Model Boat Mayhem
Mess Deck: General Section => Chit-Chat => Topic started by: Plastic - RIP on November 11, 2020, 12:14:30 pm
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Hi All
I'm hoping that our combined life experience on this forum can give me some reassurance.
I'm starting my chemo on the 20th and I'm genuinely terrified. <:( Most times, going to hospital means they make you feel better - whereas I'm understanding this will make me feel awful. Possibly much worse than I feel now. It's once every 3 weeks but as it's personal to everybody, there's no really accurate data for what it's going to be like for *me*. It's Oxaliplatin and Capecitabine.
Has anyone know anyone who's gone through this? How rough was the journey?
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I can only go by my dad’s experience from 20+ years ago and he had a different type of chemotherapy for his bladder cancer treatment- he had live TB virus injected directly into his bladder and then washed out- he looked dreadful from it and he felt awful for the evening afterwards. He had it once a week for 12 weeks and in his case it didn’t work- it came back so they zapped with radiotherapy which he said was much more pleasant experience as it made you feel fantastic but shortens your life expectancy.
As you say experiences vary depending on where and how they administer the chemotherapy but keep your spirits up and your family close for support. My Dad was lucky that they found his cancer when they did because most bladder cancer cases are in men aged 70+, my Dad was in his late forties when he started to suffer from the effects. We still don’t know what caused it either as it mainly affects people in the car paint industry.
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Thanks for that - mine will be pills twice a day and the 3-weekly infusion. I'd guess the worst will be after the jab - either immediately or within a couple of days as it goes to work. I've retained a load of fluid in the stomach area so it's really hard to force food down - I have the appetite but can only manage a mouthful and it just won't go down. It's all too many data channels to monitor - weight, pain levels, sleep, appetite, calorie input, fluid input, muscle tone, energy levels etc. to try to plot a general health measurement. I've got a maternity sling to help support the weight of my 'fluid-baby' {-)
I actually 'feel' ok right now so I'm just going to carry on pottering about and seeing friends. I'll take a Hi-Viz and a hammer because I can, as a tradesman, go where I like. :-))
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Hi,my chemo was cisplatin and etoposide on a 21 day cycle. Etoposide orally twice a day day 2&3 only
The infusion on the 3 weekly cycle.
You will probably have antibiotics also.
I luckily had no bad side effects apart from feeling tired in the afternoons. I did loose all my hair and beard though.
It has since grown back.
You must drink at least 3 ltr of fluids a day for a couple of days to help flush the chemo from your body
The nurses were great and explained everything about the treatments to me.
That was 6 years ago.
Due to the pandemic I have not been able to go for my final c o t scan that will hopefully be clear.
I had stage 2 lung cancer.
John
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Hi John - thanks for that - good luck for the all clear!!!
Mine's very terminal but this treatment could buy me some time.
I've got all the paperwork through and the nurse will be speaking to me a couple of times before next Friday and the oncologist will speak with me too.
I'm just having a brain overload at all the information - I want to know - but I also *don't* want to know - it's making me feel sick with the worry. I'd guess it's the same anxiety that everyone goes through during the run up, but it only becomes *real* when you're the one in the hot-seat.
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Mine's very terminal but this treatment could buy me some time.
That's very sad news, I hope you get a good lot of time from the treatment plastic. Take care
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Sorry to hear you need chemo.
I have had Prostate cancer since 2000 and various treatments for it.
The first thing to remember is that what suits one person does not always suit another and my experience is that if one treatment does not help or causes too many side effects then ask for alternatives.
I had one lot in 2016 and it was awful and useless. The next treatment worked really well for 3 years and then lost its effectiveness. I am currently on what will probably be my last treatment, a trial of immunotherepy and a breast cancer chemo.
DO NOT LOOSE HEART. Your treatment may be the answer and there are new treatments coming which may be even better
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p.s.
Don't be frightened by the lists of side effects that the hospital gives you or you read on various web sites. The hospital is obliged, at least over here, to tell you all the things that 'might' happen.
Diarrhea and constipation can be controlled to a reasonable level with simple drugs, so can nausea and vomiting with common prescription drugs. They are unpleasant but I can live with mine. I also have a supply of "men's nappies" just in case. :embarrassed:
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That's very sad news, I hope you get a good lot of time from the treatment plastic. Take care
Thanks - they say if all goes well, they may buy me 18 months - maybe 2 years
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Sorry to hear you need chemo.
I have had Prostate cancer since 2000 and various treatments for it.
The first thing to remember is that what suits one person does not always suit another and my experience is that if one treatment does not help or causes too many side effects then ask for alternatives.
I had one lot in 2016 and it was awful and useless. The next treatment worked really well for 3 years and then lost its effectiveness. I am currently on what will probably be my last treatment, a trial of immunotherepy and a breast cancer chemo.
DO NOT LOOSE HEART. Your treatment may be the answer and there are new treatments coming which may be even better
That's what I'm worried about - my worst worry is my first treatment is on a Friday so I'm concerned about weekend support if things go wrong. I'm also worried that if the side effects are too bad, when does being alive *not* equal living?
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p.s.
Don't be frightened by the lists of side effects that the hospital gives you or you read on various web sites. The hospital is obliged, at least over here, to tell you all the things that 'might' happen.
Diarrhea and constipation can be controlled to a reasonable level with simple drugs, so can nausea and vomiting with common prescription drugs. They are unpleasant but I can live with mine. I also have a supply of "men's nappies" just in case. :embarrassed:
Unfortunately, I seem to be one of those people who has all the rarest and worst side effects to lots of meds. I'm also concerned that if I can't eat or keep food down then I'm on a very slippery slope. I'm sleeping downstairs now and I have a bathroom within 10 feet. I'm 90kg now but that could drop away leaving me with a more difficult path to any kind of capability recovery / quality of life. I'm already as weak as a kitten. And as I'm typing this at 01:47, sleep is clearly a problem too. %)
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I know that we are no supposed to mention religion on this site but I am praying for you, for God to ease your suffering and help you through the difficult times that you and your family are going through.
I presume you are having chemo in hospital. Mine has a 24 hour help line that I can ring. Even if the oncologist is not on duty the specialist nurses know almost as much.
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Thankyou for your prayers - at times like this I'll take any help from anyone. :-))
I'm having the first few appointments in the hospital but I have the option of having it at home when it's underway. I'm not sure which way to go yet - I understand that we're all done in one large room together (distanced) so there's people to chat to in a similar position. That could either be simulating and uplifting or terribly sad to get to know people who may not be at the next session. <:(
Having it at home could be much more convenient - I get to sit in a comfy chair with the tv and internet while the infusion takes its time. It also means I don't have to have a covid test before each session and my wife gets the ability to pop into work (she's in the care sector so every time she comes to an appointment with me, it resets the 2-week exclusion for her.)
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Have it at home if possible. One is at quite a distance in hospital to avoid cross infection and to allow space for the equipment
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Having it at home could be much more convenient - I get to sit in a comfy chair with the tv and internet while the infusion takes its time. It also means I don't have to have a covid test before each session and my wife gets the ability to pop into work (she's in the care sector so every time she comes to an appointment with me, it resets the 2-week exclusion for her.)
I think the 'at home' option is the best. If you're in room full of others and you want to take a nap for example that wont happen. At home you have everything where you want it and, as you said, you're not affecting your wife's routine either.
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The at home/hospital is, for me, driven by fear of the unknown. The "what happens if things go wrong?" scenario - one is in a place with doctors & nurses and all sorts of specialist equipment - the other is my living room. The problem is I have so many unresolvable unknowns and scenarios rattling around inside my head that I'm getting very overloaded/overwhelmed. Is my judgement being impaired and will I make emotional decisions over sensible ones. :((
There's also the little devil on my shoulder asking me why I'm bothering - why extend the misery and stress - just give in and let go - get it over and done with.
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I find it hard to imagine what you are feeling but I went through something similar with my father.
It seems to me that if you have had the initial experience of the treatment in hospital, with all the back up, and it went well then I would be prepared, probably relieved and indeed pleased, to continue the treatment at home.
The little demon on your back surely needs more experience of the treatment before you can seriously entertain such thoughts. Whilst I am not one of those who advocate extending life beyond anything else I do advocate extending life that is still worth living. The chemo might well be a lot less awful than your mind can imagine. I hope, and expect, that it is.
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I agree
The little demon is only there because I'm so stressed and fearful.
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Stay strong, my experience of the Chemo ward is to sit with someone whilst they have their regular treatment, what I have seen is a camaraderie their on the ward, I see people sharing the hard times, but most of all I see hope and I see joy as they make the most of the time; they tell me life is not a rehearsal so go out and live it, I take inspiration from the proud, calm way they face the challenges life itself is throwing at them. So much respect for the honest and open way you are conducting yourself and for sharing with us your journey. I wish you well, you are brave and an inspiration.
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Thankyou. I'll see what the hospital experience is like - I'm just concerned that everyone will be so 'safely distanced' from each other that communication will be impossible. I like to chat with people but if it's not going to work due to covid, I'd rather be at home.
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Whilst things are different under Covid, what is the same is that you will be with other people treading the same path, think of it as a club, you will be able to say and share things with other members of that club that no one else will be able to understand - unless that is they have trod the same path.
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Whilst things are different under Covid, what is the same is that you will be with other people treading the same path, think of it as a club, you will be able to say and share things with other members of that club that no one else will be able to understand - unless that is they have trod the same path.
That's really what I was hoping for - but I'll see the reality next week. It's weird to be in this position - The only 'known' data is that I'm going to die - everything else is all possibly's and maybe's. It's also annoying that it's this wet & cold & miserable time of the year and that Boris is still farting about with us all. I have better things to do.
This is us last week meeting a wild wolf pack and taking one for a walk in the countryside.
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I keep laughing at the Jokes and humour posts. %%
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Hi and sorry for this long post but not sure if this helps but I can offer the following as I am pretty much caring for my Mum going through chemo at the moment…
Towards the tail-end of lock-down she ended up at the doctors and long story short it ended up colon cancer plus after a somewhat never ending set of 'oscopy's from both directions, MRI’s and various types of CAT scans it spread to 2 tumours on the liver also. Finally confirmed stage 4, but believe so far there is a curative path. We were told to expect chemo (3months, bi-monthly) then another CAT scan before decision on (likely) another 3 months chemo, then probably radiotherapy and pretty much for sure colon surgery with a hysterectomy at same time, then now 50/50 possibly also a second set of surgeries to remove as much of the liver as needed.
She is on 3 IV treatments through a PIC line, plus a there is a 4th chemical thrown in for good measure (I don't have my notes handy for the chemicls). She is also on a course of steroids and as much anti-sickness pills as need (might be some other tablets, can’t remember). She has nurses round every Thursdays to service the PICC line, take blood every second week just before chemo every second Friday, she spends most of the day on pumps in the hospital then comes home with a little bladder of the final chemical in a bum bag which is disconnected at home by the nurse on the Sunday.
Some good news so far though after 2 treatments and 3rd one next week) which I’d say is hope for anyone going through this:
- After 3-4 months going round in circles of tests and chacks, our local hospital in Larbert have been really good. There is a Macmillan nurse she’s talked with which has helped allot and she’s been there at consultations also. I personally am NOT happy anywhere near a doctor (nevermind a dentist!) but going in and out with her I am quite surprised how comforting everyone has been
- We were told that my Mum’s constant desperate trips to the toilet would NOT END with the chemo -it’s not there to sort that. This has NOT been the case so far, and rather than sprinting every 15mins 24/7 before an accident, she’s now going to the loo more normally a few times a day, and the bleeding stopped also. This we were told wouldn't happen until much, much later in the process
- I didn’t realise she was in quite so much pain the past few months but she is stubborn and hid it through lock-down! We were told the pain would NOT SUBSIDE with the chemo -again, it's not the course of treatment to stop it. This has NOT been the case and she says she’s not sitting on the red hot poker anymore! The hospital have no answer for this, same with the problems going to the loo
- Hair loss: Our treatment doesn't "shed" hair but we were told to expect "thinning". Im helping her bathe and I had to confirm to her after first treatment was instant shedding in the bath -lots of hair gone but not in patches, just thinning
- Food / diet: I was quite surprised the consultants told us nothing specific helps with things. NO vitamins to bulk up on. However, we have family friends who have all been through this (allsorts of Cancer) and everyone is coming round with fresh GINGER based biscuits and cakes -anything with GINGER really!
As for side effects we googled everything and looked at McMillan like the hospital said to do. Sounded terrible and to be prepped for the worst. Actually, she has coped very well so far which has surprised the hospital. She has had: quite bad gas, sensitivity in fingertips -particularly tingling anything cold, sometimes for a day or so she doesn’t have enough feeling to “use" the fingers for doing normal things with hands (we were explicitly told to expect this). She has been VERY TIRED and sitting last time outside the ward in the corridor while she was inside waiting for an appointment (I can only wait outside), I heard another patient speaking to her and said "don’t fight the fatigue, go to bed for a snooze -whatever". She has some dry skin, minor sore lips (all expected). Only one day of proper nausea so far. I am pumping fruit and veg into her in my cooking, she has to keep eating ALL the time (little and often) -snacks, sweets, drinks, anything desirable and her taste and sense of smell have changed so I'll get her whatever she feels like.
…so I think it’s all different for different people and everyone is on different cocktails of drugs and treatments and whilst my Mum is not quite as wide as she is tall at 4’8” she’s had such good diet and healthy living (forever) it’s all good for her and they say her bulk actually will help. I thik It’s not been traumatic so far so something positive as we were expecting an AWFUL lot worse going in to it!
My father died in 2013 at 69 from "secondary prostatic cancer, pulmonary fibrosis and pneumonia". At 55 he had a 5x (yes a record 5x, none of your double or triple) heart bypass before the prostate cancer and the second time the cancer came back he was on a palliative cocktail of drugs rather than curative -he lasted much much more years on this, not months!!!! So don’t give up just yet!!!!!
I'm not sure if this helps but we always find people are all out there going through or helping with similar things. I realise this was a bit of an essay but it helps me to talk about it also.
My Mum lives in Falkirk, half way between Glasgow and Edinburgh. I live in Inverness 4h drive away but I actually work near Versailles 20k south of Paris and have an aprartment there I can't get back to at the moment. So I'm stuck in the UK last 8 months due to co-vid and driving up and down the A9 every week to Mums -it's honestly a privelege to help my Mum out these days though and you will find family and friends rally round you when you need it.
Hope this might help,
Richard
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Hi Richard - Thanks for that - I hope for the best for your mum and you all.
I have cancer of the peritoneal sack - the big bag that holds all my abdominal organs. They think it's a secondary from a teeny-tiny bowel cancer that is too small to find but has been busy spreading elsewhere. I have a mass on the left side - more or less where my left elbow touches my side and a whole load of secondaries along the outside of the large intestine - on the PET scan is looks like someone draped Christmas tree lights along it.
It's terminal and inoperable.
It's causing a huge fluid build-up within the sack so the internal pressure is making me bloat and I'm finding it impossible to force food down - one mouthful and I feel stuffed. I'm concerned this will be my downfall - no food means I won't last too long. I'm concentrating on super-high calorie food like custard and chocolate to get as many calories down as possible. There's also the problem of the cancer causing multiple blood clots in both lungs - it's what initially put me into hospital - so I'm having the daily Clexane stomach injections which makes everything sore as well - and causes a really dry mouth making eating even more difficult.
The bloating is becoming really painful - I've had to get one of those pregnancy slings to envelope/support it - but it's stopping me getting any comfort so I just cannot sleep. There is no comfortable position.
We spoke to the chemo nurse yesterday - it all kicks off next Friday afternoon. She's gone through what to expect - the fatigue, nausea etc but also that I can't have anything cold or let my fingers get chilled at all. It's going to be a 2-hour infusion once every 3 weeks in parallel with pills twice a day for 2 weeks and one week off - rinse & repeat for maybe 6 months - if I last that long.
They say that if everything goes well, this might give me 18 months to 2 years. Unfortunately, I can feel how fast this cancer is growing so I'm rather more pessimistic. The engineer within me is continually plotting the graph of symptoms / body condition and I'm beginning think Christmas might be a stretch for me.
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Hi Plastic glad to hear your experiences there is tremendous support both in the forum and the NHS.
RST kind of you to share your current situation, you only get one mum, they have to be looked after.
Picking up if I may on the mention of ginger. I would not be surprised to hear anything about its properties, I can recommend the crystalized version to any gentleman not able to get through the night without a nocturnal toilet trip. I was holding at bay a prostate problem with the stuff. There s a side effect as it stains the teeth yellow. Since sorted out with my dentist.
I was with friends many years ago and we had a frozen meal from M&S and I chose Lamb Jalfrezzi and slept through the night, first time for at least a year, I tried the chicken version same thing then checked the ingredients and found ginger and this was the reason. When I eventually had a prostate Op (benign as it happens) I was still sleeping all night which I do not think the nurses believed.
No intention of hi-jacking the thread but just wanted to emphasize that there seem to be varying claims about ginger and they should not be dismissed as an old wives tale. Not only that but Ginger covered in dark chocolate is a near heavenly experience for me! By the way I tried ginger pills and they did not work.
My best wishes to all those with medical conditions on top of our current situation.
Regards
Roy
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Yes, 5 years ago now, persented in my lymph nodes in my neck, surgery, radiation x6 weeks x5 days a week, and chemo x1/week, everyone's experience is totally different, dependent on where the cancer, is. I finished treatment 11.12.15, and basically slept through Christmas that year, woke up on the 27th and asked the wife where the adult girls were and she said she kicked them out as they were arguing, never heard a thing. When I did wake up, I had a fever and an infected stoma, as I was tube fed for x2 months, couldn't swallow, I lost over 11 kg, and ended up in hospital for the anemia and an infection. Went back to work March 1st, those several weeks after treatment were horrid, wouldn't wish it on anyone. I always thought it would be prostate for me as my dad and 2 older brothers had, brothers are fine and much older than me and dad passed in a car accident. Can't praise the NHS at Musgrove in Taunton, they were great and still are, bless them, I figure each day I get now is just a peach, until you've been through it, its all just someone else's story, I'm 5 years good now, but it does change your life, knowing that it lurks behind you, hope this helps, if you ever need a chat, drop me a line, 62 and still going at it, abit slower but hey whats the rush.
Robert :-))
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Hi Robert - Thanks for your response. Congratulations on beating it - I hope you're feeling well.
It's all the unknowns that are the stress - I know where I am now but I've no idea what condition / health / abilities I will have when I'm done - and for how long before it takes me down permanently. The treatment they are offering won't stop the cancer, it'll just slow it down so there's no guarantee I'll be any 'better' after - or will I be where I am now, minus a load of weight and strength - I will have been alive for longer than my 3-6 months prognosis - (2 months ago) but not able to *live*.
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Picking up if I may on the mention of ginger. I would not be surprised to hear anything about it's properties, I can recommend the crystalized version to any gentleman not able to get through the night without a nocturnal toilet trip. I was holding at bay a prostate problem with the stuff. There s a side effect as it stains the teeth yellow. Since sorted out with my dentist.
Roy
Hi Roy - there's a load of anecdotal information about these things - it's one of the things I want to talk about with the oncology nurses as I'd guess they've literally heard and seen it all and so are probably able to give a casual insight on alternatives.
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Starting to panic now.
The paperwork pack turned up late on Thursday and mentioned going for a blood test using the form included - but no form.Nurse rang on Friday and was surprised at no form - but she would e-mail one to me so I could get it done at our drs up the road. Naturally, nothing arrived. %)
We spoke to a different nurse on Monday and she said I couldn't use my gp because they are on a different computer system so we had to go to Mt Vernon this morning instead - and the form would be waiting at the blood clinic.
We were there for 9am - no form. %) We were sent around to the cancer suite (walking 300yds feels like 20 miles right now) and they had the form there so did the test there.
This is all getting too random and out of control for my ability to cope. I'm getting really worried about Friday's chemo when I'll be left for a weekend immediately after with no easy safety net if I have problems {:-{ .
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Sounds like you need to give them a piece of you mind. >>:-(
I must admit that all the cancer staff I have met have been fantastic and very attentive so I pray that things improve.
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My 1st chemo was horrendous. I was there half hour early (1:45) because they said they'd start directly I got there but instead I got shoved into a side room and forgotten about - the infusion started at 3:15 and I wasn't offered and food or drink the whole time - nobody checked on my until just before the end at 5pm. While getting ready to go home I was hit by unbelievable pain - thought I was going to die - held onto the bed so hard that I've pulled muscles in my arm - pressed the alarm- no-one came.Eventually a nurse wandered in and said she would get a doctor - no-one came. Eventually decided to leave but none of the next appointment paper work was done
Total disaster.
Tried taking the pills at home but keep throwing up. unable to eat / keep food down. I'm looking like a Belsen victim - my body is deteriorating really fast. Need to speak to the oncologists but I think Christmas might be a distant dream for me.
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Not many words I can use that would express my thoughts sufficiently, my thoughts to you and you family.
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Thanks Rich
This is all so scary. The infusion causes nerve problems so it's like holding a Hornby track - constant 12v shocks in my hands and extremities. I feel really sick and another of the pills had me on the floor with stabbing pain, sweating buckets and shaking like a leaf again. I don't know how much longer I can live like this. <:(
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There is nothing that we can say which is going to help. It sounds like you have been treated really badly by those who should be caring for you. All you can do is to make a fuss and try to get better treatment. You shouldn't be left in this situation.
My thought are with you all.
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Thanks for your thoughts
My wife will be tearing the hospital a new one in the morning. :-))
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Have you contacted the Macmillan Nurses? They can offer you support in dealing with your pain and with the hospital. Your experience is so contrary to my wife's and my own during cancer treatment at our local hospital it is unbelievable.
Barrie
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Hi,
Sorry to hear your troubles so far -that doesn't sound right though we have had a lot of troubles ourselves: mainly with the district nurses though who have to perform some tasks twice a week at the house (and have been screwing it up until recently). I aggree with Barrie, phone MacMillan, and when we've had confusion from NHS board we've phoned the Oncology unit direct who have sorted things out for us here and then.
Can only send my best wishes through your treatment.
Rich
Illigitemi non carborrundum
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Hi Guys - an update.
We're a week into this now and so I needed to not take the pills for a couple of days to let things stabilise. The painful tingling and coordination problems from the infusion have reduced to a manageable level - I'm unbelievably sensitive to low temperatures - just what you need going into winter. %)
I've gone back onto the pills and we're learning to 'fly' those. The main problem is the chemo pills - I have to take 4 in the morning and 4 in the evening. Morning is ok - I can create a bed of weetabix in my stomach and lose each one with a few more spoonfuls to land on top of them. Within an hour, I feel stable and confident to do things without immediately throwing up.
Lunch is fine too - the only problem is loading more food and drink downwards putting pressure into my swollen abdomen - the discomfort grows all day, along with the back pain.
Evenings are hard - It's a race to get the pills and food down and try to stabilise and not throw up afterwards while feeling generally tired, uncomfortable, bloated, sore, gassy and borderline wanting to hurl. The back pain reaches a maximum - I just can't get comfortable anywhere. Laying down with the tv on for and hour or so helps until gravity makes everything moves around inside. This takes until about 8pm and then I feel fine again for a short while. I still don't have confidence in my body so I'm carrying around my little sick bucket - just in case. {:-{
Other than that, I seem ok - appetite is good - I'm looking forward to food - muscle mass is a worry. {:-{
It seems my day is now split into 2 distinct sections - getting going in the day and doing things - and all evenings trying to stabilise my body and prepare for sleep. Rinse & repeat. :-))
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So sorry that you have had such bad experiencs. Complain again and again. >>:-(
When I have my infusion there is always a nurse on duty, even if she has to look after 3 -4 of us. We are never left alone.
Sounds as if the hospital needs a visit from the local T.V. station
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So sorry that you have had such bad experiencs. Complain again and again. >>:-(
When I have my infusion there is always a nurse on duty, even if she has to look after 3 -4 of us. We are never left alone.
Sounds as if the hospital needs a visit from the local T.V. station
My wife has sprinkled her magic around and for the following appointment times, I will be personally seen to by the senior nurse directly I arrive at the main ward where I'll be with others so I'll never be alone. (cover ups seem to make guilty people a bit more motivated). :-))
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I had chemo #2 yesterday - a much better experience. I started to develop a reaction to the infusion so it was stopped at about 90% done - it was considered to be sufficient.
I was in hospital a week ago - the bloating in my abdomen had become even more acute so they drained me out - 12 litres!!!!! almost 3 gallons! :o I felt sooooooo much better after that - it had stopped me eating and drinking because of the internal pressures so I've lost 1.5 stone / 10 kg of vital muscles - mainly back, shoulders & chest but arms & legs seem a bit thin too. I look a bit scary like a prison-camp escapee. :((
I took the challenge from last weekend to yesterday's infusion to see how many thousand calories I could force down to get some fat back on my bare bones.
I've just had the first of the parallel pill-based chemo - I seem to be tolerating it better now I'm able to eat properly. I've got oral morphine solution to head off the back-pain the treatment causes. Early days still so it's all a big learning curve - but I'm feeling a bit more positive. :-))
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Hi Plastic - I'm really glad that your second experience was better than your first. I must be honest it was painful reading the way you described your first visit. Good luck with your journey through all of your treatment.
Give "just eat" a call - they deliver McDonalds and that will put some weight on you O0 Just look at the kids nowadays!! For some reason I fancy a chocolate milkshake now {-)
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Hi Plastic - I'm really glad that your second experience was better than your first. I must be honest it was painful reading the way you described your first visit. Good luck with your journey through all of your treatment.
Give "just eat" a call - they deliver McDonalds and that will put some weight on you O0 Just look at the kids nowadays!! For some reason I fancy a chocolate milkshake now {-)
Second time was much better - my wife sorted them out and spoke with the organ grinder so everything was good to go.
McD Quarter with Cheese = 600 calories. Good - but no cigar. Waitrose luxury custard = 2000 calories!! :-)) Cadbury's proper hot chocolate with full fat milk = 450 calories! I've been loading all week! I can 'feel' the vanilla essence coming out of my pores - a bit like after a heavy garlic feast you can smell it for days on your skin. {-)
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Mate I'd be eating Ben and Jerry ice cream until it came out of my ears - oh and Jaffa cakes I'd be sitting watching a film doing 3 boxes no problem {-)
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Mate I'd be eating Ben and Jerry ice cream until it came out of my ears - oh and Jaffa cakes I'd be sitting watching a film doing 3 boxes no problem {-)
I cant! {:-{ Because of the chemo infusion, I can't have anything less than room temperature because it will trigger my throat to close up - which would not be good. :o If my extremities get even the slightest chill, I get huge electric shocks - really painful! If I go out anywhere, I haver to dress up like Scott of the Antarctic - and a face visor to create a little micro-climate in front of my face so I don't inhale cold air. It's very weird.
Another strange one is having to tease my saliva glands with a little touch on my tongue first or a new flavour triggers a painful 'rush' - it REALLY hurts! Same happens with tears - so painful.
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I have had to stop one of my treatments as my blood cell counts have gone too low. Feeling better than I have done for the past 3 months. :embarrassed:
Just as well there is no Covid on the loose in Melbourne but I still have to keep clear of people. <:(
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I have had to stop one of my treatments as my blood cell counts have gone too low. Feeling better than I have done for the past 3 months. :embarrassed:
Just as well there is no Covid on the loose in Melbourne but I still have to keep clear of people. <:(
Giad you're feeling ok - the chemo kicks the crap out you - it's often a race between who dies first - the patient or the cancer. %) Will they restart when it all stabilises? I had the 2nd infusion on Friday and I'm taking the parallel pill chemo - and they're not giving me any side affects apart from back pain about 1/2 hour after taking which the morphine liquid squirts are looking after nicely - I actually feel completely ok apart from the extremity tingling - but it's all very mild. I hope this continues like this for the next couple of weeks of pills - then I get a week off of taking anything. Then chemo #3 on Jan 1st.
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Probably. Blood tests on Tuesday "All Bloods" then I will get a call on Thursday letting me know what 'they' have decided. Might be a lower dose.
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Probably. Blood tests on Tuesday "All Bloods" then I will get a call on Thursday letting me know what 'they' have decided. Might be a lower dose.
My chemo#2 is at a lower dose to chemo#1 because of the loss in my body mass - apparently, the Oxaliplatin infusion is done on surface area - I went from 2.08 to 2.0 sqm but my weight went from 92 to 80 kg so the Capecitabine pills went from 2000mg twice a day down to 1500 twice. They've not mentioned anything bad with my blood yet. The whole thing is so personal to the patient that it's all about fine-tuning to see what works or can be tolerated - the level of how ill you feel compared with wanting to continue the treatment.
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Well I'm guessing I'm at near maximum chemo dose concentration today - five days since infusion and with parallel chemo pills every day - I feel utterly knackered! :o
I cannot believe how wiped-out I feel - just cannot function. Appetite is ok, but wow - I'm just so weak!
On the plus side, the huge skip left the driveway yesterday with a lifetime's accumulated obsolete junk and 'stuff' on board so that personally-worrying job is done - everything left is now manageable. Just got a small pile of shredding to do - when I feel the inclination. O0
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Hopefully you will now be able to have some better days with a bit more energy, well done for ticking items off your to do list, we are here walking every step of the way with you, admiring your courage and honesty as you face this greatest of all challenges.
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Hi,
My best wishes with you. My Mum's still going through it also with some cock-ups 2 weeks ago including her PICC line coming out for a week which put us out of kilter but meh 'tis what it is (the home nurses have been pretty bad to be honest, unqualified even we found since). I can only empathise with you as I'm doing as much support for my Mother. If it's any help to you keep eating and I've been pumping fruit and veg in to her at least twice a day. Her skin broke out so have been out for Aveeno (seems a common problem and available on prescription) and Piriton amongst others. We had bloods last week that apparently said it was going the best it could -but she's whacked out after a week's break. Can't fight the fatigue, she sleeps uncontrollably half of the afternoon. Take care of your hands! That's one thing she's having major sensitivity in and can't go near anything cold anywhere. Her fingers don't work properly and nails / fingertips are sore so look after them I guess.
You've only been in it a couple of weeks, hopefully you'll be like us and find things improve after a few treatments. I hope my comments spur you on as I watch your thread with pain but hope it works out for you. My thoughts are with you!
Richard
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I really appreciate the support and encouragement from everyone - it means a lot to me.
The fatigue is unreal - you can't fight it. I've mentioned the cold sensitivity too - it's very odd to suddenly be getting painful electric shocks because I tested tap-water temperature with my finger.
I am finding my fair share of incompetent nurses - and bone-idle, lazy, conniving, work-shy dossers who are using the covid restrictions to literally get away with murder because relatives are not on the scene witnessing their inaction. I've even just received a very, very late letter from a registrar with clearly doctored details to try to avoid a negligence case - naturally, 'unsigned to avoid delay'. %)
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From what you write I am so glad that I am in Australia. The nursing staff at the hospital are very conscientious and if not fully occupied will pop round to the next ward to see if they can help out.
At the moment I am immunocompromised and off some of the chemo until I get back to normal. I have not felt this good for 3 months. :} Very tired though.