Stop the ride I want to get off...

Saturday, June 25, 2016

Chemo, here's how it's done...

So I'm sitting here starting this blog post to kill time before Judie and I head into hospital for my fourth cycle of Eribulin. I’ve had some good news, the tumour markers have been steadily dropping, the pain in my side has vanished and I've had a CT scan. Hopefully those results will also be good, but I never like to count my chickens before they hatch so we have to wait till clinic at the end of June to hear about that.

Many of you have asked what it’s like to have chemo and sometimes people say stuff that makes me grin as I realise how much the media has portrayed chemo. I thought I’d give you an idea of how it all works from my perspective.

Firstly, chemotherapy can only be given when your blood counts are at safe levels. This becomes more of an issue the longer you have chemo and the more times you have to undergo treatments. So at some point before chemo you have to have a blood test, sounds simple enough, but as you undergo more chemo treatments your veins get damaged and this process gets harder. I was having a really rough time with this until they put me on a nerve painkiller for another side effect. Blood tests no longer so painful woohoo. (Note: I have undergone three separate sets of chemo treatment in 11 years)

When I get to my chemo unit I check in with reception and, on our unit, I go sit in “The Corridor” and then wait, and wait, and wait… sometimes you get lucky and the wait isn’t too long. But to be honest, I understand why the waits happen, I know there is not a lot that can be done. A prescription might say this infusion takes an hour, sometimes it will take longer. Some chemo drugs can only be made up just before they are given and some are so expensive that they aren't made up until they are sure you are going to be able to have them. All of which throws timings out. Waiting is part of the cancer game.

Finally, I get called into the Day Unit, find a comfy recliner chair and get settled. Then the nurse comes and between the two of us drugs are all sorted out. Ones to take now like anti-sick meds, steroids to prevent allergic reactions and then my take home drugs. Oooh wait, I forgot something very important, I always take someone with me. I call them my chemo buddy and I have two very good friends who have being doing this for me. It’s a very special skillset required to be one. They have to be able to cope with me getting more and more nervous and therefore more jittery. They need the patience of a saint and the ability to come up with numerous topics of conversation. Also, the ability to realise when not to talk is also useful, as sometimes after the anti sick you can get quite dopey. Finally, they need to have an absolutely, distracting story for when they are putting the drip in. Paula and Judie have come up with some brilliant ones. I’ve been in stitches laughing.

Once sorted you’re left to let the anti-sick work. Some people will have had a drip attached at this point and their anti-sick given that way. Because my veins have been wrecked by previous chemos I hold off on the drip till the last minute and take mine as tablets.

Sometime later, depending on your drugs, back comes the nurse. At this point I get my drip put in and then I have my chemo. Fortunately, my chemo takes only five minutes, so between that and the flushes I'm done in about ten minutes. It feels cold as it goes in and I get a weird taste in my mouth but once the infusion is done. I'm released from the drip and head home feeling drowsy from the anti-sick drugs.

So that’s having chemo, the simplified version. It can be painful on the veins, but if you tell the nurse they can adjust the flow rate and make it less painful and protect your veins. Some people are strapped up to drips all day, Amy used to have a chemo that required hours of pre hydration before the chemo was given. Each case is different, but for the most part, it’s fairly simple and mostly boring, sitting around waiting for it to be over. Anti-sick drugs these days are very good, and anyone who starts feeling even a little bit sick needs to talk quickly to their chemo team for help. The sooner you get more help the more likely it is they will get it and keep it under control. I also find if it’s only a little bit of nausea that eating something and then sleeping lots tends to help too.

Now to talk about the tough part…

The days after chemo, when this poison that is killing the cancer, is also attacking all the fast growing cells in your body. So that’s things like hair, nails, I really don’t think about other places but you can’t ignore the lining of your digestive tract from the mouth to your anus, it really is just one long tube. Not only is this getting seriously irritated by the chemo, but all the drugs you take have different effects on it. It becomes a complicated balancing act between diarrhoea and constipation. Eventually you figure it out and for the most part can control it.

That’s the more obvious effect, but your body is now using the chemo to fight one almighty battle inside you and it shows. I get incredibly tired and this doesn't really go away. My energy levels are limited and when I crash I sleep for hours. But again you learn to manage this, you know your limitations and you work with them. Sometimes you have something fun planned and you push through, then spend a few days catching up again. But it’s always worth it, after all, what’s the point in having the treatment if you don’t get to have some fun in life. This Day 1 dose, Day 8 dose and then Day 22 start again. I had to put my foot down, even after I figured out how to stop the terrible mouth issues, I was not recovering by Day 22. Fortunately for me it wasn’t much of a battle with the Doc as my blood counts agreed with me. So now I'm on a 28 day cycle, which seems to be giving me a couple of weeks where I mostly feel normal.

I don’t think I’ll ever walk 10,000 steps a day again, which saddens me as I love walking. I'm not sure they will ever let me go swimming again in a public swimming pool. Even walking Jinx is hard work, not only because of the energy needed to walk, but he seems to know I am weaker and can be a tad over protective and reacts to other dogs with much less patience. But I have a wheelchair so I can go further afield with friends, I can hire a mobility scooter in most towns if I want to explore and my blue badge means I can park nearer to the places I want to go. Which means I can spend more of my valuable but limited energy on the fun stuff.

Tuesday, April 05, 2016

Hitting the ground running…

Well that was fun… NOT. The first dose of the new drug, Eribulin, went ok, better than the vinorelbine. But Dose 2 threw me a major wobble. I experienced, for the first time ever on chemo, the dreaded sore mouth. I knew it could be bad, having watched kids when Amy was ill suffer with it, but I had no idea how bad.

You’ve all had an ulcer… maybe a few… now imagine a mouth full of ulcers, you can feel ulcers down your throat and then all the glands in your mouth go nuts. Your saliva production grinds to a halt and the dreaded thrush takes over. Honestly I wanted to skin my tongue, gargle with liquid nitrogen and by the second week of struggling to even drink water, give up on this chemo lark. But I got through it, lost three kilos (Oncologist wasn’t happy but I was), and am crossing everything I can keep this as a one off.

After a few days, I worked out things I could just about swallow, cream of chicken soup and milk were good. I learnt that drinking with a straw worked really well, and most important eating with friends really helps. So having my best friend come to stay for two weeks as this all kicked off was a big blessing. We also went away for about ten days and that helped too, although I suspect she never wants to hear about a sore mouth ever again, sorry Jaye but thank you for putting up with me.

We had clinic today, and I will admit to losing the plot with my oncologist and having to step (okay stomp) out of his room to calm down. Why is it that these Doctors and nurses just can’t understand that we aren’t just a cancer patient, we come with a whole load of baggage. Mine is an irrational fear, you might even call it a phobia, of ingesting strange liquids, tastes and sniffing strange smells. So when they start listing off all the mouth washes and gels and gunk I should be using I’m ready to vomit on them just thinking about it. My fight or flight response kicks in and I just want to either punch them in the face, I know I can’t do that, so I run and I panic.

I panic because I know that I want to stay alive as long as possible, but what if I can’t cope with the side effects of achieving that. I want to be here for my kids but I’m also going into blind panic about all this stuff the Doctors keep chucking at me, with no sympathy for how I’m feeling. It does not help when said Doctor keeps on and on and on about how I will just have to get on with it. Uh no I won’t, and this seriously feels like being bullied, I remember being bullied. I WILL NOT be bullied again, I will get through this my way, work with me, find me simpler options first. When I calmed down and walked back in he said “Some of my ladies have found just salt water mouth washes very effective.” Facepalm!

So, tomorrow is the start of my second cycle of this stuff, let’s see how it goes. He has given me some drops to try swilling around my mouth called Nystatin, apparently they taste of marzipan? I’ll be the judge of that, and to be honest I can see me holding out to see if I can just get by without them. Why are medicines never chocolate flavoured?

The good news, I didn’t need a Picc line in the end as the infusion is only for five minutes and I can sit like a statue and grin and bear it that long. The pains in my side have gone away, which seemed to cheer up my oncologist and me. As usual we wait longer to go onto the chemo unit than it takes to have the drugs, but as we don’t have to pay over here and they are all working their bloody socks off in there I don’t mind too much. Unless I get stuck next to THAT patient… but then I suspect to many I am THAT patient…. Muhahahaha….

See you on the other side folks, cross everything for no sore mouth. XXXXX

Saturday, March 05, 2016

Seriously, I want to get off this ride...

So things are not going quite as planned. Tuesday coming I should have been starting on my last cycle of chemo, two doses and we would have been done. Then crossing everything for a three year gap. After my clinic last time, about four weeks ago now, I had a CT scan to see how things were going. Mostly because I had rising tumour markers but also because I had an irritating pain in my side.

Got to clinic this Tuesday and after waiting the usual hour or so a young Doc came out and apologised for the wait but it appeared no one had written up the radiology report on my scan and they were now chasing it down. It would be another ten minutes or so, I went back to reading my book, hubby went back to his newspaper, we’re old hands at this.

When it got to forty minutes, we both kept giving each other the look, the “oh crap” look. We knew that behind those doors people were running about figuring out what to say. Sadly we were right…

It appears that the drug I was on (venorelbin) worked for the first cycle and maybe the second, but then it stopped. If the Radiology person had sent a prelim basic report to my Doc before I had the next cycle I wouldn’t have had it. But he was waiting for my old hospital to send an image to compare it with, despite the fact that we had a written report with sizes on it. Agggh. So I had the fifth cycle, which was bloody awful, and why I have been very quiet.

But there is some good news, now that the old fashioned drug hasn’t worked, and to be honest nobody has any idea if these drugs are going to work or not, so it makes sense to use the tried and tested first, I can now have one of the new drugs. So with a bit of jiggery and pokery the hospital have managed to get me new chemo dates that are almost the same as the ones for what would have been my sixth cycle.

I will be having Eribulin, which has to be injected into bloodstream, so after a minor panic stricken temper tantrum from me, and then some calming breaths I agreed to them fitting a PICC line. I asked for a Port but apparently my hospital doesn’t have nurses trained to access one, and even if I was willing to access it myself they wouldn’t let me. If you don’t know what these terms mean please use the search on Cancer Research page. I’ll have a longer discussion about the pros and cons in another post. Once I’m on stable ground again I plan to start kicking up a stink about this issue.

My favourite moment of this appointment was when the lovely young lady Doc said “But the good news is, with this drug you can just keep taking it for as long as it keeps working.”

I think I may have looked a tad agog at her, and then I said “You know you might not want to use that as selling point in the future. We kind of look forward to end points, only five more cycles… only one more cycle… which is where I was with lights beaming out from the end of the tunnel.”

Bless her she paused and thought about it and apologised as she realised it was not the best news you want to hear at this point. So I start a new chemo on Wednesday. It’s a brand spanking new drug, well as new as you can get around here, and tomorrow I have to go and see if they can fit a PICC line, which is their least intrusive, permanent line in.

This first drug has been tough, very tired, taste all messed up, neutrophils struggling. Hopefully this new drug won’t be as bad, after all the first drug you can only have six cycles of it because it is so poisonous to the healthy tissues.  So something they say you can keep taking has to be kinder to the healthy tissues, I’ve been reading around forums and it’s highly likely I’m going to be bald again, sigh. Still saves on hairdresser trips and shampoo. So if everyone could cross everything, I’ll try to do my best to stay positive. It’s very hard right now when you have no idea if the next drug is going to work. You have had to agree to have a tube stuck in your arm and you’re heading into the side effects of another drug when you haven’t had any time to recover from the last. But then I’ve done that before as previous chemos they always started with one set then changed to a different one. Although for those that was the plan from the beginning.

Sadly this chemo will be a Day 1 and Day 8 dose just like the last. I think the Docs and I are going to have some heated discussions about the importance of actually having a life whilst on chemo. I’m dreading tomorrow, as I hate the unknown and I really don’t know enough about what is happening topmorrow. But I’ve met the nurse who is hoping to fit my line and he is a great guy and I trust him so that really helps. Currently we are in information overload, emotional overload and too many new experiences overload. Cap’n the  waters rising and I can’t find the hole.

Tuesday, November 24, 2015

Well, that went well…

Well, that went well…

First cycle is finished! Two doses down, only ten more to go, or five more cycles. I saw my Consultant today and got some results. For the medically minded:

Tumour Markers Day 1 were 600ish Tumour markers Day 15 300ish -  getting smaller is a good thing.

Liver function – still normal

Blood Counts – hanging in there, bit of a dip in neutrophils but not enough to worry about

Bone Scan Results – NO VISIBLE METS – it’s not in my bones… although there is something odd on my spine that they are going to x ray and just keep an eye on. But so far so good.

Side effects this cycle – No sickness, apart from a tad queasy first night – upped the anti sicks hasn’t happened again. Hair is staying in, I think it’s staying in better now than it was before chemo. But shhhhh don’t let it know. Tired… but afternoon naps and not overdoing it is paying off. By last week I was managing to walk more each day.

Step count – before this all started avg 10,000 steps a day and most of that done walking round woods in an hour with Jinx. Now I am managing around 3000 from the Sunday after chemo, very slowly, building to about 7000 at a reasonable pace. I love walking round the woods and just getting to be by myself for an hour.

Oooh and only one full blown Mummy Vesuvius meltdown… not bad, I am trying to be more understanding of how this is all affecting Paul and George.

This first cycle has been a little bit messy organization wise. I realized, about halfway through, that I had been squeezed into schedules and that in the mad chaos they kind of forgot to tell me things here and there. Nothing major that hasn't been fixed, but now I know these things the next cycle should run a lot smoother.

Ever wonder why we need all these different Cancer charities, well first and foremost so that research gets done outside of the drug company agendas. Secondly, so that there are extra nurses about to help support and organize everything. Doctors are surprisingly inept at this, they are like husbands or teenage children. They say, this must happen, and then look confused when things don’t happen as they have ordained.

Luckily there are specialist nurses scurrying about in the background sorting chemo schedules, making sure appointments get booked and answering the daft questions us cancer patients come up with every day. Trouble is, someone forgot to assign me my Clinical Specialist Nurse and so I was flailing about trying to get questions answered, confirm appointments, and discovering that some appointments had been forgotten and slipped through the net. We got there in the end, but it’s an added bit of stress that you really can do without out at times like this.

So this Friday it all begins again, blood counts depending, and I’ll have taken another step forwards and put three doses behind me. Now I suppose I had better get on with painting this dollshouse so I can show off some progress on that. I don’t have any more excuses…

Monday, November 02, 2015

When your brain goes on a ride of it's own making...

When they told me my cancer was back I had six nights to vegetate over the matter. I can tell you from my experience, five times now, that this can be the worst part of having cancer. You know that you have this thing growing inside you, you know nothing else, not even if they have options. You get sent home and told that someone will contact you with your next appointment.
This time I walked out of the hospital utterly dazed, everything was swirling about in my head and every now and then over the next six days something would leap into focus and slam into me. None of it was very positive…
First off, my kids, my poor babies. I don’t care if they are twenty one and nineteen, they do not deserve to have to go through this again. George has been doing this since he was four, each time I watch him act so brave and nonchalant, yet I notice him coming to sit with me to watch TV more often. He comes up with reasons to have a chat. Amy, poor sod, is two hours away in Cardiff trying to finish her final year of Uni and dealing with depression. Good job mum, great way to help her with that.
Then my brain decided to think about the “what ifs”… mainly what if the treatments doesn't work and I die? At this point my brain lost the plot, I know this because, it suggested that I should tidy my bedroom, sort out the garage, and clean up the craft room. It started to talk about making lists, of who gets what, basically my brain decided to run off screaming and yelling, waving it’s neurons in the air in full on panic mode. We can’t possibly die without making the house all neat and tidy, and ensuring all our affairs are in order, it informed me.
My logical side, tried to point out that all this stuff needs to be done at some point, and I could spend years putting it off and putting it off, until I'm too ill to deal with it. Better to sort myself out, so that I can then sit back and concentrate on the important stuff… LIVING… SURVIVING… and through all that ENJOYING life. Otherwise, what’s the point of putting myself through all these treatments, making myself feel ill, so that we can beat back the invaders.
These were some very dark days, I sobbed silently in my room, so as not to upset George. Paul, my hubby, refused to even talk about any bad stuff. Which really pissed me off, if I can’t talk to him who can I talk to? This seems to be a common theme with people, they fall into two groups, those who understand that I need to verbalise my own fears and those who just don’t want to hear it. They say “You mustn't talk like that, you can’t think like that.”  But let’s be honest, we are all going to die and the older we get the more we need to think about this stuff.
Monday morning, I had one of my epiphany moments, and I kicked my brain into gear. It feels like someone just flips a switch inside your head and you know how to deal with this stuff life is throwing at you. I considered the odds, I pondered that if I can get the ten years I’d be 57, kids would be settled by then, that’s not so bad. Then I thought about twenty years, 67, actually not that terrible, not that long ago it was considered old. Of course, the longer I can beat back the invaders the more likely they are to find some better treatments and add another ten years, that’s 77.
But my practical self also pointed out, that there’s nothing wrong with doing a bit of sorting out, making sure things are shipshape and in order. I've watched friends struggle with relative’s estates when the relative hadn't bothered to think about death. It’s not pretty and it makes what should be a time to think about the person you've lost, and remember the good times, a stressful nightmare.
So I've tidied the garage, I know it won’t last, but at least I’m going into chemo with floor space in the garage. I've sorted out my bedroom drawers, well nearly all of them, I've avoided THAT drawer. You know the one, which you drop stuff in because it might be useful, or you might need to look at it sometime in the future. To get the craft room clear, I realized that I have one thing on my bucket list that will be perfect for passing the time as I stay away from crowds and germs on chemo. I am going to build a dollshouse, from a kit. It was meant to be, when I went hunting for a kit I found one that looks exactly like my Grandparent's house. Somewhere I made some of my best memories.

Now I'm sat editing this post in a luxurious hotel room, after a day spent shopping with Amy in Cardiff. I'm having a mini holiday before chemo starts on Friday. I will drive home on Wednesday afternoon, then go for blood test Thursday, ready to go to the hospital on Friday. The next time I post will be after I've had chemo, and the countdown will have begun, twelve doses, provided they've picked the right drug. Cross everything, and let’s hope the anti-sickness drugs work as well as they always have for me. I wonder if my hair will survive this time…

Sunday, October 25, 2015

Here we go again...

Well, I was planning on waking up this blog, but this really wasn’t how I planned to do it. This really isn’t my best writing and I know my best friend will be cursing me and my appalling use of commas but…

In June, I went for my annual check up and my consultant and I decided that, something wasn’t right with my tummy. He felt it was probably the reconstruction damage beginning to show. He decided I would need a CT scan, I had two holidays booked, we negotiated. In late September I had my CT scan done. I was very brave and went on my own, actually they called and said “Can you come in now?” So I had no choice, but still I went. Thank the gods that I did.

On Wednesday 7th October I went to get my results. These Doctors really need to work on their acts, Paul and I both knew something was wrong the minute we walked into the room as there was another nurse waiting. Two nurses and one doctor is always a bad sign, just so you know. Bless him my Doc went through the pleasantries very fast and then showed me on the screen, “You don’t have a hernia.” Yay I thought in my head, but my brain was also thinking, why do you look so serious then? He started to point at some spots on the screen, “Unfortunately we found two lesions on your liver.” 

Fuck, fuck, shit, shit… and words to that effect were uttered by me, as I slumped onto the desk and just thought about how only the night before I had been moaning about how fed up I was with all this medical stuff. Irony huh? My Doc was holding my hand and squeezing my arm, my hubby was holding my other hand, I was just sat there more than a little shell shocked.

As always my first thoughts were, so what do we do? We did a blood test, and my old chemo nurse was there, she was great and gave me a talking to. She could see I was feeling completely lost. She said “Amanda, look at me, we have ladies who are still with us ten years on, twenty years on from this. Every year they get better and better at this. You can’t think the worst yet.” She also told us that 15 years ago the consultant would have shook my hand and said goodbye, handing me over to the local hospice. Two big hugs later from my two nurses and I was walking out, tears pouring down my face. Poor sods waiting to go in after us, must have felt so encouraged….not.

The following Tuesday I met my new oncologist, and we discussed options, we discussed the future, we named the enemy. Last time it came back it was another primary cancer, this time it’s the bad one, this is metastatic breast cancer. You see breast cancer is a sneaky bugger, it likes to hide out in disguise and just when you least expect it start growing again. Once it hits your liver, bones or lungs it is no longer considered “curable” but is now manageable. Manageable sounds so simple, but this means chemo, and more chemo and more. Consultant asked if I could try to keep it to an episode every three years as it works better that way. Uh, if I had any say in this, I’d not be sat here now. I thought.

The good news is, my blood test showed that so far my liver function hasn’t been affected, which is a good place to be going into chemo. My next routine CT scan would not have been for two more years, imagine if the sneaky little buggers had carried on growing till then. Shudder.

So I start chemo again on 6th November, hopefully this drug will work. They will be able to tell if it works as I have I high tumour markers in my blood and these should go down. Chemo will go on for six cycles, each cycle is three weeks. All the usual side effects, although there is a chance my hair won’t fall out completely. But as my daughter pointed out “Mum, if you start being able to see your scalp through it, go bald. You look good bald.” Well there’s a relief. George’s comment was equally blasé “No using the I’ve got cancer card at home mum, three times is just taking the piss.” I’m glad they can still both make jokes. I’m keeping my eye on them.

I don’t want to discuss long term prospects yet, hate to tempt fate, will wait until we see what the tumour markers are doing, and the results from the bone scan I’ve yet to have. But I needed to write a longish post, and felt waking up the blog would help keep my facebook page from turning into the cancer patient page. So I shall try to do a weekly post here, and link to it from facebook. I like having a diary of what it going on, and it means folks can get all the info they might want without me having to say it over and over again.

 A website I have found very reassuring…

So now this becomes a different type of game, now it’s siege tactics, I’m filling up the pots of boiling oil and preparing to repel invaders. I’m filling the moat with crocs, training dragons to sit on the towers, and being a good girl and drinking plenty of water and eating lots of fruit. We just need to dissolve the sneaky buggers in my liver.

This next part is for the ones who will want more medical detail…

Lesions are 5.5 x 5.5cm and 21 x 15mm.

My last CT scan before this was a year ago and was completely clear.

All the other organs they could see in this scan were clear.

I’m going to be taking Vinorelbine and will also be getting the white cell boosting injections for four days in the cycle (Yay for the really painful injections)

Thursday, January 03, 2013

My little brother...

Hi anyone still listening... This is me and my little brother, I watched him being born over 30years ago... now look at him. Hadn't seem him in about four years, as he has been working abroad, finally persuaded him to come visit and fed him well. I think the smile on my face says it all... As you can see I have survived the surgery, chemo and did go to Florida. Am hoping to get back into writing this year and this blog will be key.. so watch this space, and if nothing happens please nag me. Love Noonie

Monday, March 26, 2012

And so it begins again...

Everytime someone has asked me over the last eight years "All Clear?" I've replied "Nope, you don't get an Al Clear with breast cancer." and they have for the most part looked at me and shook their heads and scolded me, in a nice way, for being negative. But it's not negative it is a reality about Breast Cancer, it comes back... with a vengeance sometimes.

This is why my Consultant never signs off a young survivor until her regular mammograms kick in. Thank the gods... every single one any of you believe in and then some. I rolled upto my check up in January on my own, expecting the usual, brilliant off you go.... Mammogarm no worries into the ultrasound and screech.. Ultrasound Consultant says "I should warn you there's something there. It's very small." I'm still not worried, "But it's probably nothing hey?" I ask and he shakes his head "No it's a tumour." My response was of the four letter kind, which he agreed was an appropriate response.

And so the rollercoaster began again. The lump was 8mm, even my surgeon couldn't feel it it was so small. But I was booked in for CT scan, bone scan and blood tests. My breast care nurse/advocate is fantastic she managed to get results in fast and within a week we knew that it had not spread anywhere, I'd had the biopsy. That#'s a fun tale for another day and we knew it was cancer. I've always said the worst part is the not knowing...

On that first day I instantly stated that I wanted double mastectomy and the surgeon said it was the best thing I could do as long as I agreed to reconstruction at the same time.

So here I sit three weeks after the surgery. I'm sore, I feel like a victorian woman in the tightest corset... but I tell you what I have a tiny stomach, and matching boobs. I went for the pedicled tram flap which you can google if you want to know.I'm looking at starting chemo for the second time on 16th April, but only if I feel ready. Then I've got six lots of chemo over the next 15 odd weeks, blood counts permitting. Yes I'll be bald again, no I WILL NOT gain a tonne of weight again... I refuse I'm not ruining this fantastic work my plastic surgeon has done. And when it's all over I'm going to Disneyworld and Harry Potter World in Florida dammit!

Cancer you're not winning again... bugger off!

Saturday, December 04, 2010


for lack of posts and if anyone saw that awful comment that slipped passed the spam checks... have had to turn on word verification which I hate.. but really the comment was disgusting.

Will be back to posting as soon as I get my Christmas Tree up... first have to persuade men in house to get it out of the attic first.... or drop it down a branch at a time.........

Sunday, November 07, 2010

Something I hope to do in my life...

Oh this one was so easy... one day I hope to hold my daughter's child. Shh I didn't say that out loud... don't tempt the jinxes.

But when you've had a daughter go through chemo, radiotherapy and you watch her grow up into this beautiful girl you do wait with almost baited breath. We know there is a chance she might not be able to have babies. But we've asked enough of her Docs to know that it's only a chance. Let's get this in focus, when she was ill there were often chances she wouldn't live. She is still here today.

In the end, you just have to live for the moment. We've discussed it, the Doctors and I have emphasised that while her chances of conceiving are less than most, it is only really the length of her fertile years that we hope has been affected. So she needs to start early... "Only not too early, I don't want to see you in here pregnant at 15" one Doc said to her. I almost got whiplash nodding that day.

We don't know if any of the drugs she had might have damaged her eggs genetically. But again that's luck of the draw and hasn't she shown us what she thinks of luck of the draw?

So yes, I'm waiting for that day and I will sob buckets of joy, tears escape now, tears of pent up fears I suppose. But if we end up having to support her through adoption there will be the same tears of joy for that baby too. I just hope she has an easier ride of it than I did.

I hope to hold my daughter's child in my arms one day.

Thursday, November 04, 2010

Something I have to forgive someone for...

Hmm semantics are definitely at play in this one...

Something I HAVE to forgive someone for...

There are lots of things I could forgive various people for, my hubby says I'm like an elephant I never forget and unfortunately I can bear a grudge for a very long time. But something I HAVE to forgive...

I honestly can't think of anything bad enough to need me to forgive someone, and I don't bear a grudge maliciously ... much. Then there are things that are bad.. see previous days meme. But honestly I refuse to forgive anyone for those events. Maybe one day but not yet... I haven't finished resenting them. I'm not that big a person, maybe I should be... I guess all this material would be brilliant for some therapist out there. Fortunately finding a therapist in the UK is difficult. I know I tried last year and then decided I'd rather be depressed and messed up.It was entirely too much effort.

So no I do not have anything that I have to forgive someone for, not at this point in my life... move along there nothing to see today.

Wednesday, November 03, 2010

Something I have to forgive myself for...

This one is easy... not being their the day my mum's boyfriend tried to kill her. Even today I still feel guilty about this. I was only ten years old but I knew that if I left her alone he would do something. I had been dashing down the stairs to stop him beating her every night from when I was seven. Yet still she continued to live with him.

A friend of mum's had invited me to go with her and another girl to visit London and see the Natural History Museum. I loved that day, I still remember it, there was a fantastic exhibition on about bugs. With this interactive part on the life cycle of ladybugs and greenfly and how they were related. How weird is this that I remember that so vividly.

While I was out he came in, asked my little sister to go out and play. Now the important thing here is lil sis slept like a log at night, mum could vacuum her room and she wouldn't wake so she knew nothing of what went on late each night. So she went off out to play.

Fortunately for mum while she was out she suddenly felt she should go home. When she got there the boyfriend was throttling my mum. Even more fortunate was it that whenever one of us girls appeared he stopped the evilness and tried to act normal. Even now this creeps me out.

I got home, but was not taken home, after some whispered conversations between the adults I was taken to my Uncle's house where my mum was. She came upstairs and told me exactly what had happened while I was gone... why did she do this? As a grown up writing this out I really do wonder what on earth was she thinking... I suppose she wasn't really.

Why wasn't he arrested and charged? The bruises on mum's neck were there for weeks. We spent one night there and then we were shipped off to our dad's for the week. I don't know what he did and did't know. But everyone just pretended like it didn't happen... that was a crap day but it was only the beginning of complete and utter madness as this man went completely loopy. He had finally been kicked out, but he would come back and break in. I'd wake up with him sitting in my bedroom. Mum had me sleep in with her so he couldn't surprise us. Or kill her I suppose...

All the time my mum talked to me about this like I was a fellow adult. I am completely befuddled by this now. Yet, she will not talk about it now, when I tried once as an adult to talk about it she didn't want to, she denied it was that bad. Mum, dialling 999 and huddling in the living room waiting for the police to come while the man beats on the front door yelling obscenities was bad.

I still get scared when people shout, especially men. I still feel guilty that I wasn't there that day, I knew that if I had been he would never have gone that far. I would not have left the house. But I had never been taken out for the day since as far back as I could remember. The fact that I remember this so well tells you how humungous this day out was to me. So here I am putting this down in words... and you know what why should I as a ten year old have felt bad about being taken out for the day with friends? Why should I have felt my main purpose in life was to protect my mum? Shouldn't a ten year old expect her mum to protect her, from the horrors that were happening? Didn't I deserve a childhood?

So yes I should forgive myself... she didn't die, he did finally get help and it was NOT my fault. Sad thing is... I'm still not believing myself.. not yet.

Tuesday, November 02, 2010

Something I love about myself...

Tough day to answer this one, as I completely forgot that before I went out for my meeting last night I had downed a large mug of coffee and then at the end of the meeting someone bought me a coke. 3.30am I suddenly realised why I couldn't get to sleep. Finally fell asleep at 4,.30am only to be woken by Jinx ( my dog) at 5.10am growling in the kitchen with the odd Wuuff. Went down to get him, he settled down on the floor in the spare room where I was "sleeping" so as not to disturb hubby. Fell back to sleep 5.40ish he wakes me up desperate to go out. Chased off any foxes, I didn't hear any, pottered about while I leant against the patio door waiting.

I'm seriously not feeling the love today, depression really kicks in when you've not gotten any sleep, then woke and weighed in to find that after a week of being really really good and swimming three times, I'd not lost an ounce! Even if I moved the scales about the floor a bit. We'll ignore the point where they claimed I weighed more.

Headed out to meet friend and pigged out all day, depression can do that to a girl.

So what do I love about myself? I like my eyes, although since the hysterectomy they don't change colour as much. I like that when I am given a challenge I rise up and get on with it. I like that I always try to help a friend in need, in any way I can. I like that in an emergency I can pull it together and be useful. But what do I LOVE about myself?

Suddenly the first meme seems so much easier... I honestly don't think I LOVE anything about myself right now. Ask me in the Spring...

Monday, November 01, 2010

Something I hate about myself...

I hate a lot of things about myself. I hate that I fall into the depths of despondency as the dark days set in, I that I have to sit with a light box every day or slip into the depths. I hate the weird moods I get in when the depths are threatening. I hate the paranoia that also comes with it.

But then is that about myself of about the depression that I suffer from? So I don't hate that about myself but hate what it does to me. The depression comes with the dark days so I can blame the dark days for causing the depression and hate the dark days not myself. Hmmm

I hate that I work best to deadlines. Give me something to do with no end date and I will never get around to it. I will procrastinate my way out of doing it. Give me something to do and say I need it tomorrow and I will produce my best work and on time no matter what it takes.

I hate that I am so insecure, I am so ready to believe that someone does not like me. It makes me keep myself to myself, if I didn't force myself to go out and contact folks I would easily tuck myself away in the house and never leave. Yes, this is what I hate about myself... my insecurities.

Sunday, October 31, 2010

And starting again...

A few friends here in bloggerland are struggling to write like I've been and one of them Angi found this meme... so I'm aiming to do this one day a week for the whole of November. I also signed up for Nanowrimo... we'll see where this goes...

Here is the list in case you might want to do the same...

Day 1- Something you hate about yourself
Day 2- Something you love about yourself
Day 3- Something you have to forgive yourself for
Day 4- Something you have to forgive someone for
Day 5- Something you hope to do in your life
Day 6- Something you hope to never have to do
Day 7- Someone who has made your life worth living
Day 8- Someone who has made your life a living hell or treated you badly
Day 9- Someone you didn't want to let go but drifted from
Day 10- Someone you need to let go, or wish you didn't know
Day 11- Something people seem to compliment you on the most
Day 12- Something you never get compliments on
Day 13- A band or artist that has gotten you through some tough days (write a letter)
Day 14- A hero that has let you down (write a letter)
Day 15- Something or someone you couldn't live without, because you've tried living without
Day 16- Something or someone you could definitely live without
Day 17- A book you've read that changed your views on something
Day 18- Your views on gay marriage
Day 19- What do you think of religion or what do you think of politics?
Day 20- Your views on drugs and alcohol
Day 21- (senerio) Your best friend got into a car accident and you got into an argument just an hour before. What do you do?
Day 22- Something you wish you hadn't done in your life
Day 23- Something you wish you had done in your life
Day 24- Make a playlist to someone and explain why you chose the titles. (post the titles, artist and letter to that person)
Day 25- The reason you believe you are still alive today
Day 26- Have you ever thought about giving up on life? If so, why? When?
Day 27- The best thing going for you right now
Day 28- What if you were pregnant or got someone pregnant, what would you do?
Day 29- Something you hope to change about yourself and why
Day 30- A letter to yourself. Tell yourself everything you love about you!

Sunday, July 11, 2010

Wedding Anniversary...

Today Paul and I have been married for 18 years. It really doesn't seem that long, and it's had its ups and downs. But I think we'll be aiming for another 18 years.

We went out with the kids to a nice Pub Restaurant for lunch. We've come a long way since lunch out with the kids used to involve taking it in turns to go for a walk with them. Now they are both good company, helped us to demolish a bottle of wine and had their dad in tears as they did their usual comic sketch routines.

I hope in 18 years time we will do the same but sat with us will be their spouses/partners and hopefully some grandkids too.

Sunday, May 09, 2010

Monday, April 12, 2010

Do I feel foolish...

Put my back out pushing shopping trolley round the supermarket Easter Weekend. Had to wait for weekend to be over to call Osteopath, many painkillers later I went to see Claire... miracle worker, I won't say I skipped home but I could tell she had fixed the problem and once the various bones etc had found their right places it would be good.

I decided to go fetch something from the top floor... on the way down the stairs I slipped... four steps later and a loud scream I am on the floor at the bottom of the stairs being helped by one large black labrador... Jinx french kisses from someone who licks his nether regions is not helpful... two teenage kids... now I know they care... and I realise that the thing that is hurting most is my little toe.

I realised that as I slid to a halt at the bottom of the stairs my toe had impacted, with all my weight behind it, into the door frame. Son took off my sock and I examined the toe, it appeared to now be made of jelly (jell-0) much to my horror. Amy and George got me downstairs and Amy taped the toe to the other one.

So much for the trip to the osteopath, I ache all over and my toe is now developing the most awesome of bruises. I can walk on it, but not for long. I want to go swimming but am nervous about the effect of this on toe.

I guess I need to rebook to see Claire at least someone is getting something out of this.

For my next trick...

Sunday, February 07, 2010

Retail therapy and friends...

I am sitting here chilling after a great weekend. My best friend came to stay, we went shopping, didn't buy much. Ok so I bought a new laptop but that has been on the shopping list for months, been looking for just the right machine at the right price. My current machine was bought back when I was diagnosed and is finally on it's last legs. So much so that I have actually backed up and will do so tomorrow just to be on the safe side.

But it was just nice to potter about the shops, stop for coffee, potter some more, try on mega expensive clothes in boutique clothes shops, because I can! Was so funny though, the shop assistants were passing in tops, "Try this." "This is gorgeous."

Well you try them on, and step out, Simon is like "Oh yes that's nice, like that. No not that." go back behind curtain take off top, hang back on hanger and nearly pass out at price tag..........

One top was £230... who buys a casual top for £230? I almost texted Simon from the changing room to say "Dis the top quick... " but managed to escape without anything. Needed coffee after to recover mind. I could understand maybe for something really really classy for a very special occasion... but this was just not that kind of top. How the wealthy live... might as well sit outside the shop and just burn money.

Still it was fun trying them on, but I don't think that even if I won the lottery I could have brought myself to waste money like that. I'd rather send a donation to charity.

We also had an evening at friends, with all the kids, played the biggest game of Perudo, Indian takeaway and a snuggle with my friends' cat Coco. Coco has just been diagnosed with cancer, so I had a chat with him about joining the club. We compared notes, he played chase the toy with me and we had a cuddle. I hope this is one of those really slow growing old age ones, I've known Coco since he was a kitten. I rescued him and his brother out of a tree.

Yet again the Big C raises it's ugly head...

PS Nine people playing Perudo = 2hour long game.


Monday, February 01, 2010

Really, I don't feel well...

I've been battling some kind of infection in my chest since New Year's Eve. Antibiotics got the worst of it, but the cough just would not shift. Finally sorted myself out to see the Doc I really get on with and after two visits he diagnosed bronchitis, gave me an inhaler and some steroids and sent me off for a chest X ray.

It seems that maybe my mum's years of chain smoking around us as children have paid off, lung damage... thanks Mum.

My son has been in stitches watching me try to use the inhaler, I just could not coordinate breathing in, squirting the inhaler and keeping my tongue out of the way. He described it as like watching a cartoon, as my eyes would suddenly bulge in shock and then I would madly lick at my arm trying to remove the vile taste. I quickly went and bought myself a spacer and solved that problem. I don't like the way the stuff makes me feel so jittery, but I have to admit breathing is kind of fun. Funny what you miss when you haven't been doing it so well.

The steroids were another thing, why anyone would take this for any reason other than medical is beyond me. My chest X ray was clear, and now I'm just trying to let my poor lungs repair themselves from about a month of dry coughing.

Finally felt well enough to pack up the Christmas Decs into their storage boxes and heave them up into the attic. A friend came round to help and it feels like a huge nagging beast has been chased away. I had moved everything into one room and the garage but still every time I saw them sat there I realised it was getting closer to Feb. Anyone else still not put there's away yet?

I've also been clearing through stuff in this house, we moved in three years ago and finally I have pushed myself to go through some of the bits and bobs that never found a home. Some would say, just throw it out, you didn't need it. But I found some stuff I've been hunting for since the darn move.

Jinx had his 5th birthday on Jan 23rd, I cannot believe he's five. He is currently snoring away in his basket, much more laid back these days but still the best decision I ever made.

I am going to try and just write a little each time I log onto the internet... I'm not going to worry about what I should write, why I should write... just ramble and see if that gets me back to blogging. I have been enjoying reading everyone's blogs but it's time to get back in the saddle.

Sorry if this was a bit of a nightmare round robin letter type post... I hope to improve.


Labels: ,

Thursday, August 06, 2009

Why don't I write?

I have been trying to work out why I never post here anymore. It took me a while but finally I figured it out. I got lost, I started to read lots of different blogs, quite a few were knitting ones. I felt I should put some of my knitting here and then whumpf... my blog writing dried up.

That wasn't why I set up a blog. I set up my blog to tell a story and I guess it may be time to get back to that one. I'm going to tidy up around here and see if I can't find my way back to writing again.

Bear in mind, it's school holidays, I just dug up 40lbs of potatoes from the garden and last time I said this another year went by. But cross everything. By the way, does anyone have any good recipes for potatoes? Or ways to store them...

Labels: ,

Tuesday, September 30, 2008

Pardon me for being dense...

but how is it us ordinary folks are having to come up with the cash to bolster the banking system, when it's not our fault? I mean, if anyone should be being handed the bill shouldn't it be the idiots in the banking system who got themselves into this mess. Didn't those folks during the build up to this take enormous bonuses, invest in large houses, holiday homes, boats, shares etc?

Why aren't they being made to give back some of this stolen money? That is what it is, stolen money, they tricked ordinary hard working folks into digging themselves into so much debt that the system couldn't cope anymore.

Do you remember the days when people talked about their bank manager with respect? It was considered an important event when you went to see the bank manager. Now if you book an appointment at the bank for some advice and help you get handed over to some marketing person.

I have a tale to tell about that... I'm saving it for another day, but a word of warning don't let your kids go talk to the bank about setting up their grown up accounts without you. From what I've seen banks are no longer respectable, they are filled with dangerous marketing sharks out to fleece the customers. Apologies to the few honourable bankers still out that, I have a few friends in the business who are not like that.

So when are the governments going to put someone up on trial for this mess? Someone needs to be held responsible, someone decided that getting rich quick using the earnings of hard working decent people was ok.

Saturday, September 27, 2008

Statutes of limitation...

Do they ever apply to household incidents? I wish they did, when we first moved into this house I set about turning this show home into a home. So out I went and bought some extra furniture, which of course meant my trusty rechargeable screwdriver was out and about. Somehow between moving in and just after Christmas the charger plug vanished.

Over the last two years I've been on the look out for it. Even to the point where I scoured the house for any unattached black charger plugs, gathered them all on a large table in the garage and played match the plug to the device. Nothing, nada, nil. I gave up and tossed all the orphaned plugs into the box and left them. I have my suspicions, I live with a man who likes to tidy... only he doesn't tidy he piles, or he dumps stuff into the garage. Not where it should go, not in a tool box, no he just dumps as near to the door as he can.

So when he bursts through the bedroom door today - I'm in bed with a really bad cold - he's all holier than thou about the charger for the electric screwdriver. Trust me, I am almost 100% sure that he instigated its loss. No doubt he threw it into the garage along with some other tools he was gathering up and now of course it's all my fault.

Why does he need the screwdriver.... why is he so sensitive about it all... because he decided to have a tidy up, after ranting about the mess, no consideration for the fact I've felt like shit and been dragging myself out of bed just to get kids to school and home and fed... All week he's been out late at work for dinners, while the house has got messier. In his mad tidy up he hung every coat, seater, etc he could find on the coat rack on the wall in the hall. We have plasterboard walls... the whole thing fell down and of course we are all bearing the brunt of his embarrassment, I now sit here in fear listening to him hammering at the wall. Does anyone know the name of a good plasterer?

What he still hasn't seen is that if he'd just handed the kids all their many items of clothing to put away this would not have happened...

Excuse me while I go and scream.. oh wiat I can't my throat hurts too much.

Monday, August 25, 2008

Map or instinct ...

You decide. But consider this, hubby and I went to find a foodstore, we finally found one and did our shopping. Getting to the shop had not been simple, I think we went around the whole town once and we weren't entirely sure how to get back to the cottage and the kids.

I pulled out the map, hubby laughed, "We'll figure it out he says, look up there, autres directions, simple." Famous last words, I wondered if I'd see the kids again, memories of our last trip to France flash before me. I was clutching a map then when we attempted to leave Amiens, the city with no exits.

We reach the first junction, "Rochefort! We passes there on the way." This man is highly intelligent yet missed the mistake in his logic, I did try to explain, even pointed at the map. Fellow females you needn't read anymore you know this tale. We drive off fast down this road which I've just managed to identify on the map.

There is one exit in less than half a mile and then none for a very long time, almost all the way to Rochefort, our village is in the opposite direction. I managed to convince him barely in time to exit. He is making jokes and again chooses a direction with instinct just as I point the other way. Insults are exchanged and as signs show I might be right finally he pulls over and I demonstrate that I can still read a map. We turn around and set off...

We do this a few times and finally, bless him, he realises that when in the middle of French countryside you follow the map. We made it back via the scenic route, I've seen it now can we leave it.

By the way how is it the same make of Brie tastes sooooo much better here?

Posted with LifeCast

Sunday, August 24, 2008


It always amazes me how old religious sites keep their sense of peace. We are staying at a converted monastery and for the first time in a long time hubby had lie in this morning.

I felt relaxed as soon as we arrived, maybe there is an aura or maybe it's being in the middle of nowhere, but I love it all it lacks is the sea.

Geolocate this post

Posted with LifeCast

Monday, September 03, 2007

summer's been busy, and wet...

I just spent the weekend in my home town as it was my sister's wedding. Spent the week before manically baking and icing cakes but I managed it and the results were good and appreciated. Then took my mum and brother to the zoo for the day on the Sunday. That was nice too as spending time with my mum is a nightmare as she smokes like a chimney, at least at the zoo we were all outside so there is plenty of fresh air.

Today is last day of the Summer holidays, tomorrow George has to go into school for an hour and a half to see what its like, he starts senior school this year. My baby is eleven and all growed up.. well kind of. Amy was thirteen... I repeat THIRTEEN on Friday. This is not possible, I cannot be the mother of a teenager. Although she's been acting like on for years. We went to see sing-along-a-sound of music with some friends, all dressed up it was brilliant.

Today I plan to clean the house from top to bottom while George is out at a friends. Amy has begged to go out for the day tomorrow, so I have said only if she helps me all day today. Ahh blackmail and bribery the essentials of modern parenting. if all we achieve is to get everything back into it's rightful place it will be a miracle. Wish me luck....

Sunday, March 25, 2007

noonie's back...

I am so sorry, life just got so hectic. After the skydive we went straight into buying and moving house in less than six weeks. I have a beautiful new house, away from all the old memories. Hubby had been pushing for a move for the last few years but I didn't want to leave my support network behind. Admittedly they are only down the road, but it's not the same as them being next door.

Finally this Summer I realised that I was ready to move forwards. So I started looking, this brand new build house turned up and I fell in love. Mainly with the kitchen, it is a kitchen that just makes you want to cook. Kids and I made mince pies, cookies etc for Christmas. We haven't done that in a long time.

My final total fundraising, after the Gala Dinner I was asked to organise a raffle for was £10,000 for Cancerbackup. I was so proud of myself. I am now fundraising for Cancer Research. Though how you top a tandem skydive I don't know.

I've been trying to work out why I have found it so hard to sit down and blog these passed few months. Finally I realised that I was worrying about boring the non knitters with knitting posts and the knitters with non knitting posts. So this afternoon I have made a decision, you can all work the scroll button, so I'll jsut post what I need to and let you decide if you need to read it or not.

I am trying to get some order back into my life. Wait, no, not order routine. I need routines, I can so easily waste a day, a week, even a month without even noticing it passing. I don't like this about myself. I need to learn to have some self discipline and knuckle down to the jobs. I have some big ideas for running my own small business but at this rate I'll have retired before I've started, or someone else will beat me to it.

How do other people manage to blog everyday? Do they have a timetable, a list of topics? What about getting anything done if you're a stay at home mum like me? It's so easy to get home from school drop off and just sit in front of the TV. Tips, hints and naggings all gratefully recieved...

Sunday, November 19, 2006

I can fly...

Saturday Nov 4th I looked out and saw that the weather was great, today was the day. We jumped int he car... well crawled it was 7am and headed for McDonalds for breakfast then drove down to the airfield. RAF Weston on the Green in Oxfordshire isn't that far away but the journey took about an hour. Was I nervous? Nope just very excited, hubby, daughter and our babysitter came with me. George stayed at home didn't want to help scrape me off the ground.

So after a talk on safety and technique.. dangle don't mess with the equipment seemed the general gist. We then had the more important talk, how to look good on your DVD! I was relieved they had their priorities this way round. WE then had about an hours wait while I practiced my poses for the DVD and my daughter seemed to get more and more hyper. She was definitely worried, but also excited and wanting me to get on with it....

So here's what happened...

One step beyond... Posted by PicasaPhoto by Dave Francis

I'm flying Posted by Picasa Photo by Dave Francis

Beautiful day for flying... Posted by PicasaPhoto by Dave Francis

Nearly down.... Posted by PicasaPhoto by Dave Francis

I did it!!! Posted by PicasaPhoto by Dave Francis

I cannot recommend the experience enough, when I can figure out how to get the DVD online somehow I will... Many thanks to Loz Cross my Tandem Master and Dave Francis for great photos, brilliant DVD and reminding me to wave and breathe.

If you want to sponsor me belatedly... then click here

Wednesday, November 01, 2006

noonie's leap

Saturday November 2nd, I will again attempt to make my tandem skydive for Cancerbackup I would really love to reach my target of £2000, better still would be to find enough generous pockets to make it to £3000. Go on, it's a great cause and you've just spent the last month hearing about Breast Cancer and how it affects lives.

For those who missed in comments...

"didn't get to jump, due to low flying clouds..

hopefully will fly in Oct. Has to be on a Saturday as the base is military during the week.
noonie | Homepage | 09.17.06 - 11:10 pm"

Friday, September 15, 2006

final countdown...

At 8am BST I have to be at the airfield for my Tandem Skydive. We get thirty minutes of instruction, which I suspect consists of "Don't touch anything, do as you're told and have fun." Depending on the weather and how many of us are jumping I then wait around to make the jump.

I'm hoping that my partner will be good at this stuff,and smell sweet. My friends have been saying that they hope it's a he and he is hunky. Personally I just want someone who will make me feel confident and keep me distracted.

I'm not nervous tonight, excited a little hyper but not nervous. I think I'm not nervous because I cannot even imagine what this experience is going to be like and I welcome that. Finding out my daughter had cancer was an experience I never expected to have and was outside my comfort zone, as was my own cancer. But this will be a positive experience, even if I beg, scream and wail at the last minute. If it's anything like when I abseiled the first time, I'll lose it at the top and be dashing back to try again at the bottom.

The link to sponsor me is here

I'm almost at £2000 please help me take it over that,

hugs to you all