• Guest, the forum is undergoing some upgrades and so the usual themes will be unavailable for a few days. In the meantime, you can use the forum like normal. We'd love to know what you think about the forum! Take the 2025 Survey »

all is not well

lucylocket61

lucylocket61

Expert
I have been quiet for a while, as all is not well mentally and physically. At the beginning of October I got covid, then I got pneumonia, which I am still recovering from. It took two courses of antibiotics to stop the infection. On top of that, covid has left me with a very dry mouth, making eating or swallowing food very difficult. This was also why my salivary gland was swelling, apparently is a covid thing too. My taste buds are doing weird things, making some things bitter, some very salty, some too strong to bear. I am basically living on full fat milk, and trying to keep my daily carbs to under 100 - which is not easy.

In the midst of this I had some worrying blood test results and am being investigated for ovarian cancer and/or lung cancer, based on some of the x-rays, and an ultrasound scan. I am having a CT scan of my abdomen on Monday and see the respiratory consultant on Tuesday.

I dont know how people bear the wait, and fear, and worry while investigations are going on, let alone if the diagnosis is cancer. I am a mass of nerves, along with coughing and not being able to eat. If anyone has ideas on how to cope with this process of investigation, I welcome them.

I am sorry, but I dont have the reserves to help other just now, but I feel sure you understand why.
 
lucylocket61 said:
I have been quiet for a while, as all is not well mentally and physically. At the beginning of October I got covid, then I got pneumonia, which I am still recovering from. It took two courses of antibiotics to stop the infection. On top of that, covid has left me with a very dry mouth, making eating or swallowing food very difficult. This was also why my salivary gland was swelling, apparently is a covid thing too. My taste buds are doing weird things, making some things bitter, some very salty, some too strong to bear. I am basically living on full fat milk, and trying to keep my daily carbs to under 100 - which is not easy.

In the midst of this I had some worrying blood test results and am being investigated for ovarian cancer and/or lung cancer, based on some of the x-rays, and an ultrasound scan. I am having a CT scan of my abdomen on Monday and see the respiratory consultant on Tuesday.

I dont know how people bear the wait, and fear, and worry while investigations are going on, let alone if the diagnosis is cancer. I am a mass of nerves, along with coughing and not being able to eat. If anyone has ideas on how to cope with this process of investigation, I welcome them.

I am sorry, but I dont have the reserves to help other just now, but I feel sure you understand why.
Click to expand...
I am praying for you Lucy ❤️
 
So sorry to hear this, and sending you virtual hugs.

Having gone through similar waits for cancer tests and results a few times, it's an anxious time, but thankfully I got the all clear each time, and am praying that you do too.

I hope you've got a good support network of friends and family around you to support you. Take care and let us know how you get on.
 
Hi Lucy love and prays to you. I hope things improve for you and you get the all clear.

When I can't swallow I often blend my food down to a puree which helps.

As I don't have much in the way of parotid glands dry mouth is a problem I use artificial saliva gel or chew sugar free chewing gum which promotes generation of saliva.

I sympathize so much with the feeling of uncertainty during the prolonged wait for results when I had tumors in the parotids I was told the only way they would know if they were malignant or not is by evaluation in the lab after they had been removed and that ended up as an eighteen month wait as it turned out they were not. so I hope and pray that your tests turn out negative.

Remember help and support in your time of trial is here to the best of our ability if you need to rant or shout rant to us and shout at or with us.
 
Hay, Lucy, thinking and praying for you.

Having been through the grinder of extreme anxiety and how it can still effect me.
You need a bit of support, maybe a little more than that.
There are a lot of people out there, that you can get in touch with, to help you, now!
Please do yourself a favour and call someone, anyone, about what is happening to you.
Counselling is really there to help you get through this.
I wish it wasn't one thing after another, I know that feeling, no good news, all bad.
But, I'm sure, even writing your post, there is a little relief, imagine, getting it all out. The frustrations, the knocks, the persistent aches and pains, the discomfort, the bother, why me? It's always me!
I wish someone would do something!

But, the rub of it all, it is unfortunately up to you to do something, anything, it is not easy, can you do it?
I think you can, I can't imagine you taking this and not doing something about it.

Your kind heart and your understanding of posters questions, have been a part of this forum for a long time, and many of us are grateful for your advice when we have needed support.

Be positive, please, take care of yourself.

Best wishes, keep safe.
 
Having been through those C waits a couple of times now I don’t think there is an answer (for me anyway). It’s just one foot in front of the other and try and go through the motions of life as best I can to distract my brain. Or find a way to switch off (books, movies, online brain numbing games?). I pray the wait is short and the results good.

As for the mouth could it be the antibiotics have caused oral thrush? i got it post covid in sept after antibiotic and steroids and was told both medications often cause it. Prescribed nystatin is the best treatment but Daktarin gel is available over the counter. Worth a try maybe?
 
JohnEGreen said:
Hi Lucy love and prays to you. I hope things improve for you and you get the all clear.

When I can't swallow I often blend my food down to a puree which helps.

As I don't have much in the way of parotid glands dry mouth is a problem I use artificial saliva gel or chew sugar free chewing gum which promotes generation of saliva.

I sympathize so much with the feeling of uncertainty during the prolonged wait for results when I had tumors in the parotids I was told the only way they would know if they were malignant or not is by evaluation in the lab after they had been removed and that ended up as an eighteen month wait as it turned out they were not. so I hope and pray that your tests turn out negative.

Remember help and support in your time of trial is here to the best of our ability if you need to rant or shout rant to us and shout at or with us.
Click to expand...
thank you. I dont have family or a support network. Here, and another forum are my support network. I may offload here. I am quite isolated and full time carer for my autistic adult son, so I cant rant and rave here xxxx
 
Lamont D said:
Hay, Lucy, thinking and praying for you.

Having been through the grinder of extreme anxiety and how it can still effect me.
You need a bit of support, maybe a little more than that.
There are a lot of people out there, that you can get in touch with, to help you, now!
Please do yourself a favour and call someone, anyone, about what is happening to you.
Counselling is really there to help you get through this.
I wish it wasn't one thing after another, I know that feeling, no good news, all bad.
But, I'm sure, even writing your post, there is a little relief, imagine, getting it all out. The frustrations, the knocks, the persistent aches and pains, the discomfort, the bother, why me? It's always me!
I wish someone would do something!

But, the rub of it all, it is unfortunately up to you to do something, anything, it is not easy, can you do it?
I think you can, I can't imagine you taking this and not doing something about it.

Your kind heart and your understanding of posters questions, have been a part of this forum for a long time, and many of us are grateful for your advice when we have needed support.

Be positive, please, take care of yourself.

Best wishes, keep safe.
Click to expand...
I am seeing the doctor next Thursday and will mention support. I know there is support for those with cancer, so maybe there is support for those of us waiting to know. Hugs (if thats ok) for your situation and difficult path too.
 
HSSS said:
Having been through those C waits a couple of times now I don’t think there is an answer (for me anyway). It’s just one foot in front of the other and try and go through the motions of life as best I can to distract my brain. Or find a way to switch off (books, movies, online brain numbing games?). I pray the wait is short and the results good.

As for the mouth could it be the antibiotics have caused oral thrush? i got it post covid in sept after antibiotic and steroids and was told both medications often cause it. Prescribed nystatin is the best treatment but Daktarin gel is available over the counter. Worth a try maybe?
Click to expand...
I have been through a course of oral thrush meds, which cleared the antibiotic thrush up. This is a covid thing. I see my dentist on Tuesday (its all go) for a possible referral to a specialist about this. I am sorry you have been through this wait too. I think I could be handling it better if I wasnt recovering from pneumonia too and at a low ebb. My get up and go has got up and gone.
 
lucylocket61 said:
I am seeing the doctor next Thursday and will mention support. I know there is support for those with cancer, so maybe there is support for those of us waiting to know. Hugs (if thats ok) for your situation and difficult path too.
Click to expand...
There is support out there for anyone having to go through what you are.
You don't have to wait!Y
I only have to look on my mobile for my counsellor and office. There is always someone to talk to, even if it's over the phone.
Hugs and best wishes.
 
lucylocket61 said:
I have been through a course of oral thrush meds, which cleared the antibiotic thrush up. This is a covid thing. I see my dentist on Tuesday (its all go) for a possible referral to a specialist about this. I am sorry you have been through this wait too. I think I could be handling it better if I wasnt recovering from pneumonia too and at a low ebb. My get up and go has got up and gone.
Click to expand...
Mmm did the thrush actually clear up though?. I had zero visual signs of it and if I relied on that alone would never have got rid of it. I needed an extended course too. Hope the dentist has some answers for you.
of course your get up and go is hiding. It’s taken a right pummelling lately and needs some time to recuperate and recover, the same as you. Don’t beat yourself up about it. Be as kind to yourself as you are to others.

Yep I’ve done it 3 times now twice for breast lumps and once for a suspicious thyroid that needed half of it removing 2 weeks after the initial specialist visit and scans etc. Waiting for scans, surgery and biopsy reports feels like a lifetime when in reality it is weeks. All worked out ok for me in the end hopefully it will you. It’s hard not to go to the what if’s. But nothing you think or feel whilst waiting will change anything. IF you need to take action and make choices they’ll be a time for that later whether you’ve run through the scenario a million times now or not. And the odds are in your favour even if it’s not a bet you want to be taking. One day, one hour, one minute at a time. Keep your brain busy even if it’s mindless stuff Offload all you want in here. I understand the difficulties in support in face to face life and you have to let it out somewhere.
 
Hi @lucylocket61
So sorry that you are going through this.
From past experience of several biopsies, including one I was not aware of because I was under geneneral anaesthetic whilst the surgeon awaited results, before deciding on how to proceed, it is the waiting and not knowing that is the cause of most anxiety. Admittedly, mine were in the pre-pandemic era, and I didn’t have the burden of other health conditions at the time. I was a carer, though. That for me was the most difficult thing. Worrring about how the cared for ones would cope if I wasn’t around. That added to my anxiety. I understand you have that concern too. Please seek out carers support groups near where you live. Our local group reminded me that the first rule of caring / rescue is to make sure you are safe yourself.

As for getting your health needs met, be firm and assertive with any HCPs when you need answers or support. The health service is rather overwhelmed at the moment, so for anything you need be persistent. Make sure you get to know the consultant’s team including any support staff, admin, etc, and how to contact them. Ask questions, ask again if you are not sure of the answers.

As for the waiting, can you find somewhere, somehow to relax. My go to place for that is a warm, deep bath, with subdued lighting, and a book or at least a magazine. I know you have a heavy burden, but I see from the replies in here that you have so many people caring and wishing you well. Keep chatting in here. You will be supported.
 
Oh dear, @lucylocket61 , you just can't catch a break at the moment. I so feel for you.

Like others I've played the waiting game too and it is vile. I just tried to keep myself busy, but it's not always easy to fully occupy the mind.

As far as support is concerned, reach out to MacMillan. They are a marvellous organisation and there to support those living with or impacted in some way by the BigC. Right now, in your limbo state you are impacted by the prospect of cancer. They also have an online community: https://www.macmillan.org.uk/

Don't be a stranger Lucy. You have given so much to others. It's your time to have some support from us.

Every best wish coming your way.
 
Back
Top