Mine's Broken

I think trying to do two posts yesterday was a little ambitious, well it wasn’t the writing part of it that was difficult it was loading, editing photo’s, video clips and then putting them all together. Doing all this whilst our internet connection was the worst it had been for years. Steve is fantastic at anything to do with computers but he couldn’t fix it. Normally I try to write my post for the day in the afternoon so that it’s done before tea and then I can have my chemo tablets and just enjoy the evening or not depending on where we are in the treatment cycle.

Our afternoon albeit sad hearing about the story of Steve left me feeling oddly happy due to having fun with Rebecca and Steve and finding a charity that I hope can help me and my family. A charity evolved by people who understand bowel cancer. Back home we had planned to make Transylvania Meatballs from the ‘Hairy Bikers’ cookbook for tea. Another cook book Rebecca brought recently, we enjoy cooking together, if I am up to it and we always do cooking to music. The kitchen comes alive and very messy from whatever we are creating. Pre-cancer Rebecca and I always danced whilst we cooked, just having fun but during treatment it’s been reduced to just singing but those days will return. We eat our creation in the garden together, lovely balls Rebecca!

Tea done and cleared away, I try to do the second post for you all and this took up the next 3 hours (on and off).  Mom was trying to call me, texts and daily messages of love stop me and I lose concentration again. The internet won’t work at any speed other than the speed I recall from the ‘dial up days’ now you have to be old to remember dial up and the screeching noise over the phone line. Steve is on hold to a call centre, he has the phone on speaker so he can continue to try to fix the problem for me. The ‘on hold’ music, well banal tune, is on a loop every 20 seconds and we have been suffering this noise now for 23 minutes! If used as a method of torture it would make anyone confess. I’m outside with Molly lying on me so I can’t move. Sat alone, pinned down by Molly, with my laptop and sporting my best ‘buffer face’ and what I like to call ‘the wheel of death’ where I stare endlessly at the cursor which has turned into a wheel like shape, willing it to connect to the outside world. I send a selfie to Steve of my buffer face but he didn’t get it, bloody internet. Steve can get internet on his laptop via his mobile data so we know the post is up but we can’t check it or view it, so frustrating. The new Bose system won’t play music as there is no internet and we are disconnected from you all and the world outside. Bullshit button needed here!

The internet comes and goes over the next few hours and I find it sobering, what would we all do without it now hey? Did Sir Tim Berners-Lee have any idea what he was giving us and what the internet would do for us, in changing our lives, for the good and the bad. I can connect to all my friends out there, share my world, send messages, view video, check the weather and my bank account, read the news etc and all from my iPhone and I don’t even have to move. The internet comes back up for a brief moment and Zena a friend from school comments on a thread about my 1/2 biscuit and wonders if this is a new slimming technique which makes my laugh. It’s not at all and it’s not healthy (that’s nutrition advice covered for any under 18’s reading) I just don’t like breakfast. I can out eat Steve most days but not first thing. Being on chemo brought a morning dilemma for us as chemo tablets have to be eaten with food. Steve says that my customary yoghurt at 10 am is only one up from a drink and so this has led to me having to eat toast too. The 1/2 biscuit is also a standing joke in our house as when Steve wakes up he always eats the other half.

Now amongst this internet disaster (define disaster) Rebecca goes out to meet Josh and friends. Now I’m just saying that the last time Steve and I had the place to ourselves and I felt well was probably in 2014. We haven’t been together in a full on sexual way since our holiday in March and so we did seize the moment, well I did. Now never mind 40 days in the wilderness (it’s Sunday so a biblical reference there) it’s been 8 weeks for me. As you all know Steve has been making his own sandwiches but it’s been 8 weeks, that’s 56 days, and I haven’t made any sandwiches for myself! All I’m going to say is the after the multiple waves of release I started to laugh and cry through happiness uncontrollably. Was it through pleasure, release or intense emotion? Yes, that and Steve saying “Now put that in your f***ing blog,” now that was funny Steve. We both laughed so much as Steve knew I’d never put any of that into my blog, would I? And so to test his editing skills I have so there! Now the question for you all to ask Steve is “how many are left in the box?” I do apologise to anyone reading this who thinks, I don’t want to know that, whoops. You have no idea of the suffering people go through on this shit journey. Love and laughter has to be in this blog otherwise it’s empty, it has to be real. Now kissing is something that maybe we all take for granted. Next time you are with your partner in a sexual way. Try doing it without passionately kissing cos you can’t when your on chemo, just try it, step into a small part of my world. Steve and I, and in fact anyone else on this journey can feel like their life is being taken away from them, No! hang on to it and just find another way.

Now maybe I should write a sex manual for cancer, I could call it ‘Fifty shades of chemo’ lol! I think I may have to place a call to my Mr Grey for inspiration!

Anyway back to Sunday – a day of rest.

I’m awake at 5.30, but I have slept for 5 hours which is really good for me. So I start writing this so that later I can just enjoy the day with Steve and Rebecca. I log on to Facebook once I’ve had my 1/2 biscuit, coffee and a fag. No one is up, the world is quietly waking up and I enjoy writing about and remembering yesterday. Rita is the first of you lazy lot up and online. She will be up early to head off to church to pray for me. Being a good Catholic girl, bless her and I know that I’ll be mentioned in my local Methodist church in Kingswinford by Nicky’s mom and dad. Amy is the next one up and online who got married two weeks ago. So I tell her to go back to bed to her lovely hubby. She went quiet again so I’m thinking she took my advice lol. But no it turns out I’m saying this to Amy’s mom online, whoops! Sorry Ali. I just saw the surname and assumed it was Amy, it could only happen to me, as of course she has changed her name now, I’m just glad I didn’t say something a little more saucy!

Mom calls me as she does every morning from the moon, oh sorry no the Scilly Isles which is only 50 miles off Penzance but everyone on that island must walk round with permanent buffer face! She is also off to church this evening, for a candlelight service. Not to add to the ambiance of the service but because they have no electricity or bloody internet!

Talking of the internet, since I started my blog in late May it has been seen by 6020 people from around the world. Each time you press share for me my stats go up and I stand a chance of reaching out to others. My sister in law Helen told me yesterday to stop thanking her for sharing it but I won’t as I really do appreciate everyone who reads my ramblings and then shares my blog, thank you. I seem to get a lot of hits from Turkey! so if that’s you Evrim, get in touch hey 🙂 x

Steve and I enjoy watching funny films, last night I remembered that I haven’t seen ‘Death Becomes Her’ in years so we plan to watch that tonight if the internet ever works again! Thanks for the tip on the funny films Aunty bloody Vera. If anyone else as a suggestion for a great funny film please let me know as Steve and I love a funny film.

Talking of films, have you seen Beaches? Nicky and I have seen this hundreds of times, we love it. It’s a real chick flick, funny and sad. There is a scene where out of anger, frustration and love of her dying friend she shouts “your not dead yet’  A very moving scene. Rebecca told me the other day that she wanted to scream this at me! Now that gives you an insight as to what my poor daughter and hubby have to see during the first week of chemo. How low it can get, watch the film and you’ll understand. Poor Rebecca, I do worry for her and what she is going through 🙁

So my Sunday continued as most families do across the world. We had breakfast together, did the garden to music, eat lunch, afternoon sleep (well just for me). We plan to walk Molly and then eat our Sunday dinner. Another lovely day, so the shitness scale is on zero again as I’m happy, content and not sexually frustrated anymore lol lol lol, girl power hey!

Oh there was a trip to Homebase which normally would have sent Steve into one of his mega rants but for some reason (I have no idea why) he remained calm, he also noted that the birds were singing this morning, funny old life isn’t it?

 

My day part two…..

So Steve and Rebecca wake, the day has already been planned from last night. Food shopping and then we are going to a charity event for bowel cancer. Rebecca used to work with a gentleman called Chris. He had cancer years ago but Rebecca when asked previously had never known the details as she didn’t like to ask him.

Steve and I head off the Sainsbury’s which reminds me of a joke I like ‘Why do we have Sainsbury’s? To keep the riff raff out of Waitrose,’ lol!

Whenever I go to there I always think of the day pre operation I went with my mom. I was in so much pain that I hung to the trolley and it took all my strength to not cry as I struggled around. I hate going there as I always think of that day and twice walking around with Steve today I have to fight back the tears. The frst week of chemo is so hard to go through and I’m better enough to go out but this can still be overwhelming.

Back home, showered we head off to the charity event. Rebecca was playing in the mixed football team at one o’clock. We take Molly dog with us. When we arrived there was a handful of stalls, a tombola, a raffle, a BBQ and the all important drinks and cake tent. About 100 people there, most wearing t-shirts supporting bowel cancer. Wow a charity event for people like me. Rebecca is not the most confident of people and was unsure of playing as she didn’t know many people, well just Chris really. I thought of all the times I had watched and cheered Richard on in this sport and now it was Rebecca’s turn to feel some love. However I don’t even think she knows the basic rules of the game, this doesn’t matter.

I started talking to a lady who was wearing a pair of shorts that look like her bum is hanging out, plastic naked bum shorts, so funny. She then told me the story of why they do this charity event every year. Now I’m going to recall the details as best I can however if I get any of this wrong then apologises to the family and friends of Steve.

Steve became ill at 33 years of age. He was diagnosed with bowel cancer in the autumn, 3 years ago. In the spring he was told he had about 2 years to live. He completed two cycles of chemo but then stopped. He died in the June at the age of 33, under a year of being first diagnosed. He achieved his dream to visit Vegas and Nicky has a treasured photo of him in the Grand Canyon. When she told me this I cried, I couldn’t help it and I’m crying typing it as I feel their loss. Her loss, the loss of a sibling. He continued to work up until the day he died and they were all with him when he died.

Chris went to school with Steve. The football events were started by Steve to raise money and awareness for bowel cancer. His family and friends have continued this in his name, in his honour. I met his sister, Nicky and I had a wonderful chat with his mother, Pat.

I cried for Nicky, Pat and for Steve. There was a photo of him on the raffle table. Taken at such a young age, so tragic so heartbreaking and yet they all come together to have fun and do there bit for him, for each other. They told me of the charity Beating Bowel Cancer. Now when I started looking on the internet I never found this site. I was given leaflets. The charity is run purely by volunteers and yet bowel cancer is the biggest killer of cancers in the UK, I didn’t know that. Every 30 minutes bowel cancer claims another life. Yet it’s a small charity as ‘Bowel cancer isn’t sexy’ well it isn’t. I’m not knocking breast cancer (excuse the pun) but I can’t run around with pink pants on at midnight can I???? Or can I LOL, now there’s a thought!

I have included the following photo’s and videos of our day. To share the joy of Rebecca playing football and fighting Chris in a Sumo suit. For me it was 3 hours of enrichment, fun,  laughter and tears. That’s why it needed it’s own page.

Each day I have the shitness scale. 0 – 10, 10 being really awful. Today for me has been a massive 0. Thank you to everyone I met today. For the advice and sharing the story of Steve.

 

So today as a special treat I’m going to attempt two posts for you. This is because my afternoon today has been enriching, I won’t say changed my life but definitely deserving of a post all of it’s own. So back to last night first……

I don’t know if you have noticed at all but it’s been a little warm shall we say LOL. It deserves a LOL all of it’s own as my Facebook feed is full of you all stating how bloody hot it is! We know, it’s like people think that the rest of us might have missed it or that where they live or work is hotter than where the rest of us live! Okay rant over!

So last night in the chemo gazebo Steve, Rebecca and I watched Johnny English again as I mentioned it the other day and we had forgotten how funny it was. Rebecca didn’t finish watching the film with us due to a headache and went to bed (worried about her). So it’s close to midnight, Steve is tired and so am I. I have problems sleeping every night and I try to stay awake long enough so that I’m really knackered but this never works and if lucky, I get 3 -5 hours a night. Tonight I decide I’m just too tired and go to bed with Steve (no condom stories yet if you think that’s where this is headed). I am so tired I think I fall asleep straight away only to wake an hour later due to the storm. I gave up trying to sleep and went downstairs to watch the storm, alone in the dark.

Lightning lit up the sky for about an hour, no thunder which I found odd as I do what we all do and count the miles away from us that it is and play the is it moving towards us or away from us game. The sky is heavy, it’s dark grey clouds hang low so that the far trees on the Rye that lie beyond our garden can’t even be seen. The rain and the wind adds to the almost horror movie like scene of my garden and beyond. I sit and watch the beauty of nature until 3 am when I try to sleep again.

Awake again at 6 am there’s no biscuits in the jar for my morning ritual – 1/2 biscuit and we are out of coffee beans! Now that’s two out of my three requirements for waking up gone, now I’m not happy. I manage to find coffee pods for Steve’s coffee machine and found an unopened packet of biscuits in the treats cupboard, or condom cupboard I think we will have to call it.

So settled after animal feeding with my coffee, 1/2 biscuit and fag. I sit alone again. I remember the package that arrived yesterday from Macmillan. Lots of reading material, I had started reading this last night but then watched the film instead. So once awake and armed with another coffee I move into the chemo gazebo with booklets and a pen ready to embrace the advice, wisdom and answers to all my problems, fears and worries from the experts.

How wrong can I be again? The main leaflet is called ‘How are you feeling?’ Now before I say what I think about this leaflet I must stress that I accept that for some people this maybe a useful tool and it is full of where you can get advice from. It was written by professionals and cancer sufferers and I must stress that my opinion is mine alone. Okay so now I won’t get sued or struck off any cancer support group.

It’s like cancer for beginners! It assumes that the person with cancer throughout the whole book (apart from one section, more on that in a minute) is unable to talk about cancer or anything else for that matter. I was ready to make markers throughout the leaflet to share with you all in terms of help but I actually found it outdated and lacking any detail. There is an example

Loss of interest in sex – You may need to focus more on sensuality than sexuality at this time. Using touch can be an important way of telling someone how you feel. It can help you communicate emotions that are not easily expressed in words.

Now I don’t know about you but if I cuddle with my hubby he can do this for about 20-30 seconds and then his lack of all control in any way shape or form from his ‘one eyed trouser snake’ takes over and even if he tries to hide the canoe in his pocket it pokes you in either the tummy or the small of your back. Men have no control over this, it’s not their fault. Once the beast is awake then not even thinking about Margret Thatcher can help my man. He tries bless him. If I said to Steve that I was going to use touch to communicate how I feel then he would think I was suggesting a game of charades. They also make no reference whatsoever about being radioactive and that even kissing is out. As Steve says “I’ve gone from the all you can eat buffet to making his own sandwiches.” I’m pretty sure most men would like the touching stuff for about 30 seconds to one minute before their thoughts would move onto wanting to ‘bump uglies’ or whatever you chose to describe making love.

They do recommend the ‘sex and cancer’ leaflet might be helpful or you can ask your health professionals and we all know what happened when I asked about oral sex with ‘Cancer Nurse Kim’ she went bright red and said that no one had ever asked that question before. Great no one talks about stuff, stuff that actually matters.

I did speak to Nicky about this as following her surgery she knows all about finding other ways lead a normal as possible life but even she agrees that she doesn’t talk about it to others. I can always talk to Nicky and we have a laugh on the subject of making your own sandwiches, LOL.

One website said that ‘You may feel differently about your body’ I don’t feel differently about my body, it’s my body that feels differently about me! It blows up like a bouncy castle, it can cause endless trips to the loo (not sexy) and your bum can be so sore that any sensation that you may be able to feel is lost by the never ending pain of your poor bum. My whole body aches, I’m endlessly tired and my arm is so bruised I look like I’m a victim of physical abuse. Any touching in our bed leads to ‘mind my bruised arm, don’t touch my bum, leave my tummy scars alone as that area is still completely numb and not my neck due to swollen lymph nodes.” So that leaves two boobs and my feet that are actually ok, great!

There are charts in the book to write down how you feel. Great, really! On anger they suggest you can either scream or punch a cushion, really!!! So I said to Steve what we could do with is something to get rid of anger and he has come up with ‘The Bullshit Button’ so when we are mad we are going to insert the button into the post for me to press or for you the reader to press, excellent and saves my cushions from being beaten to death or my neighbours listening to me screaming.

On humour there is one page that states “You may find it helpful to use humour in some situations. However you don’t want your family or healthcare team to think you don’t understand the seriousness of the situation. Now it again might just be me but there are undiscovered tribes in the Amazon jungle that know how bloody serious cancer is! I think I understand how bloody serious it is, I just don’t want to be a cancer bore, a victim, a self pitying mess who can’t laugh at herself. Rant over!

So as there is going to be another post today I will leave it there but I have to firstly do the scale of shitness from yesterday.

• Loo = 2  not bad, but I’m confused on this one today as does finishing and then having to go again before you make it out of the toilet count as one or two? and if I go late at night is that on tomorrows count or today’s? These are my worries!
• Sickness = 1 (not actually been sick but felt sick)
• Tiredness = 9 as I can’t bloody sleep
• Emotional feelings = 2 (not cried today and that’s a first in about 3 weeks)
• Fags smoked = 10 (always will be too many so I may take this one out)

No deductions for condoms used 🙁 as the leaflet said try touching – REALLY! I’m radioactive!

 

Overall score so far today 4.8 🙂 better than yesterday’s 6.6 so it’s a good day. That was until I went to use my car and realised that I have left the sunroof open all night throughout the storm! My centre console is now a water feature that just needs fish to complete the look. My leather interior looks wrinkled as if it’s aged 100 years overnight! It’s one of those moments when only swearing will do or laugh, which was of course what I did.

The second part of my day got much better and deserving of it’s own post so I will attempt a second post after tea for you all…….

 

 

I love a good rant me, is it that deep down being British we all like a little moan? Not a full on mega meltdown but an occasional rant which lets us all get things off our chests. I really like the comedian Rhod Gilbert. Now there’s a man who can rant. If you haven’t seen ‘The Man with the Flaming Battenburg Tattoo’ then you definitely need to treat yourself and watch it. It’s about how he uses a anger management diary to cope with his rants at lifes irritations. I would love Rhod to rant about cancer on behalf of us all. More on this later but first, Steve!

Yesterday morning Steve has to go into work and leave me. He is okay because he knows Richard is coming. Drugs administered, we are enjoying a coffee together before he sets off. Steve likes his food and good company. His days in the office are planned around lunchtime treats with fellow colleagues. An escape which he needs and looks forward too. There is however one problem with the office and that’s the cafe! So off he starts with his rant on why did the owner even bother to conduct a feedback survey if nothing ever changes? On a trading estate the owner has a captive audience but instead of driving business in, the manager has mastered the art of driving customs away with the lacklustre food and service. Steve and Graham had arranged to meet for breakfast, this sent Steve into one of his rants. Why do people feel the need to take a great drink, coffee and then ruin it, water it down and add flavours to it until it doesn’t resemble coffee anymore? Why do people have to do that long ordering process? By this he means the people he stands behind whilst they list their demands for a item that only costs £2.50! Your not ordering from the bloody Ritz! “Can I have a large semi skinny soya milk latte with half chocolate sprinkles and a shot of gingerbread syrup please?” All this whilst Steve stands with his tray of food getting ever colder in the vain hope that eventually this perfect drink of ‘not coffee’ arrives so that he can just pay and get on with his day! “Why order a coffee if you clearly don’t like the taste of coffee, just order warm milk and gingerbread syrup!” I listen to him ranting and I love it, he uses the everyday niggles of life to vent off some of that anger and he makes me laugh in the process just listening to him. I can see him in that queue saying to himself could you just get out of my way with your stupid non coffee-like drink and piss off. Gotta love a rant hey!

Back to Rhod, the anger management sketches are beautifully done and I won’t spoil it for you but he does this piece about writing to Imperial Leather. As one day he accidentally uses the wrong shower gel at the wrong times of the day, like it really matters as Rhod believes it’s all the same stuff in these bottles. Anyway he writes to them to complain and the reply from them is that they don’t believe that his insomnia is caused by the invigorating shower gel, nor is falling asleep at work was caused by the relaxing range they offer. They also added that they believe he expects too much from the comforting range during the loss of a grand parent, it’s just inspired and guaranteed a laugh out loud. Treat yourself and watch it, funny as. Steve, Rebecca and I went to The New Theatre, Oxford to see it live and it was so good we also had to buy the DVD.

Rita also has a rant. She loves my blog as she feels closer to me and what’s going on everyday. She only see’s my new posts when she see’s that Steve has shared it. A small part of her message and rant was “I’m fecking complaining, how come I missed the post ‘One day at a Time’? In fact I might just raise a grievance” She says fecking as she’s Irish. Her local church has had to order a bulk job lot of candles as since I have had cancer she nearly burns the place down every Sunday, God love her.

I don’t rant, I used to rant quite a bit I think, but not now. I actually don’t feel anger or get angry. Is that odd? I have no idea. I get sad and it hurts me so much that I’ve hurt the people that I love. That I turned our world upside down, like I’ve put life in the food processor and hit the frappe button. I wish I could help with everyone’s emotions/feeling and fears but I can’t and nor can anyone going through this.

Today I sat in the chemo gazebo and joined in with the one minute silence in respect of the lives lost in Tunisia one week ago. I’m also not going to rant about that. My heart goes out to all those who have lost loved ones in this horrific killing spree. My mom, Nicky, Keith and Beth all have been on holiday this year in Sousse. Yet again you think that bad shit will not happen to you, the stuff we read in the news, just seems so unbelievable that it could never never happen to our family or someone we know, but sadly it does. I like you have to look to our world leaders to decide the correct course of action. One of the reasons my husband got into politics as a due to a very wise saying ‘for evil to succeed it takes a good man to do nothing,’ So we all just have to put our faith in those who represent us. Failing that I think a cup of tea between the mothers from all sides could sort out all of these troubles, it may take a piece of M&S Victoria sponge cake too but don’t all men fear their angry moms? Girl power again I think, that’s two nil in my book on the battle of the sexes 🙂

Anyway back to ranting. So I think I need a chemo/cancer scale of shitness. So what should this scale include? Trips to the loo, actual sickness, overall tiredness, emotional feelings and of course fags actually smoked. So if they are all out of 10 (10 being the worst)  and then I divide the total by the five categories then I have an average and when asked I can say “today has been a 5 or a 6” perfect solution.

At the bottom of each post now the scale needs to appear so this is my first attempt for yesterday:

• Loo = 7 (as in how many times I had to go)
• Sickness = 2 (not actually been sick but felt sick)
• Tiredness = 8
• Emotional feelings = 6 (only cried 3 times yesterday, good hey)
• Fags smoked = 10 (always will be too many so I may take this one out)

That’s a 6.6 on the shitness scale! Job done. I have also decided that if any condoms get used out of the 8 (unopened box still in the treats cupboard) then depending on the quality of the experience and of course the overall artistic interpretation, I may just deduct a point or two off the total score.

 

Feel good Factors – Enough of ranting hey.

My wonderful daughter has brought me a lap tray. She spent hours choosing photos to go in it with me. She set the sizes, printed them, cut them to size and put them in for me, whilst I lay there knackered saying “you do it” as I had no energy. I have received the Macmillan nurses pack today for her and the family to look through. So I’ll let you know how that goes. I also went to the doctors and got my form for free prescriptions to send off and spoke to the Doctor about my worries of how my family are coping. I have now been officially referred as a cancer suffer. I never thought that would happen, well bad stuff doesn’t happen to us does it, just others!

 

Everyday Rebecca tries something new to help me. Flowers, cooking books, laptop tray, a can of pop to name just a few of the wonderful things she does for me and yesterday she brought me an ice cream to cool me down. Now I could almost eat it but my whole face went numb so Molly had it and she loved it. Thank you Rebecca for being so so so wonderful and thoughtful.

 

 

 

After yesterday’s post and update on Karen. I received private messages for her, she has been named my chemo bud by one of you (very American) so Thank you from Karen to you all as she appreciates your support and good wishes. She texted me today, she is still doing well and more importantly still at home and not in hospital :-). Big hugs and love to you, chemo bud xxx

 

Late last night I received a text from Richard saying that he was coming to see me today as he leaves for Canada again on Sunday. I was so pleased. I have found this week so hard. Amanda from HR called me yesterday to see how I was, a general update and through talking to her I realise that how I feel emotionally and physically are symbiotic and that cycle number 2 has been made worse due to the emotional side of my life at the moment. I’m just so tired all the time.

I fear sleep, in that I can only sleep for a few hours. At 12.30 last night I had to go to bed but woke at 5.30 🙁 Once awake and after a coffee, 1/2 biscuit and a fag the one minute warnings start and by the time Steve and Rebecca get up I’m on death by diarrhea number 4 and I’ve only been up 3 hours. I worry about Karen and send her a text and then message my friend who’s sons funeral was yesterday. I know how low the first day is after a funeral, when it’s all over, tributes and tears done and then it’s just getting through one minute, one hour, one day, one week etc to come. Endless time spent without that special person in your life.

Mr Grey calls me after Steve and Rebecca have gone to work. I congratulate him on managing to phone me when I am not on the loo. Now there is another person to bring into this blog and that’s Mr Grey’s uncle. Back in January when I thought I only had wind, he was also going through the same tests and Mr Grey and I would compare results. He was diagnosed the week before me with bowel cancer. He only had his operation last week! He has suffered so much and as Mr Grey tells me of his suffering to recover from the operation, my memories of Ward 12 and how ill Karen had been come flooding back. No one can articulate how hard it is to see someone really suffer. How helpless we feel when the person we love shows no sign of improvement, hope starts to fade and morbid thoughts start to invade our minds. His operation had been 7 hrs long and he is 70 years of age. Now that’s a big operation to get over. Mr Grey has to continue to work, be professional and then leave work everyday to sit in a hospital with his family all hoping for a sign of improvement, of hope. Like so many others when asked Mr Grey will say he is fine but honestly he isn’t.

After that call I’m knackered again and sleep in the chemo gazebo. Normally I would be too excited to rest if Richard was coming but these waves of tiredness are endless at the moment. I woke to Molly getting excited as the door opened and my boy was with me, home again 🙂

We chatted in the chemo gazebo, we took Molly for a walk and then a treat, McDonalds for lunch in the chemo gazebo. Rebecca wanted to see Richard before he left so I had arranged to pick her up from work so that 1/2 hour could be spent just the 3 of us. Best laid plans and all that! After eating both Richard and I fell asleep and missed picking up Rebecca, sorry Rebecca.

After chatting for 1/2 hour Richard was gone again, all too soon back to his other life outside of us, in the Army, a world of which we are not part. I’m so proud of Richard, what he has achieved and being part of our Armed Forces. As most people are in Britain today. However our service men and women also have to carry the pain of being removed from being part of everyday family life. Richard hides how he feels, hides within mates, fun, his job anything to pretend this isn’t happening. He wants to be with Rebecca and Steve to help but can’t, this can bring feelings of guilt. He is better off hiding or being able to avoid what Steve, Rebecca and my mom see but it brings him no comfort when he feels he isn’t doing enough or isn’t able to be there for them.

So why is this post called ‘Honesty?’ because to Richard like most people when they ask me how I am, I either say “I’m okay” or “read my blog” . I don’t mean to be like this but we all hide the truth about whats actually going on within us. We spare our loved ones pain at all costs however because I started this blog I have by default opened up myself, my feelings and my world to everyone. That’s either very brave or very stupid.  I have thought about stopping writing my blog over the last two days as it causes pain to others, but then something happened. This morning my mom called and I told her of the private comment via the blog from Sue and Tony who used to work with my mom. Mom cried, omg my mom just doesn’t cry! So Sue if your reading this then take pride in knowing that your kind words of love to my mom actually touched her so much, all via my blog. I have never felt so blessed and loved by the support I have received through opening up my world of cancer, my feelings, fear, pain and grief. Old friendships have been restored and new ones found. So I have decided to continue to write my blog everyday so that one day I hope to achieve what I set out to do which was to just help others through this shit.  If only we all lived in perfect worlds with perfect families and perfect friends who all said and did perfect things then my blog would not be needed but life isn’t perfect. My family is not perfect and I’m certainly not perfect. I will not however write stuff to pretend that it is. Anyone who reads this should be comforted and not feel alone through their journey with cancer. That how it feels and how others feel/respond or cope to you along the journey is not going to be perfect, that’s my aim, my only intention.

So Rebecca, Richard and I  have made a decision that from now on it’s only going to be honesty. No more “I’m fine” or whatever bollocks we all come out with to make someone else feel better. No more pretending and for Rebecca, she has to have Richard to talk to. When my dad died my sister had already died too so I was alone in the worry of what was wrong with him, the fear of losing a parent is awful. Watching them suffer is not something that any child, regardless of age can bear but sadly sometimes has too.

Last night Graham who works with Steve called him. It was lovely to hear him talking openly about life, work and laughing about stuff I’d written in my blog as Graham now also reads it. Thanks Graham 🙂 We all need each other to share our worries and joys of each day but unless we are truly honest, no one can reach us, no one can help. I’m not saying bore everyone to death with every details LOL but just don’t bury everything in the pretend world of ‘I’m fine’.

Whilst writing today’s post I get a text from Karen, she’s okay and got through cycle number 2. I can’t express how happy I am for her and her family. Now she just has to cope for the next two weeks with the chemo tablets and stay out of hospital and off the toilet! Well done Karen, with you all the way mate!

 

How do I even start today’s post? Okay so I have to firstly reflect on yesterday when at 12.01 I hit the publish button on my blog, my tribute to Julie, her life and the pain of losing her. That was so hard to share with you all. I woke to wonderful messages of love from my two cousins and my Aunty Shelia. It’s 7.27 and tears burn in my eyes, crying again! It’s becoming a daily habit. It is comforting but heartbreaking after all these years to just talk about her again. The day and evening continues with messages, texts, phone calls, personal comments on the blog from people I know and don’t know just sharing their pain. I’m so grateful to everyone for their support and love, I consider myself so blessed.

We all hide our true feeling of grief thinking that we are alone, that no one could feel the pain we feel. It humbles me that so many people wanted to share their stories of grief with me. Not for me to take that pain away or to fix them (no one can) but just to share in it, thank you.

Lauren and Dawn came to see me for the day and we spent the afternoon catching up on the last 12 years and times before that, of our shared childhood, poor Lauren couldn’t get a word in. Molly was glad of someone there to throw her ball for her though.

Prior to them arriving I felt unwell, tired from only 3 hours sleep again, waking up with sweats and cramps, running to the loo with the one minute warning, never pleasant.  I am still troubled by how Rebecca is handling how she is feeling. I called the Macmillan general helpline and spoke to a lovely lady called Sarah. She was very helpful about things that might help, local hospices and support groups. All which are being posted out to me, so I’ll let you know how that goes.

My mom called in the evening to say that she had seen my post, she cried, now this is massive for my mom, she doesn’t do showing emotion. I was glad that I had done something to share our loss, her loss, even if it was too painful for her to see it on a screen. After a long day I was exhausted and slept. Not like me at all, I slept for 5 hours, wow. Peace at last, I escaped from myself and the world I now live for 5 hours, like so many going through dealing with cancer there is very little escape.

I woke and felt okay,  but then the one minute warnings started again and just wouldn’t stop. I have a funeral at midday. Oh no! I can’t not go. Cancer nurse Daisy said in her wonderful Indian accent “If you go more than 10 times, you go A&E” well I’d only been up two hours and I was up to number 6, what was I going to do? Steve could see I was struggling and we have to yet again discuss toilets! Will I ever get used to talking about poo? The plan was Immodium and then get some fluids into me as I was weak. Showered and dressed I had to go to the funeral, I just couldn’t not go.

I met Helen, Jerry, Joseph and Tom through football. Richard played in defence with Tom. Football season, every Sunday’s through whatever weather, we were always there, devoted mom’s and dad’s watching our boys. Jerry managed the football team. Joseph usually only came throughout the summer or milder weather. He had cerebal palsy from the age of 5 months old.

Helen, Jerry and Tom have devoted their lives to caring for Joesph. In recent weeks the Facebook posts by Tom and Helen were building towards the inevitable that Joseph was not going to be able to continue to fight to be with his family who he loved some much.

The service was held in a beautiful 900 years old, local Church of England church where Helen and Jerry had been married and their sons had been baptised. It was the second oldest church in England. I was worried about getting through the service but thoughts just kept coming back to them and praying that they could get through it. I met Jane, Dominic’s mom outside. He also played in the football team. We went in together, tissues shared between us. Inside it was cool and peaceful and for the second time in as many weeks I found myself in church saying a prayer for my loved ones and for them today.

The service was beautiful but heart wrenching. Not a dry eye anywhere. The sight of young men carrying a coffin in to a church was just so moving. In support of the family and Tom, his friends were there, young, fit, full of life and yet joined in respect of the family’s loss. Richard couldn’t make it to the funeral, which I know hurts him. I could hardly stand for the hymns, my legs were shaking, I was dizzy and felt so sick. Nothing compared with the anguish the family were feeling.

Following yesterday with the tribute to my sister. I have no idea what it feels like to lose a child. How can anyone empathise with that? How can we even comprehend the depth of suffering? Tom had written a tribute to his brother, Jerry dedicated a beautiful poem which were read by others, but Helen stood so proudly in front of us all and held herself together to talk about her love, joy and happiness of being Joesph’s mom and the sorrow and pain she now has in losing him. No parent should have to bury their child.

The service was over an hour, the coffin was carried out by family again with Tom. Most people don’t know what to say in grief, or shy away from others’ pain. I sadly am not due to the people I have lost. Outside the church I went straight to Helen to hug and hold her, to tell her how proud I was of her for her courage in giving a beautiful tribute to her boy. We just stood, holding each other crying. I passed on Richard’s love to her, Tom and to Jerry, giving them all tearful hugs. I then stepped away for others to come forward to share their pain.

I couldn’t go to the crematorium I knew I couldn’t make it. I don’t even know how I drove back home. Once back with Steve I just couldn’t speak for over an hour, there were no words, how could I describe for him or you the depth of that family’s sorrow? I just hope that they were comforted today by the people who were there to stand with them in their grief.

So it’s one day at a time for them, for me for all of us, whatever hardships we are all facing. I like them am not alone. We have to take comfort where we can and sometimes lean on those who can help carry our burdens.

I am so sorry that this has again not been a more uplifting post. I do like to add humour as you all know. It just wasn’t fitting for today nor yesterday. I will however try to be positive again tomorrow, if I can ever get off the loo!

Karen starts cycle two of chemo tomorrow and my thoughts are with her too. With you all the way mate, chemo buds together! I hope she can take this cycle and her luck can finally change.

 

It’s actually 22nd June but this post is going to be really hard to write and to post up for the world to see. So I’m starting it now so that I can work on it for the next 8 days to get it just right.

My sister would have been 50 today. She was sadly taken from us on 19th February 1991. I will go into that later but first our earlier years.

Julie was 2 years older than me. Early memories were of us growing up where my mom still lives today in Rangeways Road, in the West Midlands. We were a very happy family of four, not special but just normal and like so many families. We were both given bikes one Christmas, blue as I remember them and due to our love of horses we used to ride them in the street pretending they were horses, doing rising trot on them and the curbs were jumps. We also used to use the banister upstairs, we’d place a pillow on it as a saddle and ride the banister, thank god there weren’t any mobile phones then to record that! It was our dream to have our own horse. We would tease each other over the years at Christmas and Birthday’s. Whoever was up first would wake the other one up by saying that there was a horse outside waiting for us.

Julie was just like my mom, quiet, shy, hard to talk to and if you didn’t know her you would think that she was a snob but that wasn’t the case. Julie was not like me at all, she was a ‘goodie two shoes’! I was just like my dad. She was so good that one day she was given money to go to the shops to buy a paper, she brought a Curly Wurly instead and told mom and dad that she had dropped the money down the drain. Unable to live with the deceit, she soon owned up to it as she couldn’t live with the shame of lying. Apart from that incident I don’t remember her ever being naughty, I made up for that and brought my poor parents enough problems to make up for Julie’s short comings. Our love of horses lasted years and we spent so many hours working all weekend at a local riding stables for free. We were lucky to share in one of our dreams together, we had our own horse, Bonnie first and then later, Czar. Thank you mom and dad for making that dream come true for us.

We used to fight a lot and we didn’t like each other much at times. I look back and regret every argument and fight we ever had. I was the stronger one, both physically and mentally. I’m not proud of taking her soft, loving and gentle personality for granted. She didn’t have loads of friends but the ones she had were real friendships that should or would have lasted a lifetime. Julie was jealous of the friendship I had with my best mate Nicky. She said to me once “you two are always together” and we were. This meant there was no time for my serious, goodie goodie sister. I do remember going to a nightclub with her once. Now my sister never drank or smoked (see I said she was nothing like me) but this night she had cocktails! Within an hour she was under the table, pissed and it was just so funny as I think this was the first time she had ever really drank and I never remember her drinking like that again. She was hiding under the table saying “they’re all looking at me” it was fun getting her home that night!

Julie was not very brave at all and squeamish at most things. When she announced that she wanted to be a midwife we all laughed. We thought she was joking but she was deadly serious. So after studying in Hotel Management at Halesowen College and getting a steady job she packed it all in to start to train as a nurse first. This meant that she had to move out of the family home. She moved into the nursing training block and had a taste of independence. She found friends and started to grow in confidence. I was happy as I got the bigger bedroom but the family home wasn’t the same without her. I visited her and attended parties in the halls of residence which are precious memories but again pre modern technology of cameras in phones and Facebook, there are sadly no photo’s of those happy times spent together. She met Rachel during these years, a friendship through the studying years and someone, like many others that liked Julie for who she really was. By now we had sold Czar and she brought Amber, a Red Setter which lived with mom and dad.

She met Anthony and he made her come alive. She shared with him the activities that he was into and she loved them. Motorbikes, caravan holidays in Wales, water skiing and motocross.  My sister used to say to me that when we are born we are half of an orange and when we meet the right person we become whole. She had found her other half of her orange.

Their courtship lasted and the wedding date was planned for 30th June 1990, Julie’s birthday. It was the happiest and best day of our families’ lives so far. A dream wedding day full of fun, love and happiness.  I have a video of that day but I don’t watch it very often, it makes me too sad. Hearing their voices and seeing the people alive that you have lost, is heartbreaking. Their first dance of the evening was to Eric Clapton’s ‘Wonderful Tonight,’ a song that took me years to be able to listen to without crying.  The memories of them dancing, so much in love, so happy, full of hopes and dreams of what the future held for them but was never to come to fruition. This made that song impossible to listen too. It was at their Wedding that I first saw Steve, he was going out with Dawn who grew up over the road from us and I had known her since I was 3 years of age.

Life continued as normal for us all, They had their honeymoon and then married life began for them and Amber, her dog. I visited their home often as we had both grown up in terms of stupid sibling fights and I was happy that she was married to Ant, who had become a dear friend. We shared lots of happy times together in the years before the wedding. We both had boyfriends into motorbikes. We would go down the local bikers pub at weekends. I stayed with them in Ant’s family caravan in Wales for long weekends. I shared in their circle of friends and we had some fantastic times just doing normal stuff that we all do, not thinking for one moment that life would ever be cut short. Death or my experience of death was limited. Uncle Fred had died, a friend of my Dad’s mom. My granddad had died (my mom’s Dad) in 1988 when I was 20 and my other grandad, but I was too young when he died and I can’t remember him at all really, but that was it.

I remember Christmas Day 1990, together in our family home. We had all put together and brought my dad a flying lesson and mom had brought him a new pigeon clock. He was so happy. Another great family Christmas, we had no idea that it was to be our last.

Julie had been studying for years and after Christmas she shared with us the fantastic news that she had passed and was now a qualified midwife. To celebrate this she wanted to go on holiday with Rachel. Her study partner and friend. The gulf war had just started and Anthony didn’t want to risk her going abroad at this time so they agreed that they would go to Scotland and that they would share the driving. So a week of fun to celebrate the end of years of studying and exams was organised. Anthony ran his own business and couldn’t take the time off.  I think he knew that their friendship through the years, studying together and becoming qualified was the celebration, girlie time and men were not allowed.

My dad had a recurring dream for over 20 years that someone would go away on holiday and never return. So strong and frequent was this dream that my mom and dad never went abroad since the dreams started.

I had moved to Gatwick with my job and hadn’t lived at home since I was 19. One night in February 1990, I woke up and a feeling of grief washed over me from my head down right down through my body, I woke crying, I just knew that my sister was dead. The next day at work I shared my dream with Carole from HR and the only other person I told was Julie. We spoke on the phone before her holiday and after telling her of my dream I finished the call saying “I love you.” I think that was the only time that I remember ever telling her. Early years growing up were full of either our love of horses or arguments and fights over stupid things.

Julie wrote to me on 15th January 1991. I have selected some lines of that letter for you and a photo of the last page.

Hi Wend, Thought I’d start to write to you as I won’t be seeing much of you now. As soon as we start to be friends again, you disappear.

Now don’t forget if you want to chat ring me and I’ll phone you back ok don’t leave me out I quite miss you and we can’t quarrel on the phone! can we?

My mom and Julie had helped me take all my stuff down to my new room in a shared flat to start my new job. I was happy and making friends. The first night that I had been invited out had been a fabulous evening spent at a pub called ‘The Gamebird’ in Horley. I had a great night and I returned to the flat happy. I’d sang and laughed so much I’d almost lost my voice. The phone rang, I answered it, it was my mom, she said “it’s Julie” and I dropped the phone to the floor instantly and started to cry, I just knew she was dead. The dream the other night, my dad’s dream for years. I eventually managed to speak to my mom for the details that she knew at that time.

I phoned Nicky and then Daz (old boyfriend) I told them both what mom had told me. I didn’t get the response I wanted from them. I thought, hoped, prayed that they would say “no, no, no Wendy that’s not right, I saw her today and she is fine” but neither of them did, I had shocked them both. They both replied “what!” Nicky was always there for me and has been since we meet. She was there for my whole family through the difficult times to come, thank you Nicky.

I phoned my manager, Patsy. The next train out of London Euston was at 6 am the next morning. She arranged to meet me at Gatwick, she stayed with me all night, she arranged for a taxi to take me to the train station and sat with me whilst I cried in the chapel of rest at the airport. God sends us angels sometimes and she was mine that night. I arrived at Birmingham New Street running into the arms of my mom, sobbing. Other commuters must have been puzzled at the scene but I was not aware of them around us at all.

We know that there has been a car crash, it’s Anthony’s car. Two girls, one unconscious and one dead, and two handbags and so someone had to go and identify the body. Dad and Anthony set off to Scotland. My dad asked before he went into the room to identify her “is she in a bad way?” “No” the policeman replied. Apparently my dad had the policeman pinned up against the wall after he had been in to see her. I always wanted to ask my dad about what he saw, but I never did.

Another memory of those early days after she died was the need to be in church, the church where she married Ant just months before. It was late at night and dark, I had no idea if the church would even be open but I went anyway. I walked through the fields of my childhood which I had shared with Julie and school friends, I was on my own, it’s dark but I know every path. The church was open but empty and dimly lit. I was sat in the pews, crying. The next thing I know the Vicar is with me, trying to understand why I was there. I could hardly speak for crying but I do remember saying when trying to apologise for me being there so late was “oh God I’m sorry” Then I realised what I’d said, I’d used the Lords name in vain, in a church, in front of a Vicar. I was ashamed and the tears just kept falling. The next thing I knew was that Daz was beside me. I have no idea how he knew I was there, I hadn’t told anyone I was going. Daz dropped me back home that night. Church didn’t help that night, nothing helped, nothing took the pain away, nothing could.

Back at home over the coming days, family and friends came to offer comfort. We knew that it was Julie who had died by now and all hope of it being Rachel had gone. Isn’t it awful that we would wish that grief on another family? Dad and Anthony returned. I spent a few nights with Anthony to comfort him. I could hear him pacing upstairs for hours, wailing and crying for his lost love. I couldn’t comfort him, myself or anyone else.

The day after they returned everyone got postcards from Julie. Anthony’s started with “Hi Ant, don’t worry your car is still in one piece,” this was awful for us all. The postmark on the postcards we all received was 19th February, the day she died. The Valentines cards they had given each other just 4 days before were still on display in their home. I had to sort through her stuff for Ant. I found odd things really hard to deal with like her hair brush, I could touch her hair and her sanitary towels ready for her next period. I still have a pair of her jeans in my wardrobe today, I don’t wear them but I can’t part them either as I can still see her in them. The need to hold onto anything after someone has died is or can be unhealthy. Julie had baked profiteroles and they were in mom’s freezer, I think it took her over 5 years to throw them anyway.

My postcard, which arrived after she died.

Turns out from the autopsy that the last contents of her stomach were Coke (the drink) and cough medicine. Being a nurse she didn’t measure cough mixture but just took a gulp. My sister was too sensible to fall asleep at the wheel, as this is what they were saying happened. I believe that she became unconscious due to the cough mixture and coke mixing together. She was driving and Rachel was asleep, she was going around a bend on the A9 and coming the other way was an articulated lorry. He flashed his lights at her as he could see the car was out of control and swerved to miss her but she hit the back wheels of the lorry and her life ended. I felt sorry for this lorry driver, the impact on him of what he saw that day must have been horrific. We understand that they had to be cut out of the car to get them free.

Mom and I had to go to my Nan’s (my mom’s mom) and tell her that Julie had died, that was hard. I suddenly remembered my dream whilst I was there, I asked my mom if I had told her about my dream but she didn’t know what I was talking about.

I remember one night most of the family coming round. Mom being an only child it was my dad’s side of the family, his sister’s my Aunty Cynthia and Aunty Shelia. My dad’s mom who wore a hearing aid started crying as she just couldn’t hear or take in what was being said. Can you imagine outliving your daughter or granddaughter? Her death was announced in the local papers and the next night both my Nan and Ant’s houses were burgled. They took all of my sisters jewellery, wedding ring, the lot. There are some sick scum in this world. An appeal in the local paper sadly didn’t bring the jewellery back.

I received a call from Carole in HR at Gatwick to say how sorry they all were to hear about Julie. I remembered my dream “Carole, did I tell you about my dream? I asked as I knew I had told Julie but I couldn’t remember who else I told. She said “oh Wendy, I’ve just gone all cold”. After Julie’s death my dad never had that reoccurring dream again that he had had for over 20 years, that someone went on holiday and never came back.

As Julie was on holiday she had a camera with her. This is one of the last photo’s ever taken of her with Rachel. I’m glad that she was happy. They had managed to go horse riding and it seems comforting that horse riding, the one thing that we both loved and shared together was one of the last things she did.

The funeral day arrived and my mom said that I had to write a card for the flowers as these were the last words I’d ever say to her. But I had said mine that night on the phone, they were “I love you” and although I didn’t want to, I had to write the card. Anthony was in a terrible state. The hearse drew up and he was physically sick. We travelled to the Crematorium and it was like there was a football match on, so many people and cars. There were so many people that not everyone got in, there was about 100 people left outside. The aisle was full and people stood at the sides too. It was so strange because some of the people there I hadn’t seen since their Wedding just 8 months earlier. Ant couldn’t walk into the Crematorium, he was draped over two of his friends shoulders. I just couldn’t cope with it all. I like the rest of my family was living a nightmare. Julie wore her wedding dress again that day.

Ant wasn’t the first to be told about Julie, my mom was, as the details in her handbag were still in her maiden name, King. The police turned up but my mom was out having a pizza with a friend, I can’t remember where my dad was or who told him. With no one at home, by some stroke of luck they went to nanny Jan’s house (a neighbour over the road). Mom returned from the meal, the police and Jan were waiting. She was told about the accident and very calmly she offered them a cup of tea. No tears, as these took a while to come out. Mom called Ant and asked him to come round and told him that it was urgent and to bring a friend with him. She then had to tell him that his wife of 8 months, her daughter was dead. They never even had the time to have their first argument, she was taken before even a year had passed. They were still just so happily married, this was not supposed to happen.

After the funeral life was so hard. My dad was a wreck, he drank whisky all day without any effect on him and cried. Amber (Julie’s dog) return to live with my mom and dad. My rock, my world was falling apart and I couldn’t cope with it. I stayed with them for only one week and then I returned to work. The week that I stayed with them was shared between mom and dads’ and Ant’s house. On the third day after Julie died I woke up at my mom’s. I was in the bedroom Julie and I had shared together on and off throughout our early years, and I knew she was gone, I couldn’t feel her with me anymore.

My job at Gatwick was 140 miles away, far enough away to be able to hide from the pain that I saw in my parents, I could pretend it hadn’t happened, that I could call her to talk to her if I wanted too. Seeing my parents grief was too heavy a burden for me.

I then became angry and this anger grew as time passed. I would see drug addicts on the streets or the homeless, rapist or murderers in the paper and think why did God take my sister and leave this scum to live? I started to hate God, resent his power and for taking my sister away from us.

Julie having passed her midwifery course was invited to a presentation of her certificate at Brierley Hill Town Hall. I attended with my mom and dad. They went up to receive her’s along with all the other midwives that passed that year. I sat in the hall, in the audience with all the other adoring families watching my parents collect what she had worked so hard for, one of her dreams. It should have been her up there that day, being happy and proud of what she had achieved. I could feel the sense of pity from the audience as my mom and dad accepted the certificate. It was hard to watch them on that stage. She should have had this moment, it should have been her that day, on that stage.

My anger turned into depression and I remember coming up to the first year anniversary of her death, my feelings grew darker. I didn’t want anything, not light or dark, not sound or silence, I just wanted the pain to stop. Raw grief is dangerous, an empty feeling in your heart that just can’t be filled. I started collecting painkillers with the intention of taking my own life. I just didn’t want anything anymore, I didn’t want life. I never took those pills, how could I do that to my mom and dad? One of the hardest things that happens when you lose a sibling, if there was only two of you to start with, is that you are never enough. Every occasion, Christmas, Birthdays and especially Mother’s & Father’s Days were just so hard. She was always missing and I couldn’t replace that gap. The missing card on the shelf. No card was good enough, no present cost enough. Even now I spend more money on my mom at Christmas than on my kids as I can’t ever make up for Julie not being there, I never could nor could any card or present. I have never admitted that, the pain of never being enough. I’ve carried that around inside for years.

I have had to learn to be an only child. Which is not easy as for 23 years I had someone to share memories with of fun times with mom and dad. My mom struggles with meeting new people as the usual questions are asked when getting to know someone. Most ask “do you have any children?” Now what does my mom say? “yes, two but my oldest daughter died at the age of 25?” and risk the awkward silence and then seeing the look in that persons eyes who wants to just get away from her? Does she say “yes just one” and deny Julie ever lived and live with that guilt of pretending she never lived? It’s a hard one to answer. I however if asked always just tell the truth but hope that the question doesn’t really come up at all. I answer factually without emotion ever. This may make me seem cold and it is but I’ve learned to just say it without feeling what I’m saying.

I started to fear loving anyone, getting too close as I never wanted to feel hurt and pain like that again. I started to build a wall around myself to protect the inner me. I stopped feeling deeply and preferred to appear happy, as that’s what people want. Smile and the world smiles with you, cry and you cry alone.

I travelled back when the ashes were ready to be laid. Now I wasn’t prepared for this, I hadn’t thought what it would be like. It’s awful as a big funeral car arrives and they bring out a small box. The person that you are grieving for is reduced to a small box of ashes.

Every year on 30th June and 19th February my mom and I light a candle, in love and remembrance of my beautiful sister. I always exchange a text message of “thinking of you” with Ant. He has never missed a Valentines Day yet at the church yard in all these years that have passed. He takes flowers, 12 red roses usually, where they married and where she is now laid to rest. My dad has now also joined her in the same plot, in the church grounds where he gave her away to marry Ant just 8 months before she died.

I get no comfort from going to the grave, so I don’t go very often. My mom used to go every Friday evening after work with fresh flowers. She did this for 6 years until my dad become ill. I had just managed to get her to stop going and then dad died. She doesn’t go every week now but she has to drive past the church regularly. A constant visual reminder of where her loved ones are.

I met my first husband Andy at this time. He had a normal happy family and I was able to hide in them. I had been told that it would be very doubtful that I would ever be able to get pregnant but two years later to the month Julie died, Rebecca was born on 7th February 1993. She gave us all a reason to live again. 16 months later Richard was born, on 8th June 1994, my mom and dad’s wedding anniversary. he was born in Wordsley Hospital where Julie studied and worked in the delivery ward.

Anthony has had to move on. For years he used to take my dad for a pint on a Sunday night but these evenings faded away over the years. He has a partner and they now have two children. I am so happy that he has found peace and happiness, but he never got married again. When my dad died in 1997 Ant was in the main funeral car with Mom and I as he was and always will be considered part of our family from years before. It saddens me that Richard and Rebecca don’t know their Uncle Ant. If Julie were still alive today all of our lives would be so different to the life we lead today without her.

I found it hard to cope when her 40th birthday came along and now another 10 years have passed and she would have been 50 today! I hope my new friend, ‘my blog’ that holds some of my innermost thoughts and feelings can help me again in easing the pain that I have carried around for all these years, by sharing this  with you all. As it has done through my journey with cancer so far.

Now my mom can’t think about me not being alive, nor can Steve, it’s just not an option for either of them that death may come knocking at our door once more.

The awful things that we see and read about everyday in the news of things that happen to others, but can never happen to us, or so I thought. I couldn’t believe that death had come to our family and taken my sister who was good and kind. She was only 25, I was 23 at that time and then my dad died who was only 57. As each year passes I mourn for my sister, I think of her everyday as I do my dad. I stopped being angry with God and I am thankful for each day I have. I decided that I wouldn’t be a victim but instead I would embrace life, but life isn’t fair. I hate causing my mom pain with constant bad news on the cancer front. I think that losing a daughter, a husband, a mom and a dad is enough for anyone and it’s surely someone else’s turn for grief.  But ‘fair is for children’ as they say and who knows what lies ahead of us all, life just isn’t fair at all sometimes. My first milestone is to outlive my dad who died at 57 but I have learned to enjoy each day as it comes and sometimes you are better off not knowing what is around the next corner.

So the moral of the story is – live life, don’t let it pass you by. As Patsy once said to me when I asked her about whether I should go out with Steve or not, “my dear, run down the road and wave your knickers in the air as life is too short.” What wise words they were and they made me laugh.

Steve has made me the person I am today through his love and support. Listening to my life stories. Some of which I am not proud of. He loves me for who I am and what has made me, me.

I wrote this poem to express my pain after she left us and I’d like to share it with you.

As I look at past photo’s, I can count up to four
I look even closer, do you know what I saw?
A Mommy, a Daddy, a unit, one team
I look at our faces, how happy we seem.

A  fills my eyes, I ache in my heart
our family of four is broken apart.
The future it holds for us only three
One Mommy, one Daddy and only one me.

No one could replace her, no one would fit
into our unit, the close family we’ve knit
and if she could see into our hearts
I know she’d be proud of how together we are.

But still we can never replace the fact
for us now there’s only looking back.
Forever young, beautiful and free
in our memories always to be.

In future days when looking at snaps
We shed a tear as there’s always a gap
as I count myself a Mrs and Mr
there should be another, my beautiful sister.

I know that this is my story about my grief in losing Julie and about those around my family at the time. I also know that those of you who have sadly lost loved ones will read my post and maybe moved by memories of your own personal pain of people you may have lost. I’m so sorry for your pain and that I may have made you feel emotions that you like I choose to hide away from the world. This post was written out of respect and love for my sister and all those who know the pain of raw grief. If you have experienced that raw grief, you are not alone and sometimes it’s good to remember and feel that pain. People are only dead when we stop remembering them and stop talking about them.

If memories are all we have then I had to share mine for my Mr Wonderful (hubby) my children and all who know me, as in this post are the details of which I have never really shared with them or you, but I have now.

So tonight I will be lighting a candle as will my mom. We do this every year on her birthday and death day. I have been given a candle holder for this year by my much loved Aunty Shelia, thank you. This year she would have been 50 years old and married for 25 years. Instead of family celebrations for us there are memories and a candle of remembrance.

Finally thoughts: If the price we pay for loving each other is the pain that we feel if we lose our loved ones. I’d rather have loved and lost then to never have loved at all.

 

 

Going through and dealing with cancer can make you feel very lonely and scared. That’s why I started this blog to help others. I just wanted to share some statistics with you from the Cancer Research UK Website. A website I trust and have used often. All statistics are from England only.

In 2012, 161, 823 people died from cancer

440 people a day die of cancer, one person every 4 minutes!

Cancer accounted for one in every four deaths in 2011

Common cancers making up 46% of all deaths are from lung, bowel, breast and prostate, these are in no order.

One in every 30 of us in the UK are either living with cancer or in remission

There are more than 200 different types of cancer. By 2016 1,000 people a day will have cancer, that’s an estimated 361,000.

Death rates have fallen by 10% over the last decade. The expectation is however that cancer rates will rise again as we are all living longer. Cancer is worse in deprived areas in Britain today.

 

Those are sadly some of the cold true facts about cancer, the point is you are not alone. I do also worry for the loved ones, family and friends of the person going through cancer. I can see the effects on my family and friends and I feel helpless as I can’t help them with how they feel. Here is a sad but true story for you:

I was at our local park, not long post operation and Steve had to return home quickly for something. So I was left with Molly. I couldn’t stand for long and had to sit on a railing outside the gym until he returned (which wasn’t long). A woman noticed me, she was young and looked physically very fit in her gym outfit.  She stopped to talk to me, I must have looked very odd struggling to play with Molly.

She knew all about cancer, her sister had suffered with breast cancer and sadly had to have one breast removed. She herself had breast cancer too but still had both her breasts. She told me about the volunteering work that she did at our local hospital to support suffers of cancer. What I found most distressing was when she told me how many men leave their wives soon after cancer is diagnosised.  I was shocked, really shocked but having thought about it, it is an interesting debate for you to have with yourself.

If you were diagnosed with cancer and you weren’t happy with your partner would you leave to find happiness for yourself, or stay. A worse dilemma would be if you were unhappy with your partner and they were diagnosed would you leave them? Or would you stay hoping they would be cured or die and then leave them or be free with a house paid for hopefully out of the insurance money? It’s so sad, but examples of which are so hard to even contemplate but happen every day for lots of people.

I have an old school friend who doesn’t do Facebook but emails me with encouraging words and humour to help me. She has had to have both breasts removed and makes jokes of travelling to work on her bike with her chicken fillets in her ruck sack. She has been married now for 27 years, she has been one of the lucky ones, like me who has a wonderful husband. She has become an expert lingerie shopper and makes the most of what she has or hasn’t got.

Bowel cancer isn’t sexy but I can’t imagine what it must be like to not have my breasts. I know the answer to that actually, you would just have to cope, to just get on with it as best you can because cancer takes away every choice you have.

I like my friend am very lucky as Steve is a devoted husband to me and I know he means it. Unlike other illnesses we are not talking about a few months of disruption we now have cancer with us forever. 90% of people do not die from the original tumour but of when or if the cancer goes secondary or metastasizes . If we are lucky in terms of chemo treatment killing my ‘Harribabes’ including the ones in my neck and gut lymph nodes, we then can move into remission but then face the dreaded continual tests, check up and results.

Today has been hard again for me with side effects. Still awake until 3 am, slept until 6.30 am and then feel so weak for the rest of the day. I have managed to do some project work for work so that I feel that I’m playing my part. I can focus for about an hour, then sleep and then go back to it. The usual side effects that I’ve already spoken about, just stuff that just brings you down. My taste buds have gone now too but I know they will return instead of this chemical taste in my mouth, fresh pineapple can help with this. Chemo slows your body right down, I did get my period but it was 3 days late so no HRT nymphomaniac for Steve yet, poor Steve.

So the moral behind today’s post is if you are blessed with having a good relationship, then you’re lucky. If however you are just putting up with what you have got then don’t wait for disease or old age to come into your life to make you see that we only come this way but once, make the most of what you have. Now I don’t want to be blamed for an increase in divorce rates but I just want you to think about your life.

It’s going to be a strange week for me as I’m looking forward to visitors tomorrow. I have a funeral on Wednesday, my friend who lost her child and Karen starts her chemo cycle number 2 on Thursday. I can’t express how much I worry for my friend, I want us both to beat this and live our life’s again as survivors.

Now tomorrow is going to be a very difficult day for me, my mom and my family. If you read my blog regularly, I’m grateful to you. I am just warning you that you will need a good cup of coffee or tea, at least 2 biscuits and some tissues. It’s a long post for you to get through as I have been working on it for the last 8 days.

If you have never read my blog and you are a first time viewer then you will find out more about me tomorrow then I’ve ever told people, so start at the beginning of my journey with cancer to catch up and then tomorrows post and my daily ramblings will make more sense.

 

 

Sitting in my now new ‘Pimped Chemo Gazebo’ last night. It’s been pimped (as in that old reality show, Pimp My Ride) as Steve has decided that my outdoor home needs improving. He heads off to John Lewis and returns with a baby Bose Sound System and LED lights. They are very posh as they have 9 different settings. They remind me of Christmas Tree lights. They remember what time you put them on the day before and automatically turn themselves on at the same time the next day. Plus after 6 hours they turn themselves off! How cool is that? Only at John Lewis hey. We have so many speakers in our house, as Steve loves his music to sound good. We could have just used the Bose speakers from upstairs out of Richards room when he is not at home but their not portable or Bluetooth and apparently Richard, Steve says that he thought we had given them to you! Happy days hey Richard.

So after a meal we are sitting in our new improved chemo gazebo, it’s getting dark and the Bose system is playing some of our favourite music from the newly created Gazebo playlist. Chilled with a beer we just chat away as normal. Now I have decided that I have reached a point in my life that finally I’m at peace with myself.

How often do we say to ourselves that we are happy but life we will be better when…….. then I’ll be really happy, whatever your thing is. We say negative things to ourselves like, I’m too fat, too tall, too skinny, too small, not attractive enough, boobs are too big, boobs are too small, hair too thick, hair too fine. Am I kind enough, a good enough mom, good enough at my job, good enough at everything I do and so it goes on and on and on.

Then if that’s not enough we move on material things to attack ourselves with, my house isn’t big enough, my car isn’t new enough, I need new carpet, need to redecorate, need to improve the garden, need that perfect holiday. My life will be truly happy when I’ve achieved these things.

In Ben Elton’s book ‘Stark’ (which I started on a beach holiday but haven’t finished yet) there is a piece in it where he says “A man only has one dick and one belly.” Now obviously if you are a woman you will have to bear with me on this one. So if you don’t have a car and you get a car, it’s fabulous and you have freedom. So why are we not happy with that? Why do we need to get two cars, a bigger more powerful one or a more luxurious model? We can only consume so much. A man can only drive one car at a time, eat one meal and have sex with one woman at any time. Why is it that we feel the need to improve, improve our status, prove that we have succeeded, are getting better in the rat race, proving self worth?

Cancer has taught me that I’m actually finally happy, happy with my life, who I am and what I’ve achieved. The bits I’m not proud of I can’t change so instead of beating myself up about them. I just have to finally accept them as the shit bits. Life is about learning and in life it teach us things about ourselves too. I don’t now think that ‘I will be happier when…….. whatever self destructive thought I was having at the time. Steve’s need to pimp out my gazebo is the need to show love. Our home is turning into a chemo friendly house. He even brought me a special adapter to put on the end of the watering hose so that I can water the plants in the garden. His need to show love, so he buys more stuff. I understand that need in him.

Today Alison ran for me in the ‘Race of Life’ in our local park, we call the Rye. I can hear the build up from the back door. Paula, Alison’s daughter sends me a photo of her mom supporting me and promoting my blog. Tears stung in the back of my eyes. I was so touched. Then the rain started and I stood at the back door feeling sorry for them doing it in the rain. There are some wonderful people out there who try to do there bit for cancer research. When my dad died in 1997, there wasn’t even a CT scanner in the hospital. How far have we come in support and our love of our NHS. By the people like Alison who runs in the rain and raises £200. Scanners and modern equipment are available due to fund raising and as they say ‘together one day we will beat cancer,’ but only through people like Alison, many thanks Alison, you made my day cos you cared enough to make a difference.

It’s been a tough day today with side effects. I tried to clear the breakfast things away but I sneezed (now don’t laugh) your face feels like you have been hit in the face with a cricket bat. Your bones have turned to dust. I stops you in your tracks, you can’t move. My hands have moved from pins and needles into someone is stabbing them all over with a red hot knife, I’m dizzy and feel so tired. Steve is out, Rebecca is ironing. I lie down, I need to be still. I wake and it’s 3 pm. Where did the afternoon go! I go in the kitchen to find Rebecca has gone out and brought me another lovely bunch of flowers, bless her. I awake feeling better, thankfully. The first 5 days are rough on your body but it will soon get better and that’s a comfort. So I don’t want more stuff, I’m happy and my only wish is that I can join in with life again after my treatment. This time with a sense of ‘it’s okay, I’m happy and I’m here to just enjoy being with you all’.

Earlier I was looking forward to a phone call today from Brenda, I told her to text me when she was free. She texted but I just felt so ill, I couldn’t talk. I managed to reply that I’d have to try later but was so sad to have to put this call off. I did talk to her later. I am forever moved and blessed by people who have been so touched by my blog enough to contact me. I consider myself so lucky through friends reaching out to other people who may need help. It was so lovely chatting to Brenda. She has also shared my blog to her friends. I check my stats everyday and when you lovely supporting people share it my stats go up. I have between 300 and 600 hits a day and around 40 people who log on for a read everyday (don’t worry I can’t tell who you are, big brother isn’t watching you that closely) but it encourages me to keep writing. So thank you Brenda and Alison for making my day.

 

 

Before I explain that title in detail. I will update you on chemo hell. It was 1.40 am in the morning and I have to try to sleep. The chemo upsets your sleep pattern so ‘it’s all perfectly normal’ as my dear sister in law Sarah would say. Brushing your teeth is a nightmare, so you have to rinse quickly under the hot tap before the water gets too hot. Colder water running down onto your hand starts the pins and needles off again and once they start it’s awful cos you can’t use your hands. Then undressing becomes a problem as you now struggle to get undressed. I get into bed as quietly as I can so I don’t wake Steve. I lie down but then the shooting pain starts in my head on the left hand side. I’m holding my head, my body aches, my arm is sore where the chemo went in and you just feel so alone in this, scared and trapped. Unlike last time I at least know that it will fade as the days go by. That’s why seeing Karen yesterday meant so much to me as no one, unless you have been through it can really empathise.

Karen was so ill on cycle one that she didn’t complete it. She said to me yesterday that it was hard to describe how bad she was. I said that she didn’t need too. I reminded her of the text she sent me. She said that she felt so ill that she just wanted to die. I should think myself lucky and I do. I can cope, if you can call it that with the drugs. 40% of people who start chemo drop out, a shocking statistic.

I wake it 6.30, everyone still asleep. I manage feeding the animals and get coffee, my usual 1/2 biscuit starts of the jaw ache off. Pins and needles in my hands, ‘there my bloody gloves gone’, now I feel angry as I didn’t clear away from tea properly last night, no nice cups left, dishwasher not put on and I can’t find my glove 🙁 after a while a manage to get a coffee and a fag and sit in the chemo gazebo.

I receive a lovely message from someone in the Midlands who reads my blog who is also 47 and attended the Buckpool School. This school can be seen from the back of my moms house. We exchange familiar names from our past childhood days. It always makes me my feel good to know that my ramblings are read by others and I’m actually helping people. I also get messages left on my blog itself. Now this really excites me as it’s a power thing, let me explain. I get an email if someone leaves a comment. I have to approve the comment first before it goes into the blog. Once I approve you then you can post up anytime and it goes up there instantly. I get a lovely message from Liz, someone from BHS who is a first time message leaver so has to be approved, thanks for the power trip Liz 🙂 Karen and the lovely Rita also leave lovely comments. Rita is my angel who burns down the church in candles every Sunday for me.

I also receive a message from Dawn. I ask her for help. Calling my cancer Harry seems wrong now as he is gone, along with a 3rd of my bowel. Harry was called Harry because he was in my Cecum. That’s why it’s ‘Harry’ after Harry Seycombe, now you have to be of a certain age to know who Harry Seycombe was. It’s actually Harry’s offspring who are trying to take over my body in any organ they can get to. We decide a play on words is a good idea and now my cancer is going to be called ‘Harribabes’ after the sweets Harribos, sorted and happy with that.

Steve and Rebecca wake and I need my drug lord to leap into action as I’m not feeling so good. 6 chemo tablets later and toast for me. I try to walk up stairs to get dressed but my legs are so sore it’s a real struggle but no one see’s me so that’s okay.  I do try hard to hide the pain from them as much as I can as I see that look in their eyes. Hard to describe it really, just despair I think. Mom has called from her holiday, she has read the blog and tells me off for not being honest with her about how I’m feeling. She also was nosy enough to read the rude post from the other day, mom’s hey! I knew she would but I didn’t expect her to be reading it out loud to all her friends on holiday with her. Apologies to the ‘Scilly Six’ but she was warned.

So why is my post called ‘No prizes for me’ – It goes back to Thursday when I was working with my boss. He said “how are your kids coping with all this?” I must have looked blank “I don’t know is the real answer”. I felt awful. I worry about Steve, my mom and Richard and Rebecca of course I do. I think that because they are young they don’t really know how serious this could be. I haven’t asked them how they’re coping, how bad is that?

I picked up Rebecca from work on Thursday and we took Molly out for a walk, so I asked her how she is coping. She says that she doesn’t sleep well, she worries about me and she listens to music which makes her sad. She gets over emotional and cries when she doesn’t need to cry. She talks to people at work and her boyfriend Josh but she doesn’t talk to me. She reads my blog and of course I have written ‘warts and all’ in there, stuff that us moms would normally never share with our kids. She was upset when she read the post about what would happen if I didn’t survive, what would happen to her, as she lives with us. It was good to talk to her but I haven’t appreciated how sad and lonely she feels. She buys me flowers every week and thinks about practical ways in which to help. She has just brought me a plastic cup with a straw as I find drinking from a glass a problem. She had to cut my food for me last night at dinner. She does the ironing when my mom isn’t here and kisses me on the cheek whenever she goes out now. I asked if Richard had ever spoken to her about it? “No’ was the reply and she looked so sad but then again she admitted that she hadn’t tried to speak to him either. Why can’t we talk to each other I wonder, really talk?

So I brought Rebecca a hoody, well Steve had to go and get it, to say thank you and I’m sorry for not being the mom I should be sometimes. Here is Rebecca getting the hoody and she will kill me for posting this up, but hey that’s what mom are for, maximum embarrassment 🙂

Richard is like me in personality. I think he hides emotion away. He doesn’t live with us due to being in the Army so he doesn’t see the day to day stuff that Rebecca does. I text him everyday wherever he is, even if I don’t get a reply. Yesterday I was so consumed with it being chemo day that I forgot he was taking his motorbike test, for the 4th time as he failed the previous 3, for being an idiot as he can ride a bike. I hadn’t remembered he was taking it and when he phoned to tell me he had passed, I just felt awful that I had forgotten, sorry Richard.

So I’m not going to win any mommy awards this year for one and the other award I won’t win is ‘The Times Literary Award’. As moms away Steve has been promoted to Chief Editor. To be fair to him, he never changes what I write, he just improves it with the grammar and spelling (this can take a while). He realises that whilst I won’t win any awards for literary content, this blog has to be from my heart, and it is.

I get another message from a friend in Cyprus who says that my blog really touches her. So you maybe wrong Mr Guy after all lol. These words of encouragement from you all means so much to me, you have no idea how much, so thank you all.

Richard texted me the other day to say he was round a friends house and his wife said “I read your moms blog everyday” Another old school and football friend of his apparently reads it too. Now I think he secretly likes this.

I talked the other day about stuff I had done at work for fun. Our parody of Gangnam Style, we renamed  ‘Retail Style’ was recorded for charity to raise money for the NSPCC. Richard and Rebecca sang it and it was so funny, I actually wet myself laughing at them singing it. I was heart broken when I received a letter from Head Office to say I couldn’t put it on the internet, ever. So I can’t ever show you that to make you smile. However in October last year we did a parody of Michael Jackson’s Thriller, called Thriller Christmas. Now this was made just for fun at the time and I couldn’t ever show it as I don’t think that our previous owner would have liked it, but he sold us for £1 and therefore I’m sure he wouldn’t mind now. So I’ll attach it for you to enjoy. Plus it’s only 25 weeks and 6 days until Christmas, just saying guys!

My step daughter loved our ‘Harlem Shake’ video so I hope you all enjoy our ‘Thriller Christmas’ shared fun and memories with a great team. I have had to edit the orginal video to remove anything that may cause offence ;-). The purpose of sharing this video is that we did it just for fun and as a team building exercise.

Now I’m thinking what else can I embarrass them with ha ha. I have many more where the last two came from. So I won’t win ‘Mom of the Year’ or The Times Literary Award’ but I may win the ‘Oh god what has she posted up now award’ lol Be afraid Richard as I still have the ‘Lucky pants dance’ lol lol lol