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Cancer: Lung Message Board


Cancer: Lung Board Index


Hi,

I don’t know if I’m writing to the right forum, but anyway I’d like to share the story of my mother’s disease with you and ask what you think about the “treatment” she’s getting now, and I’ll welcome any suggestions as to what should be done in this case on the side of the doctors and family members, and generally what would be the best for the patient. Excuse me (in advance) that it will be a bit too long, but I just don’t want to leave out any details in case it might turn out to be important. So the story is as follows:

My mom is 70 years old (I’m 24, by the way), and she’s been smoking since she was 20. As she is really old now, she’s lost almost all her teeth, and the few remaining ones occasionally started aching when she was eating. Anyway, one year ago when she was having dinner she felt a sudden, sharp pain again in her right teeth/jaw, but this time the pain wouldn’t go away so she went to the dentist’s – actually 3 or 4 dentists examined her in the course of the past year – but none of them could find anything wrong and thus couldn’t ease her pain. I can’t recall whether it was on the same evening the jaw-pain started or a few days later, that the right side of her neck got swollen and then she immediately went to the ambulance where she got some injection (Calcium if I’m right) and that solved that problem and the swelling never came back again…the jaw-pain remained though…

To be precautious about this neck-swelling, one of the doctors sent her to another medical department where they examined her throat and came to the conclusion that there is some lump and a mild oedema on her vocal chords, but they told her that no operation was needed because this type of disease has a tendency to recrudesce, and that this is something that generally doesn’t become malignant in females anyway.

However, out of precaution again, from there she was sent to the pulmonary doctor’s office because of the hoarseness of her voice (which has been around for decades, by the way)…and that’s when she was diagnosed with a tumor in her right lung (5 centimeters = 2 inches in diameter then), but fortunately she hadn’t been feeling any lung/chest pain until that time (it was only 2 months ago from now that she started to feel some occasional pain there) . But something went wrong on the day of the CT: she caught a really bad cold, and thus was not in the right condition for the histological examination or for any further treatment for a few months. In addition, she was just really afraid of the histological examination anyway, because she heard many bad things about it, and she thought she would be risking her life if she underwent that examination…(but that was all 1 year ago).

So one thing led to another: there she was, having this ever-painfully throbbing pain in her jaw, which became even worse when she was in a lying position (no matter if she was lying on her right or left side) , so she just opted to sleep in a sitting position every day, resting on her left elbow, holding her head with her left hand…and even a lump developed on her head right where her hand used to rest (I don’t know whether it was just a reaction of her body to the constant touching of her head-skin, or it’s already metastasis of the tumor). Moreover, eating became a torture for her because of the increased jaw-pain, so she gradually ate less and less, and lost quite much weight during this past year (actually she was 65 kilograms at the beginning if I’m right, and lost something like 20-25 kilograms – to be really punctual: she was 165 cm tall and her normal weight was 45 kg throughout her life, it was only when she retired that she put on some weight and had 65 kg). So yeah, basically I don’t know whether this loss of appetite was actually due to the lung tumor or the jaw-pain, but her reason was the jaw-pain...and maybe the jaw-pain itself was caused by the tumor, I don’t know. And to make things worse, she started to take more and more (general) painkillers to ease the pain (as much as 5-6 pills on some days, but usually 4), after a while taking more painkillers than food, so no surprise that after a few months her stomach started to hurt as well. At the end (in the last 2 months) there were days when she just didn’t eat anything at all, and on better days she would eat like 3-4 bites of food, but at least she drank lots of water and tea.

And coincidentally, it was one year ago too that I had to move away from home to another city because of my job (and was able to be with her only 3 and a half days a week) and – being a widower with an only child (me) – Mom just became really lonely and inactive…you know, before that, we had some nice walks in nearby parks or in the city-center, but since then she just went to the nearby shop every morning and sometimes she visited me at this other city, but basically that was all the movement she’s done, so she was mainly sitting in her armchair all day watching tv/solving sudoku puzzles/reading the newspaper or some classic crime fiction novels (like most old people do), but in the last 2 months she was mainly sleeping almost all day…so her leg-muscles became really really weak, though her arms and hands remained strong. But until the day she was taken to hospital (3 weeks ago) she was able to go to the toilet or to the fridge by herself by holding onto the furniture.

And to not leave out anything, I have to tell that she started saying strange things 4 days before she was taken to hospital – like calling the mineral water “mouth-wash” and “phone book”, and something about her seeing blue books tied onto the ceiling of the balcony on ropes some hours before and telling me it was frightening her – so I don’t know whether she was really hallucinating, having some linguistic confusion in her brain, or just dreaming (and not being able to tell dreams from reality) and I don’t know what could have caused it (cancer metastasis to the brain, starvation, the painkillers, dreaming, or all of them)…but it just lasted 1-2 minutes a day, and throughout the rest of the day her mind was totally clear/normal. Anyway, I told her that these things were non-existent and told her to ask me if she experienced anything that seemed impossible again before getting frightened because probably they are just hallucinations or dreams…and she did: she remained calm, and asked me whether what she thought to be happening was the reality or not.

As for her thoughts on her condition: she was 100% sure that she had lung cancer with metastasis, and that she would die soon, and she decided that she wanted to die at home, in peace, avoiding the hectic examinations and treatments she would face in a hospital. I was telling her almost every day that she should see a doctor, but she just refused it all the time…she said there’s a time for each and every one of us to die, and that her time is soon over, and asked to leave her alone to die peacefully.

But 3 weeks ago her brother visited her after like half a year (she’s got a brother and a sister, by the way, none of whom visited her much in the past few years). Anyway, her brother decided that it was now really time to take her to hospital, so he and her sister took her there (while I was away at this other city), and a quick 1-day examination has been done (like X-ray, but no CT and things like that), and at the end of the day, the doctors wanted to send her to the department where the terminally ill patients are looked after, but her brother had some connections and arranged that the pulmonary department would accept Mom among its patients.
But as I see it, it’s all the same: at this pulmonary department they have the opinion that Mom is incurable and so they don’t examine her further (after the first day), they don’t even know much about her tumor (only know that it’s probably 9 cm in diameter because the X-ray showed something like that) and they don’t treat her with cancer medication. And I managed to find out that they treat her only with the usual infusion, a painkiller patch on her back and 3 different sedatives. And that’s what really makes me worried and question this “therapy”: why on earth would any patient need Tiapridal, Seduxen and Haloperidol, all 3 of them applied every day?!

What I experienced at this department where Mom is now is that they don’t inform the patients and not even the family members (other patients are experiencing the same), and I could only read Mom’s medical chart secretly when the nurses were away for a moment…and that’s when I saw that what they say to be pills/injections for nausea, high blood-pressure and tachycardia are really just sedatives, and rather strong sedatives I must say, so strong that now I’m unable to communicate with Mom because either she’s sleeping or talks like an infant (saying non-sense things and having almost no articulation, so it’s hardly understandable). On the rare occasion the sedatives start to lose their impact on her, she is reading the newspaper and solves some sudoku puzzles (like she did before the hospital), but then after some 10-15 minutes the nurses come again, inject some “stuff” in her and then she’s gone again (mentally and spiritually).

As for the other conditions there:
As soon as she got there, they immediately applied a catheter although they knew that she is able to urinate by herself, and put a (rolling) toilet chair beside her bed for the “other” thing…and she could climb down the (otherwise really high) bed by herself if she wanted to use the toilet chair.
In her room (it’s a 3-bed room, by the way) there is no handrail to hold onto when she wants to get up, there is only the rolling overbed table she can hold onto, but one time when she wanted to get up, this rolling thing just capsized and Mom fell off the bed, so they put rails on her bed, so now she’s unable to go anywhere or even to sit up because her legs don’t fit through the bars of the rail. And, of course, after 1 more day they just got bored of Mom wanting to get down to the toilet chair and decided that they won’t take down the rails every time, so they put a diaper on her instead – which she takes off whenever her mind starts to clear from the sedatives because she still feels she’s able to go the toilet chair by herself and she doesn’t want to make any “mess” in her bed and then lie there covered in it. The other thing is that the nurses dress up Mom almost every time in a way that the catheter-pipe is directed towards her back and the pipe itself and some bump on it hurts Mom’s back because she’s lying on the pipe all day, so she’s complaining about this back-ache all the time and they mainly think it’s her lungs that are aching, and give her some painkillers and sedatives again…and my explanation for them was basically useless, because okay they changed the pipe to the other direction (downwards) right away, but they just forgot it by the next day, so everything stayed the same, and Mom is still having the same pain. And there is some in-bed bathing/washing but that doesn’t include brushing the patients’ teeth, so they just remain unwashed for days (until I manage to visit Mom and brush her teeth myself). And sometimes the nurses ask me to give the pills to Mom myself which I think is really cruel, knowing that they are nothing but sedatives (although they don’t know that I know what they are).

Well, otherwise Mom seems to have a tendency to get a really bad oedema from the cannula, and even her other arm gets swollen as well (where there is no cannula at the time). And, of course, she’s having all the symptoms of nicotine withdrawal as she’s not been smoking since she’s in hospital (for 3 weeks). And at first she just wanted to go home all the time, but as soon as I could first visit her (3 days after she was taken in) I told her that the doctor said she was incurable and that she would have been dead by then if she wasn’t taken to hospital, and hearing all this really suprised Mom and she started to take her physical condition more seriously and she said that: “okay then I opt to stay in hospital because it seems they can somehow keep me alive and we can be together for some more time, and maybe there is some hope that they can strengthen me up with this infusion and then later maybe I can get cancer treatment” (it was all before they started that heavy sedation treatment).

But we also decided together that I would bring her to the hospital of this other city where I live so that I could visit her every day, and that would be a spiritual relief for her. Although there is a special lung sanatorium here in my city and there is a doctor that offered to treat her, that doctor also said that Mom has to be in a condition well enough for the examinations and radiation therapy, because all they can do in their insitution is to give her a 5-6 day treatment and then let her go home, and she said the decision is up to me if I choose to still bring Mom here now or later. But she recommended to bring Mom to my city’s chronic department instead where probably they could strengthen her up a bit, so maybe after a while she could reach a better physical condition and that other treatment at the sanatorium wouldn’t be so risky then. And her present doctor told me the same before: that she doesn’t dare to send Mom to any further examination (even inside the town) because there is a risk that she could die on the way there. But Mom’s told me that even if she would die on the way, let’s do it because if she died it would mean that she would have died anyway in a few days even if left undisturbed, but if she survived the examination then there would be a hope for curing her disease.

Otherwise every doctor I contacted here in my city (a Hungarian city called Szeged, which has a famous university with many faculties and has 2 hospitals and many clinics)…so after reading that 1-page examination sheet we got after that quick 1-day examination on Mom’s first day in the hospital, every doctor in Szeged said that based on those symptoms and physical condition described there, they think Mom’s not in such a bad state as her present doctor says, and that they don’t know any possible reason that could exist for that heavy, threefold seduction they apply there (except that the doctors/nurses there are too lazy, and don’t want Mom to complain or anything), and they said that even caring for her at home with no medication at all would be better than this “treatment” she’s getting now.

But my problem is now that Mom’s brother and sister don’t want me to bring Mom here, because they think the chronic department would be worse than this present one, because there Mom would see patients dying every day beside her and that would be really despiriting for her…true, but what they don’t know is that even at this present department patients die almost every other day (maybe because they get the same treatment as Mom, or simply because cancer is such a deadly disease?) (I’m the one who spends the whole day there and I see everything that goes on around there, not her siblings). They (her siblings) also said that they think this seduction I was writing about may be a part of easing her pain, that was their explanation. So they want Mom to stay where she’s now, because they say now she’s got a friendly roommate who can help her (call the nurse when needed), but at the chronic department every patient is basically dying and they can’t help each other. And they also told me that when the time comes for the pulmonary department to send Mom to the department of the terminally ill, they want to pay so that Mom could still stay at the pulm. dept. until the day she dies, because they think it’s a much better place. And her siblings are legally as close relatives of her than I am, if I’m right…so legally that’s just 2 against 1, so I’m just starting to feel hopeless about me ever being able to win against them and bring Mom to my town (and Mom’s brother is even a judge and lawyer so…)

But all I know is that I took my mother there 3 weeks ago, and even then she could walk with aids, we had some nice chats, she was reading the papers, she was curious about what was happening in the world, she made friends with her roommates, and then a few days later they started to apply those sedatives and since then it is only an almost totally unconscious body I’m visiting 4 days a week. I’m just sitting beside her bed all day and she’s lying there (and sometimes reaches out her arms towards me to indicate that she wants to sit up in the bed, and then I help her), but we can’t really talk to each other, and then when finally her mind starts to clear and she starts to talk, the nurses come and “mute” her again with that junk. And I just don’t know whether there is still a clear/sane or an insane mind behind the sedatives. And if she really went insane by now is that because it would happen anyway, or the sedatives caused something adverse and irreversible? So yeah, if she’s really insane then I would say that “okay, let’s keep her where she’s now because it’s all the same for her whether she’s here or in another city”. But if she’s still sane and would be her normal self again if they stopped sedating her, then I would just like to help her escape from there, or even take care of herself at home myself (although I know that it would be really hard, but hey that was what I was doing until 3 weeks ago anyway and I was able to manage it somehow).

So what do you think about this situation? What can a 24 year old girl (me) do when she and her mom’s got left no-one but each other to trust (my father died, grandparents died, I’m her only child; and her siblings are against our plan), and we just want to be together, in the sense of both geographically and spiritually close? Do you think it is possible to come back from such a mental state and regain her normal self/state? What do you think would be best for her: leaving her alone and not disturbing her with the transportation to another city because it may increase her physical pain or would even kill her, or trying to do anything that’s possible to save her from the mental stupor she’s in now?

These are just some questions that come to my mind presently, but I’d really welcome any advice on any aspect of the situation. Thanks in advance.

Bogi





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