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all is not well

I am sorry you have been through this. I didn't know Macmillan were there for those of us in limbo. I will check the link out, thank you. Keeping myself busy while still weak and tired from the pneumonia is a challenge. I will have a think about a simple project.

This all came out of the blue 4 weeks or so ago. I saw a GP for my salivary gland swelling. The next thing I know I have walking pneumonia, and the pain on my lower side is setting off warning lights to my GP.

Since then it's been a whirlwind of appointments and tests. I am grateful my GP was on the ball, but my brain etc hasn't caught up from the shock, plus the total fatigue etc from pneumonia. I am trying not to moan, but it has been a hard month.

It is reassuring to know my reactions and emotions are normal under the circumstances. I know the NHS is going as fast as it can. I can't share my feelings much with my husband, as he has been doing all the housework, the caring, the driving me to appointments and shopping since I got ill. Even getting to the bathroom and back was very difficult for me due to my weakness and breathlessness. He is having so much to do. In some ways, our lack of paid work at the moment is a blessing for him.

He is also autistic, like our son, but high functioning and is quite worried and upset, as you can imagine. Our only relative is his 89 year old mother. It would not be helpful to tell her anything.
 
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I pray for you. I pray the strength comes to you to get through this most difficult experience. I pray that love fills your kind heart so that you know all will be well. Your son needs you. We on this forum need you, your contribution has been gratefully appreciated. Lots of love to you from this random someone you never met who prays you survive and thrive.
 
I am sorry to read you are going through such a difficult time. Take heart though that it is “normal” and ok to feel like your mental health is taking a battering whilst waiting to get to the bottom of what is going on physically with you. I’ve been there. Was first diagnosed with breast cancer 9 years ago, and then last year was diagnosed with a re-occurrence that had spread. Waiting for results is, for me, truly the hardest part of the process. It’s the unknown. At least knowing the results means they can give you some answers, so see that every appointment you have now is a positive step towards getting the information for the medics so they can guide you through this. I sincerely hope all your tests come back negative for cancer and it’s something that can be resolved easily. i Know it’s a cliche but right now all you can do is take each day as it’s comes, and know that everything you feel psychologically is perfectly fine for you, it’s ok to feel worried. does your hospital have a macmillan unit, if so give them a call and see if there is someone you can talk to about your fears. Take care. X
 

A hard month really doesn't cover it Lucy. I'm so glad your GP has acted so swiftly for you.

The NHS indeed is busty, but when we need care and support we need it, and you need it. Remember to be your own strongest advocate.
 
on @lucylocket61 I am so sorry to hear how tough things are for you. I know you have been having tough times for a while.

I will also pray for you and your whole family.

I was so grateful for your support and advice when I was first diagnosed. It made such a lot of difference and I know that there are many others who are similarly grateful.

As someone who also has a high functioning autistic husband and also children with autism I do get to some degree how much energy that takes on a daily level even when everything else is going well.

Feel free to vent here anytime.

Please let us know how you are going.

Take care.
 
lucylocket61 said:
I can't believe I was scared to post about what is going on, as I felt I was letting people down by not being able to support others. Thank you mods for letting me have this thread, even though it's not diabetes related.
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You are not letting us down by needing the forum for you for a change.
You've done an incredible amount of supporting (and gave us mods some headaches along the way occasionally ) over the years, and all that support comes back to you now you need it.
Even the headachey parts mean we know you a little better so you're closer to our hearts.

Please keep posting, venting, sharing, you're as welcome to give support as you are needing it.
 
Hi @lucylocket61 I just caught up with your thread in the NZ time zone.

Coming late to the thread I can already see the huge outpouring of love and support for you from other forumites but I wanted to add my small piece to the pile.

I know pneumonia can take ages to clear up, even for young healthyish people, and long covid is something that we have to hope will gradually improve. So am really hoping that the cancer is just a scare, though I guess if you do have it it's best to know as soon as possible as so many kinds are very treatable.

Thinking of you

Lots and lots of virtual hugs.
 
@lucylocket61 first read your own signature!
Of course people here will support and help and hear rants. Life is always ups and downs, swings and roundabouts and now its your time to receive rather than give.
I'm hoping the other forum you mention is the wonderful one at carersuk.org where the people will have tremendous understanding of the situation you are in as a carer. I was a contribution there fro several years and they were a great help to me. Can't recommend them highly enough.
I too had covid at the beginning of October and have felt very down since, maybe that is all connected, so no wonder along with everything else that you feel scared, anxious and as though it's all out of control. Perfectly natural feeling and emotions in such circumstances.
I'm just so glad you've got a doctor who is on the ball and that's its not long now until you start to get some answers, and hope you start to feel better both physically and mentally.
Do stay posting when you can.
Xxx
 
So sorry to hear you are having such a bad time at the moment lucylocket61, and really hope and pray you get clear results. The pneumonia takes it out of you big time, can't comment on the covid as I've not had that, but have been through those other health issues. Just take one day and step at a time and try not to think about too many steps in front, that was the way I got through it and maybe it will help you a little. Yes I know much easier said than done but do try to think of yourself a bit more.
Please do keep us updated and let us support you a little.
You are in my thoughts and prayers x
 
I am due a CT scan tomorrow afternoon, but I don't think I can do it. I can't breathe on my back, I can't hold my breath for more than 5 seconds, and I am still coughing. The scan is my abdomen and pelvis. I will ring the unit for advice in the morning. This pneumonia and fatigue and breathlessness is really not good. It's been three weeks since the second lot of antibiotics kicked in. I can only move in slow motion, a bit at a time.

I need the scan to help see what is going on with the possible cancer diagnosis, but it seems delay is inevitable. I feel doomed.
 
If you call them in the morning hopefully they may be able to make adjustments in order to make things easier for you best of luck and you are in my prayers.
 
@lucylocket61

I don't want to seem harsh or uncaring.
the thing with severe anxiety is always over thinking how bad it will be of i won't be able to cope, it's just too much for me, what will they think. I'm not doing it, it is something that doesn't need doing! They will think I'm useless, nobody will help me, what if I get it wrong, how embarrassing!
How many times have you battled against diabetes?
How many times have you told oor suggesTed to ask for advice from a doctor, nurse and others?
How many times have you done something that was hard mentally because of your anxiety. Then wondered what all the fuss is about after.
A lot of things with anxiety is the before.
Not actually doing it!
The not knowing factor, tears you up.
But, most of the time, it is sorted, despite the anxious thoughts.
Please, turn up for your scan, it is the anxiety of getting a result you don't want or want to face. But what if it isn't, what if you don't go. The unknown will get worse for you.
The staff are there to help you, they are caring and if you tell them your concerns I'm certain they have dealt with worse. There are handicapped, paraplegics, that need scans, even I get one, every year or so. And I'm a grouch!

You have got this far, don't let your fears, give you pause, you need this, not the worry.
Book your travel, get someone to take you, think of yourself, your family, your health.

My best wishes.
Thinking and praying that you do the right thing.
 
Thank you. Usually I would agree with you, but this is an actual physical issue of recovery from pneumonia, and not being able to breathe on my back or hold my breath - both needed for the scan. I hope they can do the scan in a different position.
 
lucylocket61 said:
Thank you. Usually I would agree with you, but this is an actual physical issue of recovery from pneumonia, and not being able to breathe on my back or hold my breath - both needed for the scan. I hope they can do the scan in a different position.
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I'm absolutely certain they can do a scan upside down if they need to!
Standing up will be ok. Sitting up, all fours, crawl, backstroke, butterfly and the others including doggy paddle, there is always a way and they will do it.

don't worry!
 
They may be able to give you something to help your breathing/stop you coughing whilst you have the scan (?nebuliser). I know that's not the only difficulty you've got at the moment, but it's worth asking.

Edited to add. I'd try ringing today.
 
Lucy, I'll be praying for you. You need this scan tomorrow and I hope they understand your problems and how to help you through it. If you had no problems you wouldn't need the scan, they must be used to people coughing, or who can't lay flat.
 
I understand your concerns. I had a panic attack the first time I needed a scan and had to stop the procedure. This was an MRI scan 30+ years ago, and the procedure had not been fully explained to me prior to the start. Modern CT scans are carried out with a machine like a doughnut ring, so you are not inside a tube. The platform table you will be on can be tilted so you are not flat, your upper body may be propped up to help you breathe better, and as the scan is abdomen and pelvis the breath holding may not be necessary.

I would suggest turning up for the appointment, and explaining your concerns to the clinicians. They will have had great, recent experience of carrying out scans of people with breathing difficulties, and will know how to assist you. It would be a great shame not to make use of this opportunity to get a proper diagnosis of what is going on and the potential for early treatment if needed. Also to allieviate your anxiety with not knowing. I know lots of folks here are rooting for you and wishing you well. Please get the diagnosis / treatment you need.
 
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