a life time. Then our good friends Carol and Dave popped in to check on me - they have been brill and are taking Harley (the dog) out for a long walk every morning for us. Once they had gone I had to face telling Jamie, our eldest exactly what was going on. We cried, we laughed, we got angry but I couldn't have lied to him. I have to admit that by the time I went to bed at 2am, I was physically and mentally exhausted.

Today's adventure!!!!!!

Ok, here's the latest update. Rang hospital at 7.20am this morning (having been unsettled all night - knew something wasn't right) to be told he had been in serious pain last night and rushed for an xray at 3am. They couldn't get the pain under control and now think he has pancreatitis (sp?).

Why oh why didn't they call me, I am so annoyed that if he had needed an emergency operation I wouldn't have had chance to see him.

Anyway I dressed Gemma and dropped her at my friends and flew down. Within about 2 hours he was a lot better and more comfortable. Palliative care came to visit - very interesting and scary all at once but yippee he has had a pump thingy put in so that he gets continuous pain relief that can be topped up with injections whilst they work out the strength needed. He is a different person (well, actually he's the same person but with a bit of a sense of humour and a smile and a cuddle for me :D). He's very tired but is being less retisent about asking for pain relief.

What they have suggested is that he may want to go into our local hospice instead of hospital (well it's 5 minutes away from home, available to visit all hours and private room) if the pain relief needs altering and then he can come home again. He has, understandably, mixed reactions but think he may go in before coming home so that knows it isn't permanent (if that makes sense).

However because that is a huge possibility, I have needed to talk to Jamie tonight about the facts and what is happening, and bless him I think he realises the true extent of what we are dealing with. It really hit him all the things his dad won't be here for (graduation possibly, his wedding, his first child - I haven't even mentioned his 18th) but he now understands the situation. He got angry and then he cried and all I could do was hold him and cry with him. That has to be the hardest evening I have ever had, just hope it was the right thing to do. However, we are not looking at the end of the story, we are now focused on the bit up till then and on making it absolutely fantastic (see even I can do optomism :lol:).

Once again thanks for your kind thoughts, words with whoever you speak to up there (I'm not proud, anyone that gets us the result we want will be gratefully thanked) and all the love you send.

Now I'm off to actually have something to eat (well a box of jaffa cakes cannot possibly be termed food :lol:) and then my friends popping in for coffee.

I spoke too soon

Well what a crap day today has been. Firstly, i went to work and everyone was lovely but of course it was that kindness that set off what was to be the first of many tears of the day. I also got a call from Stewart to say they were keeping him in another night at least. Having rung my mum, she told me to come round cos I needed to obviously off load. And off load I did, I just sat and cried in her and my dad's arms. Then, having pulled myself together I set off to the hospital.

Well having left Stewart tired and painfree the night before I was shocked to see him in pain, nauseas again and tired. They are giving him a slow release pill topped up with other medication and anti nausea pills but they just weren't hitting the spot. Yesterday's bloods had shown a problem with the pancreas (I have heard of it but no idea whether this is relevant or not) and all day he has been popping pain killers and sleeping. I am sure it is the drugs causing him to be so tired, but it has left me feeling so alone so quickly. The nurses are wonderful but feel that we now need to look at a pump that is permanently attached to dole out some medication and they have recommended they call the palliative care team in. Well, that was it, off I went on another tearful episode, it's those words you don't want to hear. It really brought home (if I hadn't already realised) that this was serious. I feel totally sick every time I think of it.

Mum and dad brought the kids down to see their Dad. He didn't even really respond to him being there which was so sad. My parents then insisted I join them for tea, I am sure it was lovely but I couldn't taste a thing. The only benefit is that my eldest niece was there with her boyfriend which was lovely.

I have this sick feeling in the pit of my stomach and my heart feels empty, it is such a horrid thing to watch him like this, so not my Stewart and due to visiting hours, I won't see him till 2pm tomorrow. That just compounds the situation too. I know they have to do it but feel it is so cruel. I just want to curl up in bed at home with his arms round me, its the best place to be and where I feel safest and I miss it.

Jamie is continuing to be my rock, he has had a terible shock today, I think it really hit home what is going on and I feel I have let him down today by being weak. I know I need to be stronger tomorrow for both him and Stewart so I am off to bed to try and sleep.

Bad news Good news

Well Friday night was a nightmare. We gave Stewart the new medication for pain which seemed to help him but then his stomach pains got worse, he wouldn't eat and was nauseus and had terrible wretching throught the night. It was horrible to watch him in so much distress. So this morning I rang the number on the outpatients card - and god bless the oncology unit. They didn't think I was stupid, or pathetic, no, they were wonderful. They talked me through everything and even when I said I wasn't sure it was connected or that was it the new painkiller or the drugs from his latest CT scan, she listened and understood my worry. In fact she said I'd done the right thing ringing her and to bring him straight in so they could get his pain under control, but to be warned he might have to stay in. She said that he was all that mattered and whatever the cause, they wouldn't let him be in pain.

So off we headed to the new oncology building at St James's hospital, Leeds which is a credit to everyone who has ever donated to it. They got him settled and gave him pain killers and tablets to stop the nausea. Within 10 minutes he looked so much better. They have kept him in tonight so they can judge how much medication he needs so they can give us the right medication to have him home. He will rattle with all the tablets he takes, but I can live with that.

I popped out after lunchtime to come home to pick up some stuff and give him time to sleep without being aware I was sat there and I decided to pop into the Paper Dolls crop. What an amazing bunch of ladies they are, they made me laugh, they hugged me, they made me cry and they even provided a beautiful little 4 week old baby for me to cuddle (thanks Trina and Dave for that).

I then came home to spend an hour with the kids but this meant having to really sit down and talk to Jamie (17). I realised listening to him talk he hadn't taken on board the seriousness of the situation and it was the hardest thing I have ever had to do, to explain that if we got 5 years more then we would have had a miracle. When he said it was wrong to lose a parent when he was only in his 20's it broke my heart, especially as he may not get that long. However, after explaining that we were fighting this and not giving up, I also explained that we had to arrange things just in case, that once the relevant discussions were had they could be put away until needed, things like headstones on graves, finances, the bringing up of the kids, where his dad would spend his last days and how I had promised his dad I would look after him at home until it was either too much for me or that his dad needed more care. We have a fantastic hospice locally which my nana and papa passed away in, and I know that when the time comes, that's where we will spend our last days with Stewart. They allow you to stay there full time and care for your family and spend every moment with them and as I have promised Stewart I won't leave him alone, I know I can fulfil that promise there - thank god for St Gemma's.

However, saying that Jamie has made me realise that Impossible is Nothing. We can and will fight this bastard disease together and we will get as many years (or months) as we can, and hopefully now stewart will be pain free we can have quality time as a family and as a couple. I wouldn't mind but tonight he ate the whole meal the hospital provided - I didn't think my cooking was that bad!!!!!

So tonight, I sit here in my bedroom alone, knowing that one day it will be like this always. Watching the emotions that Stewart is going through is so difficult, to see the fear in his eyes is so hard, knowing I can't make it go away. However, after talking to Stewart about various things this afternoon, such as letters for the kids etc I feel better in myself and strong again, knowing we will do everything we can.

I would also like to say a massive thank you to all the UKS members who have taken time to post on my "say a prayer" thread, for the personal messages they have sent and for all the support I am getting. I have had links to so many things that will be useful, from claiming disability allowance, to Winston's wishes for the kids, to virtual candles, to stories of family members who have survived. You are an incredible bunch of people and I will be eternally grateful to you all.

As for my family and friends - i still cannot say anything worthy that will explain the total support and love they are giving us. My parents are magnificent as always, my sister and brother and their children and partners are amazing and my friends are unbelievable. Phonecalls, texts, food, collecting of children, walking of the dog, they have offered it all along with support to me and stewart and the kids. Even Jamie's friends have contacted me. I am so blown away by the local community support too, people that I have never heard of (but obviously know me and/or Stewart) are asking about us and saying prayers for us.

So all I can say is THANK YOU to each and everyone of you, I will never forget this.

Life's a bitch

Sorry, but that is exactly how I'm feeling. You see Stewart has been diagnosed with terminal cancer. Who knows how long he has got but by god I am going to make it the best it can be.

We went for further scans today (not sure why to be honest, they've told us the worst) and a fitting for the mask he needs for the radiotherapy he is having to hopefully shrink the tumour in his eye and make life a little more comfortable. He will have 5 days of radiotherapy and then a break when we will find out the scan results and possibly start some chemo to try and stop the cancer spreading as fast as it is.

Yesterday can only be described as the day I never wanted to have, a day from hell. To come home and tell your children that daddy is poorly and there is only a minute percentage of a chance that he could recover is the worst thing I have ever had to do. Yet they all reacted differently. Jamie at 17 is absolutely adamant that whilst there is any hope that is what we live by and that dad will be fine, Alex at 14 just wanted to know if he could have a laptop (LOL), but is very concerned that the business we have which was named after the two boys (started before no3 arrived) would go, and the name would be gone forever - it's funny how he sees things, but his older brother has been a star and said that anytime he needs him at school, he will be there for him - what an amazing child I have there. As for the little one, Gemma (9), she just knows that daddy is very poorly, I couldn't tell her anything else.

Stewart is the most amazing man, and yes, he's cried and he says his stomach is in knots but he is being so incredibly brave - he really is my hero.

As for me, well I've cried, I've kicked the door, I've stamped my feet and I am putting a brave face on. I will not let him know how frightened I am, how lost I will be without him by my side, how I want to curl up in a ball and hide from it all. He will see a smile on my face, a cuddle and a kiss whenever he wants it and the best days, months (and in my dreams, years) I can give him. I am hoping when he has had the radiotherapy and it hopefully makes him more comfortable, we can have the quality time as a couple and as a family we need. I think my camera will be out permanently so that we have reminders of everything we do.

Our family and friends have been so amazing. Words don't say what I want to say about them. I just know that we will be ok with them watching out for us. All I need now, is everyone who reads this to just give me 2 minutes, look up to heaven and say a little prayer for us. As Jamie's status on facebook says, We're wishing on a star!!

I spoke too soon!!

What can I say about today, well i have decided life is crap. Stew has found more lumps on his head and arm and although he is losing weight his stomach is getting bigger - so now I am really worried. I just have this feeling that things aren't good.

I can tell how tense I am because the hospital rang with an appointment for a CT scan on the 12th and I was about to say, "can't you get one any quicker, that's ages away, it's urgent" when I realised that actually it's friday morning - so quick by NHS standards. It is obvious that the Prof has looked at his notes and the fact she has booked him in already is ringing alarm bells.

Why do I get this feeling that there will be no cure this time. How, if that's the case do I tell my children and keep Stewart upbeat. I only hope I am soooooo wrong. At times I feel so calm when thinking about it, I know I need to cry and shout but I just can't.

I know that you who have been brave enough to venture onto my blog at this time, and to read my posts are amazing people, some of the comments and emails to me either at home or via UKS have been amazing, and truly are keeping me going at the moment.

There are so many thoughts flitting through my head, the sort of thoughts you never want to have, that I don't know sometimes what or where to put them, so this is my diary, the feelings I need to share.

Today, in a brief moment, Stewart shared his fear of dying. It was only for a moment, because I don't know what to say to him to make it go away, I can't lie to him, I have never lied to him, not proper lies. Yes, I know I've told him i've had that handbag for years, the shoes have always been in the bottom of the wardrobe and that it's magic that my stash has grown so much and I didn't buy any of it but this is different. This needs us to be truthful. Although I love my stewart more than anything or more than words can ever portray, I also know he hides his feelings and I know that if he has opened up to me I need to be say the right thing, but I don't know what that is.

I know he is scared of the future, for his health but for me and the kids if he is not able to work or if he dies. Unfortunately because he has had cancer before he hasn't been able to get life insurance and therefore if he can't earn, or worse, then he knows that leaves me with a great big problem. I know you can get help etc but I don't like to take - however, I have tried to be practical and have applied for family tax credit in the hope that will help - I just need the forms to arrive!!!

My mum is very involved with Macmillan Cancer Care, due to the help they gave her when my Nana was so ill, and I know they will offer all sorts of help, it's just that I am not ready to contact them. There is something stopping me admitting how serious this is, although I know I will have to do it soon.

Once again my apologies for my ramblings, I hope that by Friday night I will have some positive news for you all.

Finally

What a day today has been. We went back to see the eye man, who is wonderful but unfortunately having looked at the scans again, has found that the spot on the back of stew's head isn't a spot but another tumour!!!! So more proof that the tumour is spreading. He advised that we arrange to see our oncologist (or that she will ring us) so I contacted her secretary to be told she is still away and she couldn't do anything. It is so frustrating so eventually i asked her to get the Prof to contact me. I wasn't expecting her to, but tonight Prof. Newton Bishop rang. She wasn't actually sure who she was ringing but once she knew she was great and has arranged to view the scans etc and see us on Thursday afternoon.

Now I am quite calm, although I know it doesn't look good and I am hoping that they will be able to do something with chemo which seems to be the way they will treat it, but probably they will need more scans first. It seems to take so long to do everything, its frustrating.

The phonecalls from family and friends and friends of family and friends of friends have been coming all day and night and i must have told the same story at least 24 times tonight, but I don't mind cos it means they care.

Well, hopefully the next few days will go by quite calmly and peacefully. Stewart seems to be a bit brighter and has eaten a bit, but he has lost so much weight, his face and arms and legs are so thin it's frightening. He must have lost well over a stone in a couple of weeks - do I read into it that it's not good and a sign of something worse or do I assume that the nerves are causing it. I am too scared to think of the first so will opt for the second. Cowards way out but the only way I know how to cope.

Will update again after our visit on Thursday.

Thanks again if you are reading this for staying with my long posts. Hopefully something more positive will be on soon.

What a weekend!!

Well, all I can say is what a weekend that was.

Jamie's girlfriend arrived on Friday late afternoon and we actually all sat down for dinner together, even stewart, and although he didn't eat his usual portions, he ate which was nice.

However by saturday he wasn't well again and took to bed. His eye looked like it had blistered so I rang A&E to ask their advice. The on-call eye man rang me and decided he should check it out just in case but didn't think it was serious. So off we trooped, well I trooped, Stewart shuffled, down to A&E to see a very nice doctor who had seen stewart at the beginning of his eye problems. Bless him, he was gutted he hadn't spotted it earlier (only by 2 weeks mind). Well, afterall, the problem wasn't serious so we came home again but stewart has stayed in bed all weekend with his stomach pains and his eye aching.

By last night I got quite cross with him, no wonder he feels so lousy with his stomach, he isn't eating and he isn't drinking, sorry but a sip of water every 4 hours with tablets is not drinking. Was very firm with him and as he decided to come down for a bit, he promised me he'd drink.

Well it's Monday morning, stewart came back to bed at some point, not sure when cos my head hit the pillow and i was out for the count. I am up with the boys ensuring they get off to school ok and then it's getting Stew and madam up and about. We are dropping her off and going straight down to the hospital.

I realise we might not get definative answers but I just need some. This not knowing is awful. I realise there may well be more tests, I realise they may keep him in, but anything is better than this. He needs something to focus on too as I think some of the problems he is having is nerves etc. totally understandable but need sorting.

Thank you for continuing to put up with my ramblings.

Coffee is amazing,

Yes, it's early on Friday morning, but today will be a busy one so thought I would blog the latest.

Stew was not good yesterday and last night i had a thought (don't have them often you know) that he wasn't drinking coffee at all and therefore the lethargy might be from lack of caffiene. So we braved a cup - and WHAT A DIFFERENCE. He is so much brighter, his shoulders are up and he is more alert. He is still in pain but he is so much better emotionally. We spent last night and this morning talking properly for the first time, and I told him that whatever happens, whatever treatment is needed, whatever state he will be in during the treatment that I will be there for him NO MATTER WHAT or NO MATTER HOW DIFFICULT. This morning he has admitted the fear of dying, something I have also thought about but not talked about. Like I said to him, if it is the worst possible result on Monday and it is terminal and he only has however long, then it will be the best however long we can have. But I told him, that that wasn't going to happen, there are always options and we are going to fight it all the way. He also admitted the fear of losing his sight in one or both eyes. I know that there is a real possibility (not that I have told him) that he may lose the sight in his left eye and even lose the eye together, but as I said, being alive with one eye is better than dead with two - he laughed at that and agreed.

I know that whatever is going to happen, that I love him more than i could imagine, and that him being his loveable bad tempered self is all I want.

However, at the moment, even with the wonderful support of my family and all my friends, I am feeling very alone. How selfish does that sound, but as I am talking to myself here, I can admit it. I so miss the hugs and the kisses which i totally understand he doesn't want from me or to give me, it leaves me feeling that I have lost a bit of him already. And no doubt through treatment it will continue to be hard, but I have to hold in my head the picture of him coming off the treatment, being in remission and cuddling him again (one eyed or not!!)

I am feeling slightly more optomistic today, mainly because he looks better (thinner but better - the weight is just dropping off him) but that feeling in the pit of my stomach just won't go away and I am trying to deal with facing whatever will come on Monday.

I probably won't post over the weekend, mainly due to the fact that DS1's girlfriend is here (to support him, bless her) and we will be trying to make everything a little more normal that this week has been but obviously if I can I will be back on Monday night with some news.

I know the next three days will be an anxious wait and I just hope I can keep it together and after our discussions last night and today, where we were both totally honest, we can try and have a bit of normality, without every conversation being about the dreaded cancer.

For those of you who have taken the time to read through all of the posts and have sent messages, to those of my friends in the LPD, Tag a longs and UKS, to my family and my friends round me here in Leeds and those friends further away (that's you Fi), a huge thank you for your love, your kindness, your support, your care - I will remember this forever and be eternally grateful that I know you and that you are the wonderful people that you are. Without you this would be unbearable.

Thursday update

Well today has been just awful. Although I coped much better at work, I find the sympathetic looks really hard to cope with - but I know that people need to know. My friends as always have been amazing and tonight one phonecall blew me away totally. The husband of one of my BF has rung to offer his support. Not only is this wonderful because being a man, most of them have let their wives contact us, but he is my ex so it makes it even more meaningful. His kindness and generosity has blown me totally. So many people have made contact with us and it is so heartwarming to know they are all rooting for us.

As for stew, well he's not had a good day. He is struggling to come to terms with this, and coupled with the not eating he has no strength. Hopefully Monday will bring some relief to us both because we will know what we are dealing with. I am also wondering if the lethargy is as much to do with the caffiene withdrawal as he isn't drinking coffee and the fact he isn't eating as to do with the cancer.

we have been back to see the locum who has looked after him for 3 weeks and she was nearly in tears when we told her what was going on, but to be honest, she has given him a chance cos no one else was listening to us that there was a problem.

Well, lets see what tomorrow brings!!!

Tuesday news

As I said in my previous post, i think I am planning to use this as my daily journal to record the events that are happening in our lives at the moment.

Well yesterday we got confirmation that stew definately has cancer again. We just need to see an oncologist to get more accurate information but yesterday was taken up with telling the kids, the family and our wonderful friends (our family our wonderful). The support from everyone has been overwhelming, in fact so overwhelming that it is making me very tearful (now I wonder why that is!!!).

The kids have been brilliant, well Gemma just listened,I think she understood daddy is poorly but nothing more, Alex has been through this before with us so is more understanding but I don't think it sunk in yet and my poor Jamie, having decided to resit Year 12, yesterday was a tough enough day for him and then to come home last night after the Leeds match (they won!!) to be told the news must have been devasting. But you know, he is an amazing young man who held it all together and even managed to have a joke. We will see what effect this has on them all over the next few weeks.

As for stew and I, well I am not sure stewart has really taken it in, he is either very high or very low and i am really struggling to hold it all together for him. I feel like i want to cry and cry and cry but know that i can't.

Last night, stew wasn't good with his stomach again (supposedly it was the tablets he was taking for his neck pain) but i have this sick feeling that it is connected but am too scared to say anything. He has gone back to bed and I now feel like a complete cow that I have to go back to work today. I may have to shut the office early if he continues to be unwell. I need to speak to one of the bosses to help me through this - I just hope they are supportive. It's just another thing on the list of to do things I am running up. I have to speak to both schools and fill them in and then face work and all that goes there. So, i'm taking a deep breath and going to take one day at a time (oh, and my shoulder is killing me again!!!).

Sorry that this is so depressing, I don't think I am writing this for you to follow but for me so I apologise for anyone who has clicked on here to look at scrapping stuff.

Not a good day

well this post isn't crafty and it isn't happy either, but I am hoping it will be cathartic to me so my apologies.

Today we went back to the specialist about my darling husband's eye problem, and although we didn't see the consultant we saw a wonderful registrar. He agreed that stewart should have a ct scan and as soon as possible but wasn't convinced he could get it that quickly. He checked stewart's eyes again and told us to get a cup of tea whilst he went off to see what he could do. The change in his tack over handling this, ie. not going home and waiting for him to ring worried me, but then again i worry over everything. Before we managed to get the tea they were back telling us they had got him booked in immediately. The CT scan was done and home we came to await the results. I rang about 4pm and was rung back to be told the prelim report was in but he was waiting for the main report. However at 6pm he rang to say it hadn't come in, so I asked him to be straight with me, and unfortunately he told me stewart had a mass behind his eye. Unfortunately he had a second mass behind his other eye too which meant it was highly unlikely this was an inflamation of tissue. So it looks like we are battling the big C for a third time. I had to make the decision as to whether to tell stewart, who was sleeping, or to wait till tomorrow but as I would want to know if it was me, then I felt I should be honest and tell him, which I did when he woke up. It was the hardest thing I have ever had to do in my life and no doubt if the results confirm it tomorrow then telling the kids will be even worse.

At the moment I want to pick up stewart and run away where cancer can't find us but I know I can't. On top of the worry of the cancer is the fact that as stewart is self employed this whole thing could mean we lose our home and our life as we know it which will break our hearts, as we have had to struggle so hard to put the roof over our heads. I am beside myself with worry but as only my mum and dad know (and that is only because they called round as I was telling stewart) I don't know what to do. I am sat here listening ot stewart in the other room watching tv and laughing, it has so not sunken in for him, a defence mechanism I know but it means that when I talk to him it isn't registering.

I am soooooo angry at the world and at god for putting my kind and sweet husband through this again. I know he isn't perfect by any stretch of the imagination and has made many mistakes over the years, but he doesn't deserve this. I am so scared that I will lose him, my best friend, and the thought of having to do this all on my own is the scariest feeling in the world. I know that I am going to have to put my head up and a smile on my face for the world because otherwise I think I will sink.

I hoped by typing this and making this a record of what is happening and how I feel, I will cope with whatever is thrown at us and I hope you will bear with me during this time.

I do know that I am so lucky to have so many friends and family who, when they know what is happening will be there for us, but as someone who finds it so hard to ask for help but much rather offer it, it will be a trying time for me too. I am going to have to put my pride away and speak to people honestly. I will need to write lists of questions and things that need solving, I will need to sort out work, I will need to be strong for Stewart, so this blog could be my best friend and something I share with stewart when it is all over and he is well again.

Thank you for reading this.

Apologies for not being around

Well, having intended to blog every other day with my scrapping, the plans never came off due to a month of things being difficult at home.

Unfortunately my wonderful husband hasn't been well but the past week it escalated and we have spent most of the week running to and from the hospital with him. After his fall he hurt his neck and the tablets he was taking has meant he has had a reaction and now has gastric problems and other things. He went downhill on Wednesday very quickly and at one point both the emergency doctors and I thought he was having a heart attack. However he is now on medication and hopefully will feel better soon but they have advised him to take gaviscon and watching him take it is like watching the kids take medicine when they were little. If I wasn't so worried I would be laughing.

Then a problem with his left eye over the past few weeks worsened suddenly too and after going to a pre-booked appointment at our doctors (a wonderful locum who deserves a medal for everything she has done for us this week) she told us she wanted an urgent CT scan and made call after call to get us an appointment on the NHS with a consultant the next day. Well we went to St James and saw a wonderful eye doctor, Dr Sullivan, who, because they had lost his previous notes (no comment but it was only last week he was there) went through everything thoroughly, brought in a registrar (I really feel old when these doctors are young enough to be my children) and she also agreed to an urgent CT scan. However the CT department think differently, and say an urgent CT scan can take 2 weeks. So he has been put on steroids and we are off to the specialist again on Monday!!!!

However, in the midst of all this my CJ entry needs doing to be posted for Monday. Having booked a week off work this week I had loads of time, until medical incidents stopped me, so last night, or should I say early this morning I managed to do it and below are some sneak previews.

And there's more!!!

Yes, this stash diet is definately inspiring me to scrapbook - and I am really really enjoying it.

I have decided to work on my Disney Album, seeing as we have been back for nearly 5 months I thought I would try break the back of it.

Here are a few of the pages (including some DLO's that I have done this week).




This is the left hand side of a DLO

I even managed to stamp and emboss the background

And this is the RHS of the DLO

This is us meeting the mice - a dream came true!!!!!!!

Mickey & Minne were made on my cricut and the title is from a set I bought whilst in America

And here are the pictures showing how the boys charmed Minnie.

And pictures of cinderella's castle changing colours whilst we waited for the night time parade.

Another LO of my daughter, but one that she will cherish forever.

We had queued for 2 hours so she could meet the Princesses and it was so sweet that when she met them she went all shy

STASH DIET and it's effects

STASH DIET ALERT

I am a member of a crop, called the Leeds Paper Dolls, but for some reason, Kirsty (our leader) decided that we should start a stash diet together!!!!!!!!!

So at the end of the monthly crop, some of us started a stash diet. The idea being that we don't need more stash (we all seem to like buying but not necessarily using LOL) unless it is an adhesive, and we can use up some of the large stash we have all collected. We can borrow/give stash to each other to help each other out and to give us an incentive we earn points/money for every LO or card we make (i.e. you can't buy unless you use it first).

So, with this in mind and the fact there are a couple of things I would like to buy, I joined the diet and started scrapping. I have to admit that it does make you scrap knowing you are earning toward spending. Here are a few of my LO's and I have even progressed to doing some DLO's.

This LO was to celebrate my beautiful DD - who always as a little one dressed up as Snow White, when I was looking through my photos these shone and I just knew I had to do a LO about it.

Another LO for Gemma (she's sat on the left). I had already bought this paper for this photograph but hadn't got round to doing it. I used some Chipboard Letters and some embellishments that I also had but never wanted to use LOL!!!!!!

A busy week for the family

Well, what a couple of weeks it has been.

In my life out of crafting, we arranged for my DS1's girlfriend to come up and suprise him - we took them bowling and I arranged to meet them after my monthly crop there, what he didn't know was that I was going to the station to pick up his girlfriend.

As you will see, we definately gave him a surprise, his face says it all.

(aside to this, just look at my daughter's face, she was not impressed that the reason we were having a photocall was not to take her picture LOL).

And once he realised who was stood behind him then this was the result (awwww!)

The week went well until we picked up his AS results, not too good but hopefully the kick up the butt he needs to get his act into gear for the forthcoming year so that he can pass his exams and get into the university of his choice. We have a couple of plan B's just in case but hope we don't need them.

I have been working hard this week, especially as my colleague is off on holiday!!! (who said she could have a holiday LOL)

Unfortunately my DH isn't too well, he has a severe case of conjuctivitis (well it is something more than that but I can't remember the name!) and isn't feeling too well which could all be connected.

DS1 is going away on a youth trip to New York (I never got trips to NY when I was his age) on Sunday morning so I am busy washing and ironing to make sure he has everything he needs. I hope he has a brilliant time.

A Circle Journal

Ok, I have been a very very brave girl and with a bit of persuasion from my good friend Kirsty, I am taking part in a circle journal on UKS. I belong to "Kirsty's Kolourful & Kreative Newbies" which is 10 new timers to circle journals. So first of all I need to say hello to them all, Amy, Genevieve, Debbie, Debby, Catherine, Emma, Maxine, Toni & Liz (waves madly at them).

We all had to decide on our own theme and then we complete a page in each others layouts.

Well, my theme was Special Moments, why, cos I am a soppy so and so and love to hear nice things about people.

We are not allowed to put on our blogs or in our galleries our pictures of the CJ's until it is finished (in another 8 months time!!) but I am allowed to show you the front of my CJ.

This was designed during an afternoon with Kirsty, where I tried out different designs on her and this was the one we liked the best.

The first CJ entry I received was Amy's Nursery Rhymes one and boy did her introduction reduce me to tears - it was so lovely.

Well, as I said I am not allowed to show youmy LO's but I can show you some hints :)

Not sure even I can guess it from those LO's

but I am now looking forward to receiving the next one from Debby, Favourite Destinations. I have my idea for this, but who knows whether it will turn out the way I planned.