Tuesday, 30 September 2008

Happy New Year

Well today has been a good day, if emotional. It is the Jewish New Year, one of the most important days of the Jewish calendar and Stewart was determined to go to the synagogue today. So I went down early to help him shower and brought him home to get dressed (he didn't leave the hospice naked, I promise, but needed appropriate clothing - his joggy bottoms and tshirt were not really appropriate). Then all 5 of us went to the synagogue together. Stewart went in a wheelchair but nevertheless we went in together and the boys sat together and Gemma and I sat with my mum. I was exceptionally tearful looking down at my men, (including my dad) all sat together and knowing that it may be the last time I see them like that. So many people came up to both of us to wish us well and there weren't too many tilted heads (even tho my friend Malcolm, purposefully tilted his head to such an extent it must have been painful - but it made me giggle).

Stewart only managed an hour but it was a wonderful hour and I then brought him (with Gemma) home for a rest. Within 5 minutes of sitting on the settee he was fast asleep (nothing new there then!!) but I felt so relaxed knowing he was here where he belonged. I even managed an MSN conversation with my fellow LPD's Kirsty and Hazel during this brief break too which was wonderful and made me feel I was nearly back in the land of the living.

We then went to my sisters for a family lunch which was wonderful. Just to be surrounded by those we love on such an important day was special. Unfortunately by 4.30pm stewart had had enough and was shattered and I brought him home again to change but then had to take him back to the hospice. That was really hard and I didn't want to leave him there tonight. However, the brilliant news is that as long as he has a fairly good night tonight we can bring him home tomorrow and keep him here as long as he copes with his medication and pain levels. So I have been tidying round like mad, even sorting the fridges and freezers out so I know where everything is, in happy anticipation of a day I was beginning to doubt would happen. I know that once he is home he will start by sleeping downstairs where he can sleep comfortably upright which will help his eye, but I hope it won't be too long before I can curl up in bed beside him.

My friends continue to be a constant support to me, phoning me right up to late in the evening to ensure we are all doing ok.

The kids and I had a very long chat together tonight, discussing various issues with regards to how we are all dealing with this and after about an hour it finished with Jamie suggesting a family hug. I know my children are my future and without them I wouldn't want to continue, but I also managed to admit to them my feelings regarding losing Stewart and they spoke about how they feel about the time they have left with their Dad. I hope by being honest with them, laughing with them and crying with them I am giving them the security to know it is ok to be sad but equally it is ok to be happy. There are no instructions on how you do this bit of the job and I hope I am not scarring them for life.

On a positive note to end, today is the last day of September (ok, by the time this is posted it will be October but lets not split hairs). Stewart was diagnosed with the cancer on the 1st September, then diagnosed as terminally ill, then we had to tell to the kids, then we had to foster out the dog, then my parent's dog was put down so I am hoping that we will contain the bad news to the month of September and October will give us reason to smile and increase our hopes.

I wish each and every one of you a very Happy and Healthy New Year (even to my non-jewish friends) and may we all have our health, our families round us and our dreams come true.

Monday, 29 September 2008

How much more

can go wrong for our family?????

Saturday night and Stewart has a really bad night, waking two or three times with pain which they cannot get under control. By the time I arrive on Sunday morning at 8.30am he looks awful. Unfortunately I have to work so after speaking to the nurses who promised to give him more pain relief, I went to work. It was a busy morning being the last Sunday before the Jewish New Year and unfortunately I had to arrange a funeral for a member of the synagogue who also happened to be the father of an old friend. It's difficult enough at the best of times but I found it so much harder this time.

On returning straight after work, I found Stewart was just exhausted and still in some pain and the doctor was called. She was wonderful and after chatting to us both it was decided a pain relief injection would be the quickest route to getting Stew back on track, and it worked but the whole day the exhaustion meant that except for getting up for an odd cigarette, he stayed in bed and didn't really want to talk to anyone. However, late afternoon and we had a room full of people cheering him up - it was lovely to see Fiona and Mark from Manchester (who had had Gemma to stay overnight), Brian, Tony, Debra, Carole and Dave and various others too.

We also had a very special moment occur. Unfortunately with our many house moves we had lost our Ketubah (Jewish Marriage Certificate) and had arranged to have a new one signed. Rabbi Kleiman and Rev. Michael Saville came to see us and due to a small error on the certificate, the head of the Beth Din (Jewish Court), Dayan Refson had to redo the Ketubah and bring it in. Stewart had to accept the Ketubah again (which is the equivalent of making the vows in church, where you promise to love and look after your wife) and the Ketubah was signed. It was then handed to Stewart who, by tradition, then hands it to me. It was like getting married all over again but without the fuss and there was no wedding dress either!! However, it was a very moving moment that after 18 years of marriage he was willing to commit to me again. We have joked that we have got married again - and I would do it again for real if I could too.

I spent the day running to and from the hospital sorting the kids out and looking after stewart and stayed with him till 10.30pm when the nurse and I persuaded him to take a relaxation pill to help him through the night.

This morning when I rang I was greeted by a cheery good morning which was lovely. Unfortunately because of the bad night previously we had to accept he wasn't coming home with us today but we managed to have a good day despite that. I even went out for a bite to eat with my sister and mum and had a lovely time. This afternoon the doctor came and confirmed that tomorrow (Tuesday) Stew could be picked up early for a day out with me so that he could attend the synagogue for a while to celebrate the New Year and to have lunch with the family. He also said that as long as he has a good day tomorrow we can hopefully bring Stewart home on Wednesday.

Unfortunately, even though there was good news, the sad news was that my parents had to have their beloved dog, Sophie, put to sleep. She was rescued 11 years ago from a life of misery and has spent the last 11 years being totally spoilt by Mum and Dad. She goes everywhere with them and even sleeps on the bottom of the bed - something our previous dogs were never allowed to do. She was a charismatic dog with enough brains for us all and although she went blind, she was still a loving and loyal dog who ruled the roost when she was with the new puppies we had all acquired over the past few years. However, the past week she has gone downhill fast and today Mum had to take her to the vets. When she rang I just sat and sobbed and although I know it was the right thing to do, it is harder to bear when we are going through so much.

I had to break the news to the kids which was so hard, haven't they had enough hardship to bear over the past 3 weeks?

Tonight, tomorrow and Wednesday are the Jewish New Year where we start to pray to G-d to inscribe us in the book of life and our prayers continue next week for Yom Kippur where we fast for 26 hours (no food and no drink) and the culminating prayer that day is where G-d decides who lives and who dies and our names our put in the book of life. For me this year, this period will be a hard one to cope with, knowing that unless G-d decides to give us a miracle, there will be no inscription for Stewart. We can only pray that little bit harder this year to repent our sins and hope that he gives Stewart and this family the miracle we so desperately want.

Saturday, 27 September 2008

Facebook and Phones

Ok, just a quick post that if you don't have a black sense of humour you may wish to miss.

I was talking to Jamie last week and he asked how people would get to hear that Stewart had passed away. After explaining the mechanics of a jewish community - one call and the world knows (but it's lovely really) and the fact that grandpa would make calls to out of towners, Jamie decided that it was easier to sign into facebook as his dad, and change the status to read:

Stewart is going

Stewart is going

Stewart has gone

Ok, not funny but it has tickled us an awful lot (and Stewart found it humorous too)

Jamie then came up with the fact that as he sounds just like his Dad and therefore once he has gone, he could ring up customers who haven't paid from his phone and scare the living daylights out of them!!!!

So anyone reading this that will owe us money for work Stewart has done - be warned (LOL)

Told you it was sick, but hey it's what is keeping us going and I didn't want to forget the humour that we have shared.

Chemo and catch - up

Well this is the catch up bit cos I just didn't have the time or the energy yesterday to update my blog.

Yesterday was an interesting day. It started off with me having a meeting with Stewart's apprentice to try and sort out work times etc. However, having admitted to billing one of our customer's direct for a job I took him to, I provided the tools and fixtures and Stewart had come up and helped finish, I lost my temper. That is three jobs he's charged for, actually 3 jobs he's undercharged for and taken our money so that's it, no more work for him from us. I am quite calm about it at the moment but I have never been so angry with one person in my life and I told him so.

Then I had a call from Denise, a Macmillan worker who Mum knows. She talked to me for about an hour and I managed to off load quite a bit onto her.

Then into St Gemma's to see Stewart and we left for St James' at about 12.45pm. On arrival at the hospital I realised we didn't have the hospital notes with us. I sent my mum and dad off to pick them up for me (whoops, like they don't have enough to do for me!!) and we waited and waited. For some reason the chemo was late coming up which meant it was late being done!! Never mind, we weren't due anywhere! Once they had it set up at the right speed so it didn't hurt Stewart, we were set for an hour and a half of very boring conversation so I plugged stewart into his music and I went downstairs for a cuppa. Once I got down there everything started to catch up with me and I didn't feel too well, so I made myself eat something. Whilst there the wife and daughter of the gentleman who had been opposite us in the ward at St James' came and sat with me, he also isn't in a good way but it was nice to catch up with them and I think they plan to pop in at home to see us in the near future.

The trip back to St Gemma's was interesting with Stewart wretching all the way there but then he settled down for a quiet evening, and I went to my parent's to have dinner with the kids, something I promised I would do at least every Friday night. We popped back together to say goodnight and once we got home, got the kids settled for the night I went to have an early(ish night). I woke at 8am this morning which was a lie in for me and I feel so much better for it.

I am now sat at St Gemma's chatting to stew as I type this.

Friday, 26 September 2008

Profiteroles or Tiramisu - perfect ending to a lousy day

To start off on a slightly humorous note - today's tilted head count was 8 - a record!!! I am really not ungrateful for all the kindness that people are showing me, but I just can't help smiling inside when someone tilts their head!!!

Well today's update - not a good day really. It started off peaceful when I arrived at 8am at the hospice. Had a meeting with the Macmillan Welfare Benefits lady, Tracy who was so helpful and filled in lots of forms with me including the dreaded disability allowance form which is just baffling, the tax credit form and the blue badge form. She is rushing them all through so that we can get some money coming in. She has also filled in a Macmillan grant application to help towards petrol costs and bills.

However, by the time I got back Stewart was not having a good day. We had a call from his apprentice who was exceptionally off hand, totally un-understanding (is that a word? it's late so apologies if not) and rude. He has managed to lose us £250 on a job by invoicing direct which means the company he worked for isn't covered by our insurance and he only charged a ridiculous amount. I have to have a meeting tomorrow morning with him to try and sort out what is going on.

We went for our clinic appointment at the hospital for bloods to be taken and to see the oncologist. I have never disliked a doctor before, but by god this one is soooooo rude and abrupt. I had taken Stewart in a wheelchair because he has trouble with his balance and to be honest he hasn't much strength and when we got in she looked at him and said "why are you in a wheelchair" - "aren't you well enough for the chemo". How we didn't walk out there and then I don't know. His notes clearly showed he'd lost another 6lbs in a week which shows he isn't well and I wasn't planning on him exhausting himself the day before chemo - stupid women. However, as the appointments are in the afternoon which is Stewart's worst time of day as he is exhausted then and the fact she was rude to us throughout it meant that by the time we got in the car, he was in a worse than foul mood. And boy did I get the brunt of it, he'd got angry with me whilst we were in with the oncologist, he got angry with me whilst we were in with the professor, he got angry that I didn't speak, he got angry when I did speak, he shouted at me all the way back to the hospice and he got angry when I wouldn't let him get the wheelchair out of the car. A lovely day actually!!!! I took him up to the room and then left him because I couldn't cope with it any longer and went for a cup of tea with a friend, met the daughter of a friend who is wonderful and actually I count her as a friend too and had another cuppa and then I decided to be brave enough to return.

I went back to meet Alex who had arrived to spend time with his dad and I spent 15 minutes with him trying to talk to him when visitors arrived so I made my excuses and headed off to pick up Gemma. She'd not had a good day either - had been very upset about everything, why did daddy have cancer, why wasn't the dog a good dog so he could stay with us, she missed her daddy, she missed me, she missed coming home after school, she missed harley - oh dear - the tears flowed. I got her inside the house and left her cuddled up with her brother and headed back to the hospice.

At least being on our own gave us chance to talk and I apologised for upsetting him and after 20 minutes of talking he admitted how angry he had been about the oncologist, his apprentice, his cancer etc and apologised to me for how he'd spoken to me. Although I understand how he feels it doesn't make it easier to deal with and I suggested that maybe now he was ready to speak to a counsellor. He actually agreed and I hope tomorrow the nurses will sort something out. They have offered me someone to talk to too so maybe we can try and get our heads straight with all this.

Having come home and filled in the rest of the necessary forms I got a text saying "profiteroles or tiramisu?" Yep, my wonderful buddy debra had been to a party and along with Elaine brought me some leftovers to have with a cuppa tonight. I couldn't have faced the party as although I knew everyone there, I would have continually had to answer questions and taken away the enjoyment of it being a party. And after today it was too much. However Debra and Elaine sat with me for over an hour and chatted and laughed and drank tea (and Debra acquired 2 hats too!!!)

So I am off to bed and so not looking forward to tomorrow, the meeting with his apprentice, the chemo and everything else that seems to be going on - all I know is that tonight I am shattered.

Thursday, 25 September 2008

4 tilted heads, 3 clergy and some wonderful friends

Ok, not an original title but it sums up yesterday so well.

Yesterday started well, with Stewart answering his phone in a happy and boyant mood. I visited him in the morning before going to work and he'd eaten a good sized breakfast and we decided that he should have a restful morning with no visitors whilst I was out.

I managed 3 hours at work without crying which I thought was pretty good but a question did arise, why when people see you do they talk to you with tilted heads. They come up to you, put their head to one side and say "how are you" or "I am sorry". I don't mind them talking to me, but why the tilted head. It's got to the point that now I've noticed it, it is more obvious and unfortunately, having giggled with a friend about it, it is more obvious. In fact I regularly update my friend, Debra, on how many tilted heads we have in a day. I was speaking to one of the nurses about it, and she'd noticed it too but we don't know why people do it. However, it will be something I am aware of in the future and I will make sur that my head stays straight whenever I talk to people. I know I sound ungrateful but I'm not, I just need to find humour in the strangest places!!!

After work I went back to Stewart and the visitors started coming. We missed one of our Rabbi's who had visited whilst we had lunch, but my best and oldest (not in age but in duration) friend, Elaine visited on return from her holiday. She is wonderful and really gave stewart a talking to about misbehaving and putting us through it all - it was lovely that although you could tell she cared, she didn't do the tilted head and sympathy bit but was just herself, which gave Stewart a lift. I think all the sympathy is wearing and he wants to be treated and joked with like we do normally. He husband, a good friend too, is wanting to visit but she made us giggle by saying although he is desperate to visit Stewart he won't take time off work and he'll come at the weekend. If you knew Yaacov you'd understand but as a self employed joiner, we understand too and it just makes you smile when you are treated normally.

During the afternoon we had the Rabbi from our synagogue and his lovely wife visit (I was at school with him so it is more like having a friend to visit than clergy) along with the Cantor from the synagogue where I work (who brought Stewart granny smith apples as I had told him he liked them, but he didn't know what they were so had had to go in and ask at the fruit shop), at the same time our friend, who works at St Gemma's, Amanda, came in to see us, my parents visited and an old school friend of mine came - we had to sit in the conservatory of the hospice cos there was so many of us - and it was a bit like a party!!! There was laughter, talking, discussion but we managed to have no tears.

Once they had all gone, Jamie arrived. It was quite humorous because he'd rung me earlier in the day to say he was getting the early bus back from school as he had told his IT teacher, who he had for a lesson after school, that he wanted to come back to see his dad as he hadn't seen him yesterday. Obviously the teacher understood and as Jamie is resitting the year, knew and had done the lesson he was teaching, he was happy for Jamie to go. ...................... except Jamie omitted to tell him that the reason he'd not seen his dad was cos he'd gone to the Leeds United match!!!!!! (they won too!!!). However, in fairness to Jamie, he wanted the opportunity to have an hour with his dad on his own so I left them to come home and sort out the house etc.

When I returned about an hour or so later they were sat having tea together and they had spent a wonderful hour with stewart saying all the things he needed to say to him - I understand there were lots of tears, from Stewart not Jamie but I think that hour meant a lot to them.

When Alex arrived from school he also had an hour with his dad, but to be honest it was a different sort of talk and although the sentiments in most part were the same, for Stewart it was the easier discussion. Maybe because Alex is not yet a man and there relationship is different but I am still pleased that they both had this time at this stage with him.

You may be wondering about Gemma. Well she's fine and having a ball, going out to friends after school everyday and even sleeping out at the weekend and last night too (as a treat and to give me time this morning to myself). Everyone keeps asking whether she understands the situation, and as much as any 9 year old can take in this situation, I know she understands because the first words when she sees me or my parents or the boys is "how's daddy". Not a question she usually asks but I know she is missing him (even tho they fight like cat and dog - too similar in their ways to get on) and she wants him home soon.

Manged to get to Sainsbury's for the essentials after dropping off the boys at home and then popped into Ruth's to pick up a black hat (her MIL sells hats and I need a plain one for the forthcoming new year and obviously ready for the funeral!! there's nothing like being organised!!). Had a lovely couple of hours there again, she can make me laugh as does her wonderful husband, Robert.

I also managed to have a wonderful (if late) night with Jamie when I came home, and as is our way we sat on the bed in my room and talked and cried together. I am equally proud of him as his dad is of the way he is dealing with all this, we discussed stewart dying and whether he wanted to be there etc. I have said that I personally felt that I didn't want him with that memory in his head as I still struggle to get the picture of my nana dying out of mine when I think of her, but did say it was totally his decision when the time came. Obviously he will be allowed his final goodbye before his dad goes and if he wants, some time with him after too. We discussed many things and cried together. I have told him that he doesn't change his dreams to be with me or near me in the future. He must go out and fulfil them, wherever in the world he needs to be as that is what his dad and I have dreamt of for his future. I so hope he won't tie himself down to staying in Leeds just for me.

Right, I must get myself dressed and down to see stewart early today - I have a meeting at 9am with a social worker to fill in these blasted forms, got to go into work to collect some for tomorrow and get it done before Sunday morning, pop to a friends to pick up some cakes (yummy) and then get back to Stewart in time to take him to clinic at 1.45pm (what do you bet we don't get in till at least 3pm!!)

Will update further tonight.

Tuesday, 23 September 2008

Visitors, visitors and more visitors

Evening everyone, thought I'd update again today otherwise I will forget things!!! (sorry the brain is a bit adled).

Well having had a very full day of visitors today, from friends and family stewart was exhausted so I am hoping if the patch works and keeps him pain free through the night he might get a good rest tonight. I am going in in the morning and will ask that there are no visitors until later in the day. He managed a walk round the gardens today, refusing to take a wheelchair, and regretted it big time cos that added to his exhaustion.

I met Dan, the care worker for the kids, who seems really nice and is coming to meet them at home in a couple of weeks. I am not sure if the kids will open up to him but at least they know there is someone here for them other than the family and friends.

As for me, I am feeling very relieved having met my boss. I can't go into too much info on here but just to say I have there full support and certainly the next 3 months will be much easier for me, and I will not have to juggle rushing to work with looking after everyone, it will be balanced out for me so that is one lot of stress erased. Now I just need to fill in the forms for tax credit and disability allowance, there are hundreds of questions and some of them don't make sense to me!!!! Hopefully, there will be someone in the hospice who can help me tomorrow.

Right, off to bed now as the clock has turned midnight and my coach is now a pumpkin!!! Lets hope tomorrow is a good day too.

Peace and calm

Sorry for not updating last night but having had a very up and down day yesterday, with Stewart's eye not being good, going to radiotherapy, coming back and dealing with the mortgage company and car company, then a long afternoon with visitors and running the kids around, I am sat here, in St Gemma's updating this.

It was lovely that the boys walked from the bus yesterday after school and had tea with us, Gemma having gone to friends, although they popped in to see us after school. I managed to have a bit of me time, and visited Ruth for a cup of tea after I left Stewart last night and Lindsay popped in and we talked and laughed with no tears at all, which was nice.

Today I was back here after dropping Gemma off at school, actually I arrived and had to turn round immediately to pick up the stuff I'd left on the kitchen table. I had planned on working today but it has been a busy day. Our friend, Tracy, came in (she is a medium) and talked to Stewart and answered some of his questions of what happens when you die. It is amazing how much calmer he is and at peace with it, knowing that he will still be him and that his Dad is waiting for him with the olive branch out. I am not sure how I feel, it is hard to let go of the feelings I have about his Dad but those are feelings I will keep to myself. Tracy then spent an hour with me supporting me and talking to me.

My brother and Bev have visited along with Stewart's mother again and his brothers have both rung too which I think he finds comforting.

He is laid on the bed watching telly whilst I sit here, waiting for the social worker to come in and help me fill in the many forms that need doing!!!!!

I am not sure how I am at the moment, but I have this feeling in the pit of my stomach which is like a gnawing pain that won't go away. My stomach flips when I think of the next months to come but outwardly I am coping. As always the kids are amazing and my love for them and for Stewart is growing by the second.

I might be back on later tonight, it will depend how my meeting goes with my boss from work regarding the time off I am taking - he has assured me they are not sacking me but it will depend if they can continue to pay me when I am off or not as to the next decision that I will have to make cos if they can't cover my wages I may well have to give up the job.

Sunday, 21 September 2008


Oh dear, what a day. I definately wasn't at my best!!!! I woke up upset, carried on being upset and snappy, cried on and off all day and eventually Stewart through me out at 7.30pm telling me to go home and sleep!!!! He wasn't having a good day either, we really must try and alternate our "off" days so we can support each other. I then came home and shouted at the kids, but hopefully they understand that today the anger hit me and the unfairness of the situation.

Other than that, the day has been ok!! He has only needed one extra top up of pain killers but tomorrow will be the test when we are driving to and from the hospital for his radiotherapy.

My best friend Debra rang tonight, and really cheered me up, as she does regularly, her sense of humour keeps me going.

Right, sorry only a short update but nothing really has happened today (other than emotions) so will update you again tomorrow.

A Busy Day

Just a quick update on today's happenings.

Stewart had a better night's sleep, even though the nurses woke him a couple of times when checking his syringe driver - he will be so much better if we can get him off this and onto tablets so that he can sleep through.

We had visitors all day, most especially his estranged mother who we haven't seen for 4 years (and then for half an hour if that) and really not for 10 years. I left Stewart to pick up Gemma from last night's sleep out and drop her off at the next, which gave them time alone. I don't think anything specific was said but I do know that this has given him peace of mind which at the end of the day is what matters. I know there are issues to face in the future with me and my MIL but I will take one step at a time.

He was very emotional today, first when I put my foot in it and mentioned the kids weddings and then everytime he tried to speak about the kids, he fell apart - it was hard to watch but I know it's the process he has to go through - it's still really shitty though.

We had lots of friends pop in too during the day and by 9pm Stewart was shattered, so I tucked him into bed for a good night's rest hopefully.

The only other major happening today was that Val and Steve, the dog breeders we bought Harley from, came to pick him up to stay for a couple of days and then to pass him on to his new foster parents. I hadn't realised how hard to say goodbye to Harley would be but they made it so much easier for me, poor Alex just sobbed his heart out. I know we have done the right thing for both us and Harley, I know he will be so happy with his new family who have the time to walk him, run with him, play with him and even take him on the boat with them, but that doesn't make the decision feel any less awful. The kids want to visit him but I just feel that it isn't the right thing to do as it will be more painful too see him and then say goodbye all over again. I will miss him though (but my carpet won't, he's left me with a huge hole in it this morning!!)

Right, got to be up early to go get the bagels and be with Stewart for 9am so that I can help him shower etc before the next visitors come along.

We are eternally grateful for everyone's visits, they are tiring but they lift his spirits and it's warming to watch. I don't think he knew how much he was loved.

Friday, 19 September 2008

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.


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.

Thursday, 18 September 2008

A better day


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.


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.

Monday, 15 September 2008

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.

Sunday, 14 September 2008

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.

Friday, 12 September 2008

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!!

Tuesday, 9 September 2008

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.

Monday, 8 September 2008


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.

Friday, 5 September 2008

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, 4 September 2008

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!!!

Wednesday, 3 September 2008

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.

Monday, 1 September 2008

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.