Hello guys well you asked me to let you all know what happened on friday wasn’t what I expected I am now under the care of palliative care team; my breathing emphysema has got worse. I also have pick a hospice for my last days but for now I am at home. also the palliative care team are having some kind of pack with injections in that a nurse I only give me. Been told to live each day as it comes and do what I want and eat what I need to get everything in order! Nothing more can be done for my breathing just make me comfortable. So I am getting carers in to help wash which is going to be embarrassing. I am still getting my head around it I know my breathing bad and couldn’t move around without losing my breath but it’s so bad I find it hard getting to kitchen bathroom and bedroom. To think I used to walk everywhere loved gardening.
Fridays meeting with Nurse - Lung Conditions C...
Fridays meeting with Nurse
That must’ve been a bit of a shock, I’m sorry. If they can make you comfortable that’ll be good as I’m sure you’re not at the moment. Remember you don’t have to be on your last legs to be referred to a hospice these days. Some people go on for years with palliative care x
Thank you Hanne62 yeah I was told can go for years. Just dont know how I feel about it all numb.
I bet you are! Obviously we’re all going to die sometime, and I’m sure you’ll outlive some of us! But when they mention palliative care it kind of brings it home I expect? Tho really, it just means they can’t improve your illness but can help with the symptoms. Do you have someone with you?
I am not alone I have a partner
Oh good, tho it’s a shock for her too. I hope you can support each other. Btw don’t worry about the washing, cos they’ll only wash the bits you want! Washing’s such an effort when you can’t breathe. I used to just stand in the shower & then step into a towelling robe & sit on the side of the bath whilst the robe dried me all by itself!
Anyway I expect you want to rest now so I’ll stop blathering 🙃
That's a great idea.Bless you -in the depths of my wardrobe I have towelling bathrobe.....
Ha, you’d think, living in Brighton, I’d know better than to make assumptions! How’s he dealing with all this?
Not good he works night shift but he's not coping at all, he keeps saying we only be together 11 years married for 6yrs
Yes, it’s hard on him too. You must’ve married not long after it became legal then? That was 29/03/14. I remember cos I went to the first wedding of two gay girls! I’m sure the hospice will be able to arrange support for your partner. They aim to help the whole family.
Also remember the BLF helpline 03000 030 555
Tell him u haven't gone yet!Don't be embarrassed.the carers r used to helping people wash + dress.itll give u a bit more energy 4 what u need to do x
No, that’s the big thing isn’t it. I’d feel like that too. You think of all the years you should’ve had. But with palliative care you might have years left! Once he’s got over the shock, I hope he can help you enjoy them.
So do I. It took me long enough to find him I had given up years ago but he was the one who chased after me
Was he? The scamp! Yeah, life’s so bloody unfair isn’t it. I’m sad for you, and him. You’ve just got to try & hang on in there as long as you can. Decide you’re not going ANYWHERE for a good long while yet. But these are easy words, I don’t know what it’s like to be you, right now. I’m just so sorry you’re so sad. You’re too young for all this!
Thank you Hamme62 I will keep fighting am not ready to give up yet
Good on you, I can tell you’re not the giving up type!I’m sure someone else will be along soon.
Keep coming on & we’ll all keep you going when it gets a bit much. There are some lovely people here & some of them are really fun & good company too. I enjoyed our chat and as they say “we must do this again sometime” 😘
And you hanne62 take care and thank you for our chat
Oh, ttb, before I go, one suggestion- perhaps your guy should get signed off work. This is the hardest time, you need to be able to support each other. He can’t work when he’s at such a low ebb. I hope he can do that x
Hello Rob, 😊👋
I don't think we have met, because I've been away for a while. So it's nice to meet you.
I don't know much about your medical history or the circumstances around your visit with your nurse on Friday, but I see you have been offered palliative care. Please may I ask what the nurse has said to you about palliative care, and what it means and what you perceive to be palliative care? I think many of us believe that palliative care means we are literally at the end of our life. And basically we are just waiting to die, and palliative care is just assisting us to do so comfortably. The truth is it can be given at any stage of illness. It really is an extra layer of support. Specially trained medical staff help to provide more relief from symptoms and stress , a result of being ill for a long time. Palliative care will not replace your current treatment. It will be added to it. In hospice care usually all treatment is withdrawn and only measures to relieve pain, nausea and shortness of breath are provided.
I see they have also asked you to think about hospice care. This eventuality comes to all of us, but none of us, not even medical specialists can tell us the date of our demise. So, I would encourage you to enjoy your garden, take those walks even if it is in a wheelchair, hold your partner tight and live with all your might. Our lives might be two dates and a dash, but only one of those dates is already carved in stone, not the other one.
With a gentle hug and very best wishes to you and your partner.
Cas xx 🌿
Caspiana always gives fantastic advice as she has been through it all and come out the other end. It's her Positivity shining through. I also am a very Positive person and this has brought me a better outlook on my condition. I was put on oxygen for 16hrs a day last December and my oxygen level dropped to 77. I was determined to get my life back and increased my excercise ,this enabled me to increase my lung function . I have been taken off oxygen and my oxygen level is 94/95 . Dont dwell on what you cant do but on what you can do , and never give in. I wish you well and remember, every day is precious ,so live it the best you can. Miracles can happen if you believe. xxSheila 🙏🙏🙌😍💕
Fabulous advice from Caspiana and Garshe.
Can't add any better words of support ,comfort or advice but am thinking of you.
Both Caspiana and myself are very Positive ladies..negative people attract negativity. Theres always something to be grateful for and always someone worse off than yourself. .Have a lovely day. Wishing you good health xxSheila 💕💕
You are so right -everything in the universe is composed of energy.I always start my day counting my blessings and each day there are more to be thankful for.
Have a good day - we have had a new visitor in our garden a woodpecker!
That must have been a shock, but as the others have said enjoy what time you have left. Having carers in will give you more breathe to enjoy things
Hi there. My dear friend had palliative care for a few yrs & quickly got over her embarrassment about help about washing etc as she said it gave her more breath for other things. It was a relief to her & her husband to have a plan & help for end of life when it came. Her GP always used to joke every New Year " Still not dead yet then? " as she was told probably wouldn't see another Christmas 3 yrs before. Her reply " Nah I know you'd miss me 😄"
Sorry I haven't been keeping up with all of the posts here and must have missed some of yours. Although it must have been a bit of a shock, I really hope that once you get used to the idea, the palliative care will be a real help for you. It has a new meaning now, and is there to help you with your living. Sending you lots of good wishes.
Thank you all for your thoughtful replies
Just look on it as extra care, and forget the palliative bit. I know it must be a terrible shock for you, but don’t let that spoil the rest of your life, which could be years. Best wishes to you Timetobreathe.
Very difficult times for you and your partner. I'm sure that you will find palliative care to be a good thing for you along with carers to give you a helping hand. I am not at your stage yet but have carers coming several times a week to help with aspects of personal care that I now find difficult. You will probably soon loose any initial embarrassment. The thing I find is that I still get breathless when a carer is with me as I talk too much! It's nice to have a bit of company when they are here too.My best wishes to you.
Hi Timetobreath. My husband has been under the care of the community palliative care team since March and February this year and they have been absolutely fantastic. He has been given physio to calm and regulate his breathing which greatly improved things for him. He also spent two weeks in the hospice where their doctor discussed his medication tweaked it a bit and added a couple of meds which made him more comfortable. After 2 weeks he came home. I might add those injections you mentioned are still in the cupboard unused. I was mortified at the thought of palliative care but have completely changed my opinion. Accept all the help you are offered. It will relieve the pressure on your husband and you will be able to better enjoy the precious time you have with him. Good wishes to you.
Once you get your head around this I reckon you will start to feel the benefit of the extra care. As others have said, you'll soon lose the embarassment of having help to wash and if it means you then have the energy and breath to do something you'd like to do (instead of something you have to do) then it's all to the good!
Attitude of mind can help an awful lot, so don't neglect that part of your wellbeing. If you are offered any kind of emotional support grab it with both hands and use it until you are ready to stand on your own again. This goes for your partner too!
You may have a fair number of years ahead of you with many things left to enjoy, so make some plans for the future (they don't have to be big ones!) and take it a step at a time.
When I'm at my lowest ebb I aim to achieve one thing a day. That may be simply getting dressed, but every time I achieve what I planned, I give myself a pat on the back! Gradually, I find that I can do two things a day, and when things improve I can do many more.
You will have your down times, that goes without saying, but try, if you can, to find a little bit of light relief in each day to share with your partner. Maybe a joke or something funny that passed between you and your carer. Make it a habit to think, 'What can I tell X about when he gets in from work that may make his day a little bit brighter?' By focussing on helping him you may also help yourself by looking for the small positives in life.
It's a bummer at the moment! I get that! And who am I to go on about all this - I'm not walking in your shoes. But I hope that what I've written may help you a little bit at this rotten time in your life. There is usually some light somewhere to be seen at the end of the tunnel if we look really hard for it!
I really do wish you all the best and good luck with adjusting to your 'new' circumstances.
xx Moy
I was referred to hospice care last January and it has been so helpful. I was asked if I wanted to see the palliative care consultant. When I agreed the appointment was only a two week wait. I spent an hour with the doctor and she is going to look into what she can organise in the way of support. I am offered transport for each appointment, which takes a burden off my husband. The whole experience makes me feel very encouraged. I am hoping to start a hospice visit one day a fortnight in August which will give my husband a break too. All the best x
Thank you all for kind words. And you all are lovely people
Sad to read your post but hopeful for you to enjoy time with your partner and get into your garden. You both sound lovely caring people. My friend was placed in a hospice locally, and was both living at home and day stays in the hospice where she was accompanied by her husband. It was quality time with friends and family with the ease of expert care. That is what I hope you can enjoy together.
I am so sorry to hear your news. I hope you are looked after well and live each day the best you can.
You are in my prayers timetobreath Peace and love to you.
Tom.
What a shock for you Timetobreath but palliative care does mean you will be properly cared for. Hospices are very caring places where people go to be cared for too .
I am so sorry to hear things are so much worse than even you possibly knew. Please take care and accept all the help offered. Thinking of you. Xxxx
You must be reeling after that news. Take time, read all the great answers here and don’t forget you’re still in charge. Take all the help offered......refuse nothing except blows!
So sorry to hear this , what a shock for you , being told to get things in order etc fills us with fear, it’s a feeling of being cheated and how did we get here! Glad you shared it with everyone on here , that takes the fear out of it a bit. Sending you strength to cope and hope the replies bring you peace of mind. 🙏🙏
I feel for you Ttb as I have been under the care of the palliative team for about 6 months. The words palliative and hospice were no no’s in my life, but now I use them a lot so my family and friends don’t feel awkward and skate around them.I have been offered help with washing. I’m pushing back on that one for the moment. My next try is a washing bowl on the bed. I’ll probably soak everything but it’s worth a try. The bathroom seems to get further and further away…..
I was also told by one of the nurses that you can be in palliative care for years, so I take heart from that and still try to do some things for myself, then give myself a brownie point.
I was such a whirling dervish and like you, love and so miss my garden.
My daughter has taken it over for me and she now has a love of gardening too. She is growing runner beans and tomatoes for the first time, so exciting.
Just going to try out the new washing regime!
Take care, I’m thinking about you.
Jax 🐶xx
Washing bowl on bed great idea-lots of towels and don't overfill said bowl.(How is is water always seems more) when it gently obeys the law of gravity and spills
Thinking of you take care xx
Your right there m2m, fortunately my son didn’t overfill it and it worked out quite well. Pleased with the first attempt. Deserves a Brownie point. Jax 🐶x
Thanks for your update timetobreath. You’ve had some lovely messages of hope and past experience shared. No one knows how long is left on our lives so we try to live them to the fullest we can. We hate to see how we have changed from our energetic youth days I know it’s a big shock for you and difficult to take in. Your husband will be with you to help and support. Don’t worry too much about the washing Take care. Live your life to the best you can and enjoy the garden and any walks you’re taken on. 🤗🤗Anita
Hi Rob,
A hospice is almost a fancy name for a nursing home, where all your needs will be met and made more comfortable.
"Palliative care", one of the most misunderstood of terms. In 2018 I was diagnosed with Lung Cancer, statistically one of the deadliest of all cancers. After failing the fitness for surgery test, I elected to take the route of radiotherapy treatment. All over the various forms including the consent form radiotherapy was termed as being 'Palliative'. 3 years and 3 months later. after completing treatment, my Oncologist is fairly confident of me being cured! So you can see that Palliative is not seen as meaning 'at the end of life', just a more specialised intensive kind of care.
I am now off to the hospital for the rest of the day, to have my bowels examined for cancer. Yet more fun and games.
That must have been a shock , I know how I would feel hearing that . You have had a lot of support from the people on here , and I hope you and your partner will have plenty of time to make more happy memories together.
Thank you all for you understanding and kindness you all are wonderful people thank you
I’m So Sorry To Here This As It Must Of Been Such A Shock For U And Your Partner It Must Be CC also Hard For U Both .. From What U Have Said U Will Not Give Up And U Will Fight On Because You Are A Strong Person Totally U Both Take Care Keep Safe 🖤🖤
I'm so sorry to read about your latest news Timetobreath. The replies you have are just so lovely, caring, understanding and encouraging. Hospices are wonderful places with wonderfully gifted staff who choose their path because they want to and have special training.. hope you're feeling a little better after reading your all the above - I know I am for when it's my turn!
I am so sorry to hear this but this is such an inspiring group of people . You will learn a lot about it that you can't learn from others. Let your partner read this too. It will help him too. Take care
I am so sorry to hear your news.Sending a gentle hug and don't forget to call us if you need any advice or just a chat.
Take care
Debs
So sorry to hear your news , Its good you have the help and support you need , it's not an easy time and it's hard to find the right words . I'm going through something similar the only difference is here in Greece I get no support from hospitals or carers as the Greek way is family do everything right to the end and unfortunately I only have my 81yr old father . I'm just looking at it as a journey and I'm at the beginning . Take care .
Thank you all for your kind words. Davey1963 I would be lost without the NHS so am very grateful for it. And sorry to hear your having a hard time in Greece.
I'm with you ttb, I suppose to be gone back in November but I'm still here thanks to my local hospice and community nurses, we must try to enjoy the time we have left. 😷 great advice has been given by all in this forum advice that I have taken on board too. Lots of hugs 👍💝
Others have said things a lot better than I can, but do make good use of support offered it will make a big difference.
Sending love and hugs
J
That sounds tough news. And will probably take a bit of sinking in. Try not to be embarrassed about personal care. Carers can be very respectful kind and empathetic. And it will save your energy for getting the best out of the day.My mum was in a similar position and it helped her enormously- and she became great friends with her carers. She decided to just concentrate on the best bits of the day and was indomitably positive. She worked at it mind . Send you big hugs xxxxxxx
Hi all thanks for all your support and kindness you all amazing people.
So sorry to hear that. Do what you can while you can still do it. That was wise words from the nurse. XX
Best wishes. I hope the new care will improve your quality of life and that you and your partner will have many more happy times together. xxxx
Big virtual ((((hugs)))). The hospice will help you make the best of the time you have, which is what palliative care is. Wishing you all the best.
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