I wore it pink....

[Mindysooty]

Well my gift drop went down well. Me and my daughter sat in the chemo unit for 5 hours dishing out gift vouchers and the pamper packs we'd made up and chatting to fellow patients. It lifted everyone's spirits and they were all happy and chatting to each other much more than usual. It was a lovely outcome and I got a lot out of it too - putting a smile on so many people's faces was very rewarding and uplifting. It did make me chuckle when I went to the pharmacy for my meds cos I could see loads of people walkind around with their pink goody bags

[Hidden]

Hi Josie

That is a wonderful thing you did. How lovely to be able to make so many people happy.

I hope it went well with the Oncologist

Clare xx

[Mindysooty in reply to Hidden]

Morning Clare,

It was very tiring (as you know!) but without being super cheesy, they do say "the gift of giving" and it's true, I loved giving people the packs and seeing their faces light up. One woman asked me if she was on Candid Camera because she thought it was a wind up hahahaha. Told you, us Barnsley folks are a suspicious lot but once you break through the barriers, we're softies underneath.

I didn't see the Onc! It's what we were talking about the other day ie looks like I'm seeing her every other month. No-one explained anything but I don't really care. My oncologist walked through the waiting room on Thursday and saw me and our Lucy with the signs and gifts etc and didn't even say good morning. I really don't like her, as a doctor because she doesn't treat me properly, nor as a person - been with her 6 months and she can't even bring herself to say good morning! frankly I just think she's rude so I'm more than happy to see the nurses :).

xx Josie xx

[Red71 in reply to Mindysooty]

That is rude! My oncologist gives me hugs!

[Mindysooty in reply to Red71]

It must be lovely to have that relationship. Mine's like a cold fish! I'm used to it now but it would be nice to be able to talk to her. x

[Hidden in reply to Mindysooty]

Hi Josie,

I agree that your oncologist sounds rude. It doesn't take much effort to smile and say good morning. Mine is not exactly rude, just very matter of fact and wants to get down to business as soon as I enter the consultation room. She will ask how I am doing, but I feel that she is not particularly interested in me as a person. Whenever I ask her how she is doing she always ignores me and gets back to the task at hand. You could try killing her with kindness and see if that helps! That's my strategy, and I am hoping for more of a thaw over time. I've known mine for 17 months.

Sophie

[kearnan in reply to Red71]

That is nice but I am not that type so I would not feel comfortable getting hugs. Do you live in a small city. I am in Brooklyn, NY and as it is now I think she has too many patients since she "forgets" things she should not be forgetting.

[kearnan in reply to Mindysooty]

When I go visit my onco and get my blood work done and injections, all on the same day, I seen her rushing by several times, and she will just quickly raise her head to acknowledge me. No smile. I figure she is busy. My onco is not overly friendly either. She does not respond to emails UNLESS I call her assistant and tell her assistant that I need her to respond. She does not work on Fridays (she told me this from the beginning) so that if I have any issues or problems, I should call the cancer center and they have an on-call onco doctor or nurse. At first, I was a bit perturbed by that, but then realized she has a private life also and does not want her patients emailing or calling her on her time off. She does not cuddle or hug me and I don't want that anyway.

Things must be going well if you only need to see her every other month. I would be happy if told that. Maybe she just had a bad day that day.

[Mindysooty in reply to kearnan]

nope! She's just rude! Heard other people complain that she's not approachable but like I said, I am more than happy to see the nurse :).

[kearnan in reply to Mindysooty]

I only see my onco but that is because there are too many new things. Found out last week that CT scan showed two holes in my spine from breast mets (T-15 and L-2) or something. All I know is now I have an additional injection of xyvega(?) and the meds and now three injections and the side effects of taking its toll. I thought the CT scan was to see what was going on with the new tumor they found after I was off the Ibrance for several months. So then I said I thought the CT scan was going to show what was going onto the new tumor. It was as she completely forgot about the new tumor. I said I was told a month ago that I had a new tumor in my breast far from the original and then I was told nothing. She said a CT scan does not show the breast so she kind of "forgot" about the new tumor and now I will have another ultrasound to see if it has changed or grown. She "forgets" thing sometimes and I have caught her in lies. She blames the staff for everything saying "staffing issues." So when I went the month before and was supposed to have my results, she said Oh, oh, Radiology has been delayed in sending the reports. I am going to write to the head of Radiology about this and told me that there were "staffing issues." I knew then she was lying to me again (staffing issues is her to go response.) She then said if I wanted to wait another hour and a half, she could get them and go over with me and I said no, I do not want to wait here. I know she was lying. What I suspect is that I had it on a Thursday (the CT scan), she is off on Fridays and my appt. was for Monday and I think she totally forgot to review the CT scan and that she did have it. Because now all of a sudden she could get it within an hour and a half and I knew the technician told me they send the doctors the reports within 24 hours. Then when I asked about the new tumor, she seemed a bit shocked and then said Oh, yeah right. Thinking of going to Sloan Kettering. Just don't have the energy now to find another onco and get used to another routine. My friend also had her and said she too find her flaky and that my friend then went to Sloan Kettering.

[Mindysooty in reply to kearnan]

oh God she sounds as bad as my Onc. Can't believe she "forgot" about a new tumour, that's so bad! I remember your other post about not getting the information from her. I think they see that many people they forget that we are, well....people! The lose the human touch and turn into robots. I'm not too bothered for now because everything's stable but I think if things were to change it would be a different story.

[Julie2233 in reply to kearnan]

I don't even have a phone number for my oncologist's secretary let alone a number or an email address for the oncologist himself.

I have a number for the unit and if I want to contact the oncologist I have to leave messages, though I have never received a call back yet. I just have to keep phoning until someone gets fed up of me and finds an answer.

My dog's vet recognises me and knows my name, my oncologist can't even get my name right when it's written on the file in front of him.

[Mindysooty in reply to Julie2233]

Truly shocking!

[Stage4Gir]

Josie

This was such a nice thing to do and sounds like it was a huge success! I admire you!

[Sunnydrinking]

Well done you - I’m sure you lifted so many people. 👍🌸

[nstonerocks]

I would have loved to have been there. What you did changed many people’s entire day if not week. Bravo

[kduck]

U rock!!!💪💪💪💪

[mariootsi]

Bless you! What a beautiful, sensitive wonderful act of kindness!

[Mindysooty in reply to mariootsi]

Thankyou x

[kearnan]

Something as simple as that can make another person feel so much better that there are people like you that care and take the time to do this for them. Nice that you can put your own illness aside for that short time and do something like that to help others. It really is gratifying to do something that makes other people happy and its good for your soul and makes you happy at the same time. Double win!

[Mindysooty]

It really is

x

[kearnan in reply to Mindysooty]

My goal was since I am not working anymore, and I do not drive nor do I have any family and none of my friends live in Brooklyn anymore (I still bc I do not drive) was that with my free time and since not working, I would do volunteer work at a shelter or a nursing home and visit with those who don't ever have anybody to come visit but lately, I am feeling more and more fatigued and nasty side effects so I am not fit enough yet to commit myself. Hopefully, soon, I am hoping to feel better and do some volunteering work bc staying home all day by myself I am going insane. So that is my goal and I thought I would have been doing some type of volunteer work but this cancer thing makes me so tired lately that I order my groceries online bc I just dont have the energy right now but hopefully soon, I will feel better and can make a difference like you.

[Mindysooty in reply to kearnan]

I honestly can't imagine being completely on my own. It's a shame you're feeling so tired because I think if you could manage to get yourself out to do some volunteering work it would probably do you the world of good. Being stuck in on your own can't be good for you emotionally. Doing to visiting thing would work both ways for you wouldn't it. Maybe start with a couple of hours a week and see how you go.

[kearnan in reply to Mindysooty]

You are right. It is very hard to be alone. I was alone when I got diagnosed, I was alone when I had to show up at hospital at 5 am for lung biopsy. Since I never had any family (siblings, cousins, etc. that most people take for granted), I have always been alone so kind of used to it but finding it harder and harder.

My friends do not live close and have their own issues with elderly parents or watching their grandchildren or they work all day.

The worst was after the surgery after they cut large tunnels in my upper groin and the stitch job they did was a horror. I tried to get out of bed, screaming in pain bc of where the surgery was and all the stitches just ripped right out the very next day. I had to go on emergency basis back to the plastic surgeon and his PA was there, not him, and I was laying back on a bed with my legs up and she took a large mirror and I started crying...all I could see were large holes in my leg. Even now and its been several months, he did a crappy job and I still have pain. I cannot look at that area (I would need a mirror) bc of how horrible it looks. I was so angry at him and told him so. The next time (my first month), the area started bleeding so much, that was blood all over my floor. I had to call car service (I refused to go to my affiliated hospital with the cancer center bc in Brooklyn we know it does not have a good reputation, the ER). So I went to another ER....and when the doctor and the resident doctor took a look, they were like do you realize you have a large gaping hole in your leg. I was like Uh yeah.....They cleaned it out and gave me more antibiotics. Even when I went back to my onco (who recommended this plastic surgeon who then he could no longer treat me), my onco was horrified by the size of the hole and took a photo and was going to send to the plastic surgeon. But by then, he did not want me back. He knows he did a horrible job and if I did not have to deal with the cancer, I would have sued his butt.

I refuse to look at that area anymore bc of how awful it looks. Found out afterward that this plastic surgeon had never done a groin area before. Believe it or not, this was the most upsetting part of my whole experience bc I knew it was the Ibrance. Before cancer, I would immediately get antibiotics when I felt the tenderness starting up and it would knock it right out. This time, even after five weeks off the Ibrance and given five weeks of antibiotics, it got worse so I had no choice but to get surgery or stay in my apt. and have to walk like a duck so that my legs would not rub together.

I wish I drove. Everything would be so much easier if I drove. I live in a strictly residential area so no stores close by. I cannot travel like I used to bc this Verzenio sometimes...I am scared to be too far from home after several accidents. If I drove, everything would be easier. I am now adjusting to it being in my bones and getting the additional injection of xyega(?) which I am finding myself so nauseous since that additional shot.

[Mindysooty in reply to kearnan]

Sounds horrific! We have to put our trust in the medics but they don't always get it right - clearly not in your case. How awful.

[kearnan in reply to Mindysooty]

I was actually more upset with my onco. Because after this whole experience, and the months off because the one month recovery took almost four full months (I spent Thanksgiving alone crying, Xmas alone, New Years alone and my birthday alone) she then said she was not putting me back on bc I had severely low white blood cell counts. Well, when I was complaining how deathly sick I was on my week off of Ibrance, I am not sure why she didn't realize then that it was not for me. It wasn't until this whole disaster that she then decided not to put me back on it (and quite frankly I would have refused). Its thing like this that make me seriously consider another onco but I don't have the energy right now. I was just approved for full medicaid, along with the medicare, so now that I get the free car service, I am thinking of going to Sloan Kettering.

[Mindysooty in reply to kearnan]

I'd get transferred if it's now possible! I would if I could but it's a bit different here in the UK

[kearnan in reply to Mindysooty]

That is the good thing. Here in US, I can easily change oncos/hospitals and such. They all accept medicare/medicaid but the travel would have been tough for me. But I did have a talk with her the last time (3 weeks ago) that I was there. I just love everything about the cancer center bc they have so much help and resources. I could not ask for another onco there because they all work on the same floor and that would affect her reputation if I asked to see a new onco there since its all in one area and I would not want to humiliate her among her colleagues nor would I want to tell them she is not on top of her game. This would be my third switch.

[janetjanssen in reply to kearnan]

When I read these things my heart breaks. I wish I could be near you to help you get to appointments and have company but I'm dealing with my own health issues. I'm in Nebraska and I always wonder "what if I know someone near to where she lives" but it's doubtful I do. Reach out to me if you wish, we could correspond.

[Julie2233 in reply to Mindysooty]

If you find another oncologist that you would prefer to see in theory it's not difficult to transfer. You can either go through your gp (easiest route) or contact the oncologist's secretary to ask if they can accept you as a patient.

The oncologist no longer has to be in you local authority area either. The biggest issue is getting a copy of your notes to the new hospital, you may actually have to request a full copy and take them to the new oncologist yourself as inter hospital transfers can take months, if they agree to provide them.

My oncologist is rude and dismissive but has a good reputation so I stay but I have seriously considered moving hospital again. There has to be one out there who knows their stuff and capable of behaving like a human being.

[Mindysooty in reply to Julie2233]

Hi Julie

Im not quite at the point of wanting to transfer. At the moment all I need from her is my meds, it would be nice to feel valued but its NHS so I guess you get what youre given. Some people never see the same Onc twice so at least Ive had consistency I suppose. More than happy to see nurses and if I have any questions they cant answer I'll just hound until I get what I want x

[Hidden in reply to Mindysooty]

Hi Josie,

My husband wants me to get a new oncologist, but even though she is a female version of Doc Martin and is not warm and fuzzy (I don't need that. That's what my friends and family are for). I actually have a lot of respect for her. I think I must see a side of her that my husband doesn't. He seems to think she is not caring or compassionate, but I have seen her thaw and have that look of compassion in her eyes for me. She also goes out of her way to boost my confidence. One of the things that she does is tell me that I have the "best job in the world" (her words, not mine!) so that really helps. But if you really feel that you cannot get along with your oncologist, then it is worth looking into switching. One of the downsides I can foresee is if you are unsuccessful in switching and she gets to hear of it. That could be awkward for you both.

Sophie

[Mindysooty in reply to Hidden]

Truthfully I can handle awkward, it doesnt really bother me if I truly believe Im right. Not quite at the point where I feel a need to switch, its NHS so sometimes better the devil you know.

Thanks Sophie x

[Hidden in reply to Mindysooty]

Morning Josie,

I hope it all works out. I'm under the NHS too, so I know what you mean. I started out under my husband's coverage, but after my diagnosis I preferred to be treated by the NHS, as it's a familiar system and I wouldn't have the headache of filing insurance claims and so on. It's just a shame that you don't have a good relationship with your oncologist. Some of it might just be self-preservation on her part, as she tries to keep her distance from patients so that she doesn't get too close to them.

Sophie ❤

[Godbeforme]

Beautiful! <3

[Julie2233]

Well done, what a lovely thing to do!

[Mindysooty]

Do you know what, you're right. She probably doesnt even realise so maybe I should call it out. Good shout. I can do it in a very civil and polite way - I wont join the rude camp lol. Thanks Sandra. X