Update after a week, and almost a month into feeling poorly.
I've not felt up to writing on my blog, I'm still feeling much the same as I have these past two and a half weeks.  The first week, three and a half weeks ago, I was a lot worse and in bed the whole week moaning and groaning, and fighting what we think was an infection.  I finished my third round of anti biotics on Tuesday and I haven't got any worse as of today.  I'm not quite sure what I'm dealing with, all I know is that it's new territory, I've no previous experience with how I'm feeling now to know what's wrong and how this will progress.  I spend about 17 hours a day in bed and the rest of the time is spent sitting on the sofa, or Alan and I drive up to the Moors for an hour, or something similar.  I can't do much more than that.  Most of the time I'm queasy and off my 'normal' types of foods that I enjoy eating.  The nights are quite long and disturbed seeing me in and out of the bathroom several times a night and toweling the sweat off in between sleeping sessions.  I feel most poorly around 4 hours after taking Paracetamol and often start shivering at the 5 hour mark with another hour to wait until I can take another dose.  I feel freezing cold at that time, which is usually shortly before my temperature starts to go up.  I find talking draining and can only manage two hours of T.V. in the evenings then I need to get back into bed again.  My bed has been my little sanctuary for almost a month now even though my body feels sore with lying in it for so long.  The ride through my day is very rocky but my bed holds me safe from falling through, because I feel like I'm falling out of the Universe when I'm on my feet.  Yesterday I actually thought I was slipping through this World, it was so real in my perception of reality.  It was our wedding Anniversary yesterday so I thought I'd try and go in one shop, bad idea!  The feeling I experience is different to Vertigo or being dizzy, it's like I just said, I feel like I'm falling through or going to float off.  Every sound of chatter, the clattering of shopping trolley's, every face blurred and surreal, I had to get out of there fast before I fell through.  The drive there itself was invading my senses with noise, braking and speed bumps, I said, "I don't know if I can do this again."  The positive is I don't feel half as bad as week one...

Alan, we have been through such a lot together, since we met our lives have been a huge adventure.  Nothing could have prepared us for the events of the past two years and how our lives would change.  Didn't we cram a lot into our time together, we hurtled through our lives at full throttle.  Hasn't it been good.  We are so close together through this experience yet at the same time we are on opposite sides of the road, we couldn't be further away from each other.  You have been there for me, through everything, every moan, every groan, every tear and every bit of laughter we have shared through these trying two years.  I have loved you, and I will love you, whenever you look for me you will find me... Happy Wedding Anniversary..

Appointment at the Hospice
I met with my Consultant at the hospice yesterday.  She has put me on another week of anti biotics, the other option was going into hospital for intravenous anti biotics.  She is also arranging a C.T. scan for me at the hospital, which will be around two weeks time.  I continue with the same symptoms and very little sleep.  I can't change this I just have to get through each day as best as I can and hope for some improvement.

Tuesday morning - appointment with the Consultant at the hospice:
My temperature is on the up again this evening, time for more paracetamol, open the window in my bedroom and keep the sheets off as much as I can until it cools down a bit.  I have my appointment with the consultant at the Hospice in the morning.  I hope she has got one or two answers for me.  I'm on my last 2 anti biotics, and I hit the two week mark with this.  I'm ready for a day off, let's hope she thinks I'll get one.  At the very least I expect the truth, I deserve that.  Now I'm off to get a grip on these shivers.

Who am I now
Feeling pretty out of it and in bed most of the time apart from this morning when I managed a shower and washed my hair.  I had a long rest before drying it.  Going upstairs to lie down afterwards,  I couldn't get up the last few stairs, Alan had to come and help me.  That's a first.  I don't know who I am, is this the new me, or is it going to pass.  I'm still having regular periods of the shivers and generally am not up to much although I did get up to watch T.V. on the sofa last night for an hour, but I was very glad to be back in bed after that.  Most of the time I rest on my back because my Kidney aches more when I lie on my side.  

Alan took me up on the Moor after I'd had a lie in bed to recover from washing my hair today.  I was very happy to have made it outdoors, to feel strong enough to do that.  I opened the window and felt a tiny bit of sunshine on my face from a March sun that was peeping out from behind the clouds.  I feel like I'm in no mans land, I don't know who I am or where I am in this place.  When I was there on the Moor today with the March sunshine on my face I cried for who I used to be.  I miss me, I miss my life, my freedoms, I miss how I've lived, I miss my relationships, I miss my Grandchildren,.. for all I want to be to them and they to me.  I see their faces all day in my mind and wish I was there living the life with them.  My lovely Grandchildren, I love you all and wish we could have been together all the time you were growing up.  By the time you get to read this in years to come you will have been told how fine you are to me.  I never stop thinking about you and hold your faces and smiles in my heart always.

Another day in bed
I've done two blogs from bed on my ipad which I lost even though I saved them.  I've been in bed all day again today, managing the shivers and the aching in my Kidney which seems to get worse the more I drink.  Lesson for today is don't do a blog on my ipad!  I had another home visit from my G.P. yesterday who told me to continue with the new anti biotics until I complete the second course on Tuesday.  My last water test came back clear before I started the new anti biotics which is a bit confusing really.  My bloods still reveal stage 3 chronic Kidney disease so I may not be having a stent fitted for the time being.  Hopefully my Consultant at the Hospice on Tuesday morning will be able to answer a few questions.  I don't feel much different and it's confusing that both water samples came back clear over the two weeks.  I spend much of the day clock watching every six hours so that I can take some more paracetamol for the shivers and for this ache from my Kidney.  Having said that sometimes I start shivering after the paracetamol.  Not much is making sense other than the fact my body has little to fight whatever I have.  As the G.P. said, it' so busy fighting cancer all the time it has little left for anything else.  What my body would normally brush off it's getting overwhelmed with what it's being asked to do, and don't I know it! 

I thought I was improving a little bit this morning but I'm feeling poorly so back to bed again I'm afraid.  Walking around is proving very difficult and the shivers returned this afternoon.  The paracetamol has calmed them down now and my temperature is 37 so that's good.

Precious Time

I've been well enough to sit up in bed today, and I'm going to have a walk around the house shortly. Yesterday is a bit of a blur. My temperature went up to 39.00 at one point. Every time we got it down for a few hours it would start to climb again. I felt lousy and fed up of all the 2 hour sessions of uncontrollable shivers.  Just after lunchtime I got a home visit from my GP who said he wanted to put an end to, "this suffering". Those were words I held onto for the rest of the day!  He prescribed stronger anti biotics which target the urinary tract and are also for general use.  He seemed to think it's still a urinary tract infection although my cancer Macmillan Nurse said she wanted bloods doing for more investigation. The good news was my lungs were clear.  The District Nurse came out later and took bloods and a water sample.  By 3pm I started the new antibiotics.  Most of the day was spent dealing with the fever and shivering but by 9pm I got up to watch my favourite programme, Masterchef! Shortly after watching T.V. I felt really sick and vomited then crawled back into bed. 

As of now, 4pm, I'm feeling some improvement, I've had an hour out of bed, seen Alan and Jake, and now I'm resting so I can hopefully have a bath. I've had a pretty even day up to now so hopefully these anti biotics are working. I really hope so. My Sister and Niece Face Timed me today and played my favourite theme music to me over the iPad, it was lovely.  After 9 days of these fevers I'm hoping I'm going to the better side of this infection, the get well soon side.

Van Morrison, Precious Time.

Sat up in bed 

I'm sat up in bed where I've spent the majority of the past week. I'm better than I was a week ago but still poorly.  I've taken my last anti-biotic this evening. I managed a night without fever last night, but was sweating a lot as I have for the past four nights. Saturday night I was poorly for a good three hours. I got some relief at 10pm so got up for a while. An hour later I had to get into bed as fast as I could because I was feeling faint. I just got in bed in time and escaped fainting. 

I had some pretty intense and emotional moments during the very poorly session on Saturday evening. I experienced more letting go of parts of me that I can't be anymore. I can't bring back who I used to be, how I used to function, my strength, my life as it was. This journey continues, yet again I have shed what has to go as I walk down my path, through my life. 

I went out for lunch with Jessica today but I was overwhelmed and close to panic at one point. I could barely talk or understand what was being said at times, it feels like I'm being pulled back by something, into something like syrup. Getting ready to go was difficult and Alan helped me get my coat and I hung on to Jessica until we got to the car. I had to try and get lunch out!  When I got home I crawled into bed where I still am.  At least I don't feel like I'm falling here. I'm better than I was though, I have to remember that, my glass is still half full.  Some of what I experienced at my core level this weekend was so profound I kept thinking that I've got to write this down. What I experience time and time again is I know what is there to say but I can't get to it. My thinking and communication process has been affected again these past few weeks. The depth of what I've experienced can't be shared because I can't get to it.  I can experience it, live it and think it but I can't form sentences or verbalise.  Like now, if I read back what I'm typing I can't tell if it's confused by me using the wrong words in the wrong places.  It is a bizarre feeling.  That's okay, these are the limitations I work with now. Alan will ask me a question and I feel like I have no idea how to think of what he is asking me. I can't answer the most mundane of questions. It's as if the questions are too mundane, too detailed and not where I can be. I have to say I don't know, whatever, you look and decide etc.

I understood today how I need to keep things simple. No one else needs to know what goes on in my heart, my mind and the core of who I am. It's okay for only me to experience what feels like intense and profound revelations, because they are about me. We walk our own journeys through this life, ups and downs, good health and sickness. Whichever arenas we learn in during our life is where we can let go, learn and grow from our experiences. We can use challenges to break through parts of ourselves we don't need anymore. I think there are as many arenas as people sometimes, what we learn from our time here is unique. For myself, I don't expect anyone to understand or agree with my experience.   My life experiences and the doors I have knocked on to find my truth are of value to me and that's what counts.  I need to keep it simple.

Van Morrison, Keep It Simple, is another one of my special things.  My Mum loved this too.

8pm
It's 8pm and I'm still doing okay today,.. sshh..  I have to whisper, small little steps each part of the day, helps me get through and find my way.

My visit to Jordan in March 2007 has been on my mind every day recently.  It made a strong impression on me and I would have liked to have gone back sometime.  This visit to Petra was a special day, these are two photographs of the last section of the walk down to Petra Itself.  For any of my Grandchildren or their children who find a trail to this blog one day, it's a very atmospheric and magical place to visit.  When we drove through the hills around Petra we drove through a small village which was like going back in time hundreds of years.  The children stood at the side of the road waving at us as we passed by.  Stories of a life most of us will never know let alone comprehend etched across their faces, and vice versa I must say.  I wonder if any of you my lovely family, will visit this place.

Stretching, testing times even after over 2 years
I've still not been able to look at messages or the group page but I've glanced and can see a long list of messages.  Thank you for those, when I've read them I'll 'like' the comment.  I took the day cautiously, getting up at lunchtime then Alan took me out for some lunch for half an hour where we met up with some of the family.  I may have been out about an hour and a half altogether then I got straight back in bed.  By 7pm I was going through the now regular pattern of shivering for two hours then getting a rise in fever.  I've been in bed all day apart from about two hours.  I have two more days of anti-biotics to take then if I haven't improved I'll be back down to see the Doctor.  We know my left Kidney is swollen and probably draining slowly because it's been aching for 5 months.  It wasn't backed up after my lastest scan but it could be something to talk to the Doctor about again.  I know the problems which I may have looming in the future can involve some of the symptoms I'm experiencing.  Thank you all for thinking about me.  This week is turning into a haze, I don't think I went out at all yesterday but I can't remember.  I'm fed up and feel like I'm being stretched to my limits again.  I'm not sure when I will update the blog again I feel awful after writing that.

Temperature back up to 38.4 last night
I've not felt well enough to look at Judith McGuinness Cancer support through collective thinking yet, I'm hoping I'll feel well enough soon to do one or two things.    I'd felt able to come downstairs yesterday for an hour, and I wrote the blog then I went back to bed again until late afternoon.  Then I pulled on some clothes and Alan took me up to the viewpoint on the moor so we had half an hour sitting in the car looking out, sometimes using our binoculars.  I was happy to be there in that special place.  When we got home I felt really poorly so I got into bed until 9.15pm when my Son Jake arrived.  I got up and sat on the sofa for an hour or so then went back to bed.  I couldn't stop shivering and felt very poorly as I have most of this week.  It was hard not to groan and thrash around trying to get comfortable, it's been difficult to get comfortable.  I heard myself keep groaning and it was the only thing I could do to express how lousy I felt.  I was so cold I put my dressing gown on in bed which stopped the shivering after a while.  By 5am I thought I would check my temperature, I heard fast bleeping which means my temperature was above what is classed as normal.  It was over 38 again so Alan got up and began opening the windows and removing my dressing gown and pulling the sheets back.  After half an hour my temperature was within normal ranges. I've hardly slept in two nights so I had half a sleeping tablet which, thankfully gave me a few good hours of sleep.  Jessica was here at lunchtime helping me have a bath and washing my hair for me, then she dried it and I was able to get straight in bed again for a rest.  It felt lovely with nice clean sheets on too.  My appetite is still not roused I've had two apples today.  Most of the time I've felt nauseous but not today so far, that's a plus.  I came downstairs this afternoon because Jake arrived after work to clean my fridge so I thought I'd do an update whilst I felt up to it but now I need to lie down again.  

When I don't feel up to going out I like to think about one of the places I've lived or visited.  We took this photograph at Petra in Jordan.  It is an amazing place. Lovely memories.

Fever broke
Thank you for the comments and recommendations on Judith McGuinness cancer support through collective thinking.  I've not been near the computer for a few days so haven't caught up on all the posts, hopefully I'll feel strong enough to do so in the next day or so.  The fever finally broke last night, thankfully.  We'd spent a couple of days trying to get my temperature down because it peeked over 38 when we didn't keep an eye on it.  It's difficult to try and cool your body temperature when you are shivering and your teeth are chattering but it had to be done.  No luxury's like a hot water bottle!  I ventured out of my bed last night for an hour and felt well enough to come down stairs for breakfast this morning.  I'm slowly coming round which is good news because I felt so bad I was sure I was dying.  Thanks again for your support and words which mean a lot to me, I have some special friends old and new around the globe and you are all precious to me. 

Another infection
I was up most of the night as another infection decided to move into my body and made me feel uncomfortable all night.  Cystitis is not very nice as most people who've experienced it can tell you.  There are varying degrees to the symptoms.  I took some paracetamol overnight and I found my Sodium Citrate sachets which help relieve the symptoms for a few hours.  In fact they make the infection bearable, but you can only have three doses in 24 hours, and only for two days.  Then there is Cranberry juice which is always highly recommended, but you need to check the Cranberry content on the bottle or carton because many brands only have a small percentage of Cranberry juice in them, alongside a lot of sugar because Cranberry's can be quite bitter.  


By daylight I was feeling fed up with the discomfort and constant need to be in the bathroom.  My left Kidney aches all the time, my ovaries ache, and one or two other areas, I just shouted in my bathroom, "Leave me alone!"  It does help sometimes!  I was thinking to myself, "Stop chipping away at me and wearing me down infections, I've had enough of you!"  This is the fourth one now in the past several weeks.  As I've said in a previous blog, I'm not spending my time worrying about infections, but the more I get the more I'm aware that this could be the weakness in my body from the advanced cancer.  I don't want to become resistant to the anti biotics I'm on every few weeks, especially if I ended up with a lung infection.  Anyway - these are thoughts drifting through my mind which are out in this blog now.  Something that is at the back of my mind, quietly but cautiously sitting observing what's going on, but trying not to interfere with me cracking on with my life as best as I can.

I could see the sunshine filling the sky, and the big fluffy clouds I love sailing along in the breeze but I couldn't go out.   We'd made plans to go to a local town's market and buy some fresh cheeses and chutney, and have a drink in a cafe, generally having a lovely time, but I couldn't leave the house.  Alan went down to the Doctors first thing, and by 9am one of the Doctors called me.  By 9.30 I had a prescription for anti biotics and a Urine sample bottle to drop back off at the Doctors before lunch so it could be sent off for testing.  


The bright sunshine had been replaced by grey clouds as I stepped out of the house late this afternoon.  I'd taken another Sodium Citrate drink which helped me get out of the house for 40 minutes.  We drove up to one of our favourite view points on the Moor and sipped our hot drinks.  It didn't matter that the skies were grey, I was looking at the horizon, the Kestrels, the beautiful land, and the sky, it felt good. 

 Sunset on the Moors
We have had some days of sunshine which I have really enjoyed.  I love this kind of weather when the air is cool and crisp and the sun shines brightly on a March day.  The daffodils and crocuses peep their heads out from the cool earth ready to dance in the breeze and blossom in the sunshine.  I prefer this weather to any hot muggy day we may get in the Summer.  I feel happy to have been out in it today, because I didn't walk at all yesterday.  I'm still learning how to manage the fatigue I experience and I suspect it will take some time to get it right.  It's a balancing act, getting the right amount of rest and activity isn't as easy as it sounds, other than sitting down and doing nothing all day.  We take my Granddaughter Ella for her Horse Riding Lesson every Sunday, so I decided not to go for a walk so I wouldn't use up energy needed for that.  My Sister and two Nieces also come over every Sunday so I needed energy for that too.  Actually, one of those activities is enough in the day but my Sister, Nieces, Alan and I have such a giggle when they visit I couldn't possibly give it up.   Most Sunday's there is screeching and laughter going on for up to three hours, exhausting but so much fun!  On Saturday I found myself with too much going on from morning until 3pm and really paid the price, I ended up in bed for 5 hours.  I need to hold back from making arrangements as much as possible because I forget what's involved.  By the time I've showered, creamed my over dry skin from treatments, then dried my hair, my limbs are aching and I'm ready for a rest.  I may have to change my routine so I shower and wash my hair before bedtime so I can get straight into bed.  I'm mentioning all this to give you some kind of idea how cancer fatigue can affect you.  I felt frustrated again today because there is so much I'd like to do, and I can't attempt to to these things.  I've had to let my standards slip around the house, and look longingly at flower pots I'd like to dig and plant Spring flowers in.  I thought I'd got over the frustration of not being able to do things and walked into acceptance, but I haven't really.  My understanding is that it's a daily acceptance, I'm not over it and that's it I get on with doing what I can in tiny steps, no, it's an on going learning process along with learning to take regular rest periods, and not doing what I want to do all the time.

This evening we took up a small picnic and hot drinks to one of  the beauty spots around our home so that we could watch the sunset.  It was so beautiful, I love to get out of the house and see the sky and the horizon.  The Moon was also shinning brightly in the sky as the sun was going down.  My daughter and one of my Granddaughters came and sat alongside us in their car, it was chilly but the sunset made me feel a warm glow inside.  How lovely to be in that scenery and have people I love at my side.  That and a picnic, what could be better!

Enjoying a picnic, wonderful views and special company, moments to treasure, and there is the rock I named after a friend of mine, Dianne's Rock.

                                           It's difficult to stay indoors when Spring is in the air!
This is the spot on the edge of the Moors where I would sit in the car with Alan when I was on chemotherapy and couldn't go out because of the effects of cold air on my throat, hands and feet.  One of the side effects of one of the chemotherapy drugs was your throat feeling like it was closing up in cold air.  I used to avoid going in the fridge and would wear cotton gloves because touching anything cold made the pins and needle sensation worse.  I love this spot, especially at dusk, there is a silence that seems to sweep across the Moors, gentle and soothing as darkness falls.  It was a lovely day again today, there was a haze across the land, it looked like fog the higher up you went.  This photograph taken around 5.30pm, is of me looking up at the Moon with my binoculars.  The Moon looked amazing as one edge of it was glowing a soft amber colour from the sunset.
I saw the Doctor this morning to talk about the results of my Ultrasound scan last Friday.  The scan shows no real change, only the Ovarian cysts which weren't giving cause for concern.  My Kidney is still enlarged but there is no back up from the Kidney so no need for a stent just yet.  My G.P. asked if I wanted an appointment with a consultant at the hospital so I could have my Uterus checked out, but I said no, we'll wait and see how the next few weeks go with regards to discomfort and symptoms I've been experiencing.  We also made an appointment to get my bloods done on Monday.  I told her my fatigue levels had gone up, and that I have to take paracetamol during the night because my limbs are aching and keep me awake.  Once we get those results I hope to have more of an idea if the added fatigue and aching limbs are a progression of the disease, if I'm anemic or just taking longer to get over the last infection I had recently.  My Colon takes constant management and is a daily reminder of the need for early detection and diagnosis of this awful disease.  Sometimes it feels like my Colon is my life because my day revolves around dealing with it, even though I had the resection to remove the tumour problems persist and I can have awful discomfort where I had the surgery. 

I can't turn back the clock for my diagnosis but anyone reading this blog can keep an eye on their own bowel habits.  If your Bowel habits change and are not normal for you please don't hesitate to see your G.P. and arrange a check up.  Bowel cancer is very easy to treat in the early stages of the disease, cancerous polyps can be removed during a Colonoscopy procedure.  Please, if in doubt get checked out.

Thank you for all the messages on Judith McGuinness Cancer support through collective thinking.  I appreciate them all and wish you a happy weekend.

Enjoying the sunshine today.

It was a glorious day for a walk, we met up with Jessica and Jasmine at the fishery for a drink.  We had a nice surprise when my Nephew Chris joined us at our outside table overlooking the lodge.  The sun felt warm on my face, it was nice to have a few minutes letting the rays soak through my skin.  When I was on the anti-cancer drug Cetuximab for two, three month sessions, I had to stay out of the sun.  My skin has been damaged by the drug but thankfully I can sit in the sun for a while and enjoy feeling the warmth penetrate my body.  I had half a day at the Hospice yesterday for their drop in day, then I went out for lunch with Jessica.  I tried to rest in between but I still got fatigued.  After my walk today I lay down to rest for an hour as recommended by my Occupational Therapist, then I went to the supermarket with Alan whilst he got the food shopping.  I didn't last very long.  I was soon feeling wobbly and like I was spinning out.  After trying on some clothes I was exhausted and had to sit down on the seats behind check out.  I couldn't find my glasses or my phone, I felt vulnerable.  I'd had a few minutes when I was looking at some clothes I needed, where I forgot I was ill, because I try to get on and live, but again today I was reminded how seriously ill I really am.  Reality sets in, it runs alongside me trying to live.  To live the life I used to have.  Freedom.  To not feel vulnerable and in need of help, to function as everyone around me seems to function.  To be normal.  I had that life.  When I think of how I used to be able to function I can't quite believe that's gone now.  I wasn't restricted physically, only by my mind which I could change.  It's a daily challenge, not to give in but to be positive with what I can work with now, today.  Which is my normal right now.