Bloods were good so was given my injection of Denosumab, Ibrance and Letrozole. Saw a really lovely nurse today who made me feel human. We laughed and swapped notes on apple crumble recipes. Was a pleasure. I told her I had lost a crown but she was happy for me to see what my dentist says. I asked about my CT scan and she said I will get a letter two weeks before appointment in November. A five month wait. Crazy.
However, I wasn’t happy yesterday when I went to have my blood taken and saw patients with masks around there necks and a family of 15.....yes 15 The foyer with Management and security gathered together. Think they were refusing to move as there was obviously a relative in the Cancer ward. My husband isn’t allowed in and yet this was going on. They were there for over an hour then sent outside. I know because I was early to go across to my GP’s surgery from the hospital for a flu jab. Another story. How comes so many relatives were allowed to even enter this brand new hospital?
Then, the crowning glory. I went across for my flu jab. Waited 20minutes and still no call from the nurse so I left. Sod it was my reaction. They know we are not supposed to sit in waiting rooms with Joe Public due to the meds we are on so why did this happen. I was not happy. I hate this surgery anyway. The building is old and used by students on Campus in Liverpool. As we are on strict lockdown in Liverpool with students now confined to halls I just freaked.
To sum up today went smoothly, dentist next week and update on ONJ and CT scan on record for appointment. What more could a girl wish for.
Every cloud has a silver lining........so they say 🙂
I'm glad you had your treatment and you have an appointment through to see the dentist. It's about time, isn't it?! Sorry to hear you didn't have your flu jab though. I got mine done by chance last Friday at Lloyd's Pharmacy in a nearby town. I was going to wait for the letter from my GP surgery to come through, but when I went out to eat last Friday with my husband and we were on our way back to the car he spotted the sign on the pharmacy window saying they were giving out flu jabs to eligible people, so I popped in and got mine done. Maybe you can do the same. They were just letting one person in at a time though, which was good. I am trying to avoid crowded areas too. More should be done to stop crowds forming. When I got my appointment letter through today for my CT scan it mentioned that friends and relatives still can't attend appointments, unless a carer is required to push a wheelchair.
Sophie
in reply to
Hi Sophie, it’s great you had your flu jab. There is a shortage...apparently. I was really considering going to my pharmacy. It’s just a two minute walk from where I live and they are so nice in there. I shall give them a call tomorrow and see if they can do it for me. There’s never anyone in there now as our GP surgery which is adjacent to it is closed. Don’t know why, so, there’s no one collecting prescriptions and waiting. It’s all done online.
Glad you had a great and ate out. Makes you feel better. Town here is so busy at the moment. Maybe early Christmas shoppers.
Take care
Cheryl
in reply to
Hi Cheryl,
Thanks. It's one less thing to worry about. I hope you can get your flu jab soon too. My GP told me the same thing about a shortage. He is hoping that eligible people (like us) can get it first, before everyone else makes an appointment for it. I think it's a good idea to call the pharmacy and see if you can have the flu jab done. The pharmacy where I went said they would send the record over to my GP surgery.
We like to eat out at least once a week, but with the way things are with restrictions we sometimes eat alone. The cafe we went to on Friday was empty. We were the only diners!
I had my flu jab as part of a mass vaccination at the local school on Saturday morning. Everyone in the town entitled to a nhs vaccination was sent a letter with a time slot based on surname, mine was 9.30am. I arrived and joined the queue which was snaking round the car park. It was amazingly orderly, everyone was 2 meters apart and masked. The queue was moving very quickly. On entering the school everyone had their temperature taken and had to confirm they didn’t have any Covid symptoms, then joined the queue for the vaccination and asked to expose their arm. In the school hall there were 10 stations and you went to the next available one and received your vaccination and out the door at the rear of the hall. The whole thing took less than 20 minutes.
I’m also waiting for a ct scan I’ve been told that it will be November at the earliest.
I moved hospital because the nurses at my last one were so unfriendly. The nurses in the new unit are so different, so friendly and approachable, it makes a huge difference to how I feel about receiving my treatment 🙂
How reassuring to know that the vaccination programme was well organised. That must have made you feel relaxed about it. Our surgery was open last weekend but they were doing it on mass and there is absolutely nowhere to queue safely. Hence my Cancer Nurse was going to give it to me but she was really running behind and no one had the decency to tell me.
When I worked it out my last scan was March so it’s acutally 7 months wait. The hospital is new and wonderful inside. It’s purely for Cancer Patients. Wish the other medical practices were as nice.
What a pity the nursing staff weren’t very nice. I must admit I have come across a few like that in the past. We look to them for reassurance and when you are treated the way you were is unnerves you. It’s good you were able to change hospitals. I must say the staff in the new hospital I go to are lovely and caring. They take the time to talk about other things in life.
I think the final straw with the last hospital was when I went in at Christmas. My meds had caused painful side effects which no one would give me any help with and then I found the meds hadn’t worked and I needed to change treatment but the next treatment hadn’t been decided. There was a new nurse and when she asked me how I was I just burst into tears. She spent 10 minutes listening to me and then found some cream for my raw lips. I left feeling better than I had in weeks. A few weeks later I went in again to start the new treatment and saw the nurse and thanked her. She confided that she’d got into trouble for spending the 10 minutes taking to me and had been given a list of phrases to stop patients talking, but she was going to ignore it as it was part of her job as a nurse to listen to patients.
I was receiving iv chemo that morning and I spent it watching the interaction of the nurses and realised that there was a high level of bullying in the unit which was being approved by the senior nurse. At that point I decided that I didn’t want to go back and moved hospital.
That's dreadful. The whole point of cancer treatment and support is to be empathetic. I know I can turn to my local hospice for support. I have also sought support from cancer resesrch online. They reply quite quickly and give a lot of advice.
What appalling behaviour on the part of the nursing staff at that hospital, apart from the lovely, compassionate nurse who was kind to you and was willing to listen and help. We are vulnerable patients and are in need of compassion and care from our doctors and nurses. I am the type of person who would take that sort of thing to heart. You did the right thing switching hospitals. I always say that if a doctor or nurse cannot show compassion and empathy to their patients then they are in the wrong job, however brilliant they are at their jobs.
Sophie
You certainly had a mixture of a day. It’s nice you had a lovely nurse that treated as you should be treated. As for the large family, things like that drive me batty. Where I live there is nobody allowed to attend chemo or to visit patients in the hospital. Except for at the children’s hospital where their parents can visit. Some people feel entitled and don’t care about others.
in reply to
Just pure selfishness. The next day when I went for treatment it was different again. Right place wrong time I guess.
Hope you are ok.
Cheryl
in reply to
Tired but that is my new normal. Thank you.
Another lovey picture Cheryl.
Glad you got your treatment, and have an appt for the ONJ - that’s great news.
My Oncologist has decided in her wisdom that I don’t get any scans now, as I am stable. It has been 8 months since my last one. Shame really because I am either going to have to beg for one or make up some symptoms - the things we do!
Yes mine have been put off, supposed now to be after six months. My blood results are still on downward trend but the rate has slowed. I really want them this time to reassure me.
I know what you mean. It’s that reassurance we need isn’t it? It’s ok saying they will monitor our bloods and how we feel, but sometimes we need hard evidence in pictures that we are doing ok.
I suppose it is up to us to keep positive and strong in our heads. Clare x
Yep, I try to take the tablets and pretend that I'm ok. Mind over matter can be pretty powerful! Take care. X
in reply to
Thanks Clare. It’s the view we had one night last week from our apartment. Sent shivers down my spine. It was so lovely.
Will do Clare. It does make you feel like that. When I was first diagnosed 18 months ago I was told I would have a bone scan in a years time. When I asked two months ago I was told they only do them if you have increased pain. Prevention is better than cure I say but how can you insist on it. They have us over a barrel.
Will let you know how things go.
Take care
Cheryl
in reply to
It must be something they do up here then with the scans. If I start to worry I am hoping my nurse will let me have one for peace of mind. If I worry It will bring on pain as well, so they can scan that. The liver doesn’t have pain sensors so you only feel pain there when things are far gone.
Good,am glad about your good news. Yes I get cross about people's behaviour. Last time I went for my blood test there was a queue down the corridor. No-one said I could go straight in, I had to sort the system myself.
For my flu jab I made an individual appointment rather than go to the mass injection session, only to wait for 30 minutes! And I hate telling people I'm vulnerable because I look picture of health!
But yesterday I treated myself to an eyebrow shape and tint, and the lovely ladies rearranged my appointment so I could go to the salon with no one else there. I came back feeling normal and indulged!
Good for you. We all need that ME time. I haven’t been to the hairdressers since lockdown. I have it cut really short normally but now it’s on my shoulders. The fella that cuts it doesn’t wear a mask or shield so I won’t go. I expect other hairdressers do but I never trust they way they cut it.
It’s good your flu jab has been done. Something else of the tick list. I thought the nurse would have called me but she hasn’t. I will sort it and as Sandra said the local pharmacy could do it for me.
Hi Reading your post you are on the same as me 💪❤ . Its a scary old thing this C , and reading positive posts keeps me going . My first 3 month scan showed stable, its such a wait isnt it, then it wasnt my onc! Who phoned me it was a new one who spoke broken English! Was only on the phobe 5mins ...Ahhhh.Didnt have any of my last scans so couldnt even discuss any improvment, as you can imagine how angry i was, i had to put in a complaint. The following month My Onc phoned me we went through everything. He assured me my extensive liver and bone mets were stable after 5 months❤his only concern was my platlets as it was low and my iron also dropped. He thinks its due to my new 6 month plant based no dairy diet, and told me not to be so extreme on my body, the letzorone will deal with any eastrogen i was trying to avoid being eastr+ and i needed to put some weight back on , suggested red meat and yogurts . Anyhow ive put a few pounds on and not getting so fateauged now. It feels odd eating dairy again but i am lustening to the experts. How are your side effects? Not too bad i hope👍. Ive just also gone back to work part tine so semi normal, just wish some of the girls would stop asking me how i feel😡😄 as i want to tell them , but always just smile and say Fine xxxx Di
I’m pleased you are having a diet that is suiting you better. We take such strong medication that sometimes it’s hard to remember we have to drink lots of water, have calcium and lots of vitamins. Seems you are ok now. My side effects vary. When I start back on Ibrance after a week off I feel tired and a bit out of it for a couple of days but it passes. Then the week I’m off it I seem to have chemo brain I call it and do silly things like forget what day it is and put things down and can’t remember where. Seems my head is full of nonsense. I’m also a little tearful but I tell myself I’m here, able to do normal things and can enjoy life, well as much as possible with COVID. The worst thing is people asking you how you are and telling you how well you look. You just want to carry on as normal and put this C thought at the back of your mind. Easiest thing is to tell them if I’m not ok then I will tell you, meanwhile don’t feel you have to keep asking me. It’s not offensive but to the point. Fortunately I am retired and folks I see never ask me which is great. My joints do ache and my head does hurt sometimes but it’s a small price to pay for the condition we have.
It’s great you can work and see other faces but don’t overdo things and take a break when you feel you have to. Nothing wrong in that and it’s for your wellbeing.
Hi thankyou so much for your reply xx I will take your good advice and let them knw👍 The side effects are very simular to mine , im so low today and been tearfull and as you say its my week off the ibrance 🙄its like there is no hope. I knw there is and im on another site where I get very good positive replys. I have to watch out for the sad posts as they send me off worrying again. Its early days and i knw im on good meds that have shown amazing results❤. I just still have problems accepting this is now it and dealing with it every day. People like you help me stay positive 💪💪💪xx Di
Cry all you like Di, shout, scream, do whatever eases your anxieties. Somebody told me to look in the mirror every day and smile. There is something in that. Physiological maybe but it makes you glad to be alive. We can do this together. Sending virtual hugs.
Greetings : Sister/warrior I am so sorry that you had to see unsafe , and inconsiderate people in the very place that should be fighting to keep people healthy, and alive . I would secretly video tape with your cellphone the inconsiderate people, and then I would speak to the Administrator. If this happens again then your next step is to put it on the internet . My tooth cap came off a month ago, because I stupidly chewed on a caramel. I cleaned the cap, and my remaining tooth area, and put it back on. I am purchasing the filling/cement that will keep it in place if it should come off again. I refuse to go to the Dentist or Dr. until a viable Covid-19 vaccine is given to me . I do hope/pray your next appointment will be a fully positive experience Amen .
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: Sister/warrior I am so sorry that you had to see unsafe 
, and inconsiderate 
. My tooth cap came off a month ago, because I stupidly 
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