For people having an ileostomy or colostomy or living with a stoma. Support each...
A support group for patients with Lynch syndrome (also known as Hereditary Non-polyposis...
I don't know what I'm getting other than an anterior resection because the tumour is in my rectum. They are fairly cagey other than to keep telling me I'll be out in 4 days.
Actually my mothers' hobby is having me do her garden for her, its considered the daughters duty to look after the parents in whatever way they demand, I also do her housework carpet cleaning and routine finances.She would not agree to me 'adapting'.
As for her needs yes really she needs somebody to help either with the garden or with the house, I've taken up the slack as she does less but that means that some days I don't stop until the light fails. I have broached the subject with her and she point blank refuses. She has had my name down as carer ever since my husband became a contractor and employed me to do the admin, I like being outside (despite loving my IT work) so I'd do as much admin as possible after dark, and because I've always been made to feel that I have look after parents I'd take her shopping and it grew from there. When my husband died she said I needed go get out - shopping. I actually don't like wandering around shops, if I want something I go straight to it and out - I visited Ikea it was a Nightmare! Now its my job, and like the servants in the last century I get 1 day a week off which in a way is ironic because her mother, who she didn't like, actually was one of those servants!
I agree cancer makes you re-evaluate things, with hindsight my husband and I would have worked less and enjoyed more. Once he died I was in something of a prison I had various authorities threatening me, DWP for their mistakes, HMRC for a debt they said he owed. And when I reached out for help I found none, It has taken nearly 8 years for any help and that is limited. As for 'your cancer centre' do you mean the unit where you receive treatment because here it is under staffed, under provisioned and over used. Or there is a charity run shop that offers alternative therapy and cancer chat which in in the centre of town, great for the majority but for use villagers the parking is the proverbial pound of flesh. In fact most of the medical services expect you to arrive by public transport - because they want to be green and they have to provide miles of parking for staff it just doesn't really work if you've got to walk 4 miles to get a bus to do the other 4.
In which town and LHA do you live? The people on here are very good at focusing on available resources. In Liverpool most cancer patients are treated as part of the general hospital, apart from the Linda Mccartney centre for breast and the Roy Castle for lung. It is unusual to have a dedicated unit. Your description of 'under staffed, under provisioned and over used' is an accurate description of much of the NHS, a situation that will probably not improve in the near future.
Are you getting any additional support on coping with the actual operation and your social anxiety?
You do have some well constructed barriers to resist change . But have you thought that whilst you are in hospital change will have already occurred for that duration. It may be possible to build on it , broaden it out . Speak to your brother . Being a good daughter in my mind is not doing every possible task for my mum , although I do many as my dad has a stroke , but supporting where possible . It is perfectly ok to carve out some joy in life for yourself . In fact I think it makes you a better carer / daughter as you have balance . It sounds to me as though you actually would like that .
As Mike stated the NHS is not within our control to change within the required timescales . What about looking at how you can make your stay more tolerable. How can you entertain yourself ? Will your brother visit or your nieces ?
Just a thought .
I also know it’s Scary when you have being doing something for so long to bring about change . But you never know there may be some positive surprises in there too .
I live near Basingstoke, we don't have LHAs we have CCGs a group of overworked GPs having to go to meetings rather than see patients. The CCG covers a large number of disparate practices spread over the north of Hampshire. Services are really piecemeal and come from all over the county. Radiotherapy for instance is delivered in Southampton or if you make enough fuss Reading. When my mother needed radiotherapy the plan was that they would pick her up at 8 and eventually arrive at Southampton, the transport would not leave until 5 and as we are near the county boundary she would have been the last off. A marathon day for a 75 year old, some serious agitation with the GP got her a referral to Reading 10 miles away and only about a half day including the roundabout route of patient transport.
Unfortunately her records had more of a struggle to make that journey when the treatment finished.
It isn't a dedicated cancer unit it also covers haemotology, I've spent many hours leaning against walls there with either my husband or my mother who had a haematological condition. Considering how much of the old wards hospital are used for storage it makes me wonder why they can't spread out a bit and give everybody a bit more space. It's really horrible in the summer because the waiting room has massive windows facing south and the whole hospital is fairly stuffy. The windows can't be opened much elf and safety.
Ha ha ha!
I went to the local NHS mental health centre, appointment's there are like rocking horse poo according to my work coach. After a two hour assessment they said there were no services they could offer me as I was about to start cancer treatment. They had no other contacts to offer me!
As for my brother he really has no time for people with mental health problems even though his son is bipolar. He considers that his teenage years were blighted but having a mad sister and he actually begged my parents to get me committed. He will reluctantly take on some of the things I do for mother but he's off at the end of august because he's a non dom and he really came here for a holiday and to help the inlaws (money and power there).
Oh and my mum didn't forgive me for not visiting my father when he was in a home. But apart from having my dying husband to look after I couldn't bear to see him, as I said before he has a bleed on the brain the same time my husband was in for surgery. He started to make a recovery but then he would have more small bleeds, I was the one talking to the doctors and my mother just kept telling him he was being difficult. I watched as little pieces were lost, he had to sign a declaration and when he didn't do it quickly my mother accused him of being tight and selfish. Eventually she went off to chat to another patient. I said to him does this just look like a load od squiggles and he said yes so I read it to him slowly so that he could understand. When she came back it was signed and again she was angry because he had signed it for me. Unfortunately he had other bleeds that robbed him of all his control. So I simply could not bear to sit by somebody who was a prisoner in their own body, I personally would have preferred that he had died before they moved him to the care home but he lived a vear longer than my husband
Wow - I've looked at the latest NHS audit for Bowel Cancer in the UK - Basingstoke figures are very positive, a great deal lower than around here, and treatment rates are equally favourable; you can take some solace there. It seems B'stoke has a much more coordinated approach to colorectal disease than alot of the UK. This doesn't minimise the impact of diagnosis but it means treatment pathways seem more complete than most areas; one striking anomaly though - no women surgeons.
Professor Heald worked here, I think he developed the TME technique at Basingstoke so there is a certain kudos. No we are quite backward, although we do have Fenella Welsh who is a consultant Hepatobiliary surgeon. The GP practices are full of women, in fact it can be hard for a bloke to see a bloke!
No their record might be good but that doesn't really offset the experience I've had with them or the fact that they don't offer any mental or emotional support, I can't even find out where PALS is they say they have one but when you try to locate it you are directed to their HIP and I've been there the woman said 'you know someone thats had cancer, oh well I expect you know everything, there's nothing these leaflets can tell you'
I'd like to have someone to confide in, to direct me to any help I can get because the hospital isn't going to do it and the mental health service isn't going to do it and the local Mind is in chaos. This is where I need a sister but my mother failed to provide me with one.
Are these any good or too far?
Rather too far, although at the moment I drive, its something I have to do so I only go about 10 miles which just about covers shops, hospital, dentist, GP and all that. Basingstoke hospital actually direct you to them. I really don't know how they expect to drop in at Cosham which would be nearest. A lot of the people don't have massive disposable incomes (this is warehouse city) its not like they can get a bus to go there and Taxi's like round numbers "Reading mate? 50 quid" or about £5/mile. I have looked for help but its seems a lot is aimed at chemo patients.
I am actually terrified at the prospect of being tied to a bed by tubes with strangers all around. I can see it's going to be a panic fest all the way and probably the more panicky I get the more I'll try to get away. Last time they tied me to a bed with tubes they had to put me in a little room so I didn't upset the other patients.
Pre-op assessment is Monday so maybe I'll get some time then as they allocate 2 hours but I suspect most of that will be in X-ray and phlebotomy, they have nightmarish queues. They tell you to bring a bottle of water which is probably for the wait in phlebotomy its in a blind corridor with no windows and like the rest of the hospital no air-con you can bake even in the winter!
So, pretty op assessment yesterday and to my surprise I didn't spend hour in a corridor waiting. I spent it mostly with my clinical nurse specialist, I also had a visit from the surgeon who assured me consent could be withdrawn even at the eleventh hour. That was reassuring because it made me feel less hemmed in. Helen, the specialist nurse took each of my questions and we discussed them thoroughly.
She then introduced me to one of the stoma nurses and we went through having a stoma and as she said knowing about it is only half the step, having and feeling this thing on your stomach can be as much of a shock. I'm hoping I won't need one but I'm trying to be prepared, I used to help my husband with his. He struggled because he has pale delicate skin and it would react to all kinds of chemicals, so I've seen one and how it behaves but I know having one will be quite different.
The doctor who came to listen to my chest was quite new to her job so she went through the form with a finetoothed comb. Every question I gave a qualified answer to she went into depth, for example my generation was vaccinated against TB and modern ones arent so lots of questions about that.
The whole thing took 3.5 hours and I came away with an armful of samples.
It was reassuring that they understood my mental health problems and would accommodate it as best they could on the day.
And on the converse side I told them to dope me to the eyeballs to deal with my anxiety.
I know I will start getting jitters when I start the bowel prep but who doesn't, it's going to change my life whatever the outcome I will not be the same person.
And I will admit to a bit of "why me" not so much because I've got cancer but that it has happened now when I had just been moved up to 5 year screening and because I was beginning to get some kind of a life.
But my experience has worried my brother who is on 3yr screening because he has polyps. I have a T2 tumour after 4 years he could find he has cancer at his next screening.
Nietzche said "That which does not kill us makes us stronger"
Oh stuff Nietzche what does he know
Sounds a positive experience. So glad they were supportive . That’s very encouraging for you.
Big step in a good direction .
Glad to hear appointment wasn't too arduous.
Post op day 5, well I know the hospital like to refer to it as, day 6 but as it's 7.10 in the morning and and though I was supposed to be laying there counting back from 5 the anaesthetic was having an important meeting. So having arrived before 7am as they instructed I was just about to leave, bag and all when I ran into the aforementioned anaesthetist trying get herself and her long fluffy hair into the room.
Are you xxxx? It wasn't difficult I have a really girly given name and the other person in the room was a bloke.
It's half eight I said I can't stand being left hanging around waiting .
Come on how many of you want to sit in the admissions room waiting, having seen your own name on the board first for a 7am start for an hour and a half extra and haven't thought $$$ I going.
So anaesthetist says no its all fine now, I just go change...well I didn't need to I was going to walk out in the gown!
Any she sent her mate to make sure I didn't do a runner. And you know all that stuff that through anaesthetist is supposed to ask and do before the op no didn't happen.
Premed? No it was just follow me and I was trotted into the theatre area of the floor and got to see it in detail. Then on the trolley stab stab breath this and by 9 things were on course.
I was told the surgeon was well pissed at her late appearance, I mean he might be the star of the Opera but he's at the mercy of some of his fellow performers.
And maybe if she'd done her job properly then maybe I wouldn't have spent 7 hours in recovery - I don't remember anything other than waking enough to say either I want to be sick/I feel sick. I do know I didn't arrive at the ward until after dark because my bed was by the window.
And anaesthetist was probably quaffing a glass and moaning how hard her day had been and how no one appreciate's her. Well anaesthetist your slab of Deadmeat here would appreciate better time keeping if we ever meet again!
Great to hear your through safely . That’s good news . You must be relieved. Sounds as though they had you knocked out pretty quickly !!
Hope your recovery is going well ,
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