Oh Dougie!  You really are in need of a hug aren't you.  

I'm not going to lecture you on being positive because I want you to get the negative stuff off your chest.  That's what this thread is all about after all and I know it's impossible to see the bright side every day when you're living with cancer.  It's impossible even when you're not!  I know you're not a natural moaner and pouring your heart out isn't easy but it is a good release for the frustration and anger that you feel and it's much better out than in.  I appreciate and admire your honesty.  I really do.

I had days like this with my mum, even in the early days, but we'd talk about it and be honest with each other about our feelings.  It was hard for me to talk to her about 'what if's'.  I didn't want her to think I was giving up on her and letting her down.  It must have been even harder for her to talk to me that way, she will have felt she was letting me down.  So we'd have the occasional 'no hope' days and we'd resort to tears.  Then we'd laugh at ourselves.  But the venting was a necessary release.  A mental shake and it did us good.

The difference is, you don't have a close relative to vent honestly with.  So do it on here and do it unapologetically and unashamedly.  Tell it how you feel it and don't ever look back and regret what you've written.  It takes a strong person to reveal their feelings and bare their soul.  You need to release the emotional pressure, so you can get back on an even mental keel.  Let the negative stuff out to make room for the positive.  

Oh dear.  I said no lectures today and look what I've done!   

I hope you rested overnight, although your posting times suggest you might have a sleep in this morning.  If wishes come true, you'll have a better day today.  I'm sending good vibes your way.  Look out for them!   X

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Thanks Jake, I have used Complan, but from a nutrient point of view, the dietician does not rate the product highly.

Can I refer you to post #292.

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Thats great that you have found something to get those cals etc in you. I love complan and use it when I am on a bulking cycle to get the extra calories in me.

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Caz, thankyou for an exceptionally kind and thoughtful post.

I recognise a lot of what you say from my own experiences with my mum during the last few months of her life. Talking can be such good therapy, and until I manage to get Macmillan on side, this thread is really my only outlet. My post last night was from the heart, and whilst I know the importance of remaining positive, the truth of my position right now was contained within those few words.

I am now beginning to recognise the devastating weight loss, my inability to do normal everyday things like walking any sort of distance, and the rapid downturn in my general well being. All of this started with the insertion of the stent, up until then, things were generally good, and living, though not particularly great, was more than manageable. 

Maybe, I will get some answers at my meeting with the consultant next week, but something needs to change, and quickly if I am to survive this ordeal. The downturn cannot go on forever.

Your investment in this thread is way more than anyone should have time for, and is far, far more than I would expect from anyone, including family, so I thank you from the bottom of my heart for that.

Please, please, don't give up on me yet, I am fighting, but coming from a long way back.

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Hang in there Dougie.

Hopefully the scan results will have some good news and the doctors will have some new ideas about how they can improve things for you.

The news Chemo regimen might offer some hope?

We'll all rooting for you anyway my friend. 

 

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Thankyou Gavin. The new chemo treatment depends largely on the results of yesterdays scan results, and whether my body is strong enough to accept the arduous process that chemo inflicts.

Keeping fingers crossed.

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Hopefully some nourishment will stay down and you'll be deemed strong enough to undergo that treatment Dougie, despite the weight loss. Keep the hopes high- I admire your ability to do that, even on your more rubbish-feeling days.

As for the stent- have you explained to the medics that it's made matters worse for you? What are the risks (rather than rules) they've attached to this? And to conclude my Inquisition (sorry Dougie!), is there someone independent- family or friend- outside of TWO that can support or offer useful advice on a day to day basis? 

Keep us posted, as you have.

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Thanks Bertie.

I am a firm believer in self analysis to try and understand what is going wrong from a health point of view. The clearness in my thinking over the last couple of weeks in particular, has somewhat been clouded by the constant nausea and sickness, but during the last couple of days, I have been able to process the thoughts I have for my situation. I have come to the conclusion that there is something fundamentally wrong in the stomach area. Whether this was caused by the insertion of the stent, or that the stent has moved, I don't know. I have not relayed this to the consultant yet, but will do at our next meeting. It may be that yesterdays scan could show the problem, for which I will get the results early next week. But who am I, I could be totally off the mark, but I am usually somewhere near the right track with my self analysis, so we will see.

Illness, like disabilities, is a remarkably alienating situation. I have not mentioned to too many many people outside of this forum of my recent experiences, but a lot of people, who I once thought of as friends, and know my situation, have just disappeared, no contact at all. Other residents from where I live (a retirement home) run in the opposite direction, if they see me on the staircase, or out in the street. It's strange how different folk react, and is very noticeable. I have two friends who have helped however, and they do what they can, but have busy lives of their own to lead, but they have at least been there during some of my darker moments.

I have now given up on trying to eat solids, so it's the nutrient drinks and soups for now, and hopefully I can build back some strength that I have lost, particularly over the last 14 days.

Thank you again for your interest, without this forum I would be lost.

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The one you talked about in post 292 that tasted like hot chocolate - did that give you a good boost and would it be expensive?

Also Dougie what about your family? Sorry that's a really prying question, don't feel you have to reply at all to this post, but are they doing more than the former 'friends'? At least, are you getting some company?

 

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Dougie, I think all of your posts are from the heart.  Sometimes you hold back a little, which is fine, but sometimes you tell it as it is, which is better.  Just because you're recognising things, doesn't mean you're not being positive, it means you're being realistic.  You can only deal with problems if you know what they are and being realistic and positive is the best combination!

My investment in this thread has paid dividends already if it's helped you and you don't need to plead with me because there is no way I'm giving up on you, so don't worry about that!  Where there's life, there's hope!  

However, (my posts wouldn't be the same without an if, a but or a however) I will feel much better when you've got Macmillan nurses to talk to, because I'm not medically qualified to give the advise and reassurances you really need.  But, (oh, here comes another) then I'll expect more updates from you because you'll have more to tell!  

Anyway there's no need to feel sick today because I'm feeling it for you.  Just a tummy bug in my case though. Now hubby's cooking steaks and expecting me to eat it!    

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First of all the nutrient supplement, it was sent to me by the dietician as a sample, just 5 packages, one chocolate, one banana, one strawberry, one vanilla, and one neutral. They all seemed to be quite nice, so hoping to be able to get more. There was no boost to energy levels, and I would not expect that in my state of health, and as with all these types of supplements, I would imagine them to be expensive, unless you can get them on prescription.

Family, I have a sister, who is disabled and lives miles away whom I have not seen in months, although we do keep in touch via the telephone. I never married, and although I had a live in girlfriend for many years, we never had children. She died some 15 years back, and I never had a need to find someone new.

The only person to come through my front door in the last 6 months has been the house manager, and all she wants to check is that I am still alive, so as you can see, I am very much on my own.

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Hi Dougie - sorry to hear things have been on a roller-coaster for you of late, you have my absolute sympathy for what you are going through. With regard to those that may or may not be coming through your front door, just remember that there's loads of us that have already come through the door and are here waiting to offer any support we can. You are perfectly entitled to now say "Get the fluff out of my house!".

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 Thanks Caz. Today has been a day of existence, more than of being a positive reality. The nausea has been more or less constant, with 3 bouts of sickness. To be honest, I now find myself looking forward to the sickness, as I get an hour or so relief from the nausea. This is not living!!!

Each new day now seems a further backward step in my general condition, and we need to find a solution. Hopefully the consultant will go part way to providing that next week. I may, after the consultation, cancel Tuesdays appointment, as I really don't feel well enough to attend. This would be the first time I have ever done so, so I have thought about it long and hard, but I really don't want to be pulled around, submitting to tests, answering questions and the like, the way I feel now. maybe if a solution can be found to the nausea I could attend at a later date. The title of the clinic is The Older Persons Assessment Clinic, which I honestly believe would be a total waste of my time, and what little energy I have left, right now.

I don't mind getting a telling off from you, as I probably deserve it most of the time. You have bought a new facet into my daily life, and thinking, which has been of great help to me, so carry on when you think it is necessary.

I hope that the steaks were not wasted on you tonight, and that you have got over the bug afflicting you. Oh, what I would give to eat a steak, but I would also make do with a toasted bacon and tomato sandwich. 

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Thanks Ben, there are many kind people on this forum, and have expressed support numerous times. It has been so heartening, and helpful, you would not believe.

It's up to the medical people now to do their bit, and I am hoping they come through with something exciting and beneficial, so that I can get back to enjoying life again.

The fact people are not lining up to come through the front door, does not worry me, in fact it's a very good guide as to how genuine people really are. When the chips are down, it's surprising how few "real" friends you actually have.

Thanks again.

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Oh, I'm fine now I've eaten.  The sickly feeling was probably worsened by doing  physical stuff, weeding mum's garden, and skipping meals, which  is not advisable.  So the steak is staying down. 

I think you are right to cancel Tuesday's appointment.  Your immediate health problems are far more urgent and the last thing you need is to be told to cut down on salt for the sake of your blood pressure etc.  So the Tuesday decision is a good one.  I will not be lecturing you on that!  You're prioritising skills are at least intact even if your digestive system is playing the fool.  

Can you pinpoint the time you started this nausea?  Was it after the stent procedure?  I'm wondering what extra medication they might have given you following that and if something isn't suiting you.  I'm not convinced the stent itself is the cause but I'm not a medic, so what do I know?  It's just that with my mum, I learned to think out of the box and not assume the obvious. 

As for people avoiding you.  They don't mean to be cruel.  They just don't know what to say to you.  We don't talk about illness such as cancer and it scares people because they don't understand it. We need to change that.  Your thread is a good start to helping people understand and open up.

Night night Dougie. Have a restful one followed by a new tomorrow. X 

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Thanks Caz, I will answer your question tomorrow.

Just to prove that I have not lost my marbles altogether, and in the style of the Two Ronnies,

"After another fun packed show, it's goodnight from her, and goodnight from me."

or something like that anyway.

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Morning Caz, I hope you feel rested after your busy day yesterday.

In answer to your question, no, I can't pinpoint the nausea to that event. I have suffered from nausea since the start of of my treatment, the chemotherapy does that to you, and even though that side of the treatment stopped some weeks back, the chemo properties take months to bleed out of the system - I still have very little feeling in my hands and feet from the nerve end damage.

The nausea became worse more or less as soon as I left hospital, a few days after the stent insertion, but has become more pronounced in the last fortnight, along with the sickness spells. As mentioned yesterday, I have ruled out any solid food from my diet, and some liquids are also hard to keep down. The nutritional drinks seem to be ok, but some soups are now presenting a problem. Overall, the problem seems to be getting slowly worse with time.

I have had to have a rethink re, Tuesday's appointment. My dear old friend, the catheter, is to be removed in the same clinic, when they will ascertain whether or not I need a new one, or get on with my life, without one. Maybe I can do a deal with them, and just have the catheter situation sorted out, but I suspect not, once they have you there.........

For the first time in what seems like weeks, I managed to get into bed last night, rather than sleep in my computer chair. Comfortable though the chair is, I needed to get horizontal to drain my legs of fluids - had a lot of trouble getting shoes and socks on yesterday due to excessive swelling. They look and feel a lot better this morning. The reason why I tend to sleep upright, is because I get pain from the stent, which is not conducive to sleeping properly.

Well, that's about it for now, I have covered a few points to give some general background information. It's a new day, and the sun is shinning. 

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Afternoon Dougie. Yes I'm rested thank you and I hope you are too.

I don't know what to think about your nausea and the fact your ant-sickness pills don't seem to have any effect.  I do hope you get it sorted soon. It's good that you're managing a little food and the nutri shakes to get some nurishment.  

My daughter's a nutritionist and her advice to keep mum's fluid retention to a minimum was to take more protein to increase the blood albumin levels.  Which is easier said than done, but if you could manage scrambled eggs, that might help a bit.  And every little helps - no, I don't work for Tesco!  

Ahh, your friend the catheter.  Yes of course the appointment on Tuesday will deal with that.  As for any other rigmarole and health advice they want to offer, I'd make it clear to them you're a cancer patient, so as they are not cancer nurses, there services might not be relevant.  You could ask them to refer you to Macmillan. I'm not sure whether they have that power but it's worth a try.

Hope you're having a 'not too bad' day!  Sending hugs, good vibes and smiles!    X. 

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Hey Dougie, good to see your spirits up even though youve had face up to some hard truths! I really hope you can find some real support aswell as us in this virtual world. Like Caz has said a hug would do you a world of good and the strength to keep fighting I'm sure. I keep fingers crossed that Tuesdays appointment will give you something in the way forward for your quality of life. You just gotta get through each day and you have so far. The strength you have shown to even turn up for this thread shows this. You haven't given up, and while you don't, we won't. Hope you rest easier tonight xx

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Some people with stents find they can sleep better in a recliner. Wedge can be used so as not too lay to flat. Don't whether this will help Dougie. May be they can issue you a wedge. Hope next week is better for you..  

 

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Thanks for the posts guy's, and the points, where relevant, I have taken on board.

Today has not been quite so bad as some of late. A little less in the way of nausea, which is always welcome, and only one incident involving sickness. This, I think, has been down to the strictly liquid diet, although I did add in a few sweeties to try to cheer myself up. They probably sent my blood sugar levels off the scale, but I don't care.

I also rearranged the plumbing of the catheter, somewhat belatedly, to facilitate having a decent bath, for which I feel a lot better. I also found a way of using the new short feed bags, not ideal, but I feel a lot cleaner for the effort. To boot, the new arrangement was hardly noticeable under my clothing, which is a bit of a bonus. It's probably all a little to late, as I hope to see the back of it on Tuesday, but in case this becomes an on-going situation, I am now prepared. Sores, under the original strapping had started to break out, which surprised me, after a relatively short time, so my leg is on the mend now.

Water retention is not normally a problem, but has been over the last couple of days, so I must again get my leg elevated tonight, to enable getting my shoes on tomorrow. I won't chance going to bed, but will elect to sleep in my arm chair, with my leg supported and higher than my body. There is always a way to do these things, and I suppose that not going to bed for over two weeks, has allowed the retention to form. It may also take a few days to clear.

Well, today (Monday) could be quite a big day, and I am hoping to find the reason for all this sickness etc. If not, I am going to be bitterly disappointed, but at least I should be able to make contact with Macmillans, and I am sure that they will give me some good guidance, perhaps not straight away, but in the future.

A new experience for this illness has reared up over the last few days, that of hiccups. They get quite bad at times, and I have no idea what has brought them on. As I have said previously, a new day brings a new problem, not that the condition is hazardous to health (I hope), but it is a very annoying addition.

I had a long and hearty phone call from my sister tonight, as she did not know of the latest developments, and she kindly suggested that maybe I should go and live with them. It's worth some thought, but I don't think it's do-able. The main reasons being that I don't get on with her husband, and the travelling from Crowborough East Sussex, where she lives, would be a nightmare, and even more expensive. Maybe one for the future, if things get worse.

Thanks all for your interest, and I hope to be able to offer up some good news for a change, sometime tonight. Have a good day.

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Morning Dougie. Hope you had a bit of rest during the night.  

Once you get Macmillan on board they'll sort out and supply all the equipment you need to make life more comfortable. They have occupational therapists who assess your needs even things you won't have thought of can help.  

Maybe you should consider your sister's offer.  Perhaps it's time to put your differences with her husband to rest.  The practicalities and logistics can be overcome and Macmillan can help with that too.

Here's hoping for some more positive developments today. Good luck!    X

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This post will be very brief. I am still trying to process all the information received this afternoon, suffice to say, it was devastating.

I will try to update the situation over the next day or so, once I have worked through the implications.

I don't think there will be any more from me tonight, sorry.

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Oh Dougie!  I truly am so sorry!      

Try to rest if you can. Don't try to process anything but gripe away on here if you feel like it.  Sometimes writing things down helps, even if it doesn't appear to make sense.  

I'm thinking about you and holding your hand. XX 

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Really sorry and sad to read your post Dougie.  

Difficult to offer much help but I would say not to worry yourself into a state over whatever you've been told. I know that's so much easier said than done, especially if you've got nobody with whom you can talk it through.

Hoping things look a bit brighter in the morning.

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