Black

Dad has been in hospital since Thursday.. He is now back on chemo and thalidomide.. But the abnormal protein from the cancer has caused problems with his kidneys.

I’ve been here for hours every day, and then when I get home I’m tired but need to feed mum and try to get washing and cleaning done. It seems very difficult to get answers at the hospital and the right hand never seems to know what the left hand is doing. Dad has been moved three times on this emergency ward. He was meant to be moving to the renal ward.. But no beds are available.

I can’t tell you how hard I am finding everything. He is not ever likely to be well again, as this cancer is so evil. I feel so sad, scared and alone.

In less than two weeks mum will be in here for her hernia operation.. I’m just trying to get through each day at the moment.

The beginning of 2019

I’m really really sad. Spent the night in tears, looking through old pictures of dad. My heart is breaking for real..

I knew I was dreading his hospital appointment yesterday. For good reason. He now has tumors in his ribs, spine and pelvis and his blood protein levels are high. He’s going back on chemo but without being able to take steroids his chances of remission are not good. So the consultant wants to try him on a different steroid. However, he’s going to ask the psychiatrist who looked after him last year (we didn’t like him) whether he will give the go ahead. If he says no then we’re basically fucked. We would fight that decision.

On top of everything, he’s ill in bed with a nasty cold and faringitis. I’m really worrying because his immune system is compromised with this disease as it affects his white blood cells. I don’t know how worried I should be or how to know if he is developing an infection. Plus I feel awfully guilty because he caught the cold from me.

I did celebrate new year’s eve quietly at home with mum and dad, but in my heart I didn’t want this year to ever start. I know it is going to be extremely tough and I don’t feel strong enough to go through it. I don’t know how to get from one day to the next and I’m shit scared.

Christmas and New Year

Dad’s cancer is getting bad again so he has to go back to see his consultant on the 3rd January and will go back on chemo. They are also putting him on thalidomide and trying a different steroid. There is a risk of him going psychotic again which is very worrying.. But apparently the risk is less than dexamethasone.

Mum’s op is on the 1st Feb, which is a real worry. I’m so scared now that she won’t survive. And by then dad will be suffering with the sickness of chemo.. So happy days ahead(not).

We’re not doing Christmas presents this year. None of us wanted the stress or expenditure. My brother and sister in law are coming Christmas eve and will probably stay a few nights. We are doing a proper Christmas dinner.

I need to be very careful with the drinking. I have a tendency to use alcohol as a way of escaping the problems of life, but it always ends in disaster. I do not want to ruin Christmas.

New years eve can do one. I hate that night and don’t feel like celebrating the start of next year. If 2018 was shit, I’m sure 2019 will be shitter.

Back to hospital

Tomorrow mum has her echocardiogram to find out what is going on with her heart. She is desperate to be given the go ahead for her hernia operation as this impacts her life so much, but also we are really worried about her heart.

Then Tuesday dad is back to see his consultant and find out where we’re at with the dreaded ‘c’ word.

So a week of hospitals and worries really..

Drowning

And so it will be October tomorrow.. the decline of light into darkness, green into mush, warm into cold. I don’t like it, I never have. I get depressed all year, but it feels harder and harder to face the winter as each year passes.

This time a year ago we didn’t know that Dad would be diagnosed with incurable cancer, nor did we know that Mum would have a heart condition. I often think back to times spent with my parents when we lived as if we had forever. I wish I could go back and truly appreciate what we had.. but that is never possible for us foolish humans to do. We all know it will never be that way again. There is a constant cloud hanging over us, teasing us, taunting us. Reminding us that we are transient beings.

I’ve felt terribly lost and alone my entire life.. as if i’ve just somehow stumbled to where I now find myself.. 38 in October.. and absolutely nothing to show for it. I could blame a lot of things and circumstances.. but ultimately I must accept that there is nobody to blame but me. I fucked it all up and now I am here. If I could turn back the clock, I would do so many things differently..

Referring to my last post, alcohol and me have had a complicated and unhealthy relationship throughout my life. This is something that literally started the first time I drank a little at the age of fourteen..My parents had allowed me a bit of sherry with the meal, and I had then taken it upon myself to find the bottle which was almost full and drink the rest of it. I was so ill, I had at least two days off school. Of course, we never told the school the real reason.

So, whilst I beat myself up for the number of occasions I have abused alcohol, I partly feel that a personality trait exists within me that was there from day one and I couldn’t help. Recent events scared me a lot, because I did things that are not me and that I would never do otherwise, and in doing so I put myself in grave danger.

Don’t get me wrong, I am not your usual type of alcoholic. I do not wake up and crave a drink, nor do I have to drink daily, weekly or even monthly. But when I do, and when I get that feeling of relaxation from my anxieties and escapism.. I want more of that feeling. I feel like I am invincible.

I’ve finally decided to go and talk to a counsellor, and I have found someone who I will contact this week. I don’t know if it will help, but I want to start working on and addressing the things that hold me back. I realise i’m utterly lost and I can’t do this alone anymore. If i’m finding life too hard now, the future looks even scarier. I need help.

I went out this afternoon with my parents for a meal, but we were unable to finish because Mum’s pain she gets due to her hernia meant that we had to get her to the ladies and then leave quickly. In fact, I can hear her vomiting downstairs as I write this. Dad is due back on chemo in a few weeks.. and then he will be vomiting all the time again. I don’t think I can face this winter.

I do so wish I wasn’t so alone. On the way home I looked out at the people enjoying their afternoon.. and 99% of people were as a couple walking hand in hand. I have never had that sort of companionship, and I doubt I ever will.

I just need a cuddle. I’m a cuddly person, but there is nobody.. not even a pet to do it with. I always felt that my mum never cuddled me as a child, but then I felt guilty for thinking that and that I must have got it wrong. Then recently my Dad said to me about Mum “she never held you or cuddled you” and suddenly I felt validated in how I felt. She’s such an enigma because she’s so sensitive and loving.. but I guess maybe because her mum wasn’t warm.. she just didn’t know how to be that way. Or maybe she just couldn’t bond with me back then. I know she loves me nonetheless.. and I love her beyond words, as goes for both my parents.

All I know is that I know fuck all and i’m lost and drowning. Please hug me..

Anyway, i’m jumping around with random thoughts as always. I shall sign off with love and best wishes..

me x

We have just been…

We have just been away for a couple of nights. The day we went happened to coincide with the day the long heatwave ended. Lol

Even so, we had a lovely break. The hotel was really nice and I had my own double room with a seaview balcony. Luxury.

I have missed having a double bed since I moved back with my parents. I have missed being independent.

I’ve been out a lot recently. I’ve even started driving to the gym on my own. Yesterday there was a power cut when I arrived. The manager walked through to the bar with me and told the staff to look after me and give me what I wanted on the house. I had a glass of wine and some yummy spiced nuts. The power came back quickly and I was able to do and hour and forty minutes in the gym.

I had a second date with that guy. We did kiss, and he’s lovely.. But something was just missing chemistry wise for me. So I sent him a message to tell him in as nice a way as I could, and we said we will be friends. I doubt we really will though.. Who knows. I feel very sad about it.. But at least I have got out and been on a date.

I really do wonder if there is someone out there for me. Or maybe I will find a way of accepting life on my own and being ok that way. It’s hard to imagine, because all I’ve ever imagined was companionship. I guess whatever will be will be.

Dad has been really enjoying his time off treatment. He had the head scan results which were good and showed the tumor in his head to have shrunk right down. But we have an appointment with his consultant on the 28th and will find out how his blood count is and if/when he has to go back on the dreaded chemo.

It’s all just a case of taking each day at a time and trying to appreciate what we have.

I hope those of you reading this are doing well.

Love and peace

The long British summer and how much it means to us..

This year is honestly the first good summer in the UK I have ever known. It has been hot sunshine for the last five or six weeks, with it set to continue.

I am a sunshine gal, always have been. It just makes me feel better. And it seems apt that it is also the first year in 20 that my parents have been unable to go abroad for their holiday. They always go to Greece.

It also just so happens that, whilst in not so good circumstances (dad’s first treatment plan has been abandoned as failed) they have given him a few months off treatment to enjoy life. He is loving it.. Being able to eat again and not having nausea a few days every week. And not having to go to that dreaded hospital. We are literally living for the moment and trying not to think of the future.

We have had several day trips to the seaside, have swam lots in the sea and are going away this week for two nights and the week after for three nights, during which we are also going to see one of our favourite singers.

I don’t ever want this summer to end. If only I could capture it and keep it.

Sending out love and peace..

Here’s a couple of pictures of the sunset I took one day on the way home from the beach..