Treatment at hospital: After three... - SHARE Metastatic ...

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Treatment at hospital

31 Replies

After three months I’ve had a visit to our new state of the art Cancer Hospital. It’s fabulous. Treatment is continuing with no change as my bloods were good. I was however concerned about lack of masks. Travelling in a lift with someone that didn’t have one on and seeing people going around without one, not sure where this mask wearing situation is going to be honest. They make you sanitise your hands and give the masks to you at the entrance. I think people must take them off once they are past that point. Oh well, supposed we have to look to ourselves and not worry about others. This is the new building. Totally wonderful. So well organised as well. Spot on appointment time. It was a pleasure.

31 Replies

Hi Cheryl,

Your hospital looks state of the art! I'm glad your appointment went well and that everything is carrying on as normal for you. I'm sorry to hear that some patients in the hospital were not wearing face masks. It's the first thing I do when I go see my GP for my zoladex injection, I visit the health clinic for my blood tests or if I go to the hospital for treatment. It's become second nature now, and everyone else should abide by the guidelines. It will be compulsory at the end of next week. I just hope people will comply.

What scares me is hearing about cancer patients whose treatment has been suspended due to coronavirus. Some friends probably thought they were being helpful when they told me about a few cancer patients who died after their treatments were stopped. They prefaced the news with "but you're doing so well". I don't think they realise how upsetting it is when I hear that a cancer patient has died, especially if their treatment was cancelled. Even if I didn't know them personally, I find it upsetting. That's how I felt earlier this week when I heard that Kelly Preston had died from breast cancer.

Sophie

in reply to

Sophie people are so insensitive. They shouldn’t say that to you. It’s hard dealing with our illness. It was very sad for Kelly. I hope someone will be held accountable for this although it won’t bring Kelly back.

I always wear a mask and gloves. I dispose of the gloves once shopping etc is done. I’ve just ordered more masks for hubby. He does the shopping. Our GP surgery is still closed but the GP’s do video consultations. My nurse also checks on me once a month. She said yesterday that if I needed to see a doctor they would make an exception.

I went to the dentist for my ONJ check up three weeks ago. I have a small area of exposed jaw bone again.........not happy. The surgery was spotless with a one way system and all the staff wearing shields, masks and gloves. They also took my temperature before they would let me in. Why can’t they all be like that.

Sophie we can’t change this awful situation regarding the treatment withdrawal for other patients. It’s so upsetting. We must sit back, take a deep breath and hope they are in a better place.

Take care lovely

Cheryl

in reply to

Hi Cheryl,

Thanks for understanding. It is hard dealing with people's insensitivity, but I also know that for the most part they mean well. I think in my case it was meant kindly as my treatment has not been interrupted or stopped at all during this pandemic.

I'm sorry to hear that your surgery is closed. We have two surgeries here in town. Mine is still open, but the one next door is closed. That's great that your nurse checks on you. I still get my zoladex injections, but I have to call up and make appointments now. I used to be able to get an appointment for the following month while I was in the consulting room, but they haven't been able to make them ahead of time for months.

Will you have to go back and have further surgery to repair the exposed jaw? That sounds so painful. I hope you are able to eat properly.

Take care,

Sophie

in reply to

You could be right Sophie. They mean well. It’s just hurtful at the time as we can’t always see further than that day.

Unusual you have to phone for appointments. Especially as they are a regular thing. I guess the GP’s surgeries can’t plan to far ahead right now.

I have been referred back to the Facial/Cranial Consultant. They are so far behind with appointments though. There is some discomfort there as the tooth socket hasn’t healed over completely and it’s just a hole. I have to syringe it twice a day. It’s ok. I just don’t eat on that side now. It’s like having a very sensitive tooth feeling. I was given a Denosumab jab a week after the extraction and I shouldn’t have had it. It interfered with the healing process. The nurse who gave me it put on the screen 3weeks since extraction and not one like I told her. She was pulled over the coals for it. Damage is done now so I just have to live with it. The tooth was extracted a year ago on the 4th. I was told no more healing will take place and the jaw bone will be fine so I’m surprised this has happened. You would think the specialists would get it right.

Have a nice evening. I’ve slept today as the walk knocked me out. Guess it’s Netflix time 😀🤦‍♀️

in reply to

Hi Cheryl,

That sounds so uncomfortable. I would be feeling very upset at how you were treated. I think it was right for the nurse to face disciplinary action, as you have suffered for it. She should have known better.

It is a bit of a pain having to call every time to make an appointment for my zoladex appointments, but I am always guaranteed an appointment whereas some other patients with routine appointments are not. Not so long ago when I called the surgery the receptionist said I would have to wait for the triage nurse to call me back, as she wasn't allowed to make an appointment for me. When the nurse called me she said that was nonsense and I didn't need to go through triage for that! That's what I thought.

Enjoy your Netflix. I enjoyed watching the last episode of series 5 of Downton Abbey tonight. I loved it first time around, so it's been nice watching reruns! The final series starts on Sunday. I wish I had watched the film when it came out last year.

I hope you enjoyed your walk, even though you are now worn out. I love walking!

Sophie

Staysha profile image
Staysha in reply to

Hey Sophie,

I know this may be off from this topic but I’m so glad you brought up Kelly Preston. 2 years isn’t very long considering all the treatments available now. Her death made all my fears come back. Any ideas or remarks from anyone on why this terrible disease took her so fast? I wish I knew more about her. Heartfelt condolences to her family.

Love to all of you,

Stacy

in reply to Staysha

Hi Stacy,

I was thinking the same thing when I heard the sad news about Kelly Preston. It's been more than two years since my diagnosis, so it hit me hard to learn that she had succumbed to the disease so quickly. From what I have read, her family kept the diagnosis private, so it's not clear exactly what happened. Perhaps her disease was already at a very advanced stage when she was diagnosed or her treatments stopped working. It's hard to say without knowing the details. I feel sad for her husband and surviving children.

Sophie

Mindysooty profile image
Mindysooty in reply to Staysha

I thought that but I don't know what he dx was ie what sort of MBC , eg ER+ etc. I do know they practice Scientology and did wonder if that had a bearing on things - whether she delayed treatment or something. I don't know that though, it was just something I wondered about.

in reply to Staysha

When we don’t know it’s a torment to us. Maybe she had an aggressive Cancer. She may have had it without knowing at first stages. As we all know there are many types of Cancer and sadly Kelly’s may have progressed quick and without her treatment actually working anymore. Ladies as long as our blood tests are good and our CT scans are the best we could wish for let’s think of ourselves, our future and let’s tell ourselves Kelly is in a safe and restful place. It’s comforting shedding a tear and makes us grateful for every day we wake able to do things.

Come on girls, we can live life to the best of our abilities.

Take care and let’s keep the chats going.

Virtual hugs

Cheryl

Have-faith profile image
Have-faith in reply to Staysha

Oh ladies. I too was upset, disturbed when I heard about Kelly Preston passing from BC. I had all the same thoughts and questions as all of you. It always disturbs me when I hear others have passed from this disease. When this happens I remind myself that I don't know if there were pre existing conditions, or what kind of mutation it was, or did they take their meds? We are all so different and will have our own stories. Take care of yourselves and focus on what is best for your healing. We learn alot from each other on this site which I am grateful for.

Take care. Faith

Kiera49 profile image
Kiera49

This mask thing is awful people not wearing them, the worst ones I've seen is elderly people you would think they would be more worried about getting covid19 these people are selfish, I saw a mask saying not wearing a mask your a disgrace, spreading your germs all over the place

in reply to Kiera49

The thing is if they have breathing of respiratory problems they are exempt. I can only assume that’s their illness or they are ignorant.

Barbteeth profile image
Barbteeth in reply to

I saw an ‘experiment’ of a doctor taking his oxygen saturation with a pulse oximeter with a mask on and without a mask...both readings were identical...in other words a mask doesn’t reduce oxygen intake...no excuse for not wearing a mask in my opinion

Barb xx

glad to hear your spanking new hospital is up and running. It’s not on the old Helens and Knowsley site is it?

Clinics are back to normal here in North Wales, so I have gone from being seen in 15 minutes during lockdown, to waiting 2 hours in my car until the nurses have time to come away from the patients on chemo. Boo

Clare x

in reply to

Hi Clare, no it’s alongside the old Royal Hospital that looks like a prison. The rest of the new hospital is due to complete around 2021. There’s a covered bridge connecting the hospitals but I was told as a Cancer patient we are not allowed in there now, suits me.

I’m still having phone Consultations from the Oncologist. I’m pleased about that as he runs at least an hour late. I think if I still had to attend the old hospital i would have to slip into the long waiting times. That must be frustrating for you. Hope Wales is looking good. It’s been misty over the mountains looking from the allotment. We are going to visit once this virus calms down. It will be such a short drive for us.

Take care.

Cheryl

in reply to

You stay in the posh section.

It’s been rainy but very muggy here this week. Extremely crowded on the sunny weekend though. Pop over and give me a wave.

Clare x

in reply to

Bless you, I would if I could swim across 😉. It has been humid. I have asthma and it does make me a bit breathless. Along with mets in my lung I could do without the damp. We have a rise in numbers here Clare. In areas like Knowsley, Southport and Speke. All down the line. Problem is the teenagers have come in to town for a booze up and obviously spread it around when they have gone back home. Senseless. Weekends are the worse for crowding. Virtual waves for now xxxx

in reply to

We have an increase as well, plus all the visitors.

Oh well hunker down

Clare x

in reply to

Will certainly do that. Felt rough today after my injection and going back on Ibrance. It will pass. Got to think positive Clare

in reply to

Absolutely, but we have our days don’t we? Hopefully tomorrow will be a better day

Clare x

urthmothr profile image
urthmothr

I love our cancer center, with a huge infusion suite - cubicles with recliners! And nearby toilets, while they are pumping you full of saline. Hospital has "wear a mask" policy, I don't know whether they remind people who are not wearing one.

in reply to urthmothr

Sounds comfortable and reassuring. We need comfort during treatment. Take care x

urthmothr profile image
urthmothr

And oh yes, they have a drive thru with people waiting with wheel chairs in case you need them. No visitors, and the first time my husband wasn't allowed to come, I was very glad of the wheelchair ride!

Wow! That building is spectacular...It looks like a high-tech cruise ship! :)

And that's nuts re: no masks in the hospital! I think that people who can't wear masks due to medical issues should at least wear those clear plastic face guards (or whatever they're called...like what welders wear...)!

Take care,

Lynn

in reply to

I agree Lynn. Not enough staff to watch maybe. We said the hospital looks like a ship. Lite up it’s lovely. They have a special garden for patients on Radiotherapy and September they open up a Restaurant on the 7th floor with a garden. Cant wait to see that. Let’s hope it’s on schedule.

Take care

Red71 profile image
Red71

Beautiful building! Mask wearing is not optional in my cancer center here in Oregon. They greet you at the door with a thermometer and give you a mask if you don’t have one. There is staff near every waiting room so I don’t think you could get away with taking off your mask after you got in. Even though the mask makes me uncomfortable I’m glad to wear it while I’m there....and glad to take it off as soon as I’m in my car!

Elaine

in reply to Red71

That’s how it should be Elaine. Wish there was enough staff to man the different areas. Best wishes

mariootsi profile image
mariootsi

Glad you had a good visit with good outcomes! The mask thing is so absurd! It is such a simple thing to do to protect yourself and others.

Getting into an elevator is particularly scary!

in reply to mariootsi

They even had distancing markers on the elevator floor but this man just didn’t have a mask. Not even arou d his neck. Goodness knows what he did with it. Take care

mariootsi profile image
mariootsi in reply to

I just can't understand that!

Of course you will,see your new Centre Sandra. You will have the pleasure of being one of their patients. It’s been long awaited in this area. People come from miles around. I’m so happy to be under their care. I always wear my mask but some people are so disrespectful. Folks are given a mask on entry but take them off once they are past that point. Take care x

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