NCLC

Hi, so sorry you are going the this. My sister has been told her hair may thin but she shouldn't lose it.

As a family we are all spending time together and at the same time trying to make days are as good as possible. We try to give her as much control as possible as so much has been taken away. It's hard seeing loved ones so poorly. She loves having reflexology and finds it very relaxing. 

Thank you, I am fine, upbeat and up for the challenge.  My heart goes out to your sister and to you and your family.  I think what you are all doing is soo beautiful.  The single most important thing in your sister's life right now - is all of you.  There is so much help out there for the me and your sister of this world.  Everyone works tirelessly for you, you can dip in and out of whatever you want and most of this stuff is free.  I've been where you are most of my life - and there are certainly not enough even basic support packages for you.  I promise, it is harder to walk your shoes.  But you are doing totally the right thing, up to now the hardest thing I have done is relinqiuish some of my independence.and she doesn't sound any different.  I hear the empathy in your words as you describe your sadness at how much she has lost and how that hurts you, but I have a bit of theory that might help you.  The anger you feel when you realise your loss was for me a white rage!   It is utter chaos in your brain, how are you going to do this that or the other, how much people are going to be put out all because of you, guilt - to name but a few.  But conciously or sub conciously more likely something else happens.  From that second right at the very beginning, when your faculties are hopefully as good as they are going to be - you begin to evaluate, review, resolve and accept.  The speed at which you are able to do this is increased hundred fold - you dont even notice hardly.  Are there always going to be weaker moments - of course - but as far as all the hard work - its done and you have long moved onto something else to resolve.  But as a carer, this doesn't happen, so as a carer you worry about everything!  I think this might be why our loved ones go long before their poor relatives are ready. 

It sounds like your sister might be further through her journey than me, but she is doing great!  She loves reflexology, she is still interested in life, she still wants to do things.  I am so with her on that, I also intend to do it all.  While she is still invested so heavily in life I can assure you her only aim is to stay well enough to be with you all. 

ALL YOU CARERS  - stop worrying about what you do or dont think, might be bothering - if its that bad ask! We are so much more resilient than you think. LIVE YOUR LIFE we are all nosey we love to hear your stories.  Nor do we want you to feel guilty for doing it.  You smiling and laughing is not dis loyal to us - its tribute to us that you care so much you can still enjoy life and then share it with us!  Love to You All Jill 

Thank you for your lovely words. Sending you a big hug xxx

simone

Hi Jill,

Sorry to hear that you have the added pressure of your husband also being ill. But, so good that you are able to support each other through a truly awful time. Brilliant that you both managed a good day and we're able to share a treat of coffee out. I know at one time you never would have believed that having a coffee in a cafe would be deemed an achievement!

I'm pleased to hear that you have support from your brother and sister in law. You say you told them initially in a matter of fact way and you answer their questions with "I'm fine" ...

Just maybe, if you were to tell them the truth such as " I'm okay today but I've had a crap few days" or "Actually, I feel awful today" let them see you as you really feel including the tears. It will maybe give them the 'permission'/ green light' they need to tell you how they feel. 

They will be feeling helpless, scared, unsure what to say ... As a consequence you are all hiding behind the "I'm fine" mask. 

My husband was diagnosed New Year Eve and at the start was promised treatment and an expected 5 year prognosis. Then the world entered into Lockdown and all treatment stopped. The occasions he was admitted to emergency hospital I was unable to see him even though he almost died. He had a truly awful experience. I nursed him at home alone, family couldn't visit our home and I saw no Nurses, Macmillan or Doctors. With no cancer treatment being offered because of the pandemic he declined rapidly and he was admitted to a hospice after I moved hell on earth for him to get a place..even changing our GP to one who never even met him. A few days  after admission he passed away. Nine months after initial diagnosis.

During his illness we cried together, we hugged, we discussed his funeral.. we were open with each other as much as we could be. I am grateful for that, I just wish I could have been there when he passed away. 

Speak candidly with your family, let them know how you feel, for your sake and for theirs. 

Mym x

Just jumping in here to second the idea of notebooks to keep track of everything. We have 1 for medication taken (to try and remember the various time intervals of all the different meds, when taken, how much etc, when next due). We then have another to make notes of phone calls, visits, to-do lists for the day etc.

We use Alexa (or Siri or Google are alternatives) to set reminders for meds and appointments if people are coming over etc so we can keep track.

Also, if you can't have family attend appointments with you, you can always take notes yourself, or get the person talking to you to write you some notes to summarise what was said, or you can ask them if it's OK to record the conversation for replaying later on if you need a memory jog.

Good luck everybody on your journeys.

Thank you Mym, Oh Hell that must have been almost unbearable, I don't know where you found the strength to cope with that lot, I am in pure awe of your courage, your stamina and even more at your sustained persistance to get your husband the care he so rightly deserved.  I did it for over a year but with support and I felt like I barely made it through.The mental anguish of 'i wish' lives with you forever, sure you learn to deal with it better, the anger fades to more of a dull roar, but forever is a long time and that is only one cost to a carer, that the other person doesn't have to face and that is how we would want it - doesnt make it no easier though.  I don't think your husband was ever away from your side, he would feel you, He would know and I know cos is that to be my fate that is where I will be with my husband.  I reckon he heard every thought you sent him and he felt you, because you had always been there.  

Thank you for your advice - guess its time to stop hiding! I started this morning by being a little bit more honest.  Its been 10 days since the radiotherapy and the pain relief is still working well, but I lost the sensations in my leg again within 3 days, at first I didnt want to beliieve it so I ignored it.  Can't hide the fact you cant walk more than 20 paces tho! I was more than embarassed, heres me giving it the big 'I am' Im okay im gonna conquer the world!  Turns out it was a lot less about conquering the world and more about getting the dosages right with the steroids and I had been starting to wean to quickly.  So no more radio for now - just a tweak in the tablets!   If I had known that - this could have been sorted last week instead of jumping to the worse possible conclusions. and this bit is gonna come as no surprise to you - they already knew!!!  Lesson learned. They were just waiting for me to say!  Anyway, you can be truly certain I will heed your words with sound care and will not push my family out.  I thank you so much, this conversation will stay with me now, I truly hope you can gain some satisfaction in knowing you made the difference!!! love Jill

Jill,

I am so pleased that things are a bit clearer for you today. Sometimes emotionally it is the same as the medication problem .. just a simple case of tweaking the approach to people or in the case of medicine the dosage and things work better. 

I wasn't brave caring for my husband, I think when we are all faced with adversity and no one else can help then we all step up to the mark and do what we have to. I had no choice and I simply did what I had to out of love and respect.

Stay strong and keep fighting the battles .. my thoughts are with you and your family.

Keep messaging me if there is anything else I can help you with or simply as and when you want to chat. 

 Mym x

Hi all hope u are all doing ok. My hubby had his consultation with Radiotherapy consultant yesterday. Hopefully it will begin in a couple of weeks and she confirmed he is in the waiting list for chemo/immunotherapy. She advised us to chase appts via our dedicated nurse.

my hubby can’t lie flat as it makes him cough continually. I was wondering if any of u had the same and could advise on the best cushion/pillow to get and where from. 

I hope you are all coping with your own journeys. For us it’s the waiting for appts that gives us the most concern. 

Hi Tessa

The waiting for appointments is the worst and i'm sorry that you have to be on a waiting list for chemo & immunotherapy.

My sister is 2 weeks in from her first treatment now and has been feeling so poorly.

If anything I'd really use this time to try to eat and be in as good a place possible (i know its easier said than done). The weight has come back off so we are pleased she had gained a little before treatment had started.

Re cushion - have you tried a wedge cushion or putting anything under the mattress at the head end to raise it?? This has helped slightly but nights are still really hard for her.

Keep chasing your nurse for a start date.

Sending you a hug xxx

Simone

Thank you. Yes we r trying to build him up in preparation. I think our dedicated Nurse may get tired of us cos we r always phoning for something - but hey that’s why she’s there right!!  We will continue to call her. The consultant told us his cancer is slow growing so we feel we are low down on the waiting list but we will battle on x