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.
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.
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.
I don’t know how to express how I am feeling.. desolate, numb, angry with the world.
It wasn’t enough that Dad was diagnosed with incurable blood cancer a year ago, but now Mum’s health is deteriorating quite badly. Her hernia episodes have become more and more frequent causing her pain and vomiting. On Tuesday she was so bad all day that in the evening we called an ambulance and went to hospital. The lovely nurse gave mum some hope that they might treat her hernia at last (she has been waiting since February). They told her to come back at 9 in the morning when the surgeon would speak with her.
So, the following morning we hang around for over six hours, only for a tubby man with a big attitude to tell mum quite coldly that if they operate there is significant risk of death, especially because of her weight and also her heart vessels are narrowed (nobody ever fucking told us any of this before). After ten months of waiting and suffering during which time it was never suggested that she should lose weight, suddenly he drops this shitty bombshell. Then he just sent her home, feeling utterly devastated and lower in morale than I have ever seen her. She is now saying that she’s too scared to have the operation.. but she has no quality of life as she is.
I’m terrified I’m going to lose both of them. I have nobody else.. not even extended family. My brother is not someone I would turn to for support. We are just too different.
As for me, I finally got my chest x-ray done today. I’ve had this cough for about six weeks and haven’t felt able to exercise.
Every day I send email after email looking for a home for my homeless friend. But I get rejection after rejection because of his dog.. and today I even got accused of being a scammer by some bell-end on Airbnb. It’s freezing out there and there is no hope for someone in his situation..
Another friend is trying to come to terms with having lost most of his bowel in an op.. he has to be drip fed for twelve hours a day. And another friend is in hospital with chronic pancreatitis and now flu! Dad won’t come near me now in case I am carrying it!
So I quite frankly feel like giving up on everything.
Hohoho Merry Christmas
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..
I had a massive emotional breakdown the night before last. It was almost three in the morning, and I had just been lying in bed tossing and turning, with negative thoughts torturing my brain. I was feeling more and more afraid and anxious.. and the more I tried to calm my thoughts in the emptiness of night, the worse I seemed to feel. The loneliness kills me and feeling like I have completely failed at life, failed myself.. failed my parents and failed God. On top of everything, I was really sad that my dad had been bullied by our neighbour to get our tall conifer chopped down. It was a beautiful tree that had stood tall long before I came here 36 years ago and it attracted many birds. Stupid as it sounds, it made me sad.
Then, as I lay there I heard a massive thump, squeal and scrapping sound on my flat roof, I figured a fox had caught one of my squirrels who I love. I was so upset, and it felt like the final straw with how I was feeling. I couldn’t help myself crying and sobbing, and I became hysterical. Whenever I cry like that, for some reason it makes me start coughing and then retching.. so my dad who sleeps in the room next to mine heard and thought I was dying. He came in in a panic..
Anyway, what ensued was a long talk with dad and we ended up hugging. My life would be so much easier if I didn’t love him the way I do. If I didn’t feel so attached to both my parents.. because there really is nothing else for me to live for.
It’s a week until Mum’s cardiology appointment and two weeks until Dad’s oncology appointment. The nights are really drawing in and I feel so so tired and depressed most of the time. Tomorrow I have my first counselling session.. I hope it will go ok, i’m really nervous.
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