Author: Wend

I’m sorry this post is late up today but it’s been a busy busy day for me. So where do I begin? As ever where I left you last night…..

Schindlers List was 1/2 an hour from finishing and the internet dropped out, we tried loads of different things but nothing worked so we couldn’t finish the film and as Steve had gone to bed already we couldn’t ask him to fix it, anger number 1. Then when everyone has given up with the film and gone to bed I start to work on the little surprise I have been planning for you all. I had been working on the main computer for over an hour and so my stomach is now in two with pain, I start to gag and gag, the sort where your eyes water, oh no, I don’t want to be sick 🙁 I manage not to be sick and get to bed but only after numerous trips to the loo. Now this anger number 2 as I know it’s my fault for eating too much Sunday dinner of Roast Pork with all the trimmings but having spent two weeks not being able to taste food I just can’t help myself but I then have to pay the price. I eventually get into bed at just after 2 pm.

I wake at 5.50 am, no pain, excellent! and after 1/2 a biscuit, coffee and a fag plus animals fed I go to check the work I had done just 4 hours previously. The speakers won’t work, FFS they worked 4 hours ago, anger number 3! Steve wakes as he is on the early shift and I rant about how can something work 4 hours ago and then without anything being changed it won’t now work. Steve instantly fixes it as the computer had decided to turn the volume down itself. Steve goes to work and my day is all planned anyway. Take Rebecca to the hairdressers, take Richard to get his car MOT’d, Mom has to leave today and return to the Midlands. Pick Rebecca up and then meet Emma to do work. Anger number 4 as all this was going to plan but there are road closures all the way to the hairdressers that weren’t there this morning when I dropped Rebecca off at the hairdressers and I have to go back into Wycombe along the London road to go back up to Flackwell Health. I arrive but Rebecca isn’t ready and I have to wait another 20 mins which isn’t really anger number 5 as I haven’t seen Caroline who does my hair for months so that was nice but it is anger number 5 as I am now late meeting Emma and as mom has gone home Emma is sat on our drive waiting for me and so I’m driving as fast as I can to get home for her.

I remember that cancer joke for you to add some laughter to this anger post ‘My Oncologist now does my hair’ LOL

Anger number 6 is from my mom as she hates leaving me, she worries too much and is scared of the time she is missing out of with me, she doesn’t want to go back to her normal life. I’m sad for her  as I know I’d be the same if it was any of my kids but she can’t move in and be with us 24/7 as we all have to have space.

Back home and work all done with Emma which took hours and although I thought I’d saved a document it didn’t save and all the work had to be done again, anger number 6. It was lovely seeing Emma and spending time with her but I had now been awake for 9 hours and working in a sitting position as with the previous night sent my stomach into spasms and I can’t hide the pain from her,  I’m forced to take painkillers. Next door have a builder round and drilling can be heard for well over an hour. When Emma had to go and we go to her car which is parked on our drive it’s covered in brown dust, anger number 7, oh no poor Bella (name of Emma’s car) now Emma has to get her cleaned as brown shit coloured dust doesn’t look good on a mini convertible.

I am exhausted and can’t wait to sleep and relax my stomach. I have a missed call from Leanne, so I drop her a quick text to say sorry but I have to sleep and I do the same for Steve. Anger number 8 as I can’t walk Molly now, I’m knackered and I haven’t even started my post for the day 🙁 I sleep for 1 1/2 hours. I wake just as Steve returns from work. A quick exchange of the events of the day and I have to do my post, see how I love you all 🙂

Steve has done some research into turmeric being able to reduce or stop bowel cancer cells spreading and has returned home with the tablet form of the spice. He also says that I have to eat shiitake mushrooms too. I’ll give anything a try hey and so we will.

Both of these things are backed up by the Cancer Research UK and serious trials are being done to explore the beneficial effects, so it’s no quack cure.

I have listed all my angers as all of us, me and my loved ones are angry but who should they or I be angry with? So what happens to us all is that the lightest thing makes us all over react. It gives us a ‘thing’ to be angry with. Feelings of hopelessness is not good and the thoughts of what we all stand to lose and the possible difficult road ahead is always with us. It makes us all angry but to each other we are fine until something small sparks off the anger and frustrations of life.

Finally I copied this off someones timeline the other day as I like you was probably shocked to find out that Robin Williams suffered with depression. How can someone who brought so much laughter to the world be so sad? The truth is that like anger, depression can be a disability in itself and because people hide it away, like anger it festers beneath the surface of the exterior that we show others.

Anyway as it’s a ‘Warts and All’ blog so it’s all about anger and frustration today, sorry but we have to have the difficult days to know and appreciate the good ones hey.

As mom has returned and Steve is back as Editor, any mistakes in this post – get angry with him haha xx

I hope you all had a great weekend. Karen shared her story with you all yesterday, glad you liked it (an odd phrase to use but you know what I mean). Thanks for your messages to her left on the blog and for sharing her post with your friends. It takes real guts to share personal stuff with people you don’t know so I’m proud of her, thanks chemo bud and big hugs x

So back to Saturday and family day. Well that’s the trouble with planning isn’t it! I like a plan but like life plans can go wrong or just change direction. The plan was relax with family in the morning – Richard is not well with his sinuses. Lunch with quesadillas – new recipe that went well. Lauren arrives lunchtime – she couldn’t make it. Troy Boy and guests arranged to arrive at 2pm – they are running late. Guests should have arrived at 2 and left in time for me to have a sleep before going out to Nandos  – cos they arrived late I didn’t get my sleep. Family meal out – didn’t happen as too tired – Richard went to a Wedding reception, Lauren wasn’t down and Rebecca went to a friends party. Ended up with a Chinese take -a-way which was okay but not from where we normally order due to an online discount offer, should have known better. So curfew and family time ended up being Steve and I walking Molly. But if I walk my groin tumour gets upset and as the discomfort builds the slower and more disabled I look but Molly was happy as it was walk number 2 for her today. Back home I’m so tired I end up going to bed early and as this is the only night Steve can stay up with me due to him working it’s a real shame but I’m not great company and I leave him at just after midnight, poor Steve.

Now it’s not all bad as I did have a lovely day and lots of laughs with Bee, Tee, Shobs, Ish and of course my Troy Boy. Troy is my Operations Manager at work. It’s weird that he is in my home but it’s so lovely to see him. His sister had bowel cancer and survived and is now cancer free. We had a great time reliving fond memories of a troubled working relationship but one of respect now and fun times spent together. As I have said before I’m not the easiest of bosses, I’m demanding, a perfectionist, I’ll check everything until I can trust and probably a 100 other annoying traits that past and present work colleagues would add to the list. In my early years at Kingston I had pushed and pushed and pushed Troy too hard, questioned everything and drove him mad. One late afternoon he came into my office (lucky for me I was sat down) he threw his store keys at me shouting “I’ve had a fucking nough of you” and walked out. I ducked quickly to avoid the flying keys and was worried that I pushed my poor Troy Boy too far. Troy stormed out and followed by Ish and they went to the pub. Troy calmed down and sent me a text which I never got. After  a few hours and the store ready to be shut down  as I hadn’t heard from Troy I had to report to Julie (Regional Manager at the time) what had happened. Troy returned the next day and we agreed a way to work together. We often laugh about that day. It was the start of a new working relationship which over the years has always been bumpy shall we say but mutual trust and a deep understanding of each other as it’s foundation.

Here is the famous chemo gazebo shot of us all and I found a boxing glove which adds to the shot I think lol. I think Troy secretly misses me at work and my constant demands. When you work with people for years there is no hiding and some of us bond and some of us don’t but like the relationship I have with Mr Grump Bum, Troy and I have a loyalty which is irreplaceable. Troy brings me a 4 pack of Stella, he knows the old Wendy too well. Two bags of Nero’s coffee beans courtesy of Linda, cheers my good friend, miss you and our 4.30 chats. Tee and Shobs brought me a flower and a bottle of Millionaire perfume, thank you so much as now I can smell lovely. I am also stocked up with flowers, biscuits and chocolates again, I am so lucky and very grateful of their presents but I just want to share moments with people and gifts whilst lovely are not as precious as the people who bring them.

Now this one will make you laugh. As Richard is not well and he is going to the chemist he asks if we want anything so Steve quickly says yes following my telling off on Friday with the Oncologist that I needn’t be in pain. Steve tells Richard to get me some Ibuprofen liquid tablets as these work for me. Guess what he returns with? Ibuprofen liquid in a bottle and on the box is a picture of children with the words ‘safe for children from 3 months to 12 years’. Now there’s a LOL moment he won’t ever live down at home. Back he has to go to change it. Now I know he has no idea of the pain I suffer as I like to hid it from my loved ones but I don’t think his choice of pain killer would even touch it, bless him, he tried.

After Friday’s news on the possible fact that I may not be here to draw my pension, go senile and wet myself, ever have a free bus pass or a telegram from the Queen time takes on a whole new meaning and my constant thoughts of not wanting to leave my life, wanting to always be with my loved ones, sharing precious memories fills my days. It makes me sad that I may never see my kids marry or know any grandchildren. That Steve and I will never retire together after working full time (apart from pregnancy breaks with my kids) since the age of 15. The times we have discussed this as I’m sure you all have, what you will do in later life, which one of your kids will have children first etc. Now that may all be taken away from me and it makes me so sad.

I also really worry about Molly as she is only 3 years old. I talked this through with my mom on Molly’s first walk on Saturday morning. We discuss having her re-homed with another family as a dog is a massive commitment that Steve didn’t really agree to and Rebecca whilst she walks her daily and loves her too may not want her or to continue to live with Steve, mom can’t commit to her and Richard’s Army life and the times spent away from home would not be right for Molly. It breaks my heart as Molly is happy with her life, loved so much by us all so I even think that having her put down could be an option. Steve has agreed that as long as there is someone to walk her then he will keep her in the family home, her home. This means so much to me, thank you Steve as I’m sure people will offer to help out and mom will always dog sit for holidays.

I’ll share with you all  a nice but sad true story. One day shortly after my dad died I was in the car with Rebecca, she was about 7 years old and don’t you just love how simply kids look at the world. She has been told that Grandad couldn’t be with us anymore and that he is in heaven with Jesus but he can’t come back to be with us. Rebecca asks me if she can go and visit her Grandad with Jesus in heaven, I have to try to explain that it doesn’t work like that and that we are not allowed to go and visit them (I’m struggling to make this make sense to me let alone a 7 year old) she then says “but I’ll be good mommy” Now don’t we always use the ‘be good and then we will see’ line on our kids all too often and now poor Rebecca thinks that this is how she can get to see her Granddad again. She continues with pleas of I’ll be good and quiet and I won’t be naughty, please mom can I go and see him. A simple request from a child and as parents we would if we could grant them any wish but this wish is sadly out of my control and I can’t make my daughter’s wish come true, who through her pleas is breaking my heart. I try to explain again and again but in the end I had to revert to the old mommy trick of diversion and just change the subject. Probably about Mr Blobby as Rebecca loved Mr Blobby and singing the song normally worked every time.

At least Sunday almost went to plan, all awake except Richard who didn’t return until the wee hours from the wedding . Homemade McDonalds sausage, bacon and egg bagels made with an extra plate of egg for Molly as it’s her favourite. Richard finally wakes up but only after we sent Molly into his room and he looks shocking LOL. We all go for a family walk with Molly over Whiteleaf Hill, a local beauty spot. On our return I treat everyone to a McDonalds milkshake, well I had the Iced Coffee Mocha Frappe. Now this tastes so so so good to me, for many reasons, because I can actually taste it, it’s cold which is so nice after two weeks of not being able to drink anything cold and it feels normal, normal family going through the drive through without a care in the world after a family walk, who would ever know the truth hey.

Home again I sleep and Steve, Richard and Rebecca play MarioKart and I wake to hear Rebecca laughing, how wonderful. Roast pork is cooking courtesy of mom and tonight for curfew time is Richard’s choice and he wants to watch Schindlers List, a cheerful film LOL. So that’s my family weekend coming to a close. Thanks to Rita and the Methodist Church in Kingswinford who I know will be praying for me amongst others. I’m worried about Rita as her messages have not been the same since Friday’s bad news. It’s okay Rita as I’m strong and humour will see us all through. That, drugs and prayers hey.

Emma is coming to see me tomorrow to do work stuff and I’m looking forward to seeing her again. So enjoy the rest of your weekend, like me sharing precious moments with loved ones.

Okay as promised here it is, my story, I hope you are sitting comfortably and have a cuppa and biscuit! My Chemo Bud Wendy has asked me to draft a blog to chart my cancer experience. In many ways there will be similarities to Wendy’s but we are all different and as with Wendy, if this helps one person through the dreadful experience then my work is done!

As we are now 5 months post op and well past the beginning I may leave out large segments in the interests of the readers sanity! I have stuck to what happened without lots of details and haven’t really detailed feelings. Perhaps this is what is needed however it is a long piece of writing so I have kept it lean!

So where did the journey start, that’s a difficult one and I am only speculating as there is no proof of how or when the tumour started. So going back to November 2013 I was having problems with coughing, I mean serious bouts of pelvic floor busting coughing. Several visits to the doctors and a number of tests and x-Rays later confirmed that there was nothing wrong with my lungs. By February 2014 the prognosis was that I was producing excess stomach acid and the doctor put me on lanzoprazol to reduce the acid. This worked and stopped the coughing however it wasn’t long before I started getting stomach cramps and diarrhoea. The doctor put this down to side effects. In the summer I had a few episodes where I reacted to certain foods for example avocados made me feel awful and the cramps were at times debilitating, stopping me in my tracks until the pain had gone. As the summer went on my ability to eat large amounts reduced and by November/ December many foods were making me sick, so bread, crisps, anything spicy were all causing problems and I started to loose weight. Yay! I presumed this was down to my reduced diet and was pleased that by Christmas I had lost nearly 1.5 stones. Just before Christmas the doctor changed my tablets but just one day in I was sick so advised to go back to the lanzoprazol. By this time I was also exhausted. I put this down to working full time, looking after a 3 year old with my husband working as a chef and therefore never home! Over Christmas I walked across Wycombe to get my Christmas food from M&S. I had to stop 4 times to rest. This was definitely not right!

We thought we would cheer ourselves up and booked a lovely holiday to Sri Lanka to take Lucas to see his Sri Lankan family. My husband is from Sri Lanka and although we took Lucas when he was 3 months, we haven’t been back since so it was about time! How exciting, warm weather, sun ,sea ,sand and lots of curry! Booked for March and Lucas was so excited!

In the new year I saw the doctor again and told her I was exhausted, this prompted a blood test which came up with ‘an infection in the blood’ and anaemia. Great we are getting somewhere. I was advised to follow the FODMAP diet which is aimed at helping those with IBS. So I asked the doc, what do you think the problem is. The other day I found the piece of paper where I wrote her response. It could be IBS , Crohns but ruled out Celiac. What’s the worst case I asked. Bowel cancer she replied almost as an after thought. Ok I thought, I can cope with that. I envisaged how my life would change, in particular with my diet.Now being a chef’s wife and eating out regularly the thought of restricted diet is pretty bad!

Things moved quickly. Within a couple of weeks I had consultants appointments booked and bladder ,bowel and stomach scopes. Bladder was fine followed by a meeting with a consultant. This was 14 February. The consultant had a look at my notes although I still don’t believe he had access to my blood test results , he felt my tummy and said that it was definitely not cancer. Fantastic! More likely to be IBS. I was happier although worried about the changes that would be required in my diet.

A week later and I was back for my laparoscopy and colonoscopy. Before I go on I have to highlight the drink they give you to take to clear you out before the colonoscopy. It is absolutely awful, I had to take it the evening before and again in the morning. I never managed it all but omg it made me gag and retch and throw up , oh and of course emptied my bowels!

So at the hospital my mum and Lahiru ( hubby) came with me as hubby hadn’t yet passed his driving test! I was feeling pretty relaxed and didn’t really know what to expect. I was given a mild sedative and asked to lay on the bed.there were 2 nurses and a doctor present. We joked about making sure that the laparoscopy was done first! Laparoscopy done, no problem! I swivelled around and could see the screen. Knees bent up to my chest and breathe! Well says Dr Kahn, you have a very large tumour in your colon, and it is cancer.I will mark the edges of the tumour to record the size. I was in shock. Tears started to run down my cheeks. Don’t worry said the Dr,I’ve had cancer for years and I’m fine.
It all made sense now though the tumour was blocking my food going down and any food getting past was making it bleed hence the anaemia and lack of energy. Most food was going from the colon to the conjoined small intestine where the tumour had grown together which was causing the diarrhoea.
My mind was spinning .

I was taken through to recovery and they brought Lahiru in. Colette the chemo nurse came through and told me to get dressed and come through to the office. She went through an explanation using a dummy of the intestine. I was in a complete daze. Explanation complete we were shown out and without saying anything to mum went home. I didn’t want her driving with that piece of news fresh in her mind.

Within a few days we were meeting the wonderful surgical team, Mr Goeder and Barry. The op was planned for 10 days time, five days before our trip to Sri Lanka!

I worked up until the week before,keeping busy and getting everything organised assuming I would be back in a few weeks.

Holiday postponed until August as something to look forward to I spent the weekend wondering what was coming my way. Mum had been staying with us for 5 weeks at this point.

Dropping Lucas at nursery first thing on Monday we headed towards Wycombe hospital. I was absolutely petrified. Changed into my gown we walked from the day surgery ward to theatre. I was shaking,by the time we got to the theatre area I was crying and so scared. Goodbyes said to mum and Lahiru I was taken to the anaesthetic room where the anaesthetist made the mistake of getting his registrar to try to put the epidural in. Two lots of sedative and with the anaesthetist back on the job I was under. I had a cut from just below my bust to 3 inches below my belly button. During the 4 hour op they removed over 1/3 of my colon plus some small intestine, 61 lymph glands and all corresponding blood supply. Then joined the small intestine and colon back again.

Don’t you just love that feeling of coming round afterwards,so relaxing! Right so in a nutshell, Monday was the operation, Tuesday I was in pain but the nurses increased my epidural a few times but nothing changed. I was in agony. Tuesday was also the day I met Wendy, our eyes met across the room with a pitiful, knowing look and we were friends !

Eventually around 5.30 pm they realised that the epidural had come out, no wonder I was in pain! They fitted a personal pain administrator button allowing me to administer morphine every 5 minutes. I watched the clock! You can’t overdose they said. At around 4.30am I went ga ga,completely loopy and started throwing up green washing up liquid stuff. Omg I felt awful. Later on Wednesday they put a tube down my nose and back of my throat into my stomach to keep it empty. Green washing up liquid collected in a bag hanging from my nose! At least I wasn’t being sick any more. The looks of sympathy from Wendy said it all. I could also see that she was in agony and tried to return the supportive looks and smiles. we exchanged thumbs up and down during the day it kept me going and I am so grateful.

By Saturday I was feeling better although I hadn’t eaten for nearly a week. The nurses and doctors were amazing. I have never seen such wonderful dedication and teamwork. They were amazing.

I realised that if I wanted to go home I needed to eat and for it to stay down so on Sunday morning I had some weetabix.bad idea! I need to be on a low fibre diet and by mid afternoon I was so bloated, stomach cramps and so much pain but determined to go home I waddled around the corridors trying to shift the wind. With buscopan and plenty of toilet trips later I was allowed home. Great news!

The trip home with the jiggling about in the car coupled with some hand reflexology got rid of the wind and I felt much better.

It was lovely to be home and my husband was an absolute star cooking wonderful food every day. I had my staples out (34) on Thursday but was suffering with diarrhoea and a sore bottom big time.

Then after dinner on Friday I started getting stomach pains. At first I thought it was wind but after writhing around for a couple of hours and tramadol making no difference I gave in and asked mum and Lahiru to call the hospital. By this time I was in agony. An ambulance arrived, filled me with morphine and took me to A&E where I was scanned, prodded and tested and eventually found out that the stitches had split and my join was leaking.My consultant was on holiday in South Africa and I was scared.

Over the next few days I found out the infection in my blood was over 400 (normal is around 60 I think) and the surgeon was considering opening me up to rejoin the ends but this would also mean a colostomy bag. I wept and begged Barry not to do this. The thought of another op filled me with dread and coping with a bag was a close second. I was borderline critical according to the wellness score but after agonising with Barry! I am eternally grateful that he gave me first 6 hours then 24 hours to show signs of improvement. The 4 antibiotics started to take effect and the infection scores started to slowly reduce. They put in a drain and bag to draw off any leakage and let me off the surgery. At last Someone was watching over me.

After 6 nights I was allowed home. Another great moment!

I have to say that during all of this time I was suffering with constant diarrhoea and a sore arse. The soreness depended on what I ate! I really missed those curries (and still do!)

During all of this time I was inundated with well wishes, get well cards and flowers and gifts. It’s amazing and I am so grateful to all this who have and continue to support me through this journey.

So now we are around 8 weeks post op and starting to feel normal. Given that I had been so exhausted for so long I couldn’t believe how good I was feeling and made it down to Devon to stay at mums for a few days. It was magical.we didn’t stop and packed a months worth of fun into those few days! By now mum hadn’t been home for 3 months.Bless her.

Stage 2, just when you think it’s ok you start chemo.

Before starting chemo we met the oncologist. We had been referred to a lady who Dr Goeder spoke very highly of however when we arrived at the consultation we were told that we would be looked after by a locum. It was her first week so we gave her the benefit of the doubt but our second meeting did nothing to solve our concerns.

Just before the chemo started Lahiru and I were invited to meet the chemo nurses and discuss the side effects. We went along to the chemo ward at Stoke Mandeville, the nurses were lovely and the facilities were very nice.

Walking into the centre for the first time really brought it home and I just burst into tears. I was and am still surviving by being completely in denial.

Session one chemo, Lahiru had to be at work so mum came with me. I was petrified and cried when we arrived. The nurses were brilliant and calmed me down. One of the problems that I have had to deal with throughout all of this is my ‘wiggly’ veins which means that it always takes at least 2 or 3 attempts to get a cannula into me. This was no different however treatment started and things seemed to be going ok until the last 15 minutes. I went totally listless,was shaking and shivering and had pins and needles.I felt sick and couldn’t breathe. The nurses were good and calmed me down, they finished the treatment,gave me a blanket to put round by neck and throat due to sensitivity to cold and sent me home.I felt exhausted and really sick.

As the week went on every day I felt more nauseous, the diarrhoea got worse and I felt awful to the point of getting mum to call the chemo nurses. On a scale of 1-10 I was at this time a 6. This was Tuesday. By Thursday I wanted to die,I was a 10 and couldn’t stop being sick. I was telling the nurses that that was it,no more chemo,I couldn’t stand it. They moved me to a gastro ward for the next few days but by Sunday was feeling Ok and begged them to let me go home. They had no chance of arguing as I pestered them until they got a doctor to sign me out! Another stone off!

I was told all week that the oncologist would be along to see me whilst I was in hospital. She never did come.

I called BUPA. I have insurance through work but as things had moved so quickly and the nursing care had always been good I didn’t see the need to revert to going private however after my second consultation with the oncologist being as poor as the first my mind was made up. I was going to change consultants (to Mr Weaver recommended by Wendy) from chemo cycle 2. Whilst waiting for this to be organised the NHS fitted a PIC line into my arm to make chemo easier. This is a semi permanent port where bloods can be taken and any IV fluids can be administered without any further vein trauma. Getting this put in was in itself traumatic. My appointment was for 10am. When we arrived we were told that things were running 30 minutes behind so to pop and have a coffee. We returned after half an hour and were asked to take a seat. By midday I was getting very nervous and frustrated and was eventually given a tramadol to calm me down. It was after 1pm by the time they saw me to put the PIC line in I then had to go for an X-ray to check it was inserted correctly before going back to the chemo unit for the results. We left around 3pm, my only day to see my hubby spent hanging around at the hospital. What a waste of a day.

So we met Dr Weaver on Tuesday and agreed that cycle 2 would start the following Wednesday. Phew, another week to feel normal, better make the most of it!

Cycle 2 was administered in a private room whilst eating a prawn baguette and drinking copious amounts of tea poured from China teapots! Of course it wasn’t that easy as they don’t do PIC lines! We managed to get this cycle in via the PIC line with the help of a tramadol but it was removed at the end of the session and an appointment was made to have a power port put in. This is a port inserted under the skin on your chest under sedation. More trauma!

Ok so the chemo tablets were collected and commenced but by day 3 I was feeling awful. Adversity to anything cold, Nausea, diarrhoea , listless and dehydrated. I called the chemo helpline and was advised to stop the tablets immediately, by Thursday it was worse and I called my GP for a blood test as previously I had been really low on potassium and so dehydrated at this stage which was causing the problem of making me feel so bad. Blood test came back on Friday morning and I was given electrolytes and potassium to help me feel better. The chemo team called every day for an update which was nice and by Tuesday I was feeling a bit better. A meeting with the consultant ended with my regime being changed to a 2 week cycle with IV only and no tablets. We will see how that goes!

So having enjoyed a few days of feeling good we make our way back to the Chiltern Hospital for cycle 3. I was pretty nervous as the port was still sore and it was a bit of a fear of the unknown so a tramadol later I was feeling quite chilled. Getting the IV attached to the port was pretty painful and was sore for a while but on the next cycles I will have numbing cream to use before hand. The treatment went ok and apart from feeling tired I left the hospital feeling ok with an IV pump attached which will last until Friday. Two days later on Friday I turned up at the Manor Hospital in Oxford to have the pump disconnected. Contrary to what I was told It did hurt! After a quick flush through we had a look around and were gone within 40 minutes! Ideal.

The diarrhoea and sore arse started Saturday! Here we go again! The good news is that the other side effects such as adversity to cold and pins and needles are a lot less. The down side is that my hair is thinning.

At the time of writing my mum has been here nearly six months and we would never have managed without her. When I am feeling bad she takes Lucas to nursery, cooks, does the laundry and clears up. What a superstar!

Lucas has been pretty resilient however he becomes quite clingy and apprehensive when he knows I am going to hospital or when I am feeling poorly but nursery have been brilliant and supported him through the whole experience. He starts school in September but hopefully by then our routine will be much easier and he will sail through the change.

So before I finish here is my top ten tips and observations
1 when they say it can’t get any worse after the surgery, it can and does
2 the chemo staff do not have all the answers and won’t answer your questions directly
3 the nurses and doctors are amazing, totally dedicated,professional and caring.
4 just when you think your arse can’t get any worse,it can
5 friends,family and colleagues are amazing and will be a wonderful support
6 they don’t tell you that chemo is really crap
7 you don’t always get a 30 second warning when you need to go to the loo
8 no matter how bad things are,there is always someone worse off than you
9 friends you meet in hospital can help keep things in perspective and be a real source of support
10 your friends and family won’t always know what to say so cut them some slack

Epic over!

Do you remember that advert? Sadly again due to my age you will only get it if you were born of a certain decade. Well it’s Friday and the weekend is almost upon us but first back to last night.

So my tummy pain started at midday and raged on and on and on, I even took pain killers and didn’t walk Molly so you know I’m not good. I only had an omelette for tea and I keep showing Steve my ‘bouncy castle’ tummy as when it swells up I look like one or just 7 months pregnant. I think it’s wind as wind can be painful and that’s what I thought the cancer was back on that very 1st night of pain just 6 months ago on 26th January.

Steve tries to get me to take more pain killers so I agree to take them before bedtime. Now prior to chemo and cancer in general I liked a beer at night. Steve would always be the sensible one and me I’d sometimes have one too many if it wasn’t a work night. Whilst on chemo I struggle to finish even one beer some days and we only buy the very small bottles now too. It’s curfew time and Rebecca has chosen to play the music quiz tonight, now Steve always wins at this and that’s fine. Rebecca and her nan team up and I wobble into the front room. I ask Steve to make me a lemonade and lime, he suggests a shot of vodka goes in it, okay I said. The game played and of course Steve won and I drank my drink.

Steve and I go into the kitchen and Steve pours me another. Now he has been very heavy handed with the vodka as he hopes that it will help with the pain and it has. I drink another one and the relaxing of the pain is lovely. I have though become so tired and it’s only 12.30, I have to go to bed but worried I’ll be awake at 3 am. For weeks pre and post operation I had to sleep like pregnant women do with a pillow to support their tummy and that’s me again last night spooning with Steve with a pillow to support my bouncy castle.

Well it worked, forget medication go and get vodka I say. I wake up and it’s 5.48 🙂 that’s a good night’s sleep for me. The tummy ache has gone and I would be still asleep but I’m woken by the pain of the tumour/swelling in my groin. FFS! with if it’s not one thing it’s another, I get so sick of being sick.

Cat fed, no sign of Molly for breakfast as usual, coffee, 1/2 biscuit and a fag later and I’m okay. It’s Friday 🙂 it’s pay day, it’s Richard coming home day, it’s the last day of chemo tablets on this cycle and it’s almost the start of a fun weekend with Lauren coming down too. I just hope I’m well enough. But it’s also meeting Dr Weaver day at 2.20 pm!

Thank you all so much for your messages of support and love, for sharing your own stories with me and for sharing my blog. 33 people shared it yesterday a record number so far and when I check my stats the world map lights up of all the countries across the world where my blog has been accessed from. Russia is back on the map, are you on holiday again Evrim or maybe Putin’s reading this after all, well I have plugged vodka for him as a substitute for pain relief.

So today we have a plan. I’m going to work from home, do the food shopping with Steve prior to him starting work at 12 and then it’s emergency housework with nan and Rebecca until our appointment at 2.20.

Steve and I manage the food shopping so we are all set for the weekend of fun. I return home and the postman has been. I have a lovely card from Denise and the North West team of the BHS family, how lovely is that! I’m feeling the love from so many of the wider BHS family and that’s so special.

Plus a lovely photo of the beautiful Sophie with a special invitation to her 5th Birthday party in September.

Now it’s a funny world small world isn’t it? Today I got a message from Kirsty who was placed in Kingston as a Graduate trainee. She was so lovely to have in our store, the best we have ever had. She was enthusiastic, passionate but too bloody soft and cried most day’s bless her. Anyway she is friends with Richard’s very close friend Craig Parker’s wife Jade, they went to school together. Parker is the one who helped me get Richard back from Canada, he is also godfather to Parker’s little boy, Jack. I will never forget having to make that call to Richard in Canada, he just shouted “get Parker, get in touch with Parker” I was so grateful of his help that day as Richard knew he would look after me. You have a lovely husband Jade and I’ve seen video and photo’s of Jack and he is adorable too. My Love to you all.

At 2 pm Steve and I head for the hospital, typed list and pen ready. As always I’m the youngest one there. I am called through to be weighed, now after my operation I was 61 kg and two weeks ago I was 71 kg but that was with a hoodie on and my Vans, this time I’m back at 61 kg so more cake and chocolate I think is needed lol. I did see Frankie who takes chemo with me and here she is, another stage 4 lady but they can’t operate on her.

I return to the waiting room and we wait, and wait and wait. Now Steve has taken his lunch break for this appointment and we are getting concerned about him getting back to work. At round 3.20 we are called through. Dr Weaver is on holiday and we are seen by a lovely lady who is an Oncologist and part of Dr Weavers team.

Now everything I am about to report for you is guess work only as none of the statistics are me, I am not a statistic. We have to wait until the results of the CT scan which they are going to call me for in 2 weeks time and we will have an appointment to discuss the results in 3 weeks so again everything I now report is a general view.

My facts first – So there are several tumours in my lymph nodes in my abdomen  as well as the ones we know about in my neck and groin. She said not to worry about the perennial wall. The metastasis in me is classed the same as it being in many organs as it’s just a matter of time before that happens. There is no chance of a cure but remission or holding it at bay is possible if my cancer responds to the treatment. Other treatments will not be considered until we have the results of the CT scan in 3 weeks time. Other treatment they may use may not work for as many people as the chemo I’m on. She offered to turn the dosage down but I said no as if I can cope and it’s my best chance then that’s what I have to take. She examined my groin and said that on the next CT scan they will include that area too. I have agree to start taking painkillers after a good old talking to from the Oncologist and Steve.

General Facts – People with cancer presenting as mine is have a prognosis of 18 months to 2 years, this is reduced if the cancer doesn’t respond to treatment and extended if it does. It all depends on the results of my next CT scan.

We return home to tell my mom and Rebecca, Richard is on his way home so this post will be late up due to waiting for him, sorry and poor Steve has to go straight back to work.

Now tomorrow Karen’s story will be my post as I’m having family time and I’m really looking forward to it, so I’ll leave you until Sunday with what my mom has made for me courtesy of my lovely Aunty Shelia who gave me the transfer and we brought a piece of wall art, painted it the same colour as the dinning room and I think it works well. Thank you Aunty Shelia and mom.

And finally as ever this is not about me it’s about the people I love family and close friends so if you know any of them please give them your love and support as they need it more than me. I’m okay, I’ll keep fighting and I recall Jo’s message to me last night that said they gave her mom 6 months to live and she survived 6 years! So it will be alright in the end and if it’s not alright then it’s not the end.

Catch you all on Sunday xx

Do you remember that song? It’s my party and I’ll cry if I want too? If you are young then you won’t remember it or have even heard of the song at all. I didn’t even really like it myself but I thought it would be a good title for a post.

The title is apt as through the blog I’m not getting people reading or I should say responding to it that have cancer and I know why. It’s because their cancer and their feelings and journey is theirs and mine is mine. I had a message this morning from the Beating Bowel Cancer charity to say hello and to encourage me to make contact with other sufferers of bowel cancer. So why haven’t I done this? These are the people I want to reach, this doesn’t make sense does it?

The problem is that I am trying to still juggle lots of things. The illness and it’s effects on my body with the tumours that are visibly growing, the side effects of the chemo, the worry of my loved ones and their well being, completing my daily posts so that I can talk to all of you and of course I have work to do too. I don’t want to talk to people who feel sorry for themselves and listen to their woes if they can’t be positive or laugh at parts of the whole shitting thing. Gosh I think this sounds harsh as I’m judging how they will feel and that’s not fair. Putting this on here might even put people off contacting me, I hope not 🙁

I wake every morning regardless of what time I go to bed at about 5.30. I actually like it as I use the early morning to work on my project work so that whatever happens in the day I know that I have done some work, I’ve contributed in my own small way. It’s so important to me but I also need to be in contact with store life and people in their everyday lives that are normal, with normal problems and normal joys of life that they share with me. I could have phoned Mr Vines yesterday and talked the project through over the phone but nothing beats an excuse to get into a store. I was however regretting this when I was stuck on the M25 car park at 4.30 yesterday, not moving at all and I don’t miss my sometimes on a bad day 5 hours stuck in traffic commuting to Kingston. Some of my team who have visited me have said how they don’t know how I could have done that journey for 4 years but I did it as as soon as I walked into the store I was happy and the trauma of the journey forgotten. Just to physically cope with yesterday’s meeting I had a sleep before I went and when I came back as my energy levels are just not the same at all.

As it’s Thursday and I only have tomorrow to go and then it’s a week off tablets for me, I can’t wait to not have to take the tablets and then deal with their side effects on my body. The foul taste in my mouth, not tasting food, the constant lump in my throat which makes me want to gag, the tiredness, the lack of sleep, and the constant runs to the loo. Oh no hold on a minute that’s part of everyday life lol so apart from that I should be feeling more normal for a week. However then I have to face cycle number 4. Steve talked to me last night about a chemo depression, that it’s a recognised as a real problem. The mental strength needed to go into hospital and make yourself ill for at least one week. I’m not going to think about chemo, it’s too depressing.

So mom is travelling down today ahead of the big meeting with Dr Weaver tomorrow. Now unlike the last meeting we are going to take it seriously and I have my questions all typed out and ready. I don’t think he will be able to talk about prognosis until we have the results of the CT scan after cycle 4 but I have to ask anyway. Are we better off knowing? I’m not sure but he should be able to give me some idea, I can’t be the only one who’s bowel cancer has behaved in this way, however I can’t find anything on the internet so maybe I’m just special lol.

Here are my questions:

1. Where are the metastases in my body, and can you draw me a picture to help me understand what this looks like?
2. How many tumours are in my gut and how large are they?
3.  Can you explain the cancer in my perennial wall
4.  How fast is my cancer spreading considering pre surgery there was no evidence of cancer in any other lymph nodes, only 4 months ago?
5.  Discuss the tumour in my groin?
6.  Other cases of same metastases, prognosis?
7.  Is there any chance of remission?
8.  CEA levels
9.  Do I need a MRI to check my liver?
10.  Can we remove the tumours?
11.  Has my KRAS status been checked?
12.  If I have the wild type KRAS gene, when would you recommend that cetuximab be used in my treatment pathway?
13.  Is the treatment I am being offered at this hospital the only option available to me as an NHS patient? If not, do I need to go private?
14. Is HIPEC an option?
15. Would I be eligible for a clinical trial?
16. How will I know if the treatment has worked, when will I be called for my CT scan after cycle number 4
17. What happens if I decide not to have treatment?

I think he will see a very different couple tomorrow. I won’t ask him if it’s safe to have oral sex whilst on chemo as we have 50 shades of chemo to get through first lol

Rebecca and I head into town to met up with Mary and mom also joins us. Stomach pains started before we left the house. After two hours out of the house I need to relax my tummy, the whole of it is cramping like wind. It was lovely to see Mary as I haven’t see her for a week and bless her she is going to get the ground floor office sorted out for me so that I don’t have to manage the stairs in the Wycombe store as there is 3 flights of them. I’m asleep as soon as I get home but wake again still in pain. Rebecca makes me have painkillers and it’s starting to ease off.

So chief editor returns and so you shouldn’t find any mistakes. We have planned a fun weekend as Lauren and Richard will be here. Lauren loves Nandos so I’m treating everyone on Saturday night 🙂

Stud Muffin Pete and I have been talking all day and here is a picture of his scar, now the naughty man has been telling the girlies that his is a war hero and my suggestion was that he had been attacked by sharks. Either way he has been told that us girls love a good scar, so maybe this has to be number 51 in 50 shades of chemo! Haha. Just for us Rita a kiss from the stud himself, back home and safe 🙂 I’ll let you off the beard for now Pete as you haven’t been well but it has to go 😉

Hey Rita we have another denomination covered off, the Greek Orthodox church. Dena in Cyprus was passing a church the other day and she stopped to light a candle for Pete and I. The lighter provided by the church was broken but that still counts doesn’t it 🙂

So I left you yesterday guessing who my special guest was and both Rita and Leanne guessed it of course, it was the lovely Julie Murphy, my ex ex ex boss as sadly in our region, like birthdays you get a new one every year whether you like it or not.

Now it’s been 2 1/2 years since Julie left the BHS family but she is loving her job. So the plan was to walk Molly, home by 4, sleep until 5 pm, food prep and tea in for just after five, shower and ready for my friend. All going to plan and freshly out of the shower and dressed I head downstairs. The door bell goes and I panic as I’m not fully ready and could Julie be early? It wasn’t Julie but our neighbour who popped in last Friday to say thank you for the gift we sent her when she had her baby girl a few weeks ago. So we stood outside talking and then she comes over all faint and looks like she is about to pass out. I’ve got one hand on her and one hand on the pram, I call for Steve to help. Steve watchs the baby in her pram whilst I get her inside to cool her down. So I’m in the front room trying to cool her down and not let her pass out. I call for Rebecca to relieve Steve from baby duty, the baby starts crying, Steve and I are waving cushions at her to give her some air, a glass of water later and we manage to keep her from passing out. It turns out that she had taken the baby into town for a health check and to be weighed, she had pushed the loaded down pram there and back just 3 weeks after having a C section! Now High Wycombe is not called High because we live in a flat area. No wonder she felt faint but she thought she could do it on her own. We over estimate our bodies’ ability sometimes and all take health for granted.

Anyway crisis over and 1/2 hour later Julie arrives, Julie Murphy is in my house, wow. I had warned her to only bring herself and if I see anything remotely flower shaped that I will kill her and bless her she did as instructed but I did get a lovely bag of No7 goodies. Now I’m not saying her car is big but she had to do a 6 point turn in order to just turn it round when she left us. It’s a BWM 5 Series. Now my son would be impressed with that, it’s got leather everything and I believe it also makes tea! The neighbours will be impressed or think royalty has arrived.

We catch up a little before tea, in fact we chat too much as I can cook rice no problem but it’s a fine line between fluffy and a solid lump of starch and whoops I’ve been talking for too long and I have ‘rice fail’ but sometimes you just have to laugh it off and accept that rice like life isn’t always perfect. We all enjoyed tea which was beef madras, failed rice, and chicken tikka (just in case the beef madras was a fail) we all have seconds and Julie said she liked it 🙂 I explained that my desire to cook comes from my love for people. We can all order a takeaway but if well enough I love to cook, it’s my way of showing people that I love them.

We retire to the chemo gazebo but although the weather forecast said no rain it’s belting it down so we give up and go into the front room for what turned into hours of fun, laughter, catching up and of course my journey with cancer. Here is the famous ‘chemo gazebo’ photo for you all. Now Julie just looks stunning so I’ve used the best photo of her and I’m the old one on the left lol. Now when Julie arrived she did say that she thought I looked really well (an old favourite of mine) and I do but if she had seen me last week she would not have been of the same view. Now you may or may not notice that Julie is wearing a policeman’s helmet (it appeals to her authoritative side) and I’m wearing a pair of bunny ears! I’m not giving anything away but I will slightly tease you in that I am working on a special surprise for you all which I hope you won’t have to wait too long for, maybe 10 days. Anyway Julie is a great sport and as she knows my love of fun and laughter she agrees to wear the hat.

Julie is completely content with her life, her happiness can’t be hidden and her smile goes from ear to ear. It’s so lovely to chat up, share old memories and of course she wanted to hear my Simon Le Bon story but I don’t like to talk about that so I only gave her the briefest outline to the story lol. She stayed late which I didn’t expect as live lives in central London but I was so glad of the hours we had together, cheers Julie and see you soon.

So after a quick chat up on line I am so tired and go to bed just after 1 am. Now on my current shit sleeping pattern I’m secretly thinking that I may wake up at 4 am but I slept until 5.30, wow 4 1/2 hours of peace.

Wednesday 29th July

I have asked my chemo bud Karen to write a guest post for my blog about her journey through cancer as it may just help others to hear about someone else’s story. Last night I received her story via an email. I was so pleased that she had done this for me, for you and for anyone out there that it may help. Now this Saturday is going to be a manic family day as Richard will be home, Lauren is also coming to spend the weekend with us and my mom will also have returned plus a car full of BHS Kingston staff are also planned to visit. So I will post her story up for you on Saturday so that I can just enjoy precious family time. Plus it’s the start of my rest week so no chemo tablets for me and I should be fit enough to really enjoy it and I will trust me, nothing makes me happier than to share precious time with the people I love.

Today I spent the day in Staines doing my project work. Mother Hen had agreed to meet me for lunch too so why not mix business with a bit of pleasure 🙂 I head off in my car and memories of the last time I went into Staines came flooding back. I cried all the way there that day knowing that Mary Poppins was telling the Kingston team I was now stage 4, I had to tell Leanne over lunch and to the rest of the team in Staines had to smile and not say anything, that was a tough day for me emotionally.

Mr Vines has his stocktake today and therefore I really appreciated the hours he spent with me going through my project work as his will be the next one I do. Mother Hen also loved the stuff I’ve been working on and wants me to do one for Bromley too. I’m happy to do this for her as she has done enough for me over the years. We all enjoyed lunch together, reliving old memories of the years we have worked together.

Now Mr Moore you will never guess who turned up to work in Staines today too, what luck hey my BFF following an earlier meeting needed to pop into Staines this afternoon. Now I can report she did work and was not distracted by me being there at all, and here’s the photo to prove it 🙂

I dropped Mother Hen at the train station and she slipped a present into my car for me and as she reads my blog and laughs at the funny names I give people. Now these are personality chocolates and blow me they have a Juddy one lol so Teresa and Ian Judd here is your chocolate named after you. Countess Judd, no less haha.

On a final note I have just checked my stats. We have broken through 20 thousand views today, actually it’s 20, 586, I’m delighted and I can’t thank you all enough. The daily shares that you all do for me, are reaching across the globe and hi to our new friend Beverley in Michigan too.

If you are a regular reader of my daily ramblings then you will know that between 9 – 11 pm every day it’s curfew time in our house. If you have just joined me on this journey then ‘welcome’ and I will explain our curfew time.

After tea and chemo tablets which is usually between 7-8 pm we all have until 9 pm to go online, make phone calls, go on Facebook or whatever it is we want to do and then that’s it. No contact with the outside world for two hours. The only exception is our kids as apart from Rebecca, Richard, Lauren and Chris don’t live with us. Poor Richard interrupted the start of curfew time last night. As you know he is in Bavaria with the Army and I had texted him earlier about my day and mentioned going to the hospice. He replied, asking what a hospice was but I didn’t see it and poor Richard spent 4 hours waiting for me to explain what was going on. Without a response from me he googled the word ‘hospice’ and thought I’d popped in to plan my last days with them, he said it nearly gave him a heart attack, bless him.

I remember the first day we did curfew time, and it did feel odd but what a blessing it has been for us as a family. We have played games together, all kinds both traditional and modern, watched films or jut sat and talked. Rebecca before curfew time would normally be in her bedroom, alone and now it’s a daily plan for us all about how we feel we all want to spend these quality 2 hours. Steve says that all families should have a curfew time which leads me nicely onto a ‘rant’ I want to have ……

SOAPS!!!! Now before I started going out with Steve I would watch Eastenders and Coronation Street, without fail. I watched Brookside too for a short while but I never got into Emmerdale. I watched the very first episode of Eastenders, the one where Reg died. If I was going out I would record them and holidays would be an odd time without them as there was no ‘On demand’ back in the day! Now I sound old again, they appealed to my nosey nature LOL and also provided a talking point with colleagues at work the next day too. Story lines would be interesting as they tackled issues due to soaps being new and fresh. All groups of a multi cultural society could be represented and you got an insight and understanding other cultures and their family lives.

They provided 1/2 an hour a day of escapism from my world and I do think that for some, especially for those who live alone, soaps provide a sense of being part of another bigger family and it’s also just something to watch whilst you eat your tea.  So I haven’t watched any of the soaps for 15 years and I don’t miss them at all. I look back and realise that whilst I was spending my life watching others act out a fake life I was missing out on my own. If you only watch two out of all the soaps available each week then that’s at least 2 – 3 hours lost when you could be enjoying your life. Stop it! I don’t want to seem too judgmental I just wish I could have all the hours back now of wasted time over the years.

When I was young there was a programme on a Saturday morning called ‘Why Don’t You’ anyone of my age (47) will know that this stood for ‘why don’t you just switch off your television and go and do something else less boring instead’ how right they were! Try doing something else with that time, anything at all, you could always run down your road naked waving your knickers in the air! It’s less boring, good exercise and would give your neighbours something really interesting to talk about LOL. One final thought on this is all over Britain when the football is on, the men think ‘great allowed footy time on the TV’ and all soap fans moan that soaps shouldn’t be cancelled due to a bloody stupid game of football. However you soap addicts out there you have to find something else to do don’t you? Unless you just watch another channel, if that’s the case I give up lol.

Anyway back to curfew time and last night Rebecca went out so Steve and I were alone, precious time. Not that we don’t love being with others but real alone time is so good. Now I don’t know about you but we are working our way through ’50 Shades of Chemo’ haha purely from a research point of view you understand. I can’t be a hypocrite and tell you to try stuff if I haven’t tried and tested it first hey 🙂  that would be irresponsible!

So tired and completely happy I went to bed early last night, around 1 am. The problem with that is that I’m up again at 5 am. Chemo and long periods of sleep don’t go together. So I’m writing this post and it’s not even 6 am! but I have to post this up early today as I’m having a very special visitor in for tea tonight and I’m very excited as I haven’t seen her for about 18 months, no actually it’s nearly two years, oh how quickly time goes by hey? Anyway I’ll give you a few clues and some of you may be able to guess and some wont have a clue even when tomorrow I post up the famous ‘Chemo Gazebo’ photo. Now don’t get too excited it’s not Kylie Minogue or any other A list celebrity but just someone who I miss due to her moving on and leaving the BHS family, that’s clue number one. Other clues are that she is Irish, totally wonderful to work for, she once broke her back and understands the pain and suffering of illness. That’s all I’m giving away at this stage.

I was worried about Karen as I contact her last night but no reply. This morning she finally replied and she is okay  – the MC Quinn prayers are working 🙂

And finally in a few hours the wonderful ‘stud muffin’ Uncle Peter will be leaving hospital after two weeks of antibiotics following infection after his brain surgery. As a way of celebration I have included a photo of me with the man himself ‘picking daisies’ on one of many family holidays in Cyprus. Welcome home Pete, sending you lots of love and thanks MC Quinn for the prayers as look what our love traveling to Australia accomplished, Pete is coming home at last 🙂

Sunday 26th July

It’s near to curfew time and Rebecca has returned from Josh’s. She enjoys the warmed up Sunday dinner I had saved for her. We normally plan curfew time entertainment and tonight after hours of peace and quiet, we all decide that a funny film is a good idea. Light hearted fun to end the day with. Rebecca browses Netflix and comes across a film with David Tennant in it. Now my daughter would watch paint dry if he was in it and I’m not joking. The film is called “What we did on our summer holiday”, we watched the trailer and it had great reviews plus some good actors, Billy Connolly amongst many and it was a BBC film so what could go wrong hey.  So countdown to family film time starts.

Steve clears away the dinner and full of food and chemo tablets I send my daily text to Richard who is still in Bavaria. My text as normal is ‘how are you? what you up to? Miss and love you.’ His reply is sad as they have been to a concentration camp and he has been so moved by what he learnt and the images he saw. Now this camp was called Dachua and it was the first concentration camp opened by Himmler. Run by the SS as a torture and death camp over 200,000 people died there. Like most things in life you may have heard about this camps or seen films about them but to see them, to feel the sadness there is indescribable. Steve and I visited Auschwitz and it’s somewhere that I think everyone should go to. Not to everyone’s taste I get that but so moving to actually see it. So after a brief text exchange it’s agreed that I finally do have something for my ‘bucket list’ and that is to go with Richard and Rebecca to Auschwitz. When we hear or read about racism I always think about what I saw at Auschwitz as that’s extreme racism for you granted but to not accept people for who they are regardless of creed, race, colour or religion is just not acceptable to me. Also we should never forget the freedoms we have today are due to the sacrifices of those in WWII. As a small child my grandad always used to say to me “if it wasn’t for me and men like me you would all to speaking German!” I never really understood what he was talking about but I did sadly in later life.

I’m also on messenger to Karen who has had a day on the loo, our messages are funny as we discuss how sore her bum is and that maybe she should move the telly into her loo as she can’t move off it for very long. I say that I’ll ask Mother Theresa for an extra prayer for her bum. Karen asks if she can pray for it to be more pert too or is this an abuse of prayer power? I message MT Rita with Karen’s requests for a non-sore but pert bum prayer and sadly MT Rita confirms that this would be an abuse of prayer power so it’s exercise for Karen if you want that pert bum, if you can ever gets off the loo. I’m going to use MT Rita from now on for Rita as typing Mother Theresa every time is just too long.

So film on and we settle down with chocolates and a nice glass of red wine. Within the first few minutes I realise that this film is actually about the grandfather of the family is dying with terminal cancer! Oh no I thought this is not going to be good but actually it was a great film and we all enjoyed it.

Monday 27th July

I wake up at 6 am in pain. The swelling/tumour in my groin that has decided to become swollen enough that you can see and feel it. It feels so hot like it’s burning inside. The lovely Sunday dinner where I foolishly included asparagus, cauliflower cheese and leeks was causing stomach cramps too. See healthy food is not good for you and you finally have maybe twigged hidden meaning of the title post link too. Teeth cleaned I head downstairs for my usual 1/2 biscuit, fag and coffee once the animals are fed. But I then start to gag, and gag and gag and gag, now as my stomach is empty I have nothing to bring up but the retching won’t stop. Cramps continue until I can make it to the loo. Early mornings are never pleasant and I’m glad to be on my own to cope with it. Gagging finally stops and I manage to feed the cat, chemo and cat food in the mornings are just not funny.

Other of the lovely side effects that have started are the peeling of the skin on my hands. I have thumb print recognition on my iPhone to unlock it and this is becoming a problem and I may even have to change the security settings as now even my phone doesn’t recognise me sometimes. I have a sore in the corner of my mouth and my nails are just shockingly brittle but at least I have still got my hair as Karen is experiencing it thinning as it falls out.

I work on my project work but I have to keep closing my eyes as to concentrate for about 50 minutes is all I can manage without stopping. In the afternoon Rebecca goes to attend her therapy session and I head off to the Hospice.

I have no idea what to expect apart from maybe the smell of cabbage and bleach with the distant noise of bingo being played in the background. I was very wrong indeed. I arrived on time and I did see two very elderly people being manuevred out to the waiting mini bus, loved ones and nurses to assist. Everyone said hello and was very welcoming. I didn’t see the Irish lady until I was about to be shown into see Sharon. I couldn’t resist telling her that I knew the meaning to the phrase ‘for the love of a lamb’ or whatever it was due to MT Rita and her now saint like thread throughout my blog, we had a quick laugh and then I was taken to Sharon.

The hospice offers support for me on my own or any of us as a family. We talked through my short journey with cancer and on the advice of Jo this morning via a text I did tell Sharon about my blog and I have given her the website details. She now knows all about 50 shades of chemo and loved the analogy of the ‘all you can eat buffet of life being reduced down to making your own sandwiches’. I was shocked that I spent an hour there as time flew by. The offer of support is open for me to use and it’s confidential unless I say that I feel like killing myself or the kids, understandable I think that anyone would have to notify the authorities if this were the case.

So on balance I think I will go again, don’t know if Steve will ever want to go but sometimes you don’t realise what it is you need until you stumble upon it. Anyway so that’s my day in the wonderful world of cancer.

It’s Monday and all you lucky people have been busy at work, moaning about it being another Monday and discussing your weekend of fun. I miss sharing all that stuff with my BHS team but I know that we will catch up soon during precious moments.

Oh Rita! “For the love of the Lamb!”

I tried to cook Irish Stew and my pot exploded on me, mines broken! Oh well you can’t say I didn’t try to embrace the Irish theme but for fecks sake Rita I then spent the next 10 minutes picking crockery out of my lamb steaks!

Where on earth do I begin? Okay so where I left off yesterday is a good start hey.

Saturday 25th July

Our afternoon and evening had a plan to it. Girly chats and general catch up, dinner, old photos, karaoke and more girly chats with maybe a beer. Now a great plan hey but it all depends on how well I feel. It was lovely seeing Jiffy, Ish and Bee, it’s lovely seeing everyone who comes and sees me. I always try to be the best I can be if anyone visits as I don’t want anyone to worry. I hide pain as much as I can and any feeling of being tired. I would always say to my loved ones if they said for example “have you got a cold coming?” I would reply “no, I’m strong like ox.” Well I used to pre cancer and I can usually draw on that same inner strength to convince them and me that I am strong and perfectly fine.

Within an hour of it just being Nicky, Beth, Rebecca, Steve and I the tiredness starts again. I want to walk Molly as I haven’t taken her out for 8 days now, Rebecca or my mom have taken her (don’t phone the RSCPA yet she gets a daily walk). I miss watching her run in the sunshine after her beloved ball, I miss watching her swim in the lake and the freedom of being outside, walking and talking with my loved ones who normally come along too. So Nicky, Rebecca and Beth have to take Molly for me. I stay in the chemo gazebo and settle down to rest, sad that yet again I haven’t been well enough to go. Steve joins me. Today I can see the worry lines in his face, funny how our faces can say so much. He misses the old me, it’s been such a hard week on us all. He leaves me to rest and sleep.

I wake and I feel so much better, like I have really slept, refreshed for a change. The feeling is so good. So a couple of coffees and more fags than I should have I’m suddenly full of energy. Now I’m really looking to our evening to come. Steve and I manage to have a quick chat alone in the garden before I start cooking with the team and it’s a sobering one. When anyone is ill they may have an operation and the recovery process maybe slow but everyday it usually gets better. Chemo is the reverse, you take a well person and make them ill. Now although you are told you have a serious illness you look at your loved one and think that you can never imagine them dying or being so ill that they are close to death but for the first time Steve can see that in me, what end of days suffering could be like. My poor loved ones see so much sadness from the disease that I don’t want others to see, but that brings real sadness to their faces and I can clearly see that reflected in my hubby’s face today.

So forget the serious stuff, as James Brown would say ‘I feel good’ and I’m not wasting a moment. We all cook together, Rebecca and Beth are in charge of sauces, I’m doing the Mediterranean chicken and Nicky is on vegetables, oh and steve is the MC himself and in charge of music. My kitchen becomes alive again with laughter and just beautiful moment sharing. We ate and all enjoyed the meal which everyone made. Coffee, fag, chemo tablets and a slice of chocolate cake we then enjoy old photos and a trip down memory lane with our daughters of the fun life we have shared together since the age of 17. Steve however played MarioKart, bless him as my house is full of estrogen only but at least he doesn’t have to talk about fishing with Keith lol.

Now I’m still feeling good so it’s on to karaoke and for the first time since Christmas 2014 I am on my feet singing and dancing with my daughter and it feels good. Just to do silly stuff with them all. I can’t sing and do you know what? I don’t care. Life is not about being great or even good at doing something it the just doing it cos you can laugh at yourself or make others laugh that counts. We sang and danced for over an hour, I even had a cold beer, now life is really feeling good.

Fun and all sang out we return to girlie chats and now Nicky and I can talk forever and even the strongest willed of people would give up on us at some point. Steve retires first, followed by Rebecca and then the beautiful Beth. Nicky and I continue chatting until 4 o’clock. I don’t want the night to end as I haven’t felt this well for so long but eventually we go to bed.

As a special treat here is a photo of Nicky and I at her Wedding to Keith 25 years ago, where does all the time go hey.

Sunday 26th July

I’m really hoping after 4 small beers I will sleep until at least 9 o’clock but no it’s 7.30 and I am awake again but I still feel good and I’m embracing that feeling for every second that I can now and for the next 12 days until chemo cycle 4 starts :-(.

During our girlie chat Nicky says that she can’t believe how busy my life is. She now gets why the curfew time is needed so much. She said that she reads my blog daily and feels exhausted reading it sometimes but being here and seeing the visitors, phone calls, message answering, writing and editing my blog, then responding to daily contact emails etc then trying to cook, clean and rest is a daily constant mix of highs and lows. You can rarely finish a conversation in our house as someones comes in or the phone goes and so on. She sees how little time Steve and I have together alone. I also then remind her that I have to work too but work is always a pleasure for me as are the other things listed. I never knew what my blog would become and how it would change my life but I don’t regret starting it for one second. I have never felt so loved and so connected with people like I do now. Friendships old and new inspire me to continue to write daily. I enjoy sharing the highs and it’s hard but the lows have to go in too. Warts and all it all has to go in my daily post. My need to help people is satisfied through each post. Every time someone contacts me to share their pain of loss or experience of cancer I feel so blessed that they have taken a moment to share it with me. Each comment on the blog that is left will always be there forever for anyone to read and I really love that. So sincere thanks to you all for giving me the encouragement to carry on with my daily ramblings.

It’s 8.30 now and the house is starting to wake up. My kitchen is like I’ve had 100 people in it for a wild party and I can’t clear up yet as I don’t want to wake anyone up, they need their rest. A more relaxing day is planned of a full English breakfast and more girly time. I hope I can walk Molly today and then it’s a Sunday roast 🙂

Good news everyone the plan worked 🙂 breakfast was followed my more memory lane giggles and then all too soon Nicky and Beth had to go. Steve took Rebecca to Josh’s at the same time as Nicky and Beth left so all at once the house was still and quiet. I was knackered and lay on the settee exhausted, I close my eyes and drink in the silence, my head is swimming and rest is needed. Steve returns and leaves me to sleep.

Steve and I walked Molly, an hour together without interruption, being able to finish a conversation is wonderful. I haven’t walked Molly for 9 days and I’ve missed it so much. I’m at the hospice tomorrow and we have to plan for Friday’s meeting with Dr Weaver. Once home I agree to take pain killers and although it’s raining it feels good to be safe and warm at home with a Sunday dinner to look forward too.

Final thanks to Rita, Guy and all at the Methodist church in Kingswinford for your prayers and in fact all of you out there who send me your best wishes as this constant flow of love gives me so much strength.

Friday 24th July

I hope you all enjoyed ’50 Shades of Chemo’ that it made you smile, giggle or simply say to yourself ‘that’s true’ Whatever it did or didn’t do for you when posting it up I did wonder to myself if we could possibly cause a mini baby boom?? Probably not hey lol. So whilst I hoped you would all be enjoying it I’ve had a really shitty day, oh the irony of life! I post about sex and feel as sexy as a wet fish flipping about on the trawler boat of life waiting for market day!

Rebecca has an appointment at 3 pm at Stoke Manderville Hospital. Of course I need to go with her but it’s not been a great week for me, I haven’t driven for over a week but I’m determined to be there for my little girl. The plan is set, rest in the morning, McDonalds for lunch and leave by 2.10 pm at the latest, sorted. Back home by 4 ish. Post up 50 Shades of Chemo and enjoy the evening. Oh how life or plans can just go so wrong hey! The plan was working so far apart from the terrible stomach cramps that I’m getting, walking upright is so hard, just getting into the car is a struggle but it’s for my baby and I have to be with her. Heated seats switched on to help with the pain we set off in the driving rain which is never ending today.  The journey was fun listening to music Rebecca selected. Car dancing whilst not safe (Health & Safety covered again) is something that Rebecca and I enjoy (as long as no one can see or hear us, hey Rebecca) but also a sad one today. As Rebecca played ‘Wind beneath my wings’ by Celion Dion, I couldn’t hold back the tears. I used to play this song a lot and it reminds me of my Dad, my hero and my sister.

We arrive at the hospital in time but the parking is a nightmare. We have to park on the Asda car park and walk. I can hardly walk due to the various pains throughout my body, the new stomach cramps and it’s still bloody raining. We arrive, check in at the reception desk and wet through we sit, and sit and wait and wait. We chatted to the various patients that came and went but we were never called. The hard chairs remind me of the ‘waiting room of doom’ on Ward 15 and I’m now getting annoyed. Rebecca is getting upset cos she can see how much pain I’m in and feels bad. I announce that they have until 4 pm and then they are going to get some ‘Wendy feedback’ Now Rebecca is worried. 4 pm comes and so does my feedback to them!

I hobble to the reception desk. I apologise for disturbing them but I have been sat for one hour on a hard chair with my Daughter for an arranged 3 pm appointment. It’s now 4 pm, I have stage 4 cancer, I’m in terrible pain, I’m on chemo and shouldn’t even be around sick people, my car parking ticket is about to run out and none of this really matters as I love the NHS but not one person has spoken to us, or told us what’s going on at all! Rant over! The receptionist could see my pain and quickly apologised and said she would help. Within 3 minutes Rebecca was called through. Now great you think but by 1/2 way through the appointment I have to leave to move the car. It will take me at least 10 minutes to walk to the car and I don’t want a £100 fine. So I have to leave Rebecca and start walking in the driving rain, in pain. I get to the car but the rain on my face suddenly turns my face into a pain spasm which I just can’t describe. I’m sat in the car holding onto my face hoping the pain will pass, I’m wet through, my whole body is in terrible pain and I’ve had to leave Rebecca at the crucial part of the appointment. I eventually am able to move and drive again. I’m so low I can’t even explain it and I’m now just getting so tired of feeling unwell.

I manage to meet up with Rebecca and we head home through the rain. Once home I just have to sit for 2 hours and not move. I post up the blog and 50 shades of chemo and actually I’m glad we did it for everyone out there. I’m hoping for loads of hits, shares and comments but the next few hours are very quiet due to everyone reading it and I’m sure it’s causing some thought provoking moments amongst the 792 people that do read it between 6 pm – midnight.

Tea done and chemo tablets taken have to endure the weekly shopping trip of hell at Sainsburys. You get sex advice and I get a shopping trolly! Steve would go on his own and often has for me but I need to do normal things with him and feel part of life. The tumour in my neck due to the driving earlier is so painful, I lose the feeling in my hands and feet, each step I take sends pains through my feet, stomach cramps return and Steve and I walk round Sainsburys selecting food for the week as quickly as possible. I can’t touch anything, poor Steve has to do everything, my job is crossing off the list the items found whilst the staff look at us in a weird way, no normal couple shop like we do. My head due to the pain of the tumour has to lean to the right, the lymph nodes in my groin have swollen and now shooting pains go down my right leg. We eventually return home and I have to just sit unable to help put anything away cos I’m just so weak.

I try to pull myself together, I don’t want Rebecca to see me so ill. I start to help and as I pick up a cup I instantly drop it smashing it on the floor. That’s the 4th mug I’ve dropped and smashed in 2 days and it was one of my favourites too. Poor Rebecca has to clean it up for me. My poor family, what a complete wreck I have turned into.

At 12.30 I decide I’ve had enough and need to go to bed, Steve has finally managed to persuade me to take pain killers. I have to try to sleep, I crave an escape from how low I feel. Steve joins me and cuddles me, this makes me feel loved and safe. So whilst you lot are enjoying the buffet of life I’m safe, warm but scared and I drift off in the arms of my Mr Wonderful.

Saturday 25th July

5 am and I’m awake, it’s not raining and I feel better. My best mate Nicky and my goddaughter Beth are coming to stay the night tonight and we are all looking forward to them being here again. I get a message from Jiffy, that he is coming to see me and so I’m full of hope for an excellent weekend. Sharing moments, the meaning of my life.

The postman delivered a lovely card all the way from Australia from the ‘Stud Muffin’ himself, now this really touches me as he has been so poorly following his operation and still takes time to send me his love, thank you Uncle Pete.

I rest all morning waiting for visitors to arrive, Rebecca helps me tidy up. Jiffy, Ish and Bee arrive first, OMG I have them in my home, I’m so pleased to see them, part of my BHS Family. Then Nicky and Beth arrive. I’m feeling really well this afternoon and I’m blessed that my home is full of fun, laughter and friendship again. We share precious moments together but they have to go all too soon. Good luck Jiffy when you return to Sri Lanka and I hope you have a life full of love and happiness. Bee has told me she is returning next Saturday with my Troy Boy! OMG now that will be a good day indeed.

So it’s now late afternoon and so I’m off to enjoy the company of Nicky and Beth with Rebecca and Steve. We have Karaoke planned for this evening so it should be great fun. I hope you all have a great evening too especially if you have read ’50 Shades of Chemo’ wink wink 😉

Oh before I forget Rita, on tomorrows prayer list we need Karen, Uncle ‘stud muffin’ Pete, my loved ones, Guy’s son and Carolyn’s father in law and anyone out there who suffers from illness, disability or depression. They all need some love this Sunday, Cheers Rita (Mother Theresa)

Prayers answered for baby Jacob who is safely home from hospital and Mr Grey’s Uncle.

Edited by Nicky Jones, any mistakes please feel free the leave her a comment, she loves feedback LOL