You could try quoting some laws or regulations- even traffic laws!

Nursing without due care and attention

Caring under the influence of a neglectful attitude

Failure to stop at the scene of a serious illness

Failure to present appropriate qualifications, experience or attitude

U-turning in a prohibited situation

Exiting a medical case in excess of the speed limit

Refusing to aid the unwell in the course of their recovery

Failure to stop at a red-light condition

 

 

I hope the flippancy doesn't offend, Dougie!

More seriously though: I understand that safeguarding laws don't only apply to children and young people: they apply to the elderly, infirm, sick, and anybody whose well-being is compromised by vulnerability. I sometimes find that the very mention of the word safeguarding kick-starts some action. Safeguarding covers various forms of abuse, including neglect. It's a bit of a trump card to pull, but if ever there was a more deserving scenario...

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Hi Bertie, on another day I would see the intended humour of your post. It certainly did not offend.

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Finally, at 16.50 I got a call back from Guy's, but not from the person I was expecting. It did go part way to dealing with my immediate problem however, but it's a bit too little, and far too late to be of any help.

As stated elsewhere in this thread, I have what is virtually an all day appointment at Guy's tomorrow. This is followed up by a meeting with the consultant on Monday, mainly to get the results of tomorrows tests. This all being well is followed by a chemotherapy session on Thursday, usually takes around 4 hours. Now they want me to attend for a 9.30 appointment on Tuesday, to remove the catheter!!!!!!!!!

On top of this I will attend what they term the Gold Clinic. Here they will do tests specifically designed for senior citizens, and the problems encountered by virtue of age. If I am unable to pee on my own, they will fit a new catheter, with whatever that entails. This they warned me is an all day appointment.

I tried to explain to this person that all this was too much for me, and although sympathetic did nothing to help the situation. I am no longer able to get to and from the hospital by public transport, and have had to resort to taxi's, at £60 a throw, which if a long appointment means two, so £120 a day. Although I have a little bit of money behind me, I can't support this for too long, with expenditure far exceeding income. The answer of course for periods like this would be to be admitted into hospital, for a few days at a time, but there is a bed shortage.

Anyway, thankyou Nurse Alex for doing such a wonderful job, we WILL have words tomorrow.

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Sorry Dougie; I realise I didn't take into account how you were feeling- I do know that all the traumas you are experiencing leaves you with better and not-so-good times. The cost of getting to and fro is horrendous! Can no-one locally- neighbours or friends- support you with this? I know I'm grateful that my dad (recent hip replacement) has caring friends locally, so he's never really stuck, even though he lives 80 miles away from us. He'll be able to drive again hopefully in a few weeks but it's comforting to know there are people on the ground who can help.

 

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Right Dougie! It's time to kick ass!  When you see your consultant tomorrow, you tell him these 'minor' details are causing you 'major' stress.  Lay it on the line. Do not put up with this any longer!  Ask them to put you in touch with your local Macmillan team straight away so you at least have support and continuation of some kind.  

I've googled 'Macmillan nurses sidcup' and found your local centre is the Dimbleby support centre, Guys cancer at Queen Mary's Hospital.  Ask your consultant to refer you.  If you're not already getting attendance allowance, they should be able to get it for you immediately without you having to fill in the forms.  That will help with finances and they should be able to advise you of any voluntary drivers available for hospital transport.  You shouldn't have to foot the bill alone.  

Macmillan are specialists and have experienced all of this before.  They understand and can pull strings when needed.  They give moral and emotional support, as well as medical and can advise on anything that concerns you.  Get them on board!  

Lecture over!

Good luck with everything tomorrow.  I'll be thinking about you.  X 

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Aw Dougie I hope that someone can help you at Guys and I hope that someone can get you more support, you certainly need it right now! Keep smiling and will check in tomorrow to see how you got on xx

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As if Dougie and myself havn`t got enough problems, another one cropped up yesterday. We got a phone call from the care home where the wife`s mum is a resident. She had got up out of her chair and fallen, then found she couldn`t move her left leg. An ambulance took her to Macclesfield hospital and we followed later.

After x-rays etc it revealed she had broken her hip, and she is to have an operation, probably tomorrow. As she is 92 we are worried about how she wil cope with an operation at that age.

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Only just seen this thread after not posting much on here lately. Good luck Dougie & Eric! hope all goes well for both of your circumstances! 

Alan.

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Hi Carol, I now feel suitably told off after your post, and I am feeling really guilty for all you are doing for me, way beyond the call of internet friendship. It helps I suppose that you have previous experience from lessons learnt with dealing with your Mums situation, and this will point me in the right direction. I am not of clear mind right now, I call people the wrong name, silly things like that, and it takes me forever to construct a post for this thread, with many rewrites.

I am aware of the Dimbleby Centre at Queen Mary's Hospital, it all part of a new cancer wing, which has not officially opened yet, and I have tried to get a transfer there for the chemotherapy sessions, but they are only a small but never the less important part of the treatment that I receive. All other medical dealings would have to remain at Guy's. which is the hub of all the cancer units in SE London. I did not however know that Macmillan's also operated from there, so that's good to learn. I also found out that the palliative care teams operate from Hospices, so there may be something fairly close, although Googleing did not bring up anything in the area.

I have just had a bout of sickness, although there was very little to come out, so I guess the new anti sickness are not as good as I hoped they would be. I am not seeing the doctors tomorrow. I will be receiving a two hour hydration session via a cannula, followed by a detailed CT scan, and then a further two hours hydration to finish off, so with all the waiting as well, it's going to be a long day.

Will post when I get home.

To all of you who have wished me well today, I thank you, it means a lot.

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Good luck for today Dougie.  Whether you see a doctor or not, ask about Macmillan.  They will give you the support and palliative care you need in addition to your medical needs.  

Thinking of you!  X

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Thanks Caz, good advice.

Another week over at work, I hope you are getting used to be being back.

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I hope things go well today (and as Caz says remember to ask about Macmillan). Don't be worried about complaining about anything.

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 Thats why I asked him if he was getting any support from them as they can do lot. Advise, advocate and provide emotional support.

 

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I do hope Dougie has some good news.  

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Yes, Caz, absolutely.

I wonder if he will be too exhausted by his day to post tonight but hopefully he will have some better news.

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OK folks, been home for about 30 mins, after a full and very exhausting day, 8 hours in all, at the hospital. No sooner was I indoors when the sickness experienced all day took over, glad I was home when it happened.

I was unable to contact Macmillans, as by the time I finished the treatment, they had packed up and gone home. I am sorry, because I feel I have let you down in this respect, but it was impossible to try to do anything about it sooner, but I promise it will be my first port of call when I attend again on Monday

Feeling very tired at the moment, so will shut my eyes for a while, but hope to be around later this evening.

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Good to hear from you Dougie and good that you recognise the most sensible thing to do for now is rest.

Sorry to hear you didn't get to see Macmillan's but it sounds like you've had enough for one day, so you're almost forgiven.  

 

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Thanks Caz, yes rest is definately needed now. Hopefully more from me, later.

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Aw hope you feel a bit stronger soon, sounds like another rough day for you. Hope you can rest now you are back home for a bit xx

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If you are living in sheltered housing then perhaps the warden can contact Macmillan nurses . That may be easier.

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As far as I understand, a doctor or nurse has to refer you to Macmillan.  I'm not sure a warden counts as they wouldn't have access to Dougie's medical records. It might work but the shortest and quickest route would certainly be through a medical practitioner on your care team.  

I'm surprised nobody has referred you Dougie.  My mum was referred to Macmillan as soon as she was diagnosed.  They contacted us within a few days and came out to see us to assess my mum's circumstances.  We didn't need them at that time but they left on the understanding we'd contact them when we did.  

It was 18 months later that I rang them and they acted immediately.  Their support was invaluable on every level, so I know you'll benefit Dougie.  They don't do anything medical, they assess and liaise with your medical team to get things moving and they support your physical and emotional needs.  They're experts in living with cancer and they think of things that haven't crossed your mind.  They make life easier!

I'm waffling and bossing again.  

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Past history of this illness has become clouded in my mind, and to be honest, I don't now recall what has been offered, and what has not. I do know that in the early days of treatment, compared with today, I felt well, and did not consider help as being advantageous or necessary. Unfortunately, since then, a stent has been introduced into the equation. This has been the single most catastrophic form of treatment I have received. I fought against it long and hard as to whether it was absolutely necessary, but it seems you don't actually have a choice, once the powers that be decide it's the only way forward. This brings us to the the very beginnings of this thread.

There is no doubt in my mind that the few weeks since the stent insertion, I have gone further backwards in my well being, than in the whole of the previous 6 months of treatment, I have lost most weight during this time, I rarely get a day without sickness, I have no appetite for food or drink, and my mental level has gone into reverse, big time. I am also now aware that unless this trend is reversed, and soon, I will not survive to see Christmas. This is not being melodramatic - this is being realistic. I now weigh less than when I was a 10 year old!

The only way I can see surviving this, would be to have the stent removed, but I don't think this is possible. The results from today's tests and scan will be interesting, and may offer some hope for the future, but I suspect, only judging by the way I feel, they will not be encouraging.

I have not lost the will to live, but it's hard to justify unless there is some quality to life. Right now there is non, I am surviving from day to day, and hoping.

Sorry to be so negative, but these are very negative days.

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Keep at small portions, Dougie,
Think we are gonna' have to put you on a tapas diet?.
Could be interesting Doug?.

A few small bits and pieces with lots of flavour to satisfy the hunger through the day.Your body and mind will feel better if you get the grub in.Even if it's in small bits and pieces.Think of your fav foods and eat small mixed portions through the day.

I ain't no doctor Doug,but that's the best I can come up with for now.

Truly wishing you the best.Not soppy.btw.

Now, Get the fcuk back up on that fcuking horse and drink your milk eat your oats.Or else we will kick your ass.

You think a stent is bad news??????.Do as above and quit your bellyachin' if you really know whats's good for ye.

Don't wanna send Matty over to give ye a few slapps,

Do we?

Thanks for the post Tony, plenty to ponder on there.

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Dougie just a quickie. I hope things are improving. Are you using complan? Its a powder comes in various flavoursyou add to water but milk is better its packed with vitamins etc and calories which is something your body may need to assist with healing, you can get it prescribed by your gp or buy it if you buy its about |£3 for four sachets. 

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