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cancer

(312 Posts)
etheltbags1 Tue 28-Apr-15 21:41:14

I have on many occasions asked for advice on these forums but this time it is really serious, my cancer is not responding to chemo and has not been killed in my lymph glands. Any advice how to cope with this situation, I don't feel ill or weak or ready to depart this life and will fight with all guns blazing but what can I say to myself in the small hours when I am scared.

Ana Sat 16-May-15 22:07:04

I'm nearly the same age as you, Mishap, and I do moan and groan sometimes, but not about health issues - they just have to be got on with! grin

I think ethel comes on here to express her 'worst-case-scenario' fears and hopes we will assuage some of them, which I hope we do.

Ana Sat 16-May-15 22:09:13

(and yes, the injections only go into the fleshy part of your outer abdomen, not into your actual stomach!)

Lona Sun 17-May-15 10:18:04

Ethel I think you're doing a fair bit of moaning and groaning yourself! grin

whenim64 Sun 17-May-15 10:25:23

As someone who avoids injections and blood tests like the plague, I found the only ones I could tolerate without getting a fit of the vapours were the stomach ones (Clexane? sp?) They are done quickly and only go in a short way. Just remember to alternate sides to avoid little bruises. I never felt any of them.

loopylou Sun 17-May-15 10:47:39

Ethelbags definitely try Elly Griffiths' books that NanKate recommended on here and suggested to me on another thread recently.
I'm hooked and having read them all I passed them on to my D and now my 89 year old mum is enjoying them.
DD said she couldn't read them fast enough so they seem to be a 3 generations read in my family smile

NanKate Sun 17-May-15 14:51:39

Glad you and your family have enjoyed the E G books so much Loopylou. I love the character of Nelson who is so unpolitically correct. I have also read The Zigzag girl by E G too, not quite as good but still a nice easy read.

We are there for you Etheltbags1 so hang on in there.

annodomini Sun 17-May-15 15:55:43

I have all Elly Griffiths's Ruth Galloway books on my Kindle and find them more relaxing than most other mysteries.

rosequartz Sun 17-May-15 18:07:08

If you are not keen on grumpy and bloody-minded people then perhaps best to avoid the Agatha Raisin books by M C Beaton.
If you don't mind reading about them (rather than have them in the next bed) then these books are quite entertaining.

Deedaa Sun 17-May-15 18:26:53

I've got some Agatha Raisins on my Kobo rosequartz now I've got used to her I find them quite fun. I can also reread them because some of the plots are so complicated that I completely forget Who Dunnit or why!

When I had one of my knees replaced I made the mistake of taking Bleak House into hospital with me. It's a wonderful book - but not exactly a laugh a minute if you're not feeling well.

etheltbags1 Mon 18-May-15 09:09:41

thank you for the ideas of the books, going out today to look for some.

some of you have questioned my remarks regarding home visits from nurses etc as being interfering. I really hate people in my house apart from one friend and my family, however the thought of nurses being in my home makes me feel scared because of what ive heard, people say they report back to the doctor how you are and they take notice if your house is clean, what facilities you have etc. I would feel my home is violated, I would also feel that I was not getting better because I would not be able to get out until they came.

I have heard that in hospital they don't let you come home until you have been assessed by social services to see if you can cope, I think this is ok if you are aged about 90, but I can cope by myself now so what will have changed by having an op, apart from having to be careful with lifting etc.

I also hate the interference in my private life, I have been asked things like how many pillows I use, I have been told I can 'talk' to someone but quite honestly all the talking in the world cant give me my life back as it was. I also hate the new way of the nurses how they try to be 'your new best friend', they try to be chatty and are called by first names. They are paid to do a job and there should be a professional distance between patient and nurse. I was trained as a therapist to always keep a distance between personal and professional lives.
I cringed when I heard a patient say to a nurse that he had seen her 'doon the pub' the other evening and she laughingly replied that she had been drunk. In my opinion she should never have let herself get into that situation. I even heard a patient say 'hello darling' to a senior nurse.
Sorry but I cant accept that sort of behaviour which seems to be encouraged nowadays. I much prefer the old way of respect on both sides. am I the only one to think this.

Ana Mon 18-May-15 10:28:42

Why do you think nurses will be visiting your home, ethel? Have you definitely been told this by the medical staff? I'm not sure why you'd need any home visits after your surgery.

Elegran Mon 18-May-15 10:51:11

I was told by a district nurse who did a lot of visiting housebound peoiple that the cleanliness of the house was nothing to do with them unless it was so filthy that the patient was in danger. As long as she could wash her hands before starting a treatment she ignored it.

If you can obviously cope on your own you will be allowed to - they have enough to do with those who really neeed the help to press it on those who don't.

The surgery will not leave you incapacitated, though you will probably have dressings to be changed and/or stitches to come out - taking out stitches is NOT something to tackle on your own.

I am sure you will tell the hospital that you will manage.

annsixty Mon 18-May-15 11:20:20

ethel I wish you would start to see your glass half full instead of half empty all the time. Just accept the help you yourself want and politely refuse any you don't. All everyone is doing is to make you well.

Best wishes for your operation.

Mishap Mon 18-May-15 12:32:51

Play it by ear ethel - you do not know how you might feel after the op - you might be glad of the help. Nurses being friendly does not make them disrespectful - and it is normal practice now, both in hospital and out, for the nurse to ask you how you wish to be addressed.

I am sure that both doctors and nurses let their hair down when they are off duty and we should not begrudge them that.

I remember that you were very anxious indeed about your colonoscopy and whether that might hurt etc., but when it came to it you sailed through it. It may be that your current anxieties will be equally unfounded.

rosequartz Mon 18-May-15 12:43:31

Sorry but I cant accept that sort of behaviour which seems to be encouraged nowadays. I much prefer the old way of respect on both sides. am I the only one to think this

No, you're not the only one ethel.
I must say the nurses in hospital asked if they could call me by my christian name and told me theirs which seemed friendly but they were still professional.
However, I do remember one man complaining that, as the nurses tended to him, they chatted over the top of his head about their drunken antics the night before. He was their local MP.

I don't think the district nurse (if that is who comes in afterwards) will be nosing around to report back to the doctor. The doctor probably couldn't care less what sort of state or otherwise your house is in, as long as he/she can get through the front door if they need to. If the nurse is calling in afterwards it will just be for medical reasons I would think, eg if you have to have drain bags they will need to be changed, to check your wound is healing nicely etc.

Charleygirl Mon 18-May-15 13:17:04

ethel I would have given anything for a nurse to visit after my discharge following my ankle pinned and plated. I was using a zimmer frame because the operated leg was non weight bearing. I could not cope so a friend stayed for 5 weeks.

After my knee replacement, I had to do things differently- having meals and coffee in my kitchen because I was using crutches so could not carry much.

I am sure, in your own way, you will cope.

Ana Mon 18-May-15 15:07:58

No one came to my house after my two breast ops. I changed my own drain bags after the second one so that I could come home earlier, and just had an outpatient's appointment for wound-checking etc.

I think you may well be worrying unnecessarily, ethel.

jeanie99 Mon 18-May-15 15:08:59

It's impossible to know how one would feel in you situation but getting the best advice you can from your consultants so you can make an informed decision is the best way to go for starters.

Thinking positive and getting on with life away from the illness if you can, keep a journal, keep busy.

Life can be short and we have the make the most of every precious day we have.
flowers

annodomini Mon 18-May-15 15:39:40

After the hip replacement the district nurse came to give me anti-coagulant jabs in my stomach. Nice to see a friendly face and certainly not a nosy one. If there was a sign of infection, for example, I'd have been pleased for her to report back to the doctor. After the shoulder replacement, Social Services came in to see if I needed help/support, but when I discovered how much they were charging, I said 'No thanks' and took on a cleaning agency weekly until I was able to wield the vacuum myself.
Believe me, ethelt, nobody is spying on you - they have neither the time nor the inclination to do anything of the kind. They only have your best interests in mind.

Elegran Mon 18-May-15 15:51:49

As my granny would have said - "What makes you think that YOU are so interesting to them? You are not at the centre of their world" They have hundreds of patients, many of them with far worse problems than yours, who need a lot more of their attention. Concentrate on getting ready for your spell in hospital and recovering from the surgery, don't waste your time and energy worrying about what will probably never happen.

loopylou Mon 18-May-15 17:04:23

Spying is, I can assure you as a former District Nurse, the very last thing we did!
And despite some houses being indescribably dismal, I only once suggested to a patient that they might like to talk to someone-there was no electricity, water or toilet facilities, full of rats and cockroaches and the floorboards throughout had rotted through, so definitely a safety issue for patient and visitors.
Discharge planning does include asks how you think you will cope at home so you may like to think about how you'll get shopping, do laundry, change bed linen etc. and who you might ask to help (family, friends?)
None of this is 'being nosey ', just plain common sense to make sure you'll be safe at home.

Like Charleygirl I had a massively pinned/plated ankle with t'other cracked and was sent home with a frame and crutches. Luckily DH was around before and after work but I still had to work most things out for myself including getting up and downstairs on my bum! This went on for nearly 5 month hmm.

Good luck ethel, start thinking about how you'll do things when you get home and make some plans! You will be fine I'm sure smile

Galen Mon 18-May-15 19:35:04

I took my own stitches out!
I'd have been grateful if they'd assessed how much help I'd need before throwing me out of hospital when I dislocated my shoulder. As it was I had to book myself in to a nursing home for a few days.
Just be grateful for the attention you're getting.

Galen Mon 18-May-15 19:35:54

Ps
How many plillows you use can be an indicator of breathing problems!

Deedaa Mon 18-May-15 22:08:17

After my knees were done there was just a quick chat with an occupational therapist about how I would cope at home and I was given a frame with arms to go round the loo so I could sit down and get up easily. The only district nurse who ha shown any interest in our home was a friend of mine.

On one occasion when DH needed a blood test and was too ill to get out of bed I had a lot of trouble getting a nurse to come and do it, so I don't think they'll be outstaying their welcome!

Soutra Mon 18-May-15 22:36:52

It is 10.30 pm and DH who was discharged from hospital this evening is having his "bedtime" IV antibiotic from 2 lovely nurses. Intrusive? Nosey? No way! The fact that a service like this can be provided (3x a day) has meant that he can free up a hospital bed, coming home with a cannula which will also be checked on each visit.
It is quite probable that we are not their last call of the night, but I for one was happy to see them and am full of admiration.
Don't knock district or visiting nurses, ethel if you are lucky enough to get them.
Good luck with the op!flowers