all is not well

[filly]

I am going ahead with the immunotherapy. I am scared, but its my only option of treatment. The potential side effects look grim, but then, the side effects listed on any medication look grim too.

At the moment we are just existing, going from one appointment to the other. Yesterday I started meds for my anxiety so I just have to wait for them to start working in a couple of weeks. Hubby is getting tired and struggling a bit so I have asked for help for him.

Excited for you. Best of luck. My friends husband had it at Addenbrookes. He is very much alive many many many years later. No symptoms or problems at all. Gets a clean bill of health all these years later.

 

[lucylocket61]

I am sorry to not respond. I am not getting emails about this thread. I don't know why and lack the energy to find out.

My anxiety meds are starting to work, so I feel more like myself emotionally. It's not widely known, even among the medical professionals, that suffering abuse in early childhood, particularly the first 5 years, causes brain rewiring to a state of hypersensitivity if anything threatens us in a major way. This rewiring is for the rest of our lives. We can't switch off the state of terror consciously. Thankfully, the meds I am now on are slowly switching this off and my fear levels are dropping to 'normal' levels gradually. I have been blessed with a head nurse who listened to me and understood. I am talking about it to you as I think it is important for as many people as possible to know about this rewiring if they encounter others who may appear to be overreacting in situations. It's a form of PTSD.

Apart from nausea and tiredness I am ok. Thank you for all your support. I am happy to answer any questions about anything. Knowledge is power. We never know what tomorrow may bring.

 

[lucylocket61]

Macmillan and the palliative care team have been brilliant. I now now have PIP, ESA, a blue badge and a stool for the shower. Being self employed I didn't think I qualified for ESA, but I do. On Friday a social worker connected to the Severn Hospice is coming to discuss help, practical and emotional, for each of us. I feel we have a network of care and support around us, including you guys.

I won't know if the immunotherapy is doing anything until the end of June. I am not in pain.

 

[HSSS]

Macmillan and the palliative care team have been brilliant. I now now have PIP, ESA, a blue badge and a stool for the shower. Being self employed I didn't think I qualified for ESA, but I do. On Friday a social worker connected to the Severn Hospice is coming to discuss help, practical and emotional, for each of us. I feel we have a network of care and support around us, including you guys.

I won't know if the immunotherapy is doing anything until the end of June. I am not in pain.

So glad to hear you have no pain and you are getting great support.

Thank you for sharing what is an intensely private and difficult experience. As you say none of us know what lies ahead and just maybe having read of your experiences someone may have a little more knowledge and a little less fear Should they face something similar. Hopefully knowing you can be helping others will bring you some comfort too.

 

[Outlier]

Thank you for the update. You are inspirational. I'm glad to hear you are getting real support.

 

[EllieM]

It's lovely to see you posting again.

I am so glad that you are getting physical and mental support.

Thank you for keeping us all updated. I think this must be one of the few threads on the forums where everyone is in agreement. We are all combined in sending you best wishes and hopes.

 

[lucylocket61]

PS there is a little box at the bottom of my screen telling me to enable push notifications. What are they?

 

[Antje77]

Thanks for replying @lucylocket61 , and very happy to hear that you're doing much better, mentally. Sounds like you have all the right people around you.

PS there is a little box at the bottom of my screen telling me to enable push notifications. What are they?

Not sure. Curious to the answer though.

I am sorry to not respond. I am not getting emails about this thread. I don't know why and lack the energy to find out.

I can't change your settings for you but it's easy to change them if you know where to look.
On a PC, click on your name to open the pop up window and click preferences:

No scroll down to Content Options and tick the boxes you want ticked, and don't forget to hit the Save button.

 

[Lamont D]

I am sorry to not respond. I am not getting emails about this thread. I don't know why and lack the energy to find out.

My anxiety meds are starting to work, so I feel more like myself emotionally. It's not widely known, even among the medical professionals, that suffering abuse in early childhood, particularly the first 5 years, causes brain rewiring to a state of hypersensitivity if anything threatens us in a major way. This rewiring is for the rest of our lives. We can't switch off the state of terror consciously. Thankfully, the meds I am now on are slowly switching this off and my fear levels are dropping to 'normal' levels gradually. I have been blessed with a head nurse who listened to me and understood. I am talking about it to you as I think it is important for as many people as possible to know about this rewiring if they encounter others who may appear to be overreacting in situations. It's a form of PTSD.

Apart from nausea and tiredness I am ok. Thank you for all your support. I am happy to answer any questions about anything. Knowledge is power. We never know what tomorrow may bring.

So glad to hear from you. I knew that you would in your worst moments, would battle through to find the resolve to get the help you need so much.
When in counselling, my childhood years were highlighted and talked about in relation to my breakdown.
It became apparent that even though I had through my life experiences that I could handle and cope with so much. But , the lack of resilience to going back to my childhood fears and looking after my family, how I could deal with living without. The effect on my anxiety was traumatic.

I empathise, so much, and again my thoughts, my prayers, and my best wishes are for your battles today and tomorrow is such a better day.

Take care.

 

[LittleGreyCat]

Push notifications.
https://www.howtogeek.com/751954/what-are-push-notifications/
Basically a service (such as a forum) can see there is something for you, and proactively push a notification to your device (usually a phone).
You don't have to be actively using/looking at the service to see notifications.

A long time ago I came across this with emails.
Instead of your email client having to connect regularly to your email server to check if there were any new emails, the server would "push" a notification to you when a new email arrived on the server.

Hope this helps.

 

[lovinglife]

Thank you for finding the strength to post an update @lucylocket61, it can’t be easy, you are often in my thoughts and I’m glad you’re not in pain and you are getting support as a family - sending you hugs and positive vibes x

 

[VashtiB]

Hi @lucylocket61

Just wondering how you are? You are often in my thoughts and I hope you are getting all the help and support you need. Take care

 

[Nicki70]

Hi Lucylocket. I have not been on the forum for a few months, but I have thought of you. I am so pleased you have great support around you and they have you pain free. You are remarkable. It may not always feel like it but honestly from one cancer patient to another - you really are. Take care x

 

[lovinglife]

Hi @lucylocket61 - just wanted you to know that you are never far from my thoughts and I miss you being around, hope things are going as well as they can for you, take care x

 

[VashtiB]

I have to agree with @Nicki70 @lucylocket61 you are a remarkable person. I hope that you get some comfort from all the well wishers here. Your contribution to this forum helped change my life and those of many others. I hope you are continuing to get all the support you need.

Take care.

 

[JohnEGreen]

@lucylocket61 Hi Lucy jsut bumping this back up so you don't think we have forgotten you and to let you know we still are thinking of you and hoping for the best.

 

[lovinglife]

You are definitely not forgotten Lucy, think about you lots and miss you being here x

 

[lucylocket61]

@lucylocket61 Hi Lucy jsut bumping this back up so you don't think we have forgotten you and to let you know we still are thinking of you and hoping for the best.

Thank you. I am very tired now and spend much of my time in bed. I have lost a lot of weight. At least I don't have to think about my blood sugar levels anymore. Your messages mean a lot to me.

 

[lovinglife]

Bless you my love, you mean a lot to us too, you know where I am if you want to offload- sending love to you & yours x

 

[Outlier]

Sending warm thoughts. You are very much part of this Board.