Month: July 2015

It’s 1.20 am here as I start today’s post. My posts always seem to span two days, this sometimes confuses my mom. So it’s been a wonderful day filled with presents, friends and love. It’s been like having a birthday! Maybe that’s how the Queen feels as she has two each year. I’ve taken loads of photo’s to capture the moments in time, some of which I posted on Facebook but here are a few more for you all.

Now having taken these photos Leanne told me of the latest craze which is an app you can download. You take a photo and then you can airbrush and alter it to make yourself look better. This started as a bit of fun and this is Leanne’s attempt to make me look less wrinkled and she put some lipstick on me too.

Rebecca came home from London and upon hearing about the app, did this to me!!!

All of this reminds me of a funny photo Leanne had sent to me recently which has to go into this post.

 

So hence the title of this post, moments in time captured, a nano second reflected in one single shot that can make us all smile. When Leonard Nimoy (Dr Spock for all you non trekkies) died in February this year he wrote these last words on Twitter which I think are beautiful.

A life is like a garden. Perfect moments can be had, but not preserved, except in memory

That’s what I did today. I had perfect moments which are preserved in my memory, captured on camera and shared with you all.

After a lovely meal of beef bourguignon followed by various delicious cheesecakes, thanks to the Juddies we sat in the Chemo gazebo until the wee hours. We enjoyed a beer with Leanne and chatted away about life’s memories, being arrested and speeding fines to name but a few topics. We kept to the agreed curfew between 9-11 pm again apart from a call from Lauren (kids are exempt from the curfew). My sister in law Helen thinks 2 hours isn’t long enough for Steve and I but it’s working so far. It was lovely to talk about normal stuff. Every day stuff, fond memories. I can almost forget I am ill at times. Then when we talk about cancer it’s like I’m talking about someone else. When Chris came to see me today, he said as many people do, that I look really well. We both giggle at this as he reads my blog and he knows that I’m going to say “would you like me to look a little more gaunt like, thinner perhaps?” But I do look well and I know this. In other posts I have told you about my tummy which can take on a look through swelling of a bouncy castle. I thought I was gaining weight but apparently bloating is a known side effect of tumour in the abdomen, of bowel surgery and of chemo so I say bollocks to it and enjoy cake, LOL.

What was so lovely about tonight was that as today is my first chemo free day until Friday I can really taste how good the cheesecake is and I can enjoy a cold beer 🙂

Rebecca not knowing what the parcel actually was brought us all lovely cupcakes from London. I’m now self sufficient in cakes for about a fortnight now.

Richard seems calm now he is home, when he was in Canada he was just so angry and just wanted to be at home. Since he has returned we have all just fitted back in to our family life as if Richard is just back like any weekend.

I am slightly worried about my Facebook Messenger app as a very lovely school friend of mine whom I have been chatting to privately has sent me a message on Messenger. I say message but she could be arrested under the trades description act as it’s more like war and peace. I copied and saved her words so that I could delete it. No luck, I turned my phone on and off, no luck. I was unable to use this app all day apart from on my laptop but it’s working now since she deleted the message from her end.

My weekend is just perfect so far and tomorrow my cousin Nicky, her husband Karl and my Aunty Shelia (my dad’s sister) are coming to see me.

Went to bed at 2.30 and I’m awake again at 6.10! and it’s bloody raining, I had visions of us spending the day in the garden, in the sunshine eating cheesecake but no apparently it’s going to rain all day. I just don’t care as I’m really looking forward to today. The lump in my throat that makes you feel sick on chemo is almost gone. I had 3 cold beers last night and I can taste everything so no rain is going to spoil my day.

I check Facebook on my laptop to see who is up, Rita is not online yet so she must be having a lie in. Come on Rita get to church!!

Now my Aunty Shelia, cousin Nicky and husband Karl are on their way down for lunch, due to arrive at 1 o’clock. As I only had 4 hours sleep last night I plan a quick nap at 10.30 so that I can enjoy the day. I must have been too excited as I was awake again at 11.15. I’m so glad that Nicky asked if they could come down to see me following my post/announcement about being  stage 4. We had a lovely lunch followed by the decadent cheesecakes, courtesy of the Juddys yesterday. We spent hours just talking, laughing and remembering fun times. Again I think of my ‘Meaning of life‘ post, that what makes me complete are people, family and friends. Thanks so much for coming but it was sad seeing you go. So as promised here are the now famous ‘chemo gazebo’ precious moments.

 

Now the other news of the day is a very special girl to me Jordan raised £200 doing her ‘Race for Life’ today with my name on her back. Anne who I have got to know via my blog was also doing the ‘Race for Life’. Thanks to you both as it’s people like you who make a difference to the future of cancer sufferers, treatments and research. Together we can find a cure.

Final other news is that my BHS Kingston family were having their party in the park today. I had hoped they had a great time as I miss them all everyday and I hope it didn’t rain for them.

Rita confirmed candles and prayers had been completed for Karen and I this morning, cheers Rita. Now Rita this post is short in terms of words but it makes up for it in photos, I hope you agree.

I’ve had such a special weekend. I am so blessed. There is however a serious side to life which I will share with you all tomorrow.

Now bear with me as I’ve moved on from the vegetable patch to the ambient store of life. This will all make sense I promise. It’s late here and everyone is in bed, which is when I sit and plan tomorrow’s post. Now last night I stayed up to do yesterday’s post and spent two hours on it, but alas I didn’t save it so lucky for you lot as it would have been very long indeed.

So the title of this post is due to a strong memory of just after my operation. I was unable to do most things and excuse the pun but i was a bit of a vegetable. My mom and Steve had been to do the weekly food shopping, returning with the weekly bags of food they set about putting it all away. I was as ever at that time just sat in the kitchen by the window with just my bird table to look at. Too weak to stand for long and unable to lift anything heavier than a teaspoon.

As the shopping went away Steve asked me where I kept the suet. I had decided that treacle suet pudding was going to be pudding on Sunday this week, none of your treacle sponge shit, I love the real thing. Suet is the only way to do this pudding Oh and it has to be accompanied with Birds custard too yum yum.

Anyway I told him where I kept it and it was at that moment that I had what you would call an out of body experience. I looked at the two of them putting things away and wondered what it would be like if I wasn’t here. Now remember that we didn’t even have the results of the operation at this time and my feelings were all over the place. I was pleased Harry was gone but I also feared what was now going to happen in terms of treatment. I was hoping at this stage that I maybe a stage 2 and no chemo would be required.

Anyway my point is that the suet lives in the double cupboard on the top shelf, right hand side. Food in the right hand side and the treat cupboard, now nicknamed the condom cupboard is on the left hand side. This now has to be renamed or just revert back to just the treat cupboard as the condoms finally made it upstairs(!) Anyway my point here is that it belongs there because that’s where I keep it. All of the cupboards are stocked with food which I have placed there because it’s my kitchen. What would happen if I wasn’t there to tell Steve where the suet lives? it might end up anywhere, misfiled in my kitchen. I hope you get my point now.

The whole suet thing that day made me think about dying and how would they all cope, what would happen to the suet? It was later on that same day that whilst diner was being prepared and I continued to sit divorced from the whole process that a song came on that I really like called ‘Young Blood.’ Now this song used to be played at work through the BHS radio and I used to sing along with it. As background music I wasn’t aware of the lyrics but loved the tune. So I’m sat looking at my loved ones busy working away and I start to cry. Rebecca comes straight over and gives me a cuddle. She didn’t know what made me cry that day as at that time we still had hope, but the thought of my loved ones going on without me was just breaking my heart.

After typing this and saving it, I decide to go to bed. I stood up and started to gag, saliva rushed into my mouth, oh no I can’t be sick, no! I stood for a while until it passed enough for me to move. I got into bed, Steve was still awake (bad sign if Steve can’t sleep). He came to cuddle me in a loving way but I had to stop him as I didn’t want to move and I really didn’t want to be sick. Yet again cancer stops us being together in whatever way it can. Bloody Harry!

I wake before anyone else, coffee, 1/2 biscuit and a fag later I check Facebook. Now I remember the other day someone posting a warning up about hackers sending posts out of a very sexual nature and that you are tagged in them. This morning I have seen 4 of these of my friends who I know would not be having lesbian sex. Well at least if the hackers do this to me you will all just know I’ve been scammed hey, LOL. Talking of sex, I spoke to Mr Grey yesterday and I have told him that we are going to write a sex manual and it will be called ’50 shades of Chemo’ to help people with real practical help. I have read the Macmillan booklet as promised on sex and cancer, whilst it is very information on a practical level, it offers no solutions on the restrictions of being radioactive. Mr Grey just laughs at me but I’m going to make him come round one evening, with a bottle of wine and do it. How could he refuse? I’ll play the cancer card if I have to, I won’t be able say no then haha.

Rebecca has gone into London for the day but says that we have to stay in for a parcel which is being delivered for her. The door bell goes and I’m given a massive box. In the big box was two smaller boxes. One full of 12 mini cheesecakes and one hugh Strawberries and Cream Cheesecake from the English Cheesecake Company, wow! So cousin Nicky and Aunty Shelia we will try to save some for you tomorrow. Now I know some of you will have seen my post on Facebook but for those of you who only read my blog this is what arrived and my comments to my very dear friends ‘The Juddys.’

FACEBOOK POST – OMG! I am so blessed. Rebecca told me last night that a parcel was going to be delivered for her and that it needed to be signed for. The door just went and OMG these were delivered.
My mom was moved to tears and Steve is checking the defrost times LOL. Thank you so much the Juddy family. I’m right as if love could kill cancer I’d be cured. thank you so much xxx

Then as arranged by ex boss came to see me which was very special for me. We don’t always like our bosses but Chris has a heart of gold and was great to work for. It was lovely to have him in our home, to sit and chat about everything from cancer to work to cats etc. I just love sharing moments with people now. Here is Chris, Sean and I in the chemo gazebo, now there’s fame for you. Beat that Mr Grey and Mr Vines! He also brought me a lovely ‘hugs mug’ I’ll have to get everyone round one day who is a regular feature in the blog for a photo shoot! Thank you Chris for my gift, card and more importantly for coming and sharing the morning with me.

Then after posting up the cakes photo, Leanne BFF (Best Friend Forever) said she was jealous of the cakes so I invited her round for tea, which she agreed to, so my day is just getting better and better. I’m so blessed and happy 🙂 Leanne has turned up for tea. I think the Cheesecakes tempted her not my company and she has also brought me a bottle of vodka and a box of beer 🙂 lucky me today 🙂

 

 

Following on in the vegetable theme from yesterday I do feel such a fool. I have had so many of you saying that you knew that when Dr Weaver told me the bowel cancer was in the lymph nodes in my neck that this wasn’t good news, that the cancer had spread and metastesised (spread). I honestly thought that it was no different to what Mr Mullerat had told me that he had to leave cancerous lymph nodes behind after the operation as they were supplying blood to vital organs and they couldn’t be removed. So in my mind I just thought that this was no different, that just another lymph node was effected.

I also just thought that the swelling of the lymph nodes in my neck was swelling and not a tumour, don’t I feel like a tit now! Steve was also shocked and this is surprising as he normally knows everything but like me when he researched it we didn’t find the right information and just gave up, I was on chemo anyway so we stopped googling.

On a positive note since that meeting Steve and I have not had the worries of it being stage 4 and we still had hope of remission in November once chemo had finished and then just annual tests. Now what is important now is that Steve, Rebecca, Richard and my mom live as normal a life as possible and we all have to stop cancer taking over our lives. We have been through so much in 6 months that it’s hard to think sometimes that 6 months ago I didn’t know I even had cancer, I had started with the occasional stomach ache but here I am 6 months later at stage 4, now that’s one hell of a fast growing aggressive Harry.

Cancer has taken over our lives for too long now. Constant talking, worrying, tests, results and hoping for good news all the time that seems to never come. So it’s just my tits (as the mammogram showed no signs of cancer) and feet that are okay. It has to now stop being the only topic of conversation. Steve gets frustrated as I tell him the latest news when he returns from work, he then has to edit my post, which means he then reads about my day and then he hears the same story repeated to friends and family that call throughout the evening. Well I’m going to take back control! For him, for Rebecca for our sanity and between 9-11 pm I’m not going online to answer messages or on my phone unless it’s urgent, so that we can have a cancer free zone. Steve longs for normal: normal life, normal chats that we used to have, we all miss normal.

So now an update on the last 24 hrs! I feel like I’m in a James Bond movie. I have to call the Army Welfare number to get Richard home. They said that I have to call the JCCC (Joint Casualty Compassionate Cell) department, which I did. They have to call my oncologist to check that what I have told him is true and that I’m not lying. Now what mother would do that to her child but they have to check. I was also secretly hoping that my oncologist would say “no no no she got it wrong, no cancer there” but he obviously didn’t because Richard is now classed as a Class B (I assume that Class A is dead and we are not there yet) Richard has to go in front of the Major to get his orders for leaving Canada. How exciting is all that? I never thought that the British Army would be talking to my oncologist!

I go into work and as I spoke to Guy the other day I told him to tell Amanda from HR for me. She calls me and as normal we have a lovely chat on the phone. I can’t believe how wonderful my work have been in supporting me. I go for a coffee with Mary in the staff room. Now I’ve decided I’m moving into High Wycombe so I have brought in my mug from home (not the rude one) but one that Linda gave me one year for Christmas. On the front it say ‘Her Ladyship’. In my pre cancer Kingston life everyday at 4.30 that was coffee time for me with Linda. It was the only time I could get her to stop working for 1/2 hour. We both always looked forward to our chats, just two friends discussing life, having a moan and always talking about work.

I return to the office and check my phone as I’m waiting to hear from Richard. As my phones lights up I see a text has come in from OMG Mr Bottom, only the CEO himself (he is obviously not called Mr Bottom (a reversey percy there) but I have to protect the innocent) it was so lovely to receive that text. That he had thought of me during his busy day. I returned home and then Amanda called me again. She wants to take me out for lunch with the HR Director next week, we will have to call her Mrs HRH. All these pseudonyms are making me laugh. Mr Grey, Mr Grump Bum and Mr Vines will all be jealous, and I bet Amanda is glad she said I could use her real name now! So it’s not all bad is it? I get so much love and support everyday from you all, I’m going to London for lunch next week, and my son is coming home :-)))). Steve says if love could kill cancer, I would be cancer free by now.

The Power of You – what can I say. Thank you to everyone who read my plea to support my family. When Steve arrived at work yesterday he was taken out for a fag/chat with Bryn and Liz, he really appreciated that, thank you. Steve has now changed his reply to the question “how are you” from ‘I’m fine’ to ‘it’s all shit’ now for an articulate man his use of the word just shit is unusual for him but it’s the only word he uses for it. He then spends most of the next hour answering text messages from Leanne and giggling privately as I’m not allowed to see his messages from his new friend. I normally get 300 – 400 hits a day on my site but because of you all sharing my blog it’s gone up to 980! wow and it’s been seen in 18 countries. Please keep sharing as the messages I am getting are from people who have lost people to cancer and by reading my ramblings they remember their journeys which allows them to feel grief again, not that grief ever really goes away we just learn how to cope everyday.

I also need to thank Rachael and Sian who work with Rebecca as again because they take the trouble to read my blog they know what Rebecca is going through at home, they cried with Rebecca and I know she appreciates the support.

So it’s now today, Richard flew into Heathrow at 9.30 and we thought he would have to go back to base but they brought him straight home 🙂 In a panic that he was coming straight here I jumped into the shower, I ended up using moisturising body cream as hair conditioner by mistake and now my hair is like straw. We sit in the chemo gazebo chatting, now one of the annoying bloody side effects of chemo is that you just get a wave of tiredness that you can’t control. My poor boy had endured a 14 hour journey and within an hour of him being home, I’m asleep, sorry Richard.

I was woken by a text that I couldn’t ignore. It’s Ant and he is just letting me know that he has been to the churchyard and removed the flowers as they looked sad. I replied about mom being on holiday and had he heard my news? He called my phone straight away. He hadn’t seen my daily posts, he didn’t know I had cancer, he has been on my mind for weeks as I didn’t know if he knew. We talked about it and then talked about Julie. For the first time in a very long time we cried together for the loss of her, the grief still there in both of us as raw as ever. I was so pleased to speak to him, to cry with him.

Richard, mom and I took Molly over to her favourite park, we sat in the shade of a tree and I explained the best way I could about stage 4 and what that meant. The best way I could explain it is aliking it to the game ‘Whackamole’ I hope you have played this game, funny as. So we are just going to play ‘WhackaHarry’ for however long and hope that we can keep it out of my vital organs.

Everyone asks how I feel. The answer is calm actually. This may seem odd but throughout this journey my family and I have clung onto hope, once that hope has been removed so then is the anxiety. At least I won’t have to put up with people saying ‘Oh you’ll be alright, your young and strong, you can fight this’ and and my all time favourite, ‘be positive.’ A comment of ‘that’s shit that is’ is fine by me. And at least I still have my sense of humour haha.

The other news from today is that I was going to meet up with Karen for a treat and as Richard wasn’t due until this afternoon so I had kept that date. I was cleaning Richards room when she called to say she had been back at the doctors as due to the diarrhea she was just so low and tired. I told her not to worry about meeting up and to just rest. Poor Karen, again. She so needs a break, she needs to feel well again and she definitely needs to stop having the runs, oh her poor bum.

That’s it your up to date. Curfew is 9-11pm

Oh and my mom is back as editor so any mistakes, blame her 🙂 Oh and Rita she hasn’t mentioned the length of this post so I think she is scared of you haha.

 

 

 

Yesterday I didn’t know if I was going to be able to post up my news about being stage 4 and all the extra details of ‘The Return of Harry’ I had to tell Richard and my mom first but I hated lying to you all on here. So I prepared two posts for yesterday just in case. Steve whilst editing my main post he also read this one and said that it was good and that I should put it up as it gives people an insight into me, so here it is for you……

Yes Onions! Peel back a layer and you will find another layer and another and another keep going until you find the centre, your centre.

On this journey of mine through cancer I have discovered and understand more about myself now then I ever thought I would. Not just about me but of the people around me, let me explain….

If you have read my post about my sister and her death then you will recall me saying that the feeling of never being enough haunted me and still does. In terms of not being able to make up for her not being there. Inside I have a deep need to fix people, that’s why I’m dangerous in that I think or want to fix people, their problems, their fears and worries. If I hear of someone suffering I think about it deeply and I want to fix them or help in whatever way I can.  I also fear failure (we all do) but not failure in achieving material things, failing people, not being good enough. And I hate criticism, not because I can’t take it but because it means I have failed or hurt someone, or that’s how I see it.

I look back at some of my extreme behaviours and I know it’s me over compensating. A good example is that when in an environment of new people who don’t know me, and as I can’t cope with awkward silences, I feel I have to speak. Now this normally leads to me saying anything that pops into my head and normally without my brain centre checking it first.

Now in a work environment I am marmite (love me or hate me, there is no middle ground) I’ve been thinking about Jo a lot lately, who when I first met her was the store manager of Worthing. Now she only ever saw me at meetings, a few hours of work based interaction or would hear me on a conference call.  So I would have come across as a strong, self opinionated woman, too mouthy and with always having something to say. I could often see in her as I often did in others faces the ‘oh for God’s sake shut up’ look. Now over time the layers have come away little by little with Jo and others as they get to see or just accept who I am at work (you know I’m right Jo). Mr Grey and Mr Vines would both agree as would may more people that, I’m a pain. On conference calls at work where you can’t see anyone else, when as a team we were asked at the end ‘Any questions?’ Even though I can’t see them all I can imagine their faces when it comes to my turn and everyone else has replied no and I always say, “yes I have a list.” They all put their heads in their hands and go ‘oh no here we go, shut up Wendy!’ It makes me smile as I type this as my work colleagues who read this will either be laughing at memories of those calls. Or like Jo will be thinking omg you saw my fustration with you, yes I did. Each time I did it hurt me cos I didn’t show you or others the real me. Now I didn’t have a photo of Jo and I together so I went on her facebook and stole this photo, I think it best describes how Jo and others would look when she is thinking “has she finished yet” or ‘did she just say that’.

I went on a management course with M&S entitled ‘Self image and projection.’ I came away horrified and really upset. Once home I shared my day with Steve. The feedback amongst other words were that I was intimidating. When I told this to Steve he just looked at me with a puzzled shocked look on his face, laughed and said “didn’t you know this?” No I didn’t was the honest truth. I saw me, a person who wasn’t confident at all but I knew I over compensated by being too loud and appearing confident as didn’t ever want to fail and I didn’t want people to see the real me.

I have never been an office manager, I have to be with the people that count, the team. I resent work that takes me away from that. I need to feel needed whether that’s helping a customer or training a 16 year old how to fold a t-shirt and put it into a bag properly. My self projection problem is that as I’m tall anyway and with 4 inch heels on I’m even taller than most people plus I used to walk at a speed that was Zola Bud would envy. Why so fast? I have no idea.

Our lives and experiences of it define who we are today, in the here and now but also in the tomorrows to come. I know that I had become a perfectionist and a fixer. I couldn’t fix my mom and dad’s grief but I wanted to so much. This translated into wanting to fix people. My search for everything being perfect comes from the same obsession, that anything I do has to be the best it can be.

My nickname, given to me by our four kids is ‘clean freak’ they just saw my need for everything to be clean and tidy. What I was actually doing was satisfying my need to make it as perfect a home as I could for them as I loved them so much.

I thought that being on chemo would make me even worse with hygiene and everything being perfect. Prior to chemo starting I had a mega rant at home at everyone because someone had emptied the bin, changed the bag but left the rubbish bag on the kitchen floor. The day continued and everyone walked past the bag and no one thought to put it outside (that would normally be me you see, doing everything). I ranted on about hygiene and that once on chemo everything had to be perfectly clean because of germs and my suppressed  immune system. Turns out I have swung the other way. I’m more relaxed now then I’ve ever been about everything. One because of the risk of harm only affects me, and that doesn’t matter anymore. Secondly no one is going to die if my home isn’t perfect, no one will say “I went to see Wendy, she looked well but my god her windows needed cleaning!” And now even if they did say that, I wouldn’t care anyway and why? Clean windows are not important anymore. When Steve checks this post before I hit the publish button he will say “what are you going on about we have a window cleaner?” But I hope you get my point. My mom, Rebecca and Steve find this new relaxed approach to things very odd indeed whenever I say ‘leave it as it doesn’t matter, we can do it tomorrow.

Sometimes I read earlier posts that I have written. The ‘Sorry and I buy a bird table’ post really is a great example of how I felt I had failed by getting cancer and how alone I felt as I wasn’t part of being with people everyday, I wasn’t needed. I sat day after day watching the clock tick by. If I had picked up the phone at that time to any one of my friends and family and said “I need help” they would be shocked I’d asked for help first and then any one of them would have loved it that I had reached out to them and asked. But I didn’t and why? Because I didn’t want to give them that burden of failure, of not being able to fix me.

I think this is one of Steve’s main problem at that moment, he can’t fix me. He can’t make it right, he is powerless on this journey as we all are.

Now I’m no saint and there are some people that drive me insane. Through the years I have accepted that I’m intimidating and I use this to my advantage at times, when it’s needed. The people that drive me insane are actually simply the ones that are selfish. I think that being selfish is the worst human trait of all. The me, me, me people who’s only goal is to get their own way, to only see their point of view and manipulate situations to their selfish advantage. Now that’s actual failure right there. They may think that they are winning cos they can get their own way but they don’t understand or get anything about what’s important about life and this makes them empty and shallow.

At work I will often say that I am no different to anyone else, no more special just because I’m the boss of many – or used to be :-(. I am no better than the cleaner. I actually think that serving people is an honour, not a chore to be endured. There are some people who don’t deserve being treated with respect but none of us are perfect hey, they just haven’t discovered their meaning of life yet. They are running too fast on the hamster wheel of life and they are blind to what life is really all about.

That was the post that was going to go up yesterday.  I can’t thank you all enough, not just for the pouring in of love from you all but to those of you who contacted my loved ones to support them.

I will continue with my blog so that you are all part of this journey. I will continue to write whatever length I like, thanks for the feedback on length, I’ll be letting my mom see your comments haha and if she disagrees I will set Rita on her lol.

Now I know why I started this blog, was it that I knew it was going to be serious. Am I leaving a trail of love for the people who love me? I think maybe I am. Whatever the future holds for us all my thoughts, the journeys high and lows are here for them to read at anytime and be comforted by how much I love them.

 

 

 

Since Monday 6th July I have been lying to you all and I’m so sorry. My posts have had to be full of anything but what’s been really happening in my life, let me explain. This post is going to be a long one so get yourself a drink……..

On Monday the plan was to go to the vets and then go into Wycombe to work. Vets done I’m back at home for 9 am. I think about the charity I had found (Beating Bowel Cancer) on Saturday and decided to call them. I had a lovely chat with the receptionist about the fund raising event I had been too. I talked about my blog and that I wanted to help people. She listened and at the end she asked how I was and did I have any questions about my cancer. I replied as ever that I was fine and yes actually I did have a question. I didn’t understand the lymph node thing, that cancer cells that were in my neck and gut. That Steve and I had both looked this up on line without any success of finding anything other than medical articles from surgeons or oncologists. These were always full of big medical words and were so long we both gave up reading them. Steve and I concluded that as I was on chemo so it didn’t matter and just coping and getting through the treatment was the game we were playing for now. You can find loads of information out about cancer spreading or metastases to other organs but not in the lymph nodes. The receptionist said to hold on and then put me through to Holly.

I repeated my question again, she listened to my story and told me to look at 3 leaflets available online on the website. I was happy that I’d called and thanked her for her time. I opened the first of the leaflets. It was talking about coping with advanced cancer and palliative care. I was really confused now. I texted Steve and asked him to call me when he was on a fag break. He called me and I told him about he call, “no no no Wendy you have got it wrong, you must have explained it wrong or misheard what she said, send me the link to what you are reading.” Steve had to go back to work so I forwarded the link to him. Now I’m really confused so I decided to send an email to the nursing team at the charity so that if it is in writing I can’t get it wrong. Also I didn’t want to trouble them too much, so I sent this email:

Hello,
I spoke to Holly earlier and discussed my case and my concerns, in that my bowel cancer is now in my lymph nodes. Both in my neck and gut. I have read the information leaflets she advised but I am still a little confused and I hope you can help.
The lymph nodes in my neck following a biopsy have been confirmed as bowel cancer. Does this mean that my cancer has metastases?
Is there just cancerous cells in the lymph nodes or is it an actual tumour growing as the nodes are getting bigger?
Does this mean (depending on those answers) that I am now at stage 4?

There is a lot of information on metastases cancers in organs but not about the lymph nodes, it’s all so confusing.
I know that you don’t have access to my medical file and therefore I understand any advice given is general but please can you help me?

Sorry to trouble you again and confused,

Wendy Guy

I pressed send and an automated reply came through that they would respond within 4 days. Then my phone rang, it’s Steve “I’m on my way home” why I asked “because you are right: it’s now stage 4 and I’m not leaving you on your own, I’m on my way”. Whilst Steve was on his way home I received this email from Holly.

Hello Wendy.

It was good to speak to you earlier, I hope you have had time to look at the links I advised and take some time to digest all the information found within them. There is a lot to take on board.

Cancer that has spread to other areas of the body is often known as Stage 3 or 4. Nearby lymph nodes to the bowel would be described as Stage 3 definitely but I think as the lymph nodes in your neck are some distance away you will need to discuss this in further detail with your consultant to be accurately staged. Staging in done using a combinations of things, such as scans and blood results to help build up a picture disease progression.

Here is a little more information on this type of spread. It talks about secondaries in the lymph nodes and metastases.

http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Lymphnodessecondary/Secondarycancerlymphnodes.aspx

At this point I would suggest (with the information you have given us) that this swelling indicates cancer cells are present in the lymph nodes, causing the inflammation and swelling, but questions about cancer growing in the lymph nodes are best placed with your consultant, as only he/she would have access to this information, from related scans.

I hope the link above answers some of your other questions.

Best wishes,

Many kind regards
Holly Rolfe

I had been texting Karen whilst this was going on as she was due to see Dr Weaver today. I told her that I had just discovered I’m stage 4 and her reply was ‘Oh fuck, do you want me to call?’ I called her as my head was all over the place. We had a brief chat, thanks for being there my chemo bud. I texted Mary at High  Wycombe who thought I was going into the store today to say I wouldn’t be in and I waited for Steve to come home.

Steve had read the leaflet and also followed the link. He said that stage 4 had two stages, stage 4a and 4b. there are no more stages to cancer. What the bloody hell did all this mean? Has the chance of remission been taken away from me? My head was all over the place and more importantly ‘oh my god my poor mom, she is on holiday and when she returns I have to break her heart again.’ Richard has just flown to Canada, how am I going to tell him?

The post on that Monday was all true apart from the above was all left out. On Tuesday again I did go into Staines, all true but when I mentioned the text from Alison, I cried because I knew she was telling Emma and Linda. I did go to lunch with Leanne but again I had to tell her the truth. We sat and cried over lunch and Leanne gave me a big hug. I also had to call my best mate and tell her as I was unable to the previous night due to Ian coming round. Nicky already knew as she had spoken to her cancer nurse mate Mandy but didn’t know how or when to tell me. My walk with Rebecca and Molly on Monday was when I had to tell Rebecca, my poor daughter.

I messaged Dawn, Lauren’s mom on the Tuesday morning but Lauren saw it and thought I was going to talk about girlie stuff we had shared and she was upset with me. Poor Dawn had to sit Lauren and Chris down that night and tell them, thanks Dawn for doing this for me, for them. My mom calls from her holiday every morning and evening. I had to pretend everything was fine knowing that it wasn’t, sorry mom.

So we decided the best course of action was to call Dr Weaver. I just needed the answers to my questions. I called him at 9.10 on Tuesday morning, I was told he would call me back but he didn’t.

This morning at 9 o’clock on the dot I phone Dr Weaver. His secretary says that he did try to phone me yesterday but the land line just rang out but she would put me straight through. I had already prepared a list of questions this time so armed with my list and a pen, I went through the following list:

1 – Am I now at stage 4?  – Two scales are used to grade cancer and yes if you use the simple scale of 1-4, I’m now at stage 4

2 – Are the swollen lymph nodes in my neck just full of cancer cells or is it actually a tumour? – Yes and also there are tumours on my front and back of my abdominal wall plus broken through the perennial wall ( I don’t know what this is)

3 – Like my bowel cancer broke through the bowel wall, will the lymph nodes get so big that they will burst? – No

4 – Has this effected my prognosis? – Yes it’s reduced due to the spreading. I wasn’t ready to ask the question of how long I had got left.

5 – Is the pain in my tummy due to cancer, bowel surgery or chemo? Probably chemo.

I thanked Dr Weaver for his time and ended the call. Steve and I chatted over a coffee and a fag for about 1/2 hour. I cleared away the breakfast things, swept and mopped the floor. Steve said that I should go into work as there was no point in me sitting here all day with it going around my mind. I called Louise to help me out with how to contact Richard. I got changed and after another fag together I went to work. I think that Steve just wanted me out of the way, maybe he needed to be alone. I have been asking him for weeks to consider writing something for my blog and out of the blue he said “maybe it’s time I wrote a post for you about how this shit feels.” Wow, okay so no promises but he may just appear on here as he has all my log in details, well he set it up for me after all, my Mr Wonderful.

At work, thankfully Mary was there as it would have been awful without her, thanks Mary. I type a text to those who knew what was going on, Leanne, chemo bud Karen, Nicky, Dawn, Emma and Alison. I copied and pasted the message and hit send as I had promised them that I’d tell them as soon as I knew anything. I am so sorry to you all as I never thought about where you would be when you got my text, I just knew that I had to tell you all. I couldn’t break that promise, your hearts yes, but not my promise to you. At work and Guy (my boss) calls me, he was in Kingston when I sent the text into Emma. I talked him through what I found out 4 hours earlier, he was lovely and said that he just wanted to give me a hug. That started the tears, sorry Guy again, I always seem to cry on you.

Earlier I had sent Richard a message to contact me urgently, whilst on the phone to Leanne, Richard’s call came in. Yet again I had to tell my son bad news over the phone, this time however he wasn’t a few hours drive away he was a 10 hour flight away in Canada. He listened and told me to contact Parker to get the welfare number to call them. Thanks for your help today Parker. The Army are flying Richard back from Canada tomorrow.

As all this is going on my thoughts continually go back to my poor mom, returning from her holiday with no idea of the phone call I’m going to have to have with her. My poor mom, I think she has been through enough, I worry about that call tonight.

So that was my day in the wonderful world of cancer, how was yours? Lol. I told Leanne that at least I still had my health, she laughed as normal and said that I needed to change my usual saying to at least I’ve still got my sense of humour, now I laughed.

So if you are reading this then I’ve told my mom. Just like my first ever post on Facebook where I announced that I had cancer, it’s not about me, it never has been. If you know my children, my mom or my husband please help them through this journey with me. We are only alone if no one asks how we are, offers a friendly ear or a shoulder to cry on. They are my world and I love them with all my heart. I can’t cope with their pain and suffering so I need you all to help me, to help them to feel loved.

 

 

 

My mom has complained that my posts are getting too long! so today there will be two revisions, one short for my mom, the slower readers of you out there or the one’s of you out there in a hurry today.  The second will be a more detailed account of a day in my life, the life of cancer/chemo.

The short version – woke up, ate, took chemo tablets, took dog to vets which cost £70, back home, feel shit, tried to do some work, ate tea, Ian popped round for a beer and then I went to bed! All true but lacks substance I think.

Okay mom you don’t have to read any further!

My day in full – The above is all true but with more detail it went like this. Steve had gone into the office to work today however after talking to me on his morning fag break and sensing how low I was he decided that I shouldn’t be on my own and came home, bless him. I tried to do some project work ahead of a meeting I have planned for Tuesday. In the late afternoon, Rebecca and I took Molly out for her daily walk. It was lovely to walk and talk with her, just sharing stuff, moments.  I had an hour’s conversation on the phone with my very own Mary Poppins (Alison from BHS in Kingston) Rebecca and I cooked another meal from the Hairy Bikers cookbook, a creation of chicken and tarragon, Steve played the music for us. Molly’s eye is responding to the treatment, which is good as it cost £70.03!  Otherwise I would be definitely complaining!

Tea was a success and we relax with a coffee in our chemo gazebo. Now Steve’s new plan is that instead of taking chemo tablets within 1/2 of food he wants me to take them straight after eating as he has read that this may help with the dizzy feelings I am getting at the moment, on top of all the other side effects. I manage to put taking them off until after coffee, so chillax time it is :-).  And then the door bell goes, it’s Ian, a dear friend who calls round on a regular basis. The one, if you remember during the recent election thought me not going bald through chemo could loose us vital sympathy votes. The one who made me walk, in pain, up a hill for a photo opportunity the day after I was told it was cancer! Now before you think Ian is a terrible person, he isn’t. He has a great dry sense of humour, he is a valued dear friend and over the years of sharing life’s moments together he feels like part of our family.

Our house this evening has turned into a medical centre, so after coffee, I have to take my chemo tablets, the dog has to have her eye cleaned and drops administered plus an injection of painkillers into her mouth. Rebecca has earache so I have to give her drops into the ear! And where is my other nurse? nurse Judy? Sunning herself on ‘buffer face island’, enjoying herself, how rude!

We all sit in the chemo gazebo eating apricot cheesecake with cream accompanied with my all important second cup of coffee. Steve and Ian discuss the Greek crisis and the effects on the global economy, heavy stuff. So I ask Ian about my blog, tell him of my mom’s complaint and does he think they are too long. His answer is that he reads them on the loo and sometimes his bum goes cold, funny as! I think of another friend who I met through work, Mr Grumpy Bum. Now he always kept a book in the loo at work and this made me chuckle, how many people read my blog sitting on the loo I think? I know some of you read it with cups of tea and a biscuit, some with a glass of wine and some of you read it on your daily commute to work but it seems my male readers are reading it whilst on the loo, quite fitting I suppose.

Anyway we quickly turn to the sexy bits of the blog, Rebecca has joined us and we all tease Steve, until he his hiding his face under his fleece with embarrassment of sharing that part of our relationship with not just friends but the world wide web . Rebecca has not mentioned the sex bit of the blog at all and like Lauren I wondered if she was embarrassed to read it. We spent the next 1/2 hour planning when she was out this week so that Steve and I could be alone and also to plan when Ian couldn’t come round LOL, so Tuesday and Thursday it is then, poor Steve or happy Steve as the case maybe as at least now we have a plan 🙂

Throughout the evening whilst we were having fun and laughter which was a relief and very welcomed after feeling low today I started to receive texts from Lauren. Now one of the helpful Macmillan books did say that it’s very common for people dealing with cancer and their loved ones is that they are not always at the same place emotionally at the same time and this can cause problems. Very very very true. So we are all having a laugh but Lauren’s texts are sad, full of worry and although I try to cheer her up to lift her mood, nothing is working. I try empathy, I try being positive and I even try humour. So to one text I reply “it’s not all bad Lauren, I had great sex with your dad this week” not even that worked, now I’m worried.

These texts continue over about an hour. In the end I stop Steve and Ian’s global economic debate and tell Steve that I’m really worried about Lauren. We discussed the texts and then out of the blue Ian says “haven’t you got an emergency cute kitten you can send her?” Priceless and in fits of laughter we search, select and send an ’emergency cute kitten’  picture, no reply from Lauren, so we send another but this time it’s cute and funny. After a few minutes she replies “your crazy! haha.” Thank God for emergency cute kittens is what I say. Here are ours.

 

 

Here is Ian in the now famous chemo gazebo.

So I need your help, are my posts too long????? Please let me know as I don’t want to bore you all.

After a lovely evening, 3 beers and only having 3 1/2 hours sleep I go to bed at 12.30 and I sleep until 5.30 🙂 Peace and sleep at last.

Awake, Molly’s eye seems much better and I’m looking forward to my meeting as Leanne is working in Staines today, that’s a funny coincidence don’t you think 🙂

As I drive towards the motorway I get a text from Alison to say she is at work with Emma and Linda. Just the thought of them makes me cry all the way into Staines. I’ve been better on the crying front for a while but thinking of them, my old life, my team, my friends, sharing in their lives just always makes me cry.

At Staines everyone knew I was coming (I wonder how Leanne?) and I had a wonderful welcome from everyone. So lovely to see Teresa, Carolyn, Monica, Michelle and Adam. They all read and love my blog and were pleased that I’d had some married life action ;-). I’m so sorry that I didn’t come to say goodbye but I was getting too tired and got rumbled as Guy (my boss) turned up and I’m not really allowed in stores further away than High Wycombe but I needed Adam’s help with my project work. Now Adam is jealous of Steve or Mr Grey as he is known to you guys. He also wants a feature and his own pseudonym and he won’t agree to help me until I honour his request (he didn’t really say that) anyway so Adam is now Mr Vines to you. He is called Mr Vines because of his awful taste in wine. He thought it would be funny to buy me 3 bottles of the shit to cheer me up when I first found out I had cancer, cheers Adam and here is the sexy beast himself

Leanne and I had lunch, lovely to catch up as I’d missed not seeing her a few weeks ago. She made me laugh as one of her friends who reads my blog thought that the chemo gazebo was where I actually had the treatment pumped into me and not in a hospital. The gazebo just has that nickname as I lie in it all day and most of the night, glad I cleared that up, but it is funny.

Chemo bud Karen update – she appreciates all your thoughts and good wishes. She had her meeting today with Dr Weaver, she is going to start a new regime for 3 days every 2 weeks. So we all wish you well and Rita will be doing her bit for you in church on Sunday, cheers Rita x

Well I can’t ramble on, well I could but Rebecca has gone out to watch a film 😉 do not disturb sign is now up for a few hours lol lol ……………

 

The rest of my Sunday goes as planned. Walking Molly and Roast Chicken followed by cheesecake, lovely. Chemo tablets taken and I sit to relax in the chemo gazebo. Within the following 20 minutes of taking the tablets I just feel so flat. It’s the only way to describe the wave of tiredness that can come from nowhere. I’ve been feeling dizzy on and off all day but it’s all perfectly normal. I just have to lie still and try to rest but I must take on a look of complete blankness. I do drift in and out of sleep but I also lie there starring at the sky thinking how loved and happy I am and that I don’t want to leave this world, my life, that I enjoy and love. I feel so sad sometimes inside, I love humour and laughing at the shit poker hand life has decided to deal to me but anyone will tell you there is a sad side that comes into your mind/soul/heart that scares you so much, the fear of not being part of this world.

My stomach cramps are painful as I’ve now gone from not being able to stop going to not going at all. My stomach has taken on the bouncy castle look again and more worryingly the pain from my swollen lymph nodes is getting me down. I used to actually feel them everyday hoping that they would go down but I haven’t for weeks now as I know they are getting bigger, they ache and I now seem to trap them in certain positions. Lying down can also make them ache more. Bloody Harribabes! They need to start die soon, or piss off as Alison said in her rant, for I fear the consequences.

Before the wave of tiredness I received a text from Lauren “errr did you have sex with my dad yesterday” OMG what have I done, had I gone to far this time? But no, Lauren thought it was lovely that us old farts still did it (well she didn’t actually say that) but bless her, ‘many a good tune played on an old fiddle’ as they say! My usual blog fans send messages of fun about my post and that they enjoyed it, thanks guys for the feedback and the shares. But during my low evening I missed a call from Linda from work and various other messages. It also turned out to be too late to watch the film 🙁 maybe another night hey.

Then the bomb shell message – “Feeling crap today, diarrhea and sickness was so bad, stopped chemo” Oh no poor Karen again. My heart slumped as I read of her message. She has to take this chemo shit otherwise the Harribabes may run riot. I feel for her as it’s easy to say the words, I have diarrhea (not easy to spell) but it’s another thing to experience it as part of your daily life and the soreness of your bum can’t be described. My poor chemo bud. Why does she have to suffer so much 🙁 she said that she is seeing Dr Weaver (our Oncologist) on Tuesday to discuss next steps. I hope this meeting is in Wycombe as I may get to see her again. Rita I need some serious prayers and candle burning next week, not for me but for Karen.

So why is today’s post called KISS – Keep It Simple Stupid. That’s because I am married to a very intelligent man. He understands so much on local, national and world politics, history, global finance, anything technical and can even explain stuff like quantitative easing. He remembers everything (apart from where he put his car keys) and in our house if you don’t know something you ask Steve. It’s awful sometimes for him as if he doesn’t know an answer we are all just so shocked and ask “why don’t you know”. He is a fountain of all knowledge at a level that amazes me. For me, I find real high level subjects hard to understand so I have to relate them to my own life e.g. World debt and solutions are reverted into my own household accounts so that it is simplified and makes more sense. So I have to apply the same logic to cancer, as do you really understand what cancer is? I thought I did but I didn’t really. I thought it was something that you just got, like any disease, you caught it but I was wrong, so let me try to explain it my way, the simple way – KISSED.

From the moment we are conceived our cells split and divide until a human body is formed. The splitting and dividing of cells continues all of our lives. Cells renew themselves continually and during this process of splitting and dividing the cells can produce a bad cell, this one bad cell splits and divides again and again until it becomes large enough to be labelled a tumour. These cells, the bad ones contain our own DNA and therefore when the lymph nodes are trying to filter out disease they don’t recognise these cells as bad ones as they are made up of our own DNA. If we all lived long enough we would all get cancer eventually. So once the tumour has developed it is just a matter of time before we become symptomatic and then the diagnoses and treatment of killing cancer starts. The reason chemo is used, which for me is a mixture of what I like to call platinum and Jays bleach is that your own body won’t try to kill the cells as it doesn’t see them as bad cells. Chemo kills all fast growing cells, Harribabes and sadly all other fast growing cells, like hair, nails, skin etc.

I hope that this is helping understand how cancer develops. The medical profession can give us all guidance on lifestyle that may increase our risks, smoking being one of many however the medical world still doesn’t fully understand cancer otherwise we would have a cure. Will we look back in 100 years and think chemo and radiotherapy was barbaric? I hope so, in 100 years I hope there is just one single tablet we can take that cures all cancers. Until then we have to place our lives in the hands of professionals and pray (with Rita) that Karen and I fall on the right side of the 56% survival rate of 5 years. My thoughts are now with Steve and his family from Saturday, Steve was told he was too young to have bowel cancer!. How tragic a loss of life can be from just one single bad cell. Another thing I didn’t know is that if you have bowel cancer and it goes in to your liver, you don’t now have liver cancer, you still have bowel cancer cells but in your liver. It may move into other organs but it remains the DNA make up of the original one bad cell. Hence my post entitled ‘Don’t call me shithead’.

So I hope that my explanation has helped you to understand cancer at a very basic level. Where it starts and why our bodies don’t kill it off. Now I smoke, have done since I was 14 years of age. Is it bad for me, errr yes I’m not totally stupid. Someone saw me the other day who knows I have bowel cancer and said “you still smoking” yes I replied, I have bowel cancer not lung cancer, would you like me to stop eating!! I was so angry. How dare you judge me and my lifestyle habits. If I was 20 stone and had bowel cancer would everyone say ‘well she brought it on herself, fatty’ Most of us enjoy a drink, some more than others granted but does someone with liver cancer deserve it whether they drink everyday or just enjoy a tipple at Christmas, no of course they don’t. One of the first cancer nurses we saw said that my cancer, Harry was due to nothing I had done wrong, she said “it’s just my good fortune and your bad fortune that you have it and I don’t” These words of comfort were wonderful as consider for a moment your told you have cancer and just to make it feel even more shit than it already does you are then told that you are to blame. If you have skin cancer and you sunbathe on holiday is that your fault? The guilt of having cancer, for destroying your world and those around you, who you love would just be too heartbreaking. We all do stuff in our lifestyle that in one way or another may or may not lead to disease but don’t judge me or others by lifestyle. What’s that great saying? Oh yes – ‘There for the grace of God go I’ and my other favourite “People in glass houses shouldn’t throw stones”.

I am not however suggesting that smoking is good for you (Health and Safety covered again for the under 18’s) Any addict will justify their addition. I think all smokers wished that they didn’t or hadn’t even started in the first place. In WWII soldiers were issued fags daily, that’s how my dad started smoking, during his National Service. When I was 14 it was considered cool and it took me along time to get the hang of it. The dangers were not really talked about. I don’t understand why our parents generation, who all smoked (apart from my mom) didn’t all die of lung cancer! If smoking causes cancer and less people smoke now, why has cancer rates gone up and not down????? Cot deaths were virtually unheard of but yet parents used to smoke whilst they fed their babies. Less people smoke especially around babies so why the increase in cot deaths??? Food for thought and maybe a separate rant post needed on this topic alone.

Now people do some wonderful things for me and I wanted to share with you my Weeble and my chemo bag. My Weeble was sent to me from mom’s friends Tom and Viv along with a lovely letter to explain how to use my Weeble. I have not seen a Weeble since I was a wee girl. It was sent it as ‘Weebles wobble but the don’t fall down.’ Same applies to life hey, you can wobble me but I won’t fall down.

My chemo bag is from Paula and was made by a lady with stage 3 cancer (Catherine Colebrook). She went through chemo and understands how hard it can be on your body. To put something back into the fund raising pot she donates a percentage to cancer research. Just thought I’d mention these gifts as so many of you have said that this blog has helped them in terms of understanding cancer and what to say or not say to people they know who is going through it.

Flowers are lovely and I consider myself very loved by all the flowers I have received. I would however now consider these gifts as they help raise money, they can make you laugh and the bag from my chemo kit can be used as a wash bag in years to come on holiday :-).

Back to normal life. The plan was that today I would work out of High Wycombe. Molly has had a sore eye all weekend which got worse last night. Despite our attempts to bathe it ourselves her eye was so swollen that even I conceded that she needed to go to the vets. I don’t have a problem with taking any animal of ours to the vets but what I fail to understand is that I only have to walk through the door and whatever I come away with is at least £70. Steve and I laughed at this last night as I didn’t think that they could possibly charge me £70 for eye drops! How wrong can I be again? £70.03 for eye drops, painkillers and a pair of plastic gloves, words fail me.

Anyway last night yet again I couldn’t sleep, 3 1/2 hours was all I got. After taking Molly this morning and still feeling low, I decided to work from home again. I texted Mary to say sorry, I was looking forward to seeing her but I know today I’m better off alone. It’s a low day today.

I have just received a text from Richard as he boards his flight back to Canada. This time for only 12 days but Louise and I will miss him loads. I think it’s just the lack of contact that makes it so hard and the time difference. See you soon Richard.

So It’s been a day of work for me, well for as long as I can concentrate for and then rest and then back to it. I had a fantastic weekend so why do I feel so flat? I’ll blame the drugs and see what tomorrow brings hey. Oh and thanks for all the shares yesterday again. 412 people now know more than is possibly necessary about my married life lol.

 

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…….