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Shell shocked 2

(24 Posts)
Teddy111 Sun 07-Apr-19 15:24:56

Still hanging on,just. They took two thirds of his right lung. He has had 20 radiotherapy and 12 chemo. On the 8th December 2018,blood test,15th CT scan. 16th admitted to hosp with pneumonia and ? sepsis. Within an hour he phoned to say doctor wanted to know about Do Not Resuscitate,he said 'I think they are being premature'. On to I C U for 4 nights,then a ward. Sent to rehabilitation unit on 31st December. Discharged on 21st January. Appt with consultant,it was a young woman,she said everything seems to be the same. Saw consultant two weeks later. He said it is terminal,I will give you more chemo ,if you can tolerate it.He has had one and another in two weeks. Thankfully no side effects. He can still totally self care. I contacted the specialist nurses to give him some emotioal support.A lady came,wrote down his medications for heart,diabetes,cancer,shook hands and said @ I will discharge you from my caseload,phone us if you need anything,it might not be me as I am at Uni for three days a week. Just needed to say something to someone.

Eglantine21 Sun 07-Apr-19 15:45:46

Just wanted to send you some 💐 I went through something very similar with my husband and I want you to know someone is listening though I’m not good at comforting words.

Were the specialist nurses Macmillan? They were worse than useless.

Grannybags Sun 07-Apr-19 15:50:09

Sorry I have nothing to say but I didn't want to read and run. flowers

nanaK54 Sun 07-Apr-19 15:51:32

flowers and kind thoughts

Maggiemaybe Sun 07-Apr-19 16:05:17

And from me too, Teddy111. flowers It doesn't sound as though you're getting the support you need to help you through. I do hope this improves.

Starlady Sun 07-Apr-19 16:05:19

TeddyIII, I take it you're talking about your dh (dear husband)? My heart goes out to you both. I'm glad he can still self-care, but if he's terminal, sadly, that will change, eventually. I hope you're prepared for that in your heart and mind. Or do the doctors expect the additional chemo to turn things around? Either way, I wish you all the strength and courage you need to cope with this painful situation. I can only imagine what it must be like. Sending lots of hugs!

EllanVannin Sun 07-Apr-19 16:32:39

If it's any consolation a neighbour of mine in his 70's had a big operation to remove a large affected part of his lung Christmas 2017. He was a smoker and liked his beer too.

Much of last year was taken up with radiotherapy but he was back on his feet, then this last Christmas he contracted pneumonia through having flu. and hospitalised

Once again he's up and about and driving his new car which he bought last year, also holidayed with his family last year when we had the good weather.
He's well on the mend, doesn't now smoke but still has his bottles of beer and is picking up nicely.

He lives on his own but has a very supportive family who visit. He also looks well if a bit slimmer. 6 monthly checks so far as I know.

tanith Sun 07-Apr-19 18:33:33

I was in that situation 9 mths ago and was put in contact with Marie Curie and they were wonderful. We had such support and care from them both of us. I can’t speak to highly of them they helped us through a sad and stressful time.

B9exchange Sun 07-Apr-19 18:38:13

So sorry for what you are going through. Do contact your local hospice, they will give you terrific support, please don't feel you have to go through this on your own.

Namsnanny Sun 07-Apr-19 19:29:21

Teddy111...….flowers

M0nica Sun 07-Apr-19 19:30:16

Stay with us, despite our ups and downs and times, we are always caring for those having a dreadful time. Many members have been there and survived, for others, we know that our time will come.

keep posting and we will do all we can to help and support you.

52bright Sun 07-Apr-19 19:46:21

Teddy111 so sorry that you find yourself in this awful place. You will find lots of support on here from gransnetters. The advice to contact your local hospice is very good. They are the best at medication pain and helping the very ill with emotional and practical problems and helping them in all sorts of ways. Best wishes Teddy. My thoughts are with you.

sassenach512 Sun 07-Apr-19 20:01:08

((hugs)) Teddy, please don't get despondent, we'll do our best to buoy you up when you need it x flowers

Chucky Sun 07-Apr-19 20:52:17

My heart goes out to you Teddy111. As others have said I do hope you get the support you need, as the specialist nurse seems to have been worse than useless.
Please also look after yourself as you will need to be strong for both of you.
For you thanks and we will be here to support you. xx

Dontaskme Sun 07-Apr-19 21:27:59

I am so sorry for your situation.
All I can say is that if the specialist nurses were Mcmillan the only experience I have of them wasn't a good one. However as with all things there are good and bad.

I agree with tanith about Marie Curie, and personally if I were you I'd get in touch with them.

flowers

Teddy111 Mon 08-Apr-19 09:09:22

Thank you all for your advice and kind messages. I have just spoken to Marie Curie nurses.she was very nice but they only provide 'hands on care' . I thought that there was support from somewhere,certainly the expensive tv commercials seem to indicate that you will not be on your own. We do not see anyone. I noticed last Friday,our little dog yawned and I saw a little growth between his top front teeth,vet p.m.operation this Thursday. My cup runneth over.

mcem Mon 08-Apr-19 09:15:32

There are 22 Maggie's Centres throughout the UK.
Enter your postcode on their website to find if there is one near you.
If not, I believe they'd offer advice and support.
Wishing you well.

Eglantine21 Mon 08-Apr-19 09:30:15

Sue Ryder were very good, if there’s one near you.

Also Hospice at Home did at least give me a break to get my hair cut or meet with a friend.

If you don’t mind saying whereabouts in the country you are some GN members will have experience of local support.

Teddy111 Mon 08-Apr-19 10:33:41

DN20,there is hardly anything in this area. Age UK were wonderful and a gentleman came and arranged blue car badge and benefits. I think Henry V111 said it was the most 'brute' of his counties,I think it still is. I have neglected myself,glasses,dentist,hair,need hearing aid. 18 months ago the GP said when you get over this chest infection,get back to me,I did,just last month, (COPD/COAD) I told him that I cannot tolerate the continual carping,criticism and complaining,much longer. He said ,'Aren't you lucky that he feels well enough to complain.' I asked if he would refer me to a physio because after driving and sitting in the car for all the appointments, X 3 ,that is for the heart attacks and then the cancer,bloods,then X-rays,CT scans,MRI scans,diabetic nurse,dentists,eye tests,fetching meds, I have bad pain in my right thigh muscle,I don't think it's arthritis and could I get from physio some exercises to help me. No,he would give me painkillers,I said,Thank you,with respesct I don't want to start taking tablets,I have seen too many old people who end up on a raft of tablets,till they don't know who they are. Sorry,just feeling very sorry for myself. Embarassed now. I know so many of you are struggling with a lot worse. I have found out from the internet that I can get a Carers assessment from the Family Carer Team. I rang them and they said next month, I said I didn't know if I could wait that long. A lady rang back,last Friday and they said I could have one Tuesday 9th April.

Starlady Mon 08-Apr-19 10:39:42

If you don't need hands-on care and just want emotional support, this may be the best place. Or you may need to find a support group or two, one for dh and one for you, either in-person or on FaceBook. I'm sure they exist.

Sorry you have the problem with your dog on top of it all. Hope that is resolved easily.

Blinko Mon 08-Apr-19 10:41:03

Oh Teddy111 my heart goes out to you! I can only suggest what others have said, hospice, Marie Curie. We too found that MacMillan weren't all that helpful when we were looking after my mother.

I can't offer more than has been said already, but sending hugs and thinking of you and your husband flowers

Do please keep posting. We will always be here for you.

Teddy111 Mon 08-Apr-19 12:36:38

Thank you all for your messages. It does help to feel as if you are not on your own.

Bunny60 Mon 08-Apr-19 13:50:56

Hello Teddy111, I'm a complete newbie on GN but have to say I'm impressed with support and information available here. I just want to say that you must try to put yourself as priority in self care and love because you need to keep strong and healthy to look after your husband. Do you have family that can give you some help and support? Maybe a very good friend nearby? I know it's hard if you have always been an independent person but ask for practical help if you need it. You sound as though you have been overwhelmed what with the diagnosis and aslo your dog's health. I think GN is going to be a great outlet for you. I for one am going through troubles too ( those who are not are blessed but life always dishes it out at some point!). So please take time to look after yourself. You didn't mention ages but I sincerely hope you find respite from full time caring from some organisation who is reputed to "be there" in times of need. I shall be thinking of you. Big hug.

Teddy111 Thu 11-Apr-19 21:02:37

Thank you Bunny 60 and everyone else. xx