Mine's Broken

Last night

We were expecting photos for the calendar to come in tonight from the Juddy’s but nothing had arrived. I was excited to see them. I know that this is Steve’s project but I have been amazed at the effort that has been put into the photos so far and I think it’s going to be a real success. We don’t have perfect bodies and we aren’t professional photographers but that’s actually what I love about the photos so far, they are real. Real people showing their real bodies, not airbrushed or altered in anyway.

Steve announces that he has received an email from Teresa. Now I’m super excited and also a little worried as what do we do if theirs or anyone else’s that comes through isn’t good enough? I need not have worried OMG the photos are fantastic and now I just can’t wait for it to be finished so that we can show the world. The effort that the Juddy’s and others have put to in these photos is just amazing. I am overwhelmed at the effort, passion and commitment to producing these photos for me. I love that people that are becoming part of my journey, the video first and now the calendar. I’ll have to come up with another wacky idea just to keep the fun going. I also enjoy a long chat with Teresa, which wasn’t really allowed as it was curfew time but after seeing the photos I had to talk to both her and Ian to say a massive thank you to them both.

Now I don’t want this blog to turn into my sleeping post but I have to share the good the bad and the ugly with you all as I’ve always promised it’s ‘warts and all’ so last night the pain in my back started to increase from around 10 pm, I took painkillers and knowing the signs I was now dreading the night ahead.

Steve was on the early shift today so he wanted to go to bed before midnight. Mom and I stayed up to watch the XFactor but unlike other Sunday’s episodes it was 2 hours long so we only watched ½ an hour and then mom went to bed.

I stayed up to play my favourite game of ‘wack a comment’ and to take the last drugs of the day.

Drugs taken I always like to give them at least ½ an hour to work before I try to sleep. Now the plan was for me to take 5ml of oral morphine before bed so that I can sleep. I’m not sure about this amount so I wimp out and take 3 ml so that I have 2 ml in reserve. Morphine taken I head off to bed at 1.15 am.

As soon as I lie down the pain starts to build and build, I toss and turn and toss and turn. I even try to sleep on my front, which was something that my mom suggested I try. Nothing worked at all, I gave it ½ an hour and was back downstairs at 1.45.

I could have taken the other 2 ml of oral morphine but I wasn’t feeling well. I had a headache and it felt like I had a hangover but of course I hadn’t had the fun of drinking first.

At 2.30 as I can’t now get comfy on the sofa in the kitchen I go into the chemo gazebo and although there is a cool breeze it’s refreshing and lovely to be outside.

Between 2 am and 7 am I think I got about 2 hours sleep as once the intense pain starts it won’t stop. I didn’t call Ian Rennie nurses as I didn’t want to take any more morphine. The pain is not as bad as the previous night so I just wait it out.

Rebecca, mom and then Steve wake up and they are all disappointed that yet again I have had no sleep really. I reassure them that the pain is better in the day and therefore we have to give the new drugs a chance, plus if the tumours are pressing on a nerve then the pain will be worse when lying down.

I checked the BBC news this morning and I was encouraged to read that Cancer Research UK has been a driving force behind a trial to test for bowel cancer in different areas in Britain from 55 years of age. As I read the article I’m sad. The take up rate for the test was poor and even less people did the test from deprived areas. 41,000 people each year are diagnosed with bowel cancer and of those 16,000 die. Mark Flannagan, the CEO of Beating Bowel Cancer has previously said:

“it’s unacceptable that there are CCGs in England that diagnose less than one in three patients at an early stage.

“If they all performed as well as the best, thousands of lives could be saved and millions of pounds could be freed up to be used for other bowel cancer treatments, which patients are frequently told are unaffordable.

Every penny that we’ve raised and others like me go towards keeping him and others in their positions in order to raise awareness, assist research and for Mark to influence central government.

Now I’m excited this morning as the builders are due to start the foundation work on Daisy Den. As promised they arrive at 9 am and once builders tea has been supplied the ground is marked out and I sadly have to leave them all to go for chemo.

Mom drops me off and I head to the Sunrise Ward. I struggle walking to the lift as I’m carrying my bag. The lift took ages to come and the dragging pain in my leg is hurting as is my back. The usual nurses are there and they all greet me with smiles and as I get to know them the conversations have gone from poo to how was your weekend, the latter being a much nicer topic I think. I select a window seat in bay 1 and the chair worries me, as I know I have to sit in it for over 4 hours. I ask about my CEA levels (cancer markers in the blood) previously they were 4.4 and then they increased to 6.6 and the results from Friday are that they have reduced to 2.7. OMG I text Steve straight away with the good news and as these levels are the same as a non smoker he questions my smoking levels and clearly I need to increase my fags, lol only joking, but finally some good news. Dare I dream that this chemo is working and may extend my prognosis?

I get myself settled and start today’s post as the treatment is given, as the time goes by as with the first cycle the pain starts to ease. Just over 2 hours into the treatment Mary from the High Wycombe BHS team comes to sit with me, she arrives with Costa coffee and a chocolate muffin. We sit and talk for about another hour and I then need a wee. Without thinking I stand up and walk normally, I’m so excited at this, I just can’t believe the difference in me. I return to Mary and ‘wiggy woman’ arrives and we go through to her salon (which is not a salon at all it’s just a treatment room). Mary comes with me. The first wig I try is fantastic if I was on the game, it’s full and long and very sexy. We agree that its lovely but slightly wig like. The second one is amazing and I have fallen in love with it. I joke that I’m excited to lose my hair now. I confess to ‘wiggy woman’ that it’s her nickname and the nurses all know about the nickname I have given her. She loves it and laughs. She also remarks on the difference in me from just two weeks ago when she said that I looked ill and she remembers that I was relying on my walking stick, as today I walked in there without it although I was still connected to the drip wheelie thing. Mary even tried on the wigs and we all had girlie fun with the different looks. I hug ‘wiggy woman’ as I just have to, she has just made cancer and the possible side effects fun and I appreciate it so much.

Mary and I returned to the ward with me wearing the wig, I love it so much that I’m going to wear it to go home in to see what their reaction to it is. The nurses love the look and I pose and pout to make them all laugh. Treatment over I text Steve to tell my mom to come and get me. I walk out of the ward holding my stick not using it, I’m smiling and happy. Mary carries my bag and we stand at the front doors waiting for mom. It’s actually Steve who picks me up, I say goodbye to Mary with a hug too and get into the car. We chat on the way home but Steve says nothing about my hair. I walk into the house and my mom takes one look at me and says ‘wow’ that’s amazing. Steve then finally notices and we all spend the next hour just happy, happy about the CEA levels, happy that I’m feeling so much better, happy with the wig look and happy that the work has finally started on Daisy Den. Here is the progress they have made in just one day.

So it’s been a good day, whatever tonight brings I have had a great day and I’m confident that the new pain regime will work and that I have hope of being able to live again soon, do normal stuff like driving, walking the dog, hugging my hubby, lying flat in bed without pain, visiting friends, dare I say go into work and all the simple things that I have missed out on lately and I long for everyday.

I did promise you a photo of Molly’s new toy which Nicky brought for her, it’s amazing and when it’s dark she looks like an Ood (this will only make sense to Dr Who fans, so that’s just you Mr Grumpy Bum lol and my hubby of course). Thanks Nicky and we will enjoy this toy during the long winter months.

 

 

Finally a massive thank you to Rita who hasn’t been feeling well lately but still went to church with my prayer list. Here are the candles see lite for me, Karen, Frankie, my loved ones and for peace for everyone, as that was my prayer wish list for this week. Thanks Rita, our angel xx

Last night after a Chinese for 7, Nicky, Steve and I sat and chatted until about 10 pm and then as planned us girlies watched the XFactor. I also, as I do every night if mom isn’t with us called my mom to see how her day went. She felt bad that she wasn’t here to help Steve and I on Friday with the trauma of the prescription. She also was sad about the questions I asked at the meeting with our Oncologist. I did admit that whilst I asked the question about signing me as terminal that I had hoped that he would have replied ‘no, don’t you worry about that, we are no way near that yet’ but instead he said that he thought Dr Weaver would support my request. Steve remained positive as normal and as I hadn’t told him prior to the meeting that I was going to ask them to sign me as terminal I thought he coped really well.

XFactor done we all returned to our chatting away about life in general. Nicky and Steve enjoy a drink and it’s funny but I don’t even fancy a beer and I’m happy with a hot chocolate, oh how my life has changed. Steve and Rebecca get my stuff ready for bed. Hot water bottle, V shaped pillow and oral morphine just in case I need it through the night. Now I just want to thank my lovely daughter as yesterday was a busy day and with visitors coming she did all the housework for me. She is so helpful and caring and I appreciate it’s Saturday and she still is a devoted daughter to helping her mom, bless her.

Steve goes to bed and Nicky and I sit up for another hour. It’s nice to chat just the two of us, old mates who’s friendship started at such a young age. But I also stay up to take my last painkilling tablets and to make sure I’m tired enough to sleep. at 1 am we head off to bed, this is early for us but I’m tired. Steve was still awake and I was hoping that he would have been asleep so that he didn’t worry about me. As soon as I lie down the pain starts to build, Now the pain in my back was hurting in the hour before I went to bed but I was hoping it would pass. I tossed and turned, sat up, lay down, tossed and turned but no position was comfortable. I took the oral morphine and tried again to sleep. Steve says that he won’t sleep until I’m asleep and tries to comfort me. I can’t lie down in any position it’s just too painful. At 1.45 to decide enough is enough I have to leave Steve to sleep so I return downstairs. At 2.30 I take a 800mg Ibuprofen as I still have that in reserve but this doesn’t work either. At 3.15 am I decide that although it’s dark I need to be in my chemo gazebo, maybe I can sleep there. But no that didn’t work either and the pain just went on and on and on. Not a dull pain but acute deep throbbing that won’t go away. I try everything I know, trying to relax my body and breathing through the pain. I try every position and mind over matter but still no relief. I wonder how bad the pain would be if I haven’t had the drugs to help, that doesn’t bear thinking about. I must have finally nodded off and about 4.30 am to wake again at 5.30 am in pain. I hang on until 6 am when I can take today’s collection of drugs. I thought we had cracked the pain, I had great hopes yesterday of getting the pain under control. I just don’t understand how I could still be in so much pain after all the drugs I had taken.

I sat alone thinking of the night before. One of the most frustrating thing for me and Steve is that due to the pain we are unable to just cuddle. I would love to just lie in his arms and feel safe and secure, loved and just as any couple should be, just close. We both miss this part of our lives. The naughty stuff is missed too but it’s the simple pleasure of a hug that we would both enjoy and treasure. I am never alone in the garden as the birds feeding on our bird table are always very busy first thing in the morning, so just for you I have taken a photo of my tits on my fat balls, enjoy!

At around 9 am Nicky woke up, fabulous as I had some company at last. We sit drinking coffee in the chemo gazebo and I said ‘I haven’t seen the squirrel now for 4 days’ and honestly as soon as I finished my sentence the squirrel appeared on the garden, Tia (the ungrateful rescued cat) saw it and ran after it the chase it away. Molly as it was early was of course no where to be seen. I did however manage to grab my phone in time to record the squirrel. Here is the evidence and we have decided to call the it ‘Spike the Squirrel’

Beth woke and we were going through old photos and enjoying sharing precious shared memories of our past years and friendship when Keith called to say that ‘Soots’ the rabbit was very ill and needed to be put down. Soots was 9 years old which is a grand age for a rabbit. So within 10 minutes Nicky and Beth were packed and heading home to say their last goodbyes to their treasured pet.

With the plan of the day now changed Steve and I finished the garage tidy up. Richard and Louise walked Molly and then Richard poo picked and cut the grass for me as the builders are coming tomorrow. At 3 pm after some lunch I fell asleep until 6 pm. Mom had come down at 1 pm to see Richard and so bless her she has started the Sunday dinner otherwise we would have all starved.

I wake to Mary’s text to say she has placed the fund raising onto my Just Giving page which was lovely to wake up to. Thank you to everyone who contributed to the money raised.

I’m hoping for sleep tonight as I have chemo tomorrow. Amanda from Ian Rennie called this afternoon to check up on me and she insisted that I call them in the night if it happens again. I did consider this last night but I didn’t want to trouble anyone, so bloody British of me hey?

I hope that you all enjoyed your weekend and I know Rita would have been praying for us all but my request list to her was for Karen, Frankie, my loved ones and for peace for everyone, not a lot to ask for I thought.

Tomorrow’s post will include photos of my wig, and Molly’s new toy. All will be revealed tomorrow for your pleasure 🙂 x

 

 

The first part of this post is a catch up on yesterday’s hospital visit which is not as positive as my day today so if you just want a positive read skip the first part, I won’t mind and the choice is yours.

Yesterday my blood test appointment ahead of chemo cycle 2 of 12 starting on Monday was at 3 pm. Oncologist appointment was a 4 pm. Steve was worried about me getting around the hospital with just my stick and arranges cover at work so that he can push me about in the wheelchair. The new prescription of MST (slow release morphine) has been organised by the wonderful Marina. As the lifts to the Sunrise ward are at the front of the hospital Steve drops me off and goes to get the prescription for me whilst I’m having bloods taken and then to return have maybe a relaxing coffee prior to the 4 pm appointment. Well that was the plan but life doesn’t always go to plan does it!

Steve goes to the chemist as my doctors have faxed the prescription through. They do this to the wrong chemist, when they do send it to the correct chemist for Steve as it’s morphine the pharmacist has to have the original prescription so Steve has to go back to the doctors then back to the chemist and instead of this being a simple task Steve is now stressed on top of the normal stress and arrives back at the hospital with just 5 minutes to spare before the appointment.

So he gets me in the wheelchair and at great speed we head to the appointment which is in another part of the hospital. I’m grateful for the wheelchair as I know that I just would not have been able to walk there. Checked in we go to the waiting area. We made it just in time. 50 minutes later my name is called and by now I’m not happy. Yet again with these appointments they are running an hour late!! Steve wheels me in and Dr Weaver is on holiday so we are seen by one of his registars. He asks the fatal question ‘hi sorry to keep you waiting and how are you?’ I rant about the wait, the pain of sitting for me in a wheel chair in an unbearably hot waiting room. He apologises again and I try to calm down for the meeting.

He shows us the CT scan and the tumours in my torso. It’s weird looking at the inside of your body, I have no idea what I’m looking at or for but the Dr tries to explain. He believes that the tumours are pressing on nerves. He is sending me for an MRI scan just in case they have missed anything as I question again if the cancer has gone into my bones. We discuss pain relief and we now have a new plan. The slow release morphine is to be taken twice a day. He has told me to not take the amtripaline but to replace it with gabapentin as it’s the best know nerve pain killer. I can take normal painkillers on top of this plus oral morphine for break through pain. All of these drugs slow your system down and everyone has constipation as a side effect! Oh the joy of life hey.

We discuss my prognosis of 18 – 24 months and that in view of the last chemo not working we know that this may even be shorter. He agrees to talk to Doctor Weaver about signing forms to say that I am terminal so that we can access pension funds and the critical life policy on our mortgage. Not nice to talk about but having access to these benefits if I do only have a year left would make such a difference. Steve wants to also use the money to fund other possible drugs that are not available on the NHS but all of this only doable with money.

Appointment over we head to the pharmacy and again have to wait for the new drugs. We have now been at the hospital for 3 hours! We finally leave the hospital and head for home through the rush hour traffic, oh joy again.

We pull up at home just as Rebecca pulls up following her driving lesson with a friend of ours, Simon. Richard and Louise are here too. Tea started Steve and I fill everyone in on the last 3 hours, two coffees and a few fags later Steve and I start to calm down. Simon comes in for a coffee, hasn’t seen me for a few months and he is shocked at the state of me. He can’t hide his obvious upset and shock of seeing me hobble about in pain with a walking stick. He says that he doesn’t know how I or we cope and I assure him that I’m fine and that at least I still have my sense of humour.

Tea done and cleared away. Steve and I make Lemon Drizzle cake for the BHS Wycombe team for their fund raising day. By 11.30 I’m knackered, I have got through the day with only two hours sleep and I don’t know where I’m getting my energy from. So not like me at all but I head off to bed. Mom suggest that I take the V shaped pillow with me for extra support, good idea. So last drugs taken I head off the bed with pink fluffy hot water bottle, oral morphine and the V shaped pillow, hardly a sexy look hey! Once in bed and lying down the pain starts raging again, I just can’t lie down. I don’t want to stop Steve from sleeping and I was going to give up and return downstairs but instead I take the extra morphine and finally I sleep.

I wake at 4.30, wow 4 1/2 hours sleep, bliss.

Saturday and my wonderful day 🙂

My day just got better and better. We went into BHS High Wycombe Mary and Anne had made cakes but the effort was amazing, the cup cakes even had daisies on top of them. We went for a McDonalds breakfast and I am so happy to be out, so happy that I feel almost well, that the pain is under control that as I talk to Mary about how difficult the past 5/6 weeks have been I cry and Mary hugs me as she understands. She had to look after her mom through cancer and she recalled how different her mom was once the pain was under control.All too soon we had to leave Mary as we had a date with Chemo Karen for her contribution to the calendar. The Wycombe team raise £152.36 🙂 and they are going to continue the fund raising tomorrow too. Thank you all so much.

Sat nav set we head off to chemo Karens house. Now we shared so much pain together, we have a shared experience, a bond that through the operation know one else can understand. The pain and suffering that I saw Karen go through even now just breaks my heart. But I know nothing of her world. I’m excited to see her world.

Her house is amazing, a small village set in the countryside. We pulled into the drive and there she was. Karen had baked a wonderful chocolate brownie cake and we enjoyed coffee and cake together. It was lovely to see Pat again too (Karen’s Mom) and Lucus her son made me daisy drawings and butterflies. Now Karen wasn’t sure about the photo shoot. None of us how perfect bodies, we all look better with clothes on. I am so proud of her for doing it, for supporting and doing her bit to raise money for Beating Bowel Cancer which do so much for so many people. All too soon we had to leave her and her wonderful house as my best mate Nicky and Goddaughter Beth are coming for the weekend.

We return home and my pain is back, I can’t rest as planned as I can’t lie down so I rest half propped up but I do sleep for a while. I wake and have to take extra painkillers but that takes the pain down to a dull roar but I can cope with that compared with the pain of the past weeks. We then have surprise visitors, Amy, and her very gorgeous hubby Joey and their cute new puppy Wilson. We all spent over an hour together, Amy loves my Daisy soft furnishings and Joey has also offered his muscles when the Daisy Den arrives and Steve has to build it. The last time I saw them was at their beautiful wedding and Amy remarks about how quickly I have changed health wise in just a few months. This also worries me but if we can get the pain under control I know that I can lead a better quality of life.

Today driving with Steve through the countryside in the sunshine was so wonderful. After suffering so much and being house bound for so long you see the world and natural beauty very differently. I feel alive, I feel like there is hope and a chance of picking more daisies with the people I love.

So a wonderful day, shared with wonderful people, life and what makes me happy is sharing precious moments together and today I did this and it has made me very happy 🙂

Finally a special thank you to Hilary (school friend) who sent my a beautiful cushion for my Daisy Den, I really appreciate the gift and it fits in lovely with my other soft furnishings 🙂

 

Over the course of the evening the loss of being able to use my right leg eased a little and I was hobbling better. Curfew time was replaced by Steve and I having a bath as I thought it might help with the back and leg pain. If you remember a few posts ago I talked about Steve having a flare up of excema so once in the bath his skin looks normal albeit red due to the ecema rash but my legs look yellow. Steve assures me I’m not turning yellow, oh good that’s okay then but he his colour blind so that’s really no comfort at all. I selected Boots No7 body bath wash, a gift from my ex ex boss Julie and realise that as we have been having baths lately Steve’s skin has been exposed to different products, could this be the cause of the excema? Then I remembered that one week Richard did the shopping and he brought the wrong fabric softener and I told mom not to use it but it did get put in the cupboard. Turns out Rebecca, who hadn’t been told about not using the fabric softener has been using it.

Now it’s great that we now know why Steve has been suffering but it does mean that every single item of clothing of his has to be re washed as he reacts so badly to any bio product. Poor Rebecca as she didn’t know.

Crisis sorted and bath over we sit and chat in the kitchen but now the tumours in my neck have started to really hurt. Just a few hours ago I had told Emma how they had gone down and now they are swollen again and aching. So I am sat with my head to the right, my back is aching badly and my right leg is still sore too. Steve is ready for his bed, he tries to hug me and tells me he loves me and the tears just fall slightly as he holds me gently, I just get so sick of the constant pain and it seems as soon as one part of my body stops hurting another one starts apart from tonight where all tumour sites are having a party but I’m the one with the hang over!

Steve goes to bed as I tell him I’m fine and that I’ll take my last painkillers of the day and then I’ll come to bed. So at midnight I take my last 2 paracetamol for the day. At 1 am I take 2 of the Amtripline tablets and at 1.30 am I decide I have to try to sleep. Marina gave me some good advice the other day on her visit which was to take a syringe of oral morphine up to bed with me and then if I wake up in pain I can just lean over and take it which will hopefully let me sleep again. Knowing the pain that I’m in I do this and head off to bed with oral morphine and my pink hot water bottle.

I try to sleep I really do but the pain will not go away, it’s so hard to even describe the pain. It’s just this constant deep ache that I can’t escape from. At 2.45 I reach over and take the oral morphine and wait for the release from the pain, now I only take 2.5ml but sometimes it’s just enough to take the edge off and so I hope for sleep. at 3 am I can’t stand the pain anymore and I go downstairs to take the other half of my allowed 5ml in any 4 hours. So it’s 3.30 am I have enough drugs to kill a small animal and the pain still rages. I know that I need help and tomorrow I’m going to call Marina again as the drugs are just not working.

So I’m sat alone with another 3 hours before I can take anymore pain killers, the pain is not easing and I dread the next 3 hours dealing with pain alone. I then remembered my gift from Mary Poppins, the TENS machine. It’s worth a shot I thought. So I grab the box and the contents of pads and wires fall out. Now I’m not good with electrical stuff and I never read a manual, so I’m not even confident that I can operate the thing but hey I’ve got nothing left to help me so I have a go. Firstly it doesn’t come with batteries so that’s a 10 minute quest to find some. There are 4 pads and it looks simple enough so I try to attached the pads to my skin, they go everywhere apart from on my body, they stick to my dressing gown, my hands and my new Pjams from Lorraine and then eventually they stick to my back and hip. Right hand side done I turn on the machine at level 3, the recommended setting for back pain. I attached the other two pads after with the same trauma as the right hand side and off we go. But the right hand side is the only side that will work so I leave it for the 30 minute setting and then go through the trauma again of moving the pads to the left hand side of my back and sit for the next 30 minute cycle. The pulsating electric current helps takes my mind off the background aching of back, hips and legs. So thank you Mary Poppins I’m now covered in sticky stuff and there is a buzzing electric pulsating sensation helping my back pain. The manufactures have missed a trick, they should have a third outlet from the device as a vibrator cos that’s what all the buzzing and pulsating is making me think of.

At 4 am I set up a bed in the chemo gazebo and I lie with the TENS machine buzzing away, it’s okay but I’m still in pain. By 5 am I have had enough and take another dose of morphine, now I know I have taken this an hour too early but I just need a release from the constant pain. This works and I finally sleep until 7.30 am. Wow 2 hrs sleep, 2 hours of no pain, 2 hours escaped but now I’m awake again and the pain continues.

At 9 am I call the Ian Reenie help line to get a message to Marina. She returns my call within 10 minutes. She says that she had been thinking about me. I really do feel cared for by them, genuine care and support. We discuss my pain and I am going onto slow release morphine tablets to take throughout the day. On top of the other drugs still but to turn down the ibofphen to 600mg tablets. Marina doesn’t know but tears roll as I speak to her, it’s just such a relief to have her and the team on my side.

10.30 and Gemma arrives from Ian Reenie, she isn’t a nurse but wants to use me as a case study for the website and for press releases. We go through my journey, the blog, the book, my video’s and she also meets Molly and Tia the ungrateful rescued cat. I have told her that she can use and abuse any of me at anytime as I just want to raise awareness and help people, if that means press coverage then so be it. I’ve shared my naked bum, my abuse stories, my grief and shitting myself with the world already so I really don’t care anymore I just want to help others. I want equal screening in England, I want doctors to stop telling people they are too young for cancer, I want to stop people dying unnecessarily and I want to spare any other family the worry and upset that cancer brings to their loved ones. Not alot to ask for is it but at the moment it seems like it is.

Steve has been out to do the weekly food shopping before he starts work and with Gemma gone we have a quick bite to eat before this afternoons entertainment of blood tests and a meeting with Dr Weaver my oncologist.

After bloods taken ahead of chemo cycle 2 on Monday and our appointment we have spent the last 3 hours at the hospital. So I’ll fill you in tomorrow with all details as it’s now 7 pm and I know you will all be wondering where today’s post is. Enjoy your Friday evening everyone whatever you are up to, go pick some daisies xx

 

 

Yesterday’s post went up and I was pleased that you all liked the name ‘Daisy Den,’ thanks Paulette for the suggestion. I am intending to pick lots of daisies in there to see me through the dark cold English winter and my daily battle with cancer and the treatment side effects. How can anyone be down if they are surrounded by girlie soft furnishings, love and daisies?

Now in our house I am the impatient one normally, it’s me who drives things to be done as soon as possible but now it’s Steve who has taken on this role and ‘Daisy Den’ planning has already brought sunshine to our lives. He has even downloaded the video on how to build it. This has to be his job as they wanted an extra £500 to assemble it and Steve is more than capable, I may however have to rope my son Richard into helping over a weekend but he doesn’t read my blog so it will be a nice surprise for him. Why doesn’t he read my blog I hear you saying, he says it makes him too sad. We all have to deal with this disease in our own way hey.

So as I had to get on with my project work today, mom did tea for us, Shepherds Pie which was lovely. My mom and I only ever argue over one thing, well if I’m honest we are chalk and cheese and could argue over everything lol but the one thing we do disagree on is potatoes! Why? I hear you saying again, we just cook these poor defenseless root vegetables very differently and it’s ‘potato wars’ at most meals. Now all I said whilst enjoying the meal was ‘did you actually use the potato masher or did you just wave it across the top and show the potatoes the implement?’ I may have also said that like the Titanic I kept coming across iceberg shaped lumps of potato. My mom tells me to just mash them down with my fork. Now I may just of made just a few more comments whilst Steve and Rebecca eat trying not to get involved. Now at some point I just happened to look at my mom and her face was telling me that I was about to be wearing my mashed potato any minute, whoops she looked both sad and hurt.

My mom is over 70, she comes down every week, she does all my ironing, she washes, she cooks meals, she does the housework, she goes shopping for me, she walks Molly for me and even yesterday with the non stop rain she took Molly out for her daily exercise. Now she does all of this through love and wouldn’t change it but on top of that she has the worry as we all do of the cancer, the treatment, the side effects, the daily ‘will this new chemo work’ worry on top of everything else. So mom I’m not sorry for insulting your mashed potato and we will always continue to be the way we are but I do forget to appreciate everything you do for us and I do love and appreciate you, honestly I do but in future let Steve do the mash please LOL.

I had a phone call yesterday evening from Gemma, she works for the Ian Rennie Charity who are looking after my palliative care and working with me and my doctors to control my pain. This wonderful service that they provide should be provided by the NHS but don’t even get me started on that or the nurse funded Macmillan charity. Anyway she wants me to be a case study for their website and for press releases. We had a lovely chat and I did warn her that I was outspoken but she had already been warned lol. She has started reading my blog and is coming to see me on Friday morning, how fabulous is that? I am honoured that they want to do this, that my story may just help others which is what this is all about. To educate others, to stop people dying of this disease, the sad stories of young people being misdiagnosed always break my heart as it’s not right. Anyway I’ll let you know how that goes and of course she will have to have her photo taken in the famous chemo gazebo.

In other wonderful news I have to thank Mary, Anne and the team at my local BHS store as on Saturday they are fund raising for me and so on Saturday morning I’ll be delivering them one of my Lemon Drizzle cakes to support them. I’ll have to do two cakes cos Steve won’t be able to cope if there is no cake for him. If you are out and about in Wycombe on Saturday go see them and say hello to the Wycombe BHS team, thanks girls and boys it’s appreciated so much.

Thank you also to Paula, Ray, Ian, Andrew, Trevor, Paula’s mom and dad and Ian who are all joining us on the 26th September for the big awareness and fund raising day for the Beating Bowel Cancer charity in the Eden Centre in High Wycombe. Sex Kitten and BFF Leanne will also be joining us. The Ian Rennie nurses too. Ian is organising a rota (you can tell he is a political agent and used to organising a campaign). Anyway if you are about on the 26th too please come and say hello. I’ll be the one in the wheelchair whilst BFF pushes me around in practice for the conference, she will love this as she will finally have control over me haha.

Well that’s 3 1/2 hours sleep then, better than yesterday. I awake at 4.50 am with pain again. I can’t take drugs until 6 am so once the routine of feeding the animals, 1/2 biscuit and a fag is done I arm myself with Linda’s hot water bottle and sit it out until 6 am. Now just back to the animals, well my animals why is it that Tia (the ungrateful rescued cat) likes dog food and Molly likes cat food? Or is it that animals are like us humans in that we always want what we can’t have? Food for thought, excuse the pun.

This morning the pain just got too much for me again and so I hit the morphine. I slept for two hours which was lovely (a break from myself and from pain) I woke up to two wonderful things. Lorraine sent me a Pjams set which is lovely and I’ll be wearing them tonight, I’ll look very posh, thank you so much Lorraine. I have received a £50 donation from the Lib Dem group on Bucks County Council and they left Steve a lovely message too so thank you to Avril, Raj Ditta, Steve. The grand total of fund raising is now at £2655 which is just fantastic, thank you to everyone who has contributed to this.

Steve is as ever concerned about my pain, we know we have to give the new regime a chance but the constant pain is so hard to put up with. He gives me 800 mg of Ibuprofen and this on top of the morphine finally takes the pain down to a dull roar however I now have lost the ability to use my right leg. I walk dragging it along behind the rest of my body, it’s like it’s gone to sleep and just won’t work. Some days you just can’t win hey. We fix one pain and another pops up, I’m beginning to think that my body doesn’t like me very much.

I then get a text from Emma (from my BHS Kingston Family) she is popping in to see me today 🙂 Emma came and spent a lovely few hours with me, it was so lovely to see her again, oh how I miss her, my team, my life and the fun we all used to have. I have shown Emma all of my soft furnishings for the ‘Daisy Den’ and she definitely approves, praise indeed. She has been challenged to join in with the bum photo calendar with the my BHS family in Kingston so watch out guys cos on Monday Emma will be sharing my vision with you and looking for recruits. Emma left and I collapsed into a 2 hour sleep and I’ve only just woke up but it was lovely to escape from me again for an hour or so.

I have to share this with you. Karen tagged me in this on Facebook and it articulates beautifully how I think I look at life and I believe we should all look at life, don’t be a victim. Anyway have a read and ask yourself are you a carrot, an egg or a coffee bean?

A young woman went to her mother and told her about her life and how things were so hard for her. She did not know how she was going to make it and wanted to give up. She was tired of fighting and struggling. It seemed as one problem was solved, a new one arose. Her mother took her to the kitchen.
She filled three pots with water and placed each on a high fire. Soon the pots came to boil. In the first she placed carrots, in the second she placed eggs, and in the last she placed ground coffee beans. She let them sit and boil without saying a word.
In about twenty minutes she turned off the burners. She fished the carrots out and placed them in a bowl. She pulled the eggs out and placed them in a bowl. Then she ladled out the coffee beans and placed them in a bowl. Turning to her daughter, she asked, ‘ Tell me what you see. ‘Carrots, eggs, and coffee,’ she replied. Her mother brought her closer and asked her to feel the carrots. She did and noted that they were soft. The mother then asked the daughter to take an egg and break it. After pulling off the shell, she observed the hardboiled egg. Finally, the mother asked the daughter to sip the coffee. The daughter smiled as she tasted its rich aroma. The daughter then asked, ‘What does it
mean, Mother?’ Her mother explained that each of these objects had faced the same adversity: boiling water. Each reacted differently. The carrot went in strong, hard, and unrelenting. However, after being subjected to the boiling water, it softened and became weak. The egg had been fragile. Its thin outer shell had protected its liquid interior, but after sitting in the boiling
water, its inside became hardened. The ground coffee beans were unique, however. After they were in the boiling water, they had changed the water. ‘Which are you?’ she asked her daughter. ‘When adversity knocks on your door, how do you respond? Are you a carrot, an egg, or a coffee bean? Think of this: Which am I?
Am I the carrot that seems strong, but with pain and adversity, do I wilt and become soft and lose my strength?
Am I the egg that starts with a malleable heart, but changes with the heat? Did I have a fluid spirit, but after a death, breakup, financial hardship or some other trial, have I become hardened and stiff? Does my shell look the same, but on the inside am I bitter and tough with a stiff spirit and hardened heart?
Or am I like the coffee bean? The bean actually changes the hot water, the very circumstance that brings the pain. When the water gets hot, it releases the fragrance and flavor. If you are like the bean, when things are at their worst, you get better and change the situation around you. When the hour is the darkest and trials are their greatest, do you elevate yourself to another level? How do you handle adversity? Are you a carrot, an egg, or a coffee bean?
May you have enough happiness to make you sweet, enough trials to make you strong, enough sorrow to keep you human and enough hope to make you happy.

The happiest of people don’t necessarily have the best of everything; they just make the most of everything that comes their way.
The brightest future will always be based on a forgotten past; you can’t go forward in life until you let go of your past failures and heartaches.
When you were born, you were crying and everyone around you was smiling.
Live your life so at the end, you’re the one who is smiling and everyone around you is crying.

I hope you enjoyed that as much as I did.

#Squirrelgate – there has been no sightings in two days which is just probably down to the weather and the fact that I wasn’t able to get outside. Maybe the mighty erection and building works that will be happening over the next few weeks will scare the squirrel away, I do hope not as I will get evidence of the ball nicking pest yet.

 

 

 

Yummy tea and cake was had by all as BFF Leanne came round. I could taste food again which has been a problem for over a week now, so happy to have my taste back that I think I have eaten my entire body weight in cake! It was lovely to see Leanne as I should have seen her at the weekend but as you all know I ‘hit the wall’ and I didn’t go the the planned function.  So we didn’t stick to the family curfew time last night as I was excited to hear all your views on the ‘Name of the Log Cabin game’ and so I started my favourite game of ‘wack a comment’ early.

Now lots of you voted for Wendy’s House’ but sadly due to the Trades Description Act of 1985, section 3, paragraph 6 it can’t be named Wendy’s House as it’s not a house by definition. So that’s the trades description legal action covered off, plus I didn’t like it LOL. You will have to read until the end of this post to find out the new name.

At midnight Steve goes to bed and I search the net for soft furnishing and start to plan the interior decor which I enjoyed doing. At 2 am I took the increased dose of Amitriptyline and at 2.30 am I head off to bed.  Amitriptyline is actually a sleeping tablet but it is known to tackle nerve pain too. I was told by Marina yesterday that it may take a few days to work. Sleep was again not easy due to the pain and at 4.45 am I am awake again and in pain. I can’t take any pain killers until 6 am so I hit the oral morphine not only for the pain but the hope that I may fall asleep again but no that didn’t work either.

At 5 am before sunrise I set up my bed in the chemo gazebo and lie hoping for the pain to ease and sleep but no that didn’t work either so it’s now still dark, 5.30 am and I’m starting my days ramblings. At 5.45 I take my 6 am pain killers and I hope to sleep soon. I not giving up on the new drug schedule as I have to give it time to work.

So back to some bits I missed from yesterday’s post

Drugs – now when I spoke to Marina about what I was taking for pain I shared my frustration of always taking tablets and one drug is taken to combat another. For example as I was taking cocodamol which slows the body right down I then start to bloat and I have to take laxatives. She agrees for me to stop the cocodamol and the new drug regime is now alternating every 3 hours between 2 x 500mg paracetamol and 1 x 600mg Ibuprofen with 2 x10 mg of  Amitriptyline at night. Oral morphine is used throughout the day and night if need for break through pain, hence me hitting the morphine so early today.

Frankie update – great news from her (Rita your prayers are being answered) and this is the email I received 2 days ago.

Hi Wendy,
So pleased to hear from you and to know they’re getting your new chemo sorted. I do think of you so often and hope that the pain you were suffering is now under control. Sorry to hear about your lovely hair – you’re such a stunning. Lady so,time for some flamboyant headgear when the times right for you. Time to make a statement and you can carry it off.
I had a CT scan and my first review which was very positive and reassuring. They’re not sure now whether the metastasis on the lung are indeed lesions or just scar tissue as not much has changed there, but the liver is showing no increase in number and the ones there appear to be shrinking. The bowel is more difficult to see, but the radiologist suggests that the bowel wall is thickening again which is a good sign and there is no further deterioration. I came away feeling very positive and ready to fight a further 4 sessions. I have found chemo 4 the most difficult and even this chemo free week I still feel so tired and lethargic. Everything seems such an effort, but then I’ve been in and out of the chemo wards with scans, interviews, PICC lines and flush apps. This Wednesday I’m back at Wycombe for a blood sample and flush then Friday chemo 5.
The PICC line as you said took far longer than I had anticipated, but it’s fine. Just a pain having to go to the hospital every Wednesday for a flush through, but then if it makes my life less stressful every Friday Chemo day then it’s worth it. Last time they took half an hour to get the line In and I’m still bruised!!
Had a great Birthday day with lunch with friends and a family lunch on Sunday with Barns, Lara and the boys. Always love their cuddles – makes my heart sing and know all I’m going through is so they can spend time and be naughty boys with Granny!! I’ve booked my train ticket for the 29th September to Cornwall so I see Jess and Tally for a week. I’m so excited to see them both settled into their new home and life.
Take care my friend, keep positive and never loose your wonderful sense of humour – it’s a necessity in order to make our brains laugh and chase our demons away.
Xx Frankie

Thank you to the anonymous donation of £20 yesterday whoever you are I appreciate it and thanks to Sheere Lee another member of the BHS family for your donation too. We have now raised £2605 so far towards supporting a fantastic charity.

Talking of charity don’t forget the awareness day on Saturday 26th September in the Eden Centre, High Wycombe from 9 am – 6 pm . Marina from the Ian Rennie team has said she will come and help. Mary from the High Wycombe BHS store is also going to come for a few hours on her day off. Sex Kitten may come, oh and Cath you can bring the kids with you and they can join in the fun by wearing the funny bum shorts. Anyone else who wishes to join us for whatever time you can spare is greatly appreciated.

Thank you to those of you who have sent in your calendar photos it’s really coming together and is Steve’s little project. Please send them through to him as soon as you can so that this can be completed and we can start to take pre orders in time for Christmas. what a fabulous gift this will make for your loved ones and it raises money for Beating Bowel Cancer too. Steve has a marketing plan for it so please get the photos in to him, thank you.

The petition is going well and it is now being signed by people who I don’t know which means that your friends are signing and sharing it, excellent. If you haven’t signed it yet go to http://tinyurl.com/oz3pq7a and then please share it with your friends to sign. We are only asking for equality in screening for bowel cancer from the age of 50 like they do currently in Scotland.

So enthused with the log cabin coming mom and I head off this morning to buy soft furnishings. We went to Dunelm in Reading as they have daisy style bedding. All disabled parking was taken but to be fair to them they did have wheelchairs available at the front door. This is good as I took mine with me but mine has to be pushed, theirs you can wheel yourself. I’m now completely broke and brought everything with a daisy on it. Bed linen, throws, jugs, biscuit barrel, cups, love hearts and much much more. I’m so excited now and my dining room is now full of all the soft furnishings for it. Here is a picture of the bedding from the range, we of course have matching curtains too 🙂 nest building is so much fun, or is that just a girl thing?

Last night when BFF Leanne was round for dinner we discussed if I was going to be able to attend the BHS Autumn Winter Conference which is on 30th September this year. So due to my bad night of sleep I sent Amanda (HR) an email at around 6 am saying that I would love to come but I would need so much help that if it was too difficult it didn’t matter. I wouldn’t go and I wouldn’t be offended. I have again been so supported by by BHS family it just amazes me. They are letting me stay the night before in a disabled room so that I can be okay for the actual day. As hubby will have to drive me they are also letting him stay with me the Tuesday night so that he can help me get settled in. Thank you so much Amanda and James at HO who are helping me to be part of the company that I am so proud to work for. You both made my day, that and the daisy soft furnishings 🙂

And finally the name of the log cabin will be……………… ‘Daisy Den’

Thanks for all your votes on the name and some of the wonderful other suggestions which made me laugh were, She Shed and Poo Corner LOL

 

 

 

Oh how I love you lot! Yesterday’s post goes up and within the hour you are all at it (ooh er missus) I mean the name game for the log cabin. Somebody even tells me off for listing some of the best ideas! I read some of the suggestions to mom and Steve. Steve then comes up with ‘The Blog Cabin’ which I loved or perhaps “Blog Lodge?’ And then Paulette sent me the suggestion of ‘The Daisy Den’ as she thinks it’s more positive. Rita and Tammy like ‘Wendy House’ so here is the shortlist and I thought that I’d let you all vote. Tomorrow I can reveal the winner, but sadly there won’t be any prizes like a free holiday or family car, we just don’t have the budget lol.

The short list: Blog Cabin, Daisy Den, Wendy’s House, Blog Lodge

Now the messages start flooding in with ideas of parties in the Log Cabin during winter. Hilary has ideas of mince pies, mulled wine and of course our favourite Stilton and port, sounds great to me. This starts Steve off again and says that we could open it up at Christmas for the local kids as a Santa’s grotto and that Molly could be dressed up as a reindeer (Molly seemed unfazed by this idea) Then he thinks we should get a local celebrity to officially open it when it’s complete, all this is making me laugh. Then mom reminds me that everyone will have to have their photos taken again as it’s now going to replace the due to retire Chemo Gazebo. You all start thinking the same and messages start flooding in with excited outfits planned and re-visits to our home for the first photo opportunities. What are you lot like? I love it.

My mom says that a photo should be taken of the old chemo gazebo as all photo’s are taken from the outside looking in and people don’t really know what it’s like. I think that you will all be disappointed as it really is only a £20 cheap gazebo from B&Q that Steve brought as a prototype to see if it worked for me throughout the summer, he never dreamt of it’s untold fame. Photo’s will be taken for you as I also want the memories. It is now on it’s last legs and the winds yesterday have bent the cheap metal legs even more, it’s tied to bricks but it really is heading for it’s end of days 🙁

I suggest that we should invite Dawn French to re-enact the nativity scene in from the ‘Vicar of Dibley.’ Steve start looking out of the window and I ask if he is looking for the ‘Star of Bethlehem’. Mom then gets excited about outside lighting and filling the garden full of lanterns and Christmas tree style lights. All excellent ideas. We are going to take lots of photo’s during it’s construction so you can all be part of the mighty erection! I even suggest that a naked bum shot of it being built should be in the Christmas Calendar, well why not? Steve then reminds me that I haven’t warned the builders about my blog and that poor Frank will be in for a shock as if he does a bad job the world wide web will be his audience never mind trust a trade reviews hey!

So curfew time tonight, yes we still do it every night. Last night was a game called Boggle, have you played it? It’s a good word game and Steve of course wins but Rebecca came second. We played in the dinning room and I asked Steve what the measurements were of the room to get an idea of the interior size of the log cabin. It’s going to be bigger than my dining room at 14×10 so a mighty erection indeed.

Last night I spent an hour chatting to Jani from Beating Bowel Cancer. She has been a constant source of information and support. She is angry at the prognosis that I have been given as she feels that it contributes to your mental ability to cope in dark days on chemo, she is right of course. She also like me despairs at young lives being lost as doctors miss the diagnosis of bowel cancer so often and people die too young. How do we educate people? She believes that hard hitting posters with true life stories is the way to go. I agree as nothing stops you in your tracks more than hearing about a 26 year old girl who dies 8 months from diagnosis as she was being treated for IBS by her doctor.

Steve is going into the office today whilst mom is down for a break from me and the stress of looking after me. I have a lovely chat with my dear friend Lorraine for about an hour. She requested the poo test at her doctors and her doctor was shocked that she had. She was told that in England we don’t screen until 60 years of age and that they don’t do this earlier as they don’t like to uncover health problems!!! This is a disgrace! My ex ex ex ex boss Dorothy Goswell from Debenhams once said some very wise words to me which I have never forgotten and which I repeated to Lorraine today, here are her wise words. Every year we don’t think about spending £100’s of pounds on our cars so that they are in good working order and they have an MOT so we do we view our bodies differently, shouldn’t we all have a health MOT? Lorraine agreed as Ant her hubby is a London Taxi driver, a good point well made I think.

With a visit due at 10.30 from an Ian Rennie nurse I decided I should at least have a shower. Now normally I have Steve to help me but I’m on my own today (well there is my mom but I spare her the pleasure) Most people go to the shower/bath with a rubber duck and girlie smellies, me I go armed with cling film and masking tape. I have to cover my PICC line and keep it dry. Now there’s a challenge that should be in a game show, wrap an arm in cling film with only one hand, hilarious! I manage to get it covered and I head for the shower. now we need to talk body hair here, so men stop reading. I used to wax and at least keep my hedges trimmed (if you get the analogy) my garden is so overgrown and it’s taken on an 80’s style which would actually be long enough to plait. Oh the shame of it. So armed with hedge cutters (a razor) I start pruning. Now although the tumour in the right side of my groin has stopped hurting the area is still completely numb to the touch, this makes the job very hard indeed as you can’t feel the pressure you are applying. So I’ve had a go at it anyway and feel less overgrown but I do miss the simpicilty of being waxed. Oh well if I lose my hair at least this won’t be a problem hey.

Marina came at around 10.30, good job I had just had a shower as I looked a bit of a state before she arrived. She stayed about 1 1/2 hours and of course she had to have the famous chemo gazebo picture shot. She was like Suzanne completely lovely and supportive beyond belief. We put the worlds to right on Macmillan and the NHS. She has altered my drugs to help with the pain and this will please my mate Jani from Beating Bowel Cancer who spent an hour with me last night discussing pain relief options. Suzanne told her all about me and the blog so she is prepared for me and has read about my weekend of despair. She is also a fan of Peter Andre so she has passed all the tests now 🙂 She isn’t Irish like Suzanne but I think that Rita would still approve.

Must leave you all now as I have a coffee and walnut, lemon drizzle cake and Pork schnitzels to cook as BFF Leanne is heading to us for her tea, yum yum

I managed to catch up on all your lovely comments left on the blog from over the weekend, 83 emails and over 50 Facebook messages all filled with love and support which I really appreciate, so thank you all so very much. Some of which really touched me. Mr Grumpy Bum, thank you. Michelle thank you for supporting Steve. Paulette you really understand my love of you all and how important the blog is too me. Tracy who is on holiday who should be swimming naked and not worrying about me at all. All my family and close friends who show unending love and support. Plus my BHS family including the very special Mary Poppins. I also loved Tony’s message which just repeated the word ‘fuck’ this made me laugh and although rude sometimes there are only a few words that can express anger and ‘fuck’ really does fit some situations in terms of expression.

All this takes me until 1.30 am and with the last day’s drugs taken I head off to bed, hoping to sleep for at least 4 hours, but no awake again at 4.50 am with the pain. So the usual routine of animals fed, coffee, 1/2 a biscuit and a fag, you all know the drill and by 6 am I start work, my project work. Two hours later and I have finished Harrow’s peak planning, now I’m chuffed with myself but as Steve is due to start work at 8 am and I’ve just done two hours concentrating I now need sleep so it was the briefest of morning greetings and then sleep again for me.

I wake and I’m starving, the chemo slime mouth is easier today so I even cook breakfast, the works, bacon, sausage, hash browns, grilled tomatoes and baked beans for Steve too (evil food, baked beans). I feel okay and happiness has returned to the house. Steve is happier and always says that his mood is linked to mine and if I’m down he is down. Steve says that he understands my down days and it’s a real known side effect of chemo but I must not give up as if it was him, he would take anything and any drug just to spend one more day with me, how lovely is that! Bless him, plus he reminds me that no insurance will pay out on suicide so for the sake of my loved ones and my kids this option is now gone forever.

Mom returned to us yesterday and she was unsure of how she would find me in terms of mood. Last night we chatted about depression before Rebecca returned from her dad’s. I told my mom that I’m not depressed, suicidal maybe sometimes but I’m not depressed. Mom is relieved that my mood has lifted. We have a very open discussion about my quality of life and my prognosis and Mom understands me in terms of I’m not living. The active full of energy, married mother holding down a full time job has gone and replaced by a woman who relies on others for everything. She can see how this disease is eating away at me as Steve can. It can take my body but I’m not letting it take my spirit and so I’ll bloody well keep going for as long as I can. Being down would mean that it was winning and I’m not having it win one battle that I can actually fight!

Rebecca returned home and she brought me flowers and chocolates, bless her. She had read my blog and wanted to cheer me up, her returning home did that but the chocolates were lovely too. Richard also was worried as I send him a message every day, so for me to not contact him for two days or not to take/reply to his calls is really out of character. So Steve and I do a Facetime call with him and despair at the Villa local derby result, shocking!

Now today’s post is called ‘A Wendy House’ because an extension of £20k is just not going to happen and I’ve found out that I can’t just cash in my pension. This is not possible until I am 55 years old unless I am retiring on ill health grounds. So we have decided to buy a log cabin for the garden to see me through the winter, how exciting is that? Our own den, sheltered from the elements and I can stay almost outside and not stuck in the house. I’m super excited as this gives us something to look forward to, to plan and arrange. Now we don’t have the money but my lovely mom has lent it to us so that we can get the project started and this will give us all a sense of purpose, something to look forward to and most of all for me a quality of life, my own den :-). We will pay mom back over 6 months so thanks mom for the interest free loan. Bank of Mom is now closed and no other applications will be considered for 6 months LOL. Now Steve is already planning to pimp it out, it will have full electrics, internet etc plus a path to it and mom can plan the flower beds whilst I plan all the soft furnishings, perfect. Richard will take over whenever he is home and move into it as he is already excited and wants a TV installed too.

I only have a picture of the log cabin to show mom so I decide that she needs to see them. We head off to Bourne End which is only about 6 miles away and I decide to drive. I haven’t driven in weeks so I’m pleased that I can. I can’t walk without my stick but my legs are stronger today and I can drive. Mom having seen the cabins is sold to the idea. So thanks to the builder Frank who came to see us this morning, the platform is going down on Monday and we only have to wait 4 -6 weeks for the log cabin to be delivered. Steve wants to name it 14A Conegra Road or Wendy’s House, I’m not sure it needs a name but the chemo gazebo will have to go as it won’t last an English winter 🙁

As we are about to return home I received a text from Helen to say that she is coming for coffee at 1.30. Excellent as I haven’t seen her for a few weeks. Helen is a wonderful person and a devoted mom. She sadly lost her son Joseph recently at the age of just 18 years old. There is a post called ‘One day at a Time‘ which details the funeral and the pain of grief of their loving family. We spent two hours catching up and the lovely Hilary turned up at 2 pm with Sticky Toffee Cake as promised before they set off on holiday. Thank you so much Hilary the cake is delicious.

With Helen coming round mom and I discussed her on our way home from the log cabin viewing. It worries me that everyone has become my carer and using Helen as an example. I can talk about how does it feel to go from being that carer, provider, nurturer for whatever time it is and for whatever relative to the void that losing that person brings? I worry for Helen, 18 years devotion and love to her child who due to the nature of his disabilities was completely dependent on her for everything. She wouldn’t change her life or one single moment that she devoted to Joseph I know that but I also get the sense the void that losing Joseph has left for her and Tom.

As soon as Helen had left I needed sleep and settled in the chemo gazebo with Linda’s hot water bottle, quilt and my throw blanket but the weather closed in and I had to come inside. This made me sad but it is only for a few weeks until I can be all safe and warm in my log cabin 🙂

Just going back to last night I had a private message from someone who said that I didn’t know her but she reads my blog through a mutual friend. She was wrong, turns out we do know each other, my mom has photos of us together as kids and the reason we knew each other was via The Crestwood School as she was friends with my sister. I sadly had to tell her that Julie had died aged 25, she had no idea. I will get those photo’s to you next time I’m at my mom’s house Nita, promise.

I need to thank Jani from the charity Beating Bowel Cancer as on Saturday I had an envelope full of daisy stickers delivered for my chemo gazebo but I’m going to save them for my log cabin. I do need a name for my log cabin. What about ‘Chemo Cabin? or ‘The Drug Den’ or maybe even ‘Blog Cabin’? I’m open to all suggestions you may have.

#Squirrelgate – So Tia (the ungrateful rescued cat) and Molly have joined forces against the squirrel. They have become grudging allies against the intruder. I don’t have evidence but today they both chased a squirrel off the garden. Helen almost saw the squirrel this afternoon in the tree but it wasn’t a confirmed sighting and it may have been ‘Pete the pigeon’ who visits the bird table in the garden but I’ll keep you all posted on sightings. Maybe in my new log cabin I may just get the evidence of the ball snatching pest!

 

Thanks to Rita who following my miserable weekend has burned the church down again yesterday with prayers for me and others. It’s working Rita, thank you so much and the old me is slowly returning 🙂

 

 

As soon as Leanne from Beating Bowel Cancer left on Friday I slept. I woke having had a non chemo sleep and felt low but as Rebecca was going to her dad’s and Steve and I were going to be on our own for the weekend I thought I’d start the weekend off with a take-a-way curry as a treat. We haven’t had one for a while. The curry came but I couldn’t taste it, I know what it’s supposed to taste like but as Frankie puts it it’s ‘chemo slime’ which is hard to describe how horrible it is day after day, it’s just not funny. Rebecca left as my mood just sank even lower and lower. The last day and a half have been a bit of a blur if I’m honest but here are some of the details I remember.

The constant pain, fatigue, feeling sick, having the shits and I’m just so sick of feeling ill. I spent most of Friday night into Saturday just wanting it all to end, for it all to be over. The peace that death may hold is too tempting. If I’d have known what to take on Saturday night I think I would have done it but knowing me I’d do it wrong! Steve didn’t sleep either, he was worried that I was going to take too many pills and the endless night of worry continued for us both. Saturday morning Steve sat with me in the chemo gazebo, tears in his eyes ‘don’t leave us, don’t do anything stupid’ he said, ‘there will be good days again.’ I just sat and let the tears roll too unable to speak for the depth of my despair.

Everyone thinks that I’m strong that I can fight this disease. The truth is that this disease is at times killing me in terms of my spirit and soul. Endless days, weeks and months in pain. I can walk about the house bent double like an old woman but outside the house I have to use a stick and the wheelchair is becoming an item that I know I need but I don’t want to admit it. Just simple tasks wear me out and breathing is laboured. I ask you is this living? I know it’s partly to do with the drugs they gave me on Monday but the thought of having to go through the side effects another 11 times is just too hard for me to even contemplate. And for what? To spend whatever time I have left, which isn’t going to be long if this chemo doesn’t work being a burden to my loved ones. I rely on everyone to do simple tasks, I can’t even do housework. Cooking a meal is shared and when I do help it exhausts me.

We did try to take Molly out in the afternoon but I struggled to walk, We sit in silence for over an hour in Moo Moo Land on a bench. I can’t even bring myself to speak that’s how low I had become and my every thought was just of ending it all and how could I do it. How does all this affect Steve, watching me sink lower and lower not being able to reach me, to pull me back. He feels that he is failing me, but that’s just not true, he is amazing, it’s me that is failing.

Steve has put me back on the routine of every 3 hours taking drugs to control the pain. I just lie in the chemo gazebo in a zombie state waiting for the next lot of drugs to come. I even ignore texts from my kids, I am just not strong enough to pretend I’m okay anymore. Steve is suffering so much and I can’t bear that either, I think about just disappearing leaving everyone, giving up treatment and just going off to die like cats do. But I don’t have the strength to drive anywhere and so I forget that idea. I don’t want people to see me like this, a mess. I don’t want to hurt my loved ones anymore.

We were supposed to be going out on Saturday night so I sent a text to say I’m sorry but we are not going to make it but it’s done with a heavy heart as I would have loved to have gone. To see people, to chat, to be happy, to be normal. Normal oh how I long for life to be normal. I lost normal on 26th January and I wonder when if ever I will feel normal again.

I also feel the guilt of all the worry I have caused to people who support me everyday, special people who text and send me private messages or emails just to cheer me up everyday. Just showing me how much they care and I turned my back on you all in my misery and I’m so sorry. I just couldn’t face pretending anymore. Doing the blog and having a purpose to my day has always been a source of strength. I however when I go down go within myself and shut the world out, I’m sorry.

I woke this morning with a sense of ‘fuck it’ you are not destroying me attitude. I try so hard to be more myself but it’s not easy. No wonder 40% of people don’t complete chemo it’s just so hard and I only have another week until my hair falls out, oh the joy of life hey!

So forgive this post being short but I wanted you all to know that I’m okay and I’m trying so hard to be brave and strong.  Steve and I appreciate all of your love and support, Steve I know took great comfort from you all over the weekend, just lovely to know so much support is out there for us.

I will catch up with all the emails and comments you have left for me as soon as I can. I just needed some time to get my head straight and as I would say to Richard ‘man up’.

Anyone who knows long term pain, depression, illness or cancer will I hope understand how low you can go inside yourself. To wish an ending is not an easy thing to think of but not living or living a zombie life of pain and torment is worse. If you are reading this and you are fit and well then go pick loads of daisies, dance, sing, laugh, run, jump or just run down the road waving your knickers in the air as life sadly is too short and there is no price that can be placed on your health and happiness.

 

 

 

 

Sorry Wendy fans, Steve here.

As you all know, Wendy has had several weeks of pain to endure while they switched her chemo. The new chemo (FOLFIRI) began last Monday, and it does seem to be having an effect already: the visible swelling of the lymph nodes in her neck has reduced very noticably and the ones affecting her leg feel better too. On the other hand she still has pain in her back. The downside with FOLFIRI is the extreme chemo fatigue. Whilst this is to be expected, the accumulation of pain and fatigue has really got to her today and she is feeling very low.

We had been invited to a function tonight, and I know how sad she is that she didn’t feel up to it.

Wendy has faced this illness with much humour, and a very positive attitude. Those who already know her will not be surprised – she is a very strong lady. But right now, it has got on top of her and I can’t say I blame her. I know she draws great strength from all the love and support she gets from you every day. She is also heartened that the Equal Bowel Cancer Screening petition has already taken off, and I hope many more of you will sign it.

I would like to thank you all for the support, encouragement and prayers that you give for her. I’m sure she will be back very soon.

Steve