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Medical Forum / Diseases and Disorders / Cancer / January 2004The days are getting longer, but the wait is worse
Hi guys, Just a quick update. Not really into posting much. Pat is still fighting but the cancer is spreading fast. The doctor was here last night, and we think that the cancer is in his back as well as in his shoulder. He is on a lot of medication and is sleeping almost all of the day. The doctor says that he is almost maxed out on what we can give him at home. He doesn't want to go into hospital yet, he still says that he can't come home if he does, which is very true. The med that they have offered once in hospital is called Veriset (sp?) Can anyone shed some light. I do know that it will make him twilight and keep his pain and struggle to breathe at a minimal or at least his feeling of it out of his concern. They also said that the last days medication, and it cannot be administered here because the Extramural hospital program does not have a protocol for administering it. It is I.V. Based and a constant drip apparently. His doctor is VERY good, she is young and willing to try her very best to help keep him comfortable, as well she is beginning her weekly visits to our home to check on him on top of the extramural nurses. This is absolutely terrible for him. I hate this disease and what it has done. I want to scream and throw things and fight with everything I have but there isn't anyone to fight against. I am so scared that he will pass away without me here with him and I am terrified he will pass away with me here next to him. I just love him and don't want the suffering to go on. He hurts so much and can't breathe because of these damn tumours. There are so many questions I have that can't be answered, and I am so damn angry and hurt that cancer has stolen our lives together away. I don't know what to do........................... Thanks for listening Salisha > Hi guys, > Just a quick update. Not really into posting much. Pat is still fighting [quoted text clipped - 27 lines] > > Ooh Salisha, This is a strange thing for me to say, but touch your monitor right now...... and know that as you do so I am wrapping my arms around you and giving you the biggest of hugs. Contained within those hugs is some of my strength to help you carry on. I so know what you are going through Salisha. You are so right about this disease and the pain and turmoil that it entails is indescribable. You are doing all that you possibly can and Pat is so lucky to have you by his side to help him through. Don't be scared Salisha about Pat passing away without you, know that you will be with him whether you are there physically or not, and he will be with you in your heart and in your memories for the rest of your life. I don't blame you for being angry either, I am still angry myself and the most frustrating part of it all is that there really is nothing that we can use as ammunition in the fight, unfortunately sometimes it is just a case of what will be will be. You do know what to do Salisha and you have been doing a very fine job at it. It is so dreadful to see those that we so love so dearly suffer. Our emotions are like Jekyll and Hyde, part of us want to end the suffering of those that we love and the other wants them to carry on forever more. I know that you don't feel like posting much right now Salisha, but do know, that as and when you want someone to share your anguish I will be here for you. ((((((((((((((((((((((((((((((((((Hugs)))))))))))))))))))))))))))))))) Take care and I'll be thinking of you Alayne > Hi guys, > Just a quick update. Not really into posting much. Pat is still fighting [quoted text clipped - 25 lines] > Thanks for listening > Salisha Hello Salisha, I'm asuming it's Versed (Midazolam) http://www.palliative.org/PC/ClinicalInfo/PCareTips/TerminalSedation.html I think it's partly used if he starts to have distress and agitation due increased breathing difficulty or due to pain. It's also available in syrup http://www.rxlist.com/cgi/generic2/versedsyr.htm So I don't see why, if the time comes that his pain is not controllable or he starts to manifest signs of distress for any reason, at home, they (doctor) can't give him a bit, so he's less aware when it becomes time to take Pat to the hopsital. *hugs* J Daffman@yeah.right.com said... > Thanks for listening Oh, Salisha! {{{{{{{{{{{{{Hugs}}}}}}}}}}}}}} Daffman wrote in message ... I hate this disease and what it has >done. I want to scream and throw things and fight with everything I have >but there isn't anyone to fight against. I am so scared that he will pass [quoted text clipped - 4 lines] >and hurt that cancer has stolen our lives together away. >I don't know what to do........................... <<<Salisha>>> Cancer makes me very angry also, on so many levels. I hope you can feel my compassion to you and your loved one. Marie > Hi guys, > Just a quick update. Not really into posting much. Pat is still fighting [quoted text clipped - 25 lines] > Thanks for listening > Salisha Dear Salisha, I'm praying for you and Pat right now. Hang in there, Love -- we're hangin' with you! ((((((( Salisha ))))))) Love, Trish Thanks everyone...I have had a good cry, yesterday was a rough day. I have a feeling today may be as well. Thanks for the support. Salisha Salisha, I'm very sorry to read of your and Pat's pain. I've just been lurking here the past few weeks, since it became probable that I have lung cancer (final diagnosis not in yet, but 80+% probability). I'm a little confused about the doc's statements--I work for a hospice and it sounds to me like this doctor maybe isn't up on paliative care techniques. Don't know if Pat's appropriate for home hospice care, or if that's available where you live, but if so I'd strongly recommend looking into hospice admission. In addition to dealing with medical professionals who are well-versed in the latest in paliative care for the patient, there's the support of an entire team which includes social work and spiritual components, home health aids if required, and bereavement care. Hoping for the very best for you, Bill Where we live the hospice care takes place in an eight bed hospital ward. Our doctor is as up to date on Palliative care, before she began her practice in September she worked as a resident in Palliative care. We have some support but unfortunately where we live, we have to pay out of pocket for home support and financially that isn't an option, as well, with Pat's medications, we would have to hire a nurse, not a health care aide because the training required for the dispension of these meds does not allow for health care aides. There are regulations that the companies around here follow and in order to inject meds, it must be an RN, not even an LPN could be hired by a private company. Where we live that is upwards of $25/hour. It's simply not an option. I don't think that having private care coming in would help our needs anyway, we (meaning his mother and I) are fully capable of taking care of his personal care needs, it is the strain of him not being him that is hurting us the most and the pulling on our heart strings that is tearing us apart. We do have a good support team, it just hurts like hell despite that fact. Because we have extramural hospital program, meaning, daily visits from trained RN's paid for by our insurance, we are able to keep Pat at home. However, due to their limitations, and the limitations of our knowledge, we will not be able to keep him here because certain medications require close monitoring that neither his mother nor I are qualified to do. That is why the doctor says we may not be able to keep him home much longer, as well as him *Maxing* out on meds meaning, again, any higher doses need to have close monitoring that would need to be done on the palliative care unit where there is 24 hour RN care at a 2-1 ratio patient to nurse. ...Thanks for the input....Salisha Sorry to hear of your situation, it sounds like you have a great relationship with your doctor and is doing the best job best job . It seems like you don't live in the US since inpatient pallative care units are rare and hospice ( home) is usually accessible. Sounds like you are doing a great job. IF you live in the United States a Medicare certified Hospice maybe able to handle your husband's needs. I was a hospice nurse for many years and it was very rare to find a patient that we could not manage at home. Besides pain medication by mouth, there are routes that can be done well in the home. They include patches, suspsitories and SQ infusion pumps that only need be changed by a RN every other day. As far as side effects and monitoring in pallative care the biggest side effect is respiratory arrest which in a case of a terminal patient in pain you would never withhold pain medication . > <snip> > IF you live in the United States a Medicare certified Hospice maybe able to [quoted text clipped - 5 lines] > pallative care the biggest side effect is respiratory arrest which in a case > of a terminal patient in pain you would never withhold pain medication . Thanks Alex, The OP (Daffman) lives in Canada. The rules, costs and benefits may vary from Province to Province. J I thought so ( being Canadian). Every place has different services, in the US home hospice are plentiful but inpatient pallative care almost unheard of. . It is very difficult no matter where you live to go through this process though. Alex > > <snip> > > IF you live in the United States a Medicare certified Hospice maybe able to [quoted text clipped - 10 lines] > The rules, costs and benefits may vary from Province to Province. > J > Where we live the hospice care takes place in an eight bed hospital ward. <snip> The situation is far different here--in Austin there are about 6 hospice organizations, 5 for-profits and the not-for-profit that I work for. We're the only one with any inpatient facility. It's just 15 beds, while we have an average daily census of around 200 patients, most in their homes and some in nursing facilities. I'm in awe of caregivers, professionals of course, but especially those like you and Pat's mom. There must be a very special corner of Heaven reserved for those who give so much of themselves out of love and caring. Bill > Where we live the hospice care takes place in an eight bed hospital ward. > Our doctor is as up to date on Palliative care, before she began her [quoted text clipped - 22 lines] > there is 24 hour RN care at a 2-1 ratio patient to nurse. ...Thanks for the > input....Salisha Unless the drugs are being administered IV which is rare or unheared of in palliative care then it is possible for the staff to teach untrained carers to give injections at home either through a 'butterfly ' inserted by a nurse or directly under the skin if you wish. Apart from keeping a record of what you give so the staff can monitor the effectiveness there is no need for 'close monitoring'. Opiates are generally very safe drugs to administer in patients who don't have opiate 'sensitivity'. There is no maximum dose and when given in set bolus doses the worst that will happen is the patient will drift off to sleep and won't need any more until it wears off. If theycan get equipment like a Graseby syringe driver drugs can be administered under the skin constantly and the syringe refilled each day. Almost any o the palliative drugs can be given this way and two or three drugs mixed together. People , including doctors, often believe that the drugs kill terminal patients. This is not true. The disease does that. It is just coincidence that terminally ill patients can die while taking large amounts of drugs. MIKE |
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