Wednesday, 27 May 2015

Happiness

Happiness is not always something that I feel. I have days when I don't realise how bad it has been until suddenly I feel this feeling. As I do today. And I feel happy. Not that I felt unhappy yesterday but I didn't feel happy like I do at the moment. 

I don't know if it's because I had two complete days of no work at the weekend. I read, played on my gameboy and did colouring in. I supposed I allowed myself to be a bit like a child again. And I had some sleep. 

Also yesterday I went for a run and did my exercises. I will do this three times this week, I only managed it twice the week before. So it could also be that, that adds to it. 

And the sun is shining. That definitely helps. I feel warm. Not cold. Being cold makes me miserable. I hate that. And I don't feel fat today. That also helps. I took a photo of myself to post on twitter as I'm wearing my amazing cat jumper and thought. Looking quite thin actually! And took a photo of myself smiling. And thought. Looking ok today Katie. Looking ok. 

I'm also in a national magazine. Basically the same article that was in the Sun on Sunday's magazine, Fabulous. But it still makes me feel good. And of course everyone on Twitter and Facebook is being nice about it. 

I am partly writing this as I put a post on Facebook last week, it was a post floating around as part of a mental health week and I wrote a bit at the start of my post about me. About the fact that often I smile and say I am fine, ok, well, good. Because in many ways I am. But in some I am not. I had a fucking shit week with fatigue and it completely destroyed me. Very few actually realise this about me and the fine line I have to tread. I'm living at home at the moment and I think in all honesty it was a bit of a shock to my mother. To see how I really am when I am like that rather than a phone call to say I am tried before crying and then feeling a bit better and hanging up. Very few realise this fine line I tread every day, constantly making sure I don't do too much. Which I inevitably  do. Because I'm 30. I want to be able to do things during the day AND the evening on only 8 hours sleep. But I can't. 8 hours sleep means I can just about  do things during the day. 10 hours means I can just about managed day and evening but normally one or the other.  12 hours means I can do both, but then not the next day. 

And then I feel fucking miserable. 

I often smile when inside I just want to cry. 

But today. I am smiling. And I'm smiling inside as well. 

With love and hope,
XxX

Monday, 18 May 2015

Fatigue

I try not to moan. I try not to complain. I know how lucky I am in so many ways. There are people I know and love who are not long for this land. And I can't imagine what that is like. To have been through it all. Chemotherapy. Radiotherapy. Surgery. All those hours of sitting in hospital waiting rooms and to still die. It's fucking shit. It really is. And I'm still here. I'm still alive. And for no apparent reason at the moment to change this, I am destined to be here for quite a while.

And yet. My life is not mine. I am plagued and hindered by fatigue. Those that have it know the fine line we walk. To make sure that there is enough sleep. Not too much walking. Not too many meetings. Eat enough food. Keep going using caffeine and sugar. I hate how dependent I am on caffeine. But if I don't. I don't know if I would make it through the day.

I smile and say I'm well when people ask. Because in general I am. And then I have days like today. A busy week last week. Not enough sleep last night. And I'm completely and utterly fucked. And when I say not enough sleep last night. I probably had 7 and a half hours. And I can't function. I had a meeting this morning and now. All I can think about doing is crying. I have emails to send. Admin to do. I also have to exercise because of my fitness plan. I have no idea how I'm going to do this.

And this. This I am sick of. And I don't know what to do. I keep on forgetting to take my drugs. Maybe it's because I don't actually want to be taking them. I don't. But I do. Because of the unknown. If I stop and the leukaemic rate rises and triggers the bone marrow back into producing leukaemic cells and I don't response to the pill chemotherapy I take daily. It's another story entirely. It's a stem cell transplant. It's living in hospital. It's having my immune system and bone marrow destroyed. It's possibly not surviving. Or having even worse side effects to deal with.

So really. I should just stop whinging about being tired. Because it could be so much worse.

With love and hope,
XXX


Sunday, 3 May 2015

My Body Doesn’t Like General Anaesthetic

So my lovely Bloglets,

This week I experienced something for the first time, and all the medical staff I spoke to were rather surprised that I have hit the grand old age of thirty and have never had one.  Probably because of my healthy history.  Is a general anaesthetic.

I arrived at Kings College Hospital on Denmark hill at about 6.20am with my mother to go to the day surgery unit to have a LLETZ (not a cone biopsy as previously thought and what  I talked about in my last JTV Cancer Support video blog https://jtvcancersupport.com/2015/04/a-phone-call/).  And for those of you who don’t think I’m capable of getting up before 10.30am I was up at 4am.  LLETZ stands for Large Loop Excision of the Transformation Zone. So, what is a LLETZ? And for those of you who are squeamish maybe don’t read this bit.  It’s a heated wire that cuts the tissue and cauterises it as it goes so it stops the bleeding as it happens.  Think of a cheese wire that’s hot.  Nice.  You ARE welcome.

I was a little bit apprehensive of the general anaesthetic as I’ve never had one before and a thought did flit across my mind of, will I wake up?  But clearly I did.  The staff were really wonderful and I was amazed that the doctor who carried out the procedure and their assistant were female AND that they came to talk to me before I had the procedure carried out.  My only experience of anything vaguely like this before is when I had eggs harvested, by a man, who I have never met before and introduced himself just before the sedation kicked in and he inserted whatever he did into me to start the egg harvesting.  Not very patient friendly, but I suppose that was nearly 8 years ago – a lot has changed with the patient voice and patient focus since then.  Anyways, she was really really lovely.  The only thing which had slight alarm bells ringing was when she asked me why I was having a general and not a local and it’s normally done under local.  I of course had no idea, but then the letter was found in my notes to say why.  Afterwards the doctor said it was a good thing as they had to remove a lot, more than they thought of my cervix.  Not only in terms of surface area but they also went down 14mm which means that when I am pregnant (fingers crossed) I will need a stich put in to keep my cervix shut and the baby in the womb.  This doesn’t worry me as I know it’s a pretty common thing and I know women who have had it done and had healthy babies.

That bad things from that day.  General anaesthetic makes me really sick and I fucking hate feeling sick and being sick.  I was offered a cup of tea and a sandwich when I came around – no thanks.  The nurse then offered me cold or warm water which I thought was really good of her as warm water is less of a shock to the system, so I said yes to warm water.  I sipped it really slowly as I was feeling a bit sick, felt better and then worse and was then sick.  And felt better so was offered more water and a couple of biscuits which I drank and ate really slowly.  Felt better, looked over the ward and was very jealous to see a woman drinking tea, eating a sandwich, and was then very sick.  I was told I could leave and felt like shit in the car, went to sleep and felt better by about 3pm.  I took an hour to eat 3 table spoons of yoghurt at home which the doctor advised when I told her how sick I felt and I managed to keep it down. 

I don’t know how long I was out for.  The procedure only took about 15 minutes.  I don’t know what time I went into theatre, around 8.15 or 8.30 I think and then next thing I know is that it’s 10.30.  I’m still not 100% and yesterday was my first day of being able to eat properly again.  Annoyingly I don’t feel nice and thin after not eating properly since Wednesday as I didn’t feel 100% then.  Anyways.  Another bad thing, the anaesthetist who told me his assistant had the magic touch with inserting cannulas and I wouldn’t feel a thing lied.  It fucking hurt.  And I have had those before and put it more painlessly.  So that was joyous.  The bruise has nearly gone.  And my throat hurts from the tube.  Whinge whinge whinge.

So that was my fun few hours in King’s College Hospital on Thursday.

BUT on the plus side, no pain whatsoever from the procedure itself, thank fuck for my superhuman power of a stupidly high pain threshold.  I am taking it really easy though as advised.  Basically been on the sofa or in bed.  No exercise for a week, strict instructions on that as they don’t want any heavy bleeding to happen or infections as that could mean going back to hospital for re-cauterisation and antibiotics etc.  I don’t want that, and I am a very compliant patient.  Chronic fatigue helps with the whole not doing anything anyways.

Results in about a month.

Normal hospital on Tuesday so will be back after that no doubt.  Also need to so a charity blog about the stuff I’ve been doing recently.

With love and hope,

XXX