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 5Â – 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.
Glad to see your new treatment seems to agree with you a little more and you don’t seem to be in so much pain. What sort of pictures you looking for as I have an extensive collection . Don’t be to hard on the nurses as it’s always the overpaid, under skilled admin in these organisations that cause the shit.
The post robbed me of the silly faces I placed after the pictures remark !! 🙂
thanks, love the silly face xx
we have lots of people offering up their bums but if you want to contact Steve via the blog he will fill you in as it’s his baby project, bless him
New chemo is much better just sad I’ll loose my hair but hey no choice about that. Your right there are lots of lovely people out there but there are also too many overpaid ones that are shit. xx
I still fear needles when i have my blood tests done for my oncologist,i dread them.The nurses used to struggle to find my veins for my chemo,it was a nightmare.I lost my hair quickly & my wig ended up down the tip lol.I cried for 3wks when i lost my hair but soon got used to it & saved money on shampoo.
Big Hug huni,stay strong xxxx
oh sorry then as you may have felt my words harsh then. Sorry about the hair loss, mine is okay at the moment but it starts from 2nd cycle so I’m ok for a few weeks but I know I’ll hate it xx
Oh wen. Finally someone has taken notice. Charities are like buses aren’t they. Nothing for months and then 2 get in contact on the same day!!!!!!! Unbelievable.
Has Steve had to buy a wheelchair? RUDE!!!!
All that matters in the end though is that you are cared for and your needs are met. If you’re happy mate so are we. Love to you all. Xxx
Thanks Nicky and you can hire them for £25 per month or buy one so Steve just brought it for me, bless him £150. Happier today as pain is under control 🙂 it’s about quality of life now xxx
Hi Wendy
Wow another 24 hours in the life of “you Guys”…Steve-you are more than wonderful and I know it’s shit for you but If there was an award for bestest husband in the universe I would nominate you.
Wendy- It makes me sad that you are talking about end of life … guess it has to be done but where there’s a will there’s a way and you are one hell of a strong woman…..what more can I say except we are all standing in your corner punching the hell out of this cancer for you.
I wonder what Molly will do when you start ringing your bell …. bring you a ball if the squirrels haven’t nicked them all lol.
Sending lots of love
Tracy
Xxxxxxx
Thanks for your lovely comment. just lovely and yes he deserves a hubby award god bless him. Molly hasn’t reacted to the bell yet and I need to do a squirrel update tomorrow, thanks for the reminder. I know everyone is fighting for me and thanks so wonderful of you all and I appreciated it so much xx
AT LAST! You sound a bit more upbeat and what a difference a half decent night’s sleep makes. Wheelchairs: treat yourself to a 10cm cushion (4 inches). There’s a place up in Downley which I frequented on my Mum’s behalf see http://independentlivingconsultants.co.uk. I’m sure they will have them or, for a laugh, go to the South Bucks Goat Centre as there’s a place there (just this side of Stoke Mandeville). It makes riding over bumps a bit more comfortable. The Downley place is a real eye opener ad to what’s around.
Now I blame you entirely for the fact that I’ve agreed to have a photo taken of me baking wearing only an apron and possibly shoes. We are running a “guess the weight of the cake bakers” fund raiser at a WI event in October. . It should be warmer than riding a bike though, lol!
Now I’ve made an appointment to get my legs waxed. Why do you only lose head hair, has anyone explained? That’s a real bummer, isn’t it?
I’m going to drop your Diary Secretary an email to see when we can pop round. Xxxxxxx
Thanks for the info and I know the date is set for our chat and I’m looking forward to seeing you soon. It isn’t just head hair the info leaflet is wrong, if you are going to loose your hair it goes from all over, lovely but think of the money I’ll save hey. see you soon my lovely xx
Just spent £45 on a full wax. You’re laughing!
LOL :-)))
Glad you are now getting the support you so well deserve Wendy and glad you are feeling better today….you still amaze me with all your courage and how you still manage to make jokes…sending lots of love to you, Auntie Judy, Steve, Rebecca and Richard xxxxx
Thanks my perfect cousin and I’ll pass on your message to them. Gotta laugh hey cos crying doesn’t help at all. I do cry but not often enough I think that once I start I won’t stop xxx
only just caught up ,glad some help at last,thinking of you as always.x
so glad your feeling a little better, about time they seem to have forgotten all about you. but after all this upset things seem to be coming together. they can control your pain and you should feel so much better. hope that this is the start of something good and that you will be so much better from now on. (fingers crossed) xxxxx
at last hallelujah! you have finally been offered some sort of outside support with hopefully better pain relief i’m gobsmacked how shit things have had to get but hopefully it will continue to flood in.
just need to offer even though i know its your choice as you have the most amazing friend and family support but i would willing sit with you through chemo treatment and bore you to tears and be your verbal emotional punchbag just saying 😉 i hate to read that you are there alone but i guess that’s my emotions xx
we are holding a Macmillan coffee morning and bake sale at work this month and i would love to make your favorite cake what is it? and i’m going to donate to your beating bowel cancer with Juddy Hugs x
personally i think you would rock the bald look cos you’re just that awesome 😉
keep pumping the drugs and poppin the pills and remember to stop every now and again just to pick those precious daisy’s
love you xxxx
Hi countess Juddy, Yes it’s great to finally get help but for Steve really as much as for me as he has that pressure when I’m in pain and now he has someone he can talk to. I do chemo on my own through choice as unless you have been through it you can’t understand how it feels but thanks for the offer and any long journey for you up here should be for pleasure only. Favourite cakes would be a choice between all cake and Lemon Drizzle. I’m doing okay and the pain is easier. Are you back from the states then now? Loved the pictures 🙂 and finally I’ll have to embrace the wig look.
Oh and finally again you did offer the help of a fireman’s bum and this would be fantastic. Contact Steve on the link on yesterdays post to get details, the photo’s so far are really good and I’d look a firemans bum in there with those yellow wellies maybe with the fire truck in shot, fabulous fun xx
So pleased for you all that at last you seem to be getting some sort of support through all this shit. Xxx
Thank you as it’s a relief at last 🙂 xx
You know how I feel today. It’s still the same.
Ah Sure she just had to be Irish 🙂
Chuffed to bits for you my Lovely<3
It's also good news that you were comfortable in her company as that counts for a lot doesn't it x
So hopefully we won't hear anymore heartbreaking journeys of pain and anguish , in this day & age it is so unacceptable and should never have been allowed to happen.
Please make sure to follow through with the complaints with Macmillan because their negligence is an absolute disgrace. It needs adressing and you and your wee family deserve a formal apology xxx
Now this session of chemo sounds like music to my ears to know that you slept through most of it being dispensed and not suffering so horrifically from the side effects as you did last time, long may it continue.
Well my sweets let's hope we are on the way up and the wheelchair will give you the ability to get out & about and still be able to go with Steve to give mollymoo a wee jaunt in the park
🙂 xxx
As always I'm sending you masses of love & hugs and I am with you all the way. Your journey is our journey xxx
Hi Rita, I was comfortable as she was like you even down to the tea! Complaint has gone in and I enjoyed giving them my feedback as it’s not just for me but for others, what if i were old and on my own hey? Just not good enough. Thanks for you support and daily love xx
I love that you are still laughing your way through this shit! God bless your heart!
Glad you’re finally getting some support better late than never!
Love and hugs xxxxx
Hi Leah, yes finally getting somewhere, it’s a great weight off Steve shoulders too that he has support at the end of the phone. I have to laugh at it, some people may find this odd but I can’t be negative all the time it would do my head in. Thanks for your comments xx
So pleased you are getting the help you deserve love. At last they are helping you. Lots of love to you all xxxxxxxxxxxxx
Hi Sue, yes finally some support from people that can actually help 🙂 it just took a long time xx
I’m glad you’ve got help and the dreaded treatment is better, don’t you worry about your hair and if it’s any consolation I lost every single hair that I had, eye brows, eye lashes, under arm, legs, tuppence I was like a newborn baby, silky smooth,, I didn’t realise it was just head hair that come out, trust bloody me to be different again, it was lovely to shower, no shaving or washing hair, done in half the time, we would go out for a meal or anywhere really, I had my wig on at first then I’d start to sweat and off it come, the shock on people’s faces, like you said, you don’t give a dam and if they don’t like it it’s their problem, they’re not going through it, please don’t worry about your hair, as long as your feeling ok that’s all that matters, it might come In Ringlets like mine, can’t even get the bloody brush through it some days and really feel like shaving it off, keep well sweet, xxxxxxxx
Your hair is lovely and thanks for the encouragement, bald could be fun I suppose by shocking people LOL xx