Nearing the End of the battle

Unfortunately the statistics for this form of Cancer are very depressing.  I am not going to start quoting stats, and I know they are only numbers given as a gauge of the possible progression.  What I also know is that most of the patients who receive the diagnosis of GBM4 will pass from this disease and because of this disease their life will be considerably shorter than what they and their loved ones had envisioned.  With that said I wanted to have a page for what to expect when that time is near.  


Everyone is different, the timeline below is only posted as a guideline as to what you or you family may experience.  Some people will experience everything on the list, some will experience none, and some will experience a bit of this and that.  Please just take this as a useful tool to help you when the time comes.


...While the end stage path varies from person to person, there do tend to be commonalities that can help us to "see what we're seeing," and often, to estimate how much time might remain.

    First of all, how do you know "it's really time"? There are a few points that tend to help families realize that the disease is truly progressing and that preparations are in order. 

    Many of us are late to call in hospice---there's no shame in that---and we don't realize until later, with 20-20 vision, that the help probably could have been used earlier. It seems that most brain tumor patients tend to average 1 month or so under hospice care, though the disease may have been progressing well before that time. Our community, then, offers hospice workers little exposure to and experience with this disease, so it's important to know that unless your specific hospice nurse has worked with end-stage brain tumor patients before, his or her answer to the "How long?" question almost always tends to be a longer-than-actual prognosis.

    Why? Death to other forms of cancer tends to be much different. There is likely to be a longer period of weakening and decline, and more of a heads-up from the vital signs. With other cancers, there tends to be an organ-by-organ alert that the body is losing the battle. In contrast, some brain tumor patients---especially those in their 20s and 30s---might still be conversing or even walking themselves into the bathroom just a couple of days before their passing. Nurses whose experience has been largely earned with other cancer care aren't always aware of one critical point: the brain, as a master circuit breaker, has the capacity to shut down the body in one motion, without taking it organ by organ. long? This list is a very, very loose guideline based on what has happened to other people, but it may be helpful in beginning important discussions with the patient's doctor and family. In order to serve as a helpful guide, most of what's listed under each time heading would need to be occurring. Remember, though, that everyone is different. Too, patients in their 20s and 30s as well as those whose brain tumor journeys have already been quite long tend to spend longer in each of these stages.

3-6 Weeks Prior to Death


  •        Increasing weakness on the affected side
  •        Falling due to resistance to accept help
  •        Need for more assistance with walking, transfers

  •        Urinary/bowel incontinence may begin
  •        Confusion and memory loss
  •        Harder to sustain a conversation
  •        May say some odd things that make you think "Where did that come from?"
  •        May ask less about the next treatments or appointments
  •        May ask clear, rational questions about death, arrangements, etc.

  •        Increasingly tired, more easily "wiped out" after simple activities or outings
  •        Headaches may indicate increased swelling
  •        More likely to nap or to phase in and out of sleep

2-3 Weeks Prior to Death

  •        May begin to see weakness starting on the non-affected side
  •        Affected hand may curl in or be kept close to the center of the body
  •        Legs begin to buckle, eventually leading to dead weight when attempting to stand
  •        If still walking, may wander around the house a little, as if restless
  •        May find it difficult to hold the head up straight or may slump over
  •        Urine becomes dark (often described as "tea-colored")
  •        Less warning before urination (more urgency)
  •        Less interest in matters of the home and family, hobbies, or world at large
  •        Detached, without curiosity
  •        Harder to have an effective adult-peer conversation
  •        General restlessness/agitation
  •        Word-finding difficulties (conversation may be very slow)
  •        Confusion over what time of day it is (sundowner's syndrome)
  •        Speech may be slurring or trailing off, unfinished
  •        May begin saying things that sound like awareness that time is growing short
  •        May begin to seem more "childlike"
  •        Confused by choices; yes/no questions seem to work best

  •        Losing interest in transferring or leaving the house
  •        Seems to feel safest on one particular piece of furniture
  •        Begins to have problems swallowing, if not already
  •        Appetite may become sporadic
  •        May be sleeping 20+ hours a day, with short alert times between sleep
  •        May doze back off after eating
  •        May describe vision changes such as double vision, loss of peripheral vision, or black spots
  •        No longer interested in activities that require close vision, such as reading

1-2 Weeks Prior to Death
  •        Often, completely bedridden
  •        Younger patients may still be stubborn about getting up, though requiring assistance
  •        May hold on to the bedrail or to a caregiver's hand, hair, or clothing very tightly

  •        Usually incontinent by now
  •        May continue to express urinary urgency, without producing anything

  •        May find loud or multiple sounds irritating
  •        After waking, seems confused for several minutes
  •        Staring across the room, up toward the ceiling, or "through" you
  •        May look at TV but seem not to be watching it
  •        May make mention of "getting ready" or "having to go," without knowing where
  •        May refer to travel, packing, or gathering clothes
  •        May talk about tying up loose ends (specific to the individual)
  •        May mention seeing visions in the room (I've heard everything from horses to angels to deceased mothers-in-law)
  •        Communication seems to take more effort and makes the patient winded or tired
  •        Doesn't initiate conversation as much, though still giving brief responses to questions
  •        Agitation may build
  •        Likes to keep the primary caregiver in sight and may panic when he or she is not in the room
  •        May seem especially irritable with large groups of visitors or young children (probably because understanding conversations requires more work)

  •        Sleeping "almost all the time"
  •        Can sleep even in a room full of activity and noise
  •        Harder to rouse from sleep
  •        Brief, scattered periods of alertness
  •        Increased difficulty swallowing pills or liquids
  •        Vision deficits increase
  •        Eyes may look glassy, milky, cloudy, like "elderly eyes" or "fish eyes"
  •        May reach toward the head during sleep (may indicate headache pain)
  •        May have a distended abdomen
  •        Vital signs are likely to still be good
  •        May begin to have need for pain management

5-7 Days Prior to Death

  •        May restlessly move the legs, as though uncomfortable
  •        Most patients would no longer be leaving the bed by this stage
  •        May reach up or out with the arms
  •        May pick at the bed linens as if covered with small objects
  •        As liquid intake decreases, output also decreases
  •        The bowel becomes quite sluggish and there may be few/no bowel movements

  •        Minimally responding to caregiver's questions
  •        May begin sentences but not be able to finish them
  •        May say things that are impossible to make out or things that don't make sense
  •        May chant something ("Ohboyohboyohboy..." or "Ohmyohmyohmy...")
  •        May continue to seem restless and fidgety, as if late for something
  •        May be irritated by strong sounds or odors

  •        May be taking only minimal amounts of food (a spoonful or two, here and there); some, however, continue to eat well until about 48 hours
  •              before death
  •        Decreasing intake of fluids
  •        Administration of meds becomes harder or impossible
  •        Dosing of meds becoming sporadic due to sleep schedule
  •        May find it hard to clear the throat as mucus increases
  •        The voice may lower and deepen
  •        May have a wet cough
  •        Vital signs often still good
  •        Nearly always sleeping or resting
  •        May be uncomfortable being moved during clothing or linen changes
  •        Dramatic withering of the legs due to inactivity (skin 'n' bones)
  •        May have a low-grade fever

2-5 Days Prior to Death

  •        Motor movements (eg, waving or hugging) are likely to appear weak
  •        Unable to help the caregiver by leaning or moving during linen changes

  •        Bowel activity likely will have stopped
  •        Urine output will lessen considerably
  •        Urine color usually lightens

  •        Very little interaction, often no initiation
  •        Speech may be quite slurred and hard to understand
  •        May sit in the room with others and say nothing for hours
  •        Could be described as "neither here nor there"
  •        Restlessness and agitation give way to calm
  •        Hands and feet may become cool
  •        Forehead and cheeks may be warm or hot
  •        Thighs and abdomen may be warm or hot
  •        Hard to keep the eyelids open, even when awake
  •        May spend a couple of days with the eyes closed, even though still slightly responsive
  •        Minimal interest in food
  •        May turn or clench lips to indicate refusal of food or pills
  •        May seem unaware of how to use a straw
  •        May have had last decent fluid intake
  •        May bring mucus up into the mouth with a productive cough
  •        Last Decadron dose may be administered (either intentionally or due to difficulty of administration)
  •        Some drugs may be given only by suppository or dropper now
  •        Vital signs often still normal, but some report cardiac changes (eg, racing heart)

Final 8-48 Hours

  •        Very difficult to rouse from sleep or elicit a response from
  •        May have no response or only nonverbal communication (eg, winks, waves, or nods)
  •        May seem relaxed and comfortable
  •        Usually very minimal or no urine output
  •        Reaches a point of unresponsive sleep (coma), which can last from 1 hour to most of the day
  •        No longer any involuntary movement during sleep (no fidgets or eye movements)
  •        Mouth may slacken and eyes may remain partially open during sleep, as voluntary muscle control is lost
  •        Vital signs may be OK until just hours before death
  •        Blood pressure may drop significantly
  •        Heart rate may be twice-normal (120-180 beats per minute)

Just Hours

  •        No response whatsoever from the patient
  •        No movement
  •        Breathing changes (of any kind at all)---sometimes faster, sometimes slower; sometimes harder, sometimes more faint; sometimes louder
  •             sometimes inaudible
  •        Mucousy breathing (the "death rattle"; harmless echo of air over mucus)

Time of Death

  •        May let out a sigh
  •        Respiration may slow so much that caregivers believe the last breath was taken, but a few more reflex breaths may follow      
  • May open the eyes as they pass on
  •        Will appear very relaxed

Shortly Afterward

  •        Many have commented that the face looks younger, the forehead looks free from wrinkles and cares, and the steroid bloating begins to disappear. 



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