I’ve been on a downer today. It happens. I’m off my Ibrance for a week and I feel like this for a day or so. Maybe it’s a kind of come down.
I had a waste of time phone call from my Oncologist yesterday. I could hardly understand him and it’s the first time I have spoken to him. I wish I could have my face to face consultations back. My next scan is 10weeks time and consultation 12 weeks. My last scan was 12 weeks ago and it seems a long time to wait, however, I was grateful for the call
Fortunately I have my lovely flowers to look at. Yesterday’s buy and they have opened up more today.
Sorry you are feeling down, the flowers are lovely really brighten the day up. Can you ask your onc to have a face to face consultation I know it's not the same having appointment over the phone. Take care of yourself sending you love and hugs
Maybe if you let him know you had trouble understanding him without seeing him, he could send you a copy of his notes? And maybe next time, if it's not face-to-face, meet via a videoconference option?
I will receive a report but a video call isn’t an option with the hospital. Great shame really. He sounded a nice, kind person though. Luckily I had my phone on speaker and my Husband repeated most of what was said. It still wasn’t ideal though. Three way conversation........not good 😕
Hubby Jim is deaf and wears a cochlear implant. He was invited to come meet with the doctor and me, but since we were all wearing masks and Jim needs to read lips, he had no idea what we were saying.
That’s so wrong as they can wear face shields to protect themselves. Hope it wasn’t to much of a bad experience for hubby.
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That's exactly what we do; my wife has had a stroke and we have to have a 3-way speaker phone consultation with the oncologist every few weeks. Not ideal, but she is too weak to make the journey to hospital let alone put up with what used to be a 2-hour wait in the waiting room. She also gets down - and very anxious - around the 3rd week of her Ibrance schedule.
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It must be so difficult for you both. Sending virtual hugs x
Could you ask for a virtual video appointment with your oncologist ? I had my first one today and it worked well...I just had to download the “Microsoft Teams” app from App Store (which is free ). I had a list of questions for her and covered a lot in the scheduled 20 minute session . x
The flowers are pretty. I am sorry you are having a down day. Me too. Going in output surgery for enlarged node right axillary. M B C is tough. Oh I did put on music The Supremes, oldies. It helps. Thinking of you, Birdi
Beautiful flowers! I’m glad they’re helping cheer you up some.
Sorry you're feeling down, and also for the issues with communication w/ your onc, but those flowers are beautiful! My mom used to grow those in the garden...
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They grow so tall. Somebody told me to cut out the top flower bud to given energy to the bottom flowers. I will give it a try.
I’m sorry you feeling down and that you aren’t getting to see your oncologist. Mine did some phone consults for a few months but we have been back face to face when I switched to Chemo. Your flowers are beautiful. I love glads.
I share your frustration. My oncologist has a Registrar who I got off on the wrong footing with right from the get go when I was first diagnosed. I came away from that appointment in tears and have always asked to see the Oncologist since then. Occasionally when she is away I don’t have a choice and I do have to see the Registrar. This week that happened (phone consultation) and so it was a complete waist of time. We have real problems communicating and I give up after asking the same question three times. He doesn’t seem to understand my questions. He has never read my file and often says things contradicting what my oncologist has told me. Initially he didn’t even appear to know my diagnosis! So I’ve learnt to say “everything is fine” when having those appointments. My oncologist is good so I wait until the next month to discuss any issues. It’s not ideal and I was hoping there would be a new Registrar after six months as it is normal practice for them to rotate hospitals but there is such a critical shortage in the NHS that he has not moved on and I doubt the hospital would get a replacement easily.
I don’t understand why you are not having monthly consultation. Twelve weeks seems a very long time to wait. Have they possibly made a mistake with the timing of the appointment? I had to wait six months for my last scan due to Covid and am now on six-monthly scans which also seems a long time but I can discuss any issues at my monthly appointments. Otherwise I’d be feeling abandoned. Perhaps you should phone your oncologists medical secretary to discuss the appointment schedule, at least for your consultations. I’ve been having telephone consultations only and haven’t seen my oncologist since February, that’s 7 months!
You put a smile on my face with those beautiful gladioli. My mother used to grown them in abundance and I was transported back to my early childhood. My father grew the sweetest grapes behind where the gladies grew and we had to be careful not to damage the flowers as we sneaked in to pick the grapes. 😋💕
I more or less said everything is fine just to get off the phone. My questions have also had to be repeated again and again in the past. I will query the long gap between appointments when I go for treatment next week. It’s just ridiculous. I will also need to find out if my regular Oncologist is still at the hospital. He is the third one I have seen in 18 months. I like continuity and someone that knows my case. I don’t think any check my medical history. They tell me my scan results and ask how I feel. That’s about it really.
No, there was no mistake in the wait for a scan. The excuse was Covid originally but the Cancer Unit has now moved in to a new hospital just for Cancer patients and not the general public. I understand the situation with the NHS but an explanation about change would be welcome. I saw my Oncologist in March. I’ve also had the two hour wait in the past. You start to believe you have been forgotten. I certainly don’t miss that.
I’m so pleased the Glads made you smile and brought back memories of grape pinching days. They are beautiful flowers.
I’m feeling better today but washed out. It’s so unusual for me. I get tired but never feel the way I did yesterday and this morning. Temperature was good and so was blood pressure. Maybe just one of those things.
I’m glad you’re feeling better. I had two consecutive days last month were I felt unwell but they passed. Who know what it was but I was happy to move on! I have been feeling drained recently and then my bloods test results came back with neutrophils of 0.8 so my treatment has been delayed by a week. Perhaps it’s just your neutrophils?
I like continuity with my oncologist (don’t we all) and asked to see just her unless she is away. You should ask also as you need to feel someone has got your back on all this. Being in the new hospital should hopefully improved the efficiency of the service provided so now you just need to find a permanent oncologist. 🤞
Yes we do have these days. More ups than downs. Like you ain’t just go with it and do what’s right. Could be my neutrophils although my blood has always been fine.
I really would like an Oncologist that I can relate to and one that knows my case. I,will find out more when Imgo for treatment next week. The NHS seem to have less permanent staff now. I am grateful for having it and for what they do but we need continuity with our situations.
Have a good weekend.
Heryl
Hi Cheryl,
I’m sorry to hear that you were feeling down yesterday. How are you feeling today? My last consultation with my oncologist was a video conferencing call. It was nice not having to attend the Macmillan unit, but it’s not the same as face to face, is it?
Your flowers are beautiful. I hope they helped to cheer you up.
Sophie
Hi Sophie. I’m fine now. There’s always a blip day in the cycle.
Face to face is much better although I realise the hospital is taking precautions. I just felt it was a waste of time. If you have a problem its so hard to contact anyone as well.
I have Osteonocrosis and had a tooth extracted July last year. I have a small piece of jaw bone that has pierced my gum again. I’ve been waiting 4 months for an emergency appointment. I saw my dentist Tuesday and she has chased up the Consultant but they are busy. So annoying for me and them.
Oh well. Another day begins and I’m feeling fine.
Have a good one.
Cheryl
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Hi Cheryl,
I’m glad you are feeling better.
My next consultation with my oncologist in November will be another video conferencing call.
I would keep chasing. An emergency appointment shouldn’t still be pending after four months. I would call again on Monday and keep calling until something is done. This is totally unacceptable. What really gets me is how everything else seems to have taken a backseat to Covid-19. But we still need to be seen and treated, as do other people in need of medical care.
Sophie
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That’s so right Sophie. We feel forgotten to an extent.
Everything is done via email. The Dentist tried all other surrounding hospitals and they had blocked the email facility. She actually phoned the Facial/Cranial Secretary and that was the answer “the Consultant is working through his list of patients and that I am on the emergency list”. Even the Dentist is annoyed. She said I shouldn’t have been discharged and there should have been a follow up. Covid is now the new excuse.
Your appointment with the Oncologist is a long way off as well. My husband said in some ways it’s good because they are not overly concerned. I would like to think that.
I’m still feeling washed out today. I just don’t get it. It started the day after my last Ibrance on Tuesday. I should be feeling good not washed out. I will be having my blood taken Tuesday so maybe that will show up something.
Have a good weekend and talk soon
Cheryl
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Hi Cheryl,
Covid is used as an excuse for everything now. My brother's adult day service has only recently started back up again with a limited service. My dad or I have to drop him off or take him in, as the taxi service is not allowed to start up yet. But the funny thing is the taxi can take him to his respite service. So why not take him to his day centre too? It doesn't make sense.
My oncologist wanted to leave it six months until she saw me again, as she is pleased with how I am doing and is not concerned about me. I was alarmed and said I didn't feel comfortable waiting so long in case there is progression, so we compromised and settled for four months.
I wonder if your neutrophils are low? Or have you been fighting a bug lately? Hopefully you will now more after your blood test. I'm getting my vitamin D checked on Wednesday. I am hoping it will be in the 80-100 range. If not, I will up my vitamin D dosage.
Enjoy your weekend, and I hope you get your energy back soon,
Sophie
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They may be low Sophie or though I haven’t had a problem before. I do feel as though I’ve had a slight bug though. Temperature and blood pressure are fine though. My chest has been sore and my husband said my lips go blue sometimes. Just a mystery. I will tell the hospital on Wednesday when I go.
This Covid virus has been used all to often now for excuses. I can’t believe the taxi company could be like that. Guess we just have to look after one another and say blow them all.
I do take calcium and VitD every day. Seems to be ok.
Take care x
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I hope you get some answers on Wednesday, Cheryl. Have a good evening.
Thank you I am feeling better now. A bit wobbly this morning and I feel washed out but a lot better. My blood pressure, pulse and temperature are fine so not sure what caused it.
Have a good weekend.
Cheryl
Sorry to hear you had a rubbish day Cheryl. Hope today is better for you. I am not able to have my treatment for a couple of weeks as someone I had in my garden tested positive. I will use the time to allow my neutrophils to pump up.
Clare x
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That’s not good news Clare. As you say your neutrophils should pump up but I expect you are still worried. I have started shopping with hubby at less busier times now. We always have a mask and stay a distance away. We were talking to someone at our allotments the other day and he had just returned from Wales. He has family there. He was shocked to see that folks didn’t have masks on in the shops. It concerned him a bit.
Keep well and keep safe. Have a good weekend.
Cheryl
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Wales is odd, we don’t have to wear masks in shops here, but all the locals do. I am quite angry as the person who tested positive had been to Greece, but they chose not to tell me this information!!! She lives in your neck of the woods. She is in her 20’s and probably doesn’t care very much about Covid or other people. I haven’t got any symptoms so far 🤞. Glad you are getting out a bit, it’s time to test out our new normal.
Clare x
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That’s so selfish Clare. How could she do that. As you know we live in the City Centre and the stupid youngsters get drunk, roll about the place and go home and spread the virus.
I’m so sorry you have encountered this.
Our allotment neighbour wore his mask the whole time he was out thank goodness. His family do as well. His sister has a farm there somewhere. I will find out where next time I see him.
Take care and keep in touch.
Cheryl
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I must say I was stunned and angry when I found out (after their visit). It’s their lack of consideration of others that gets me.
It was my first time relaxing my stringent measures, and I had accepted a request for my cousin’s family to visit. I won’t be doing that again!! The buggers can all stay away.
Let me know where the farm is. I am near Benllech and Red Wharf Bay.
Keep safe
Clare x
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I would have gone absolutely nuts. Especially after being so careful for so long. I agree, stay away all of you. You certainly don’t need that.
I will ask Tom where the farm is. He is such a nice person. We don’t see him that often but he always chats when we do see him.
Me and hubby were talking about a day trip to the Lakes. It’s just a 2 hour drive from Liverpool so we will go before the nights start drawing in. It will do us both good. We have never lived so close and yet the 3years we have been living here we haven’t visited. We used to go twice a year and stay. We are thinking of visiting Newlands Valley. Near Cat Bells. Also call at Buttermere. Watch out for the photos. It’s so pretty. Take a picnic and gas stove and we will be well away. We miss fell walking but my bones won’t let me climb like I used to.
I’ve got treatment next week and it takes me a few days to settle back to normal again so hopefully and weather permitting we will go the following week.
Take care as well Clare. No more visitors.
Cheryl x
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That sounds like a lovely get away Cheryl. I think it does the soul good to have a trip away, and to come back home.
I have a weekend booked in the Peak District beginning of October, with 2 friends. I have never been there, and didn’t realise how close it was to us!! I am hoping to meet up with Mindy Sooty at the same time as she lives nearby.
My Cousin tested positive today, and I think they are realising the impact their selfishness has and is having on people. Let’s hope it makes them think about things a bit more now.
The plus side for me is that not having treatment boosts my immune system, which I need at the moment as have been feeling tired the last couple of weeks.
I hope you get back to feeling like yourself quickly, and send pics of the Lakes.
They certainly do but I haven’t felt like this before. Today I feel better but still washed out. I will go,with what my body tells me and that’s rest, sleep and eat good veg.
The picture of the glads take me back to my childhood. My father is quite a straightforward man and doesn’t go in for displays of ornamentation and mother is quite artistic and flamboyant. Opposite ends of the spectrum. The front garden was Dad’s preserve, and we had a drive and a lawn that was manicured to within an inch of its life, and nothing else. Except in early summer when it was surrounded by tall gaudy gladioli plants. They were planted by my mother and every year there was the same row. My father, as soon as he noticed them, would demand their removal and my mother would always say that now they were growing it would be a shame not to let them flower and she would dig up the bulbs as soon as they were finished. Neither of my parents ever dug the bulbs out and each year they increased in number. I’ve alway suspected that my mother was planting more each year 😊 Seeing gladioli always takes me back.
I’m sorry you are feeling down and glad you bought lovely flowers to cheer you up a bit. Always be good to yourself😊 When I became metastatic, my oncologist told me she has to closely follow metastatic patients. Before being metastatic, I went in every 6 months, but now I see doctor monthly before Faslodex shot then PET/CT scan every 3 months.. When pandemic started, we had 2 video calls, but she prefers patients come to the office for exam/consult as she said video visit isn’t the same. Can you ask for an in person visit for next appt? Good luck and stay strong🙏❤️
I will try and see if I can have a face to face meeting. I think maybe calling is quicker than patients going to the hospital. They take longer in their consultations and the hospital doesn’t want patients in the waiting room understandable really.
Honestly I felt so poorly. In the 18months of taking it I have never felt like this. Today is my 5th day off it and I feel brighter but not perfect. I slept well last night. No restlessness. Tomorrow I will have my blood taken and Wednesday I’m at the hospital for hopefully my jab and collection of Ibrance. I have a list of things to ask the Cancer Nurse, I hope I get the right answers.
Best wishes
Cheryl
It’s such a lovely new state of the art hospital. It’s purely for Cancer Patients. I need to know when I can have a face to face. It really is such a crazy time for us all. Figures have gone up again in the UK so local lockdowns are expected. Every ache and pain we have is a worry.
Belatedly, thank you for the lovely picture of the beautiful gladiolas and, as always, your Flower Fairy moniker makes me smile. Thank you for that. Hopes and prayers that you get to feel better and better and that you can, once again, sideline the cancer and get on with your wonderful life..
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Weekly schedule of 5 days on, and two days off CDK4/6 inhibitors
Afinitor/Everolimus - best time of day?
Strange day yesterday 
