Sorry but today is another long post so tea/coffee/biscuits no toilet or bathtime reading so you can’t say that you haven’t been warned.
So back to yesterday briefly where mom has dropped me off for chemo. I’m dreading the side effects plus hair loss so I’m not too happy. Mom is concerned that I can carry my bag but I just say I’m fine and head up to the Sunrise Ward. I’m put in bay 3, bad view from the window but hey it’s okay. On my right I have a man who is having a blood transfusion, he has earphones on and so I can’t talk to him. On my left is a black woman with her friend who talk constantly to each other and she is saying about her first hour everyday spent praising the Lord, and then there was an older man in his late 70’s with his daughter.
The nurses come to do their stuff, unlike the other chemo there are lots of different smaller bags to go through first before the chemo. Plus an injection, before the nurse says anything as she comes towards my left arm with the needle I say ‘don’t worry, just a small prick hey,’ she laughs. The steroids and stuff that make your bum tingle safely in and now for the 2 hours of chemo. Left alone I get on with my project work. There is wifi on the ward but I can’t be doing with dealing with ‘buffer face’ without Steve to help so I stick to work.
The black woman on my right has obviously beaten breast cancer, she has come for an injection, the curtains are pulled around her as she is so scared of needles. Really!! I can hear her getting distressed and I can’t really understand anyone who has gone through any treatment like chemo can still be afraid of needles. A bit like having a baby, you maybe shy in the early days of having your bits looked at but afterwards don’t really care who see’s it at all. She thanks the Lord and vegetables for her remission. If I ever get into remission I shall tell everyone it was due to Rita’s prayers, too much coffee and lots of fags that did it just to shock people!
The elderly man is ready to go home, he has had to have the doctor to him twice due to chest pains and he has an infection. The nurses are checking his drugs and ask him how much Fragmin he has left (the drug I had to stab myself with after surgery to prevent blood clots). ‘Oh I ran out of those two weeks ago’ he said. The nurses are horrified and they tell him he could have had a heart attack. Now the daughter is angry and tells them that if someone had just called her about the drugs etc she would ensure he had what he needed, she told them that she couldn’t make every appointment with her dad but is frustrated that no one talks to her. Her dad talks about wanting a good nights sleep from pain and the hours he sits alone in his chair. I’m not as alone as this poor man he is worse as he faces pain and loneliness everyday. How are we getting care so wrong in this day and age??
I have asked about my CEA levels now 4 times but the same answer comes back, ‘oh I’ll check in a minute.’ These are cancer markers in the blood to see if it’s getting worse. I ask who is actually in charge of my pain and the nurses look confused, they confer and decide it’s my doctor, my GP.
I continue with project work until they tell my that the hairdresser will see me now. So I’m unplugged and wheel myself and the drip machine with the aid of my walking stick into the hairdressers. It’s actually just another side room, no sink or hairdryers here just bags of samples. We go through all the books to pick out 3 wigs, they are ordered and if you like them you can chose one for free, if you like the others you can buy them too VAT free. I’m not enthusiastic about this and she can see this. She points out that with cancer choice is removed for you but with your hair it is something that I can finally choose.
So I pick out 3 styles and job done. She then starts to advise me about new hair growth and how to shave the first growth back, not all the way but just to stimulate more growth. She says that my hair will start to grow back after treatment finishes and that I’ll soon have my hair back to normal. Are you mad I reply, it’s taken me years to grow this to it’s present length and with a prognosis of 18 -24 months starting in February I don’t think I will have time to grow it back. She is bent double with laughter as I was saying it jokingly. She thought it was so funny, am I the only person who can laugh at this shit? I go back to the ward and try to continue with my project work. I fall asleep to be woken to hear that it’s all over and I can go home. OMG I didn’t snore did I? The ward was now empty they said it was a gentle purr (liars) I did dribble and that they didn’t want to wake me up. I ask again about my CEA levels and they say they weren’t requested, liars again I think. I have decided that the hairdresser is to be called ‘The Wiggy Woman” as she doesn’t actual do hairdressing so that’s the trades description legalities covered 🙂
Chemo over and Steve picks me up, there are no side effects like the old chemo but I’ve gone 5 hours now without a fag and a coffee plus I hear the news about the nurses now not coming so I’m pissed off. We return home and I’m set up in my chemo gazebo with my new bell, a present from Tammy. We now have a system in place, one ring for Steve, two rings for Mom and continuous ringing for Rebecca as she is likely to be in her bedroom and may not hear me. My loved ones are expecting the same side effects with starting chemo as before which means me being shit for about 5 – 9 days but I’m fine. Steve and I discuss the nurses as he has spoken to them and he is reassured, I’m just mad. So we do some research. Ian Rennie cover two counties Bucks and Hertfordshire. It costs them 6.5 million pounds to provide their services and 85% of this comes from public donations, wow. Now as fab as that is why is it that the NHS are relying on charities to care for cancer patients? Where are the district nurses? Is all this due to continual cuts in our NHS that charities have to pick up the pieces? How is that right? No wonder it goes wrong! As they provide palliative care until the end it enables me to ask Steve about end of days, something that has been troubling me. I want you here he said, oh good cos that’s what I want but not everyone wants a dead body in their house and after the service we have received so far I remind him that it maybe 3 weeks before anyone moves me and there would be maggots everywhere. Don’t worry he says as the undertakers are paid and therefore the service will be quick.
So tea done and after a lengthy call from Nicky it’s curfew time. But I haven’t been able to do ‘wack a comment’ so I’m sad about this but a deal is a deal and I wait until after 11 pm to answer you all and your lovely messages full of love and caring.
Now I forgot to say about Saturday’s ‘Strictly Come Dancing’ an hour and a half of nothing happening at all really, they could have done this in about half and hour or shorter but Peter Andre is on it and he supported me with his retweet so I’m going to support him, he looked fabulous didn’t he hey 🙂
Steve goes to bed before me and our new plan courtesy of my moms brainwave is to put a quilt on top of my side of the bed for extra softness so I can sleep. I assure Steve that I’ll be okay, I’ll do ‘wack a comment’ and I’ll come to bed. He goes up and the stomach cramps start now I was expecting things to move as it’s a side effect but I didn’t expect nothing more than rabbit poo and I’ve seen bigger on country walks so if that’s it’s worse it’s going to be then I can cope 🙂 I didn’t take any morphine before I go to bed as I don’t feel I need it at all, I feel better than I have done in weeks. I go upstairs at 1.20 am and clean my teeth. Now I normally get undressed in the loo so that I don’t wake Steve up but I’m stuck as I went into hospital with a bra on and now I can’t get it off without feeding it through the wire, I have to remove the drugs from the bum bag and finally I’m free. I sleep until 5.30 wow even the cat is impressed and Molly even decides to say good morning too as it’s a more reasonable hour. So I will await the nurses due at 10 am and I will be nice to them as Steve is worried that I want to give my feedback to someone about the lack of support but a self funding charity hearing my rants is probably not the best way to win friends and influence people.
The nurse finally arrives, she is Irish, she is lovely and she even takes her tea the same way as Rita does (waving the tea bag at the water, no sugar or milk). She spent an hour and a half with us. She listed all my drugs, discussed pain control, sorted out my blue badge (Jo will be pleased) gave me the contacts for wheelchairs, she organised a prescription to be collected today so that I can start targeted pain relief today that may work. She offered us a hospital bed and a commode, now this is a step too far and we declined the last two options as I think we are talking end of days equipment here. Thank you Suzanne, just brilliant and when she leaves mom hugs me “help at last” are her words. I quickly message Rita as I know she would be happy that the nurse is Irish and it would make her smile. I call Jani at Beating Bowel Cancer and we have a long overdue one on one chat, thanks for all your support Jani, and then i sleep as I’m now knackered.
Steve whilst I’m asleep goes out and buys me a wheel chair and the Red Cross nurses drops in to see if everything is okay, now help and support is coming out of everywhere. As I’m talking to this lady the phone rings and you will never guess who it is… Macmillan complaints department!! This has probably come about from Jani at Beating Bowel Cancer endlessly contacting them for me to get me some help. Poor Chris the gentleman who calls me gets it both barrels plus tears. I tell him some of my story and the feeling of abandonment by them and also how shit their literature is. I told him I’ve wrote my own sex advice on my blog and tell him to read it as that’s real advice and not the shit that they produce. Steve let the Red Cross lady out as she could hear my rant and Steve says she was scared. Then Steve listened to my rant at Chris from Macmillan and he says that he would have been a little more calmer. Well do you know what, sometimes people just need telling like it is! Anyway my case is going forward as a formal complaint and I will get feedback.
So what a day hey! It’s been mad here but at least now I have help at the end of the phone for my loved ones.
Finally, thank you to those brave people who have volunteered for the calendar. Steve is coordinating this for me offline so if you could drop him a line he will give you all the information you need. His email is shown as an image to beat the nasty spam people! If you live within a reasonable radius he can take the picture for you, and if you live further away or have a photographer friend he can give you the requirements.