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Rosieh - Parents


Guest Barb (Canada)

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Mom saw oncologist at Whiston today. He again said he couldn't recommend chemotherapy for her as she is very advanced, it will not give her anymore time and would be very hard on her.


She still keeps thinking that someone is going to tell her that she can get treatment and will be cured. Its so sad.


How is your Dad doing this week and how is your Mom? At least the sun is shining today. Have you been able to get your Dad out much?


I had an e-mail problem on the weekend so lost your e-mail address. I have e-mailed Sue and asked her to resend it. Once I get it I will e-mail you re Coffee this week.


B

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Hi there.

I'm sorry your mum wasn't offered treatment, but at least the oncologist was honest about it not being of any help.


Yes, what a beautiful day. I got over here early afternoon.


We haven't been able to get my dad out at all, Barb. Will explain properly when we meet up - bit convoluted to try to type out! But he's fine - feeling quite well and is happy enough. His only expectation is to be pain free and comfortable - he's accepted the fact that he won't get better at all.


Looking forward to meeting up, if we can arrange something.


Take care.

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Hi Jan .... how is your week starting out and how was your weekend at home?


I have sent you an e-mail re getting together for Coffee this week if its convenient for you.


How is your Dad? Does he suffer a lot from feeling cold and does he have the weirdest noises coming from his stomach?


My Mom is freezing right now. All the heat in the house is turned up, but she is still shivering and cold. Have the heater on in the living room and she was lying in front of the gas fire this evening to get warm. She also has the absolute weirdest noises coming from her stomach. Sounds like a small tap running at times.


Take care .... B

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Barb, thanks for the email - have replied this morning.


My dad is doing ok. He's very chatty. Eating less and less, and getting thinner. He's also talking a lot about how thin he's getting and when he might leave us. I don't know if that is significant or not. He was talking about getting his friends over to see him in the next week or so, before he wastes away. He is sick every day on waking, but says it doesn't make him feel bad so he doesn't mind! He was starting to be sick all the time but since the doctor gave him Buccastem it is under control (apart from being sick every day on waking). His GP is coming out to him tomorrow so I'll mention it again.


He doesn't get cold - in fact, if anything he's usually feeling warm. But yes, his tummy does gurgle and roll a lot. It's very loud.


I hope your mum can get herself warm - is she still able to get into the bath? Does a hot bath help?


Take care

Jan

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  • 2 weeks later...

Hi Jan ... I really enjoyed lunch on Wednesday and I am looking forward to Thursday. Hope you had a good weekend at home and hope your Dad is doing okay.


We have had a very weird weekend with Mom. Been up for a couple of hours each day but is very unstable on her feet and very, very confused. Back in bed by 3:00 each day and basically out of it until 10:00 the next morning. Cornflakes and three cookies was the only food intake today. I sat with her from 7:30 tonight until 10:30 and I think she opened her eyes for 2 minutes (tops), every 15 minutes or so. I am trying to check out the new drug they gave her (pregabalin) which is a nerve pain drug. The blurred vision, loss of balance and confusion appear to be side affects of this drug, but she is only on the smallest of doses. I guess we will have to check this one at with the MacMillan Nurse and Palliative Care Doctor on Tuesday. The good thing about it, is that it has kept the pain away without the need for breakthrough pain killers. Roundabouts and swings, roundabouts and swings !


Talk to you later. Give me a quick update when you get a minute.


B

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Hi Barb - I see you have your internet back! I was just about to email you as I've got horribly confused with my diary. We're meeting on Thursday this week? That's good, and that's what I'd written in my diary, but then I started to think we'd said Wednesday instead! On Weds I have to pick my in-laws up from the airport. LOL, I'm probably confusing you now!


Sounds as if your mum is getting pain relief at a cost, then. As you say, maybe the Nurse/Doctor will be able to explain better what is happening.


I was actually back in Widnes yesterday/today, as my sister was away over night at a summer Ball. So we came back to look after my niece and just be close at hand if mum needed us. As it turned out, Dad has had an uneventful weekend. He had a lot of visitors today so I'm hoping he'll sleep well... I'm back in Leeds now, driving over again tomorrow morning. The M62 is getting boring!


Look forward to seeing you again - and I hope you can get some answers on the pregabalin in the meantime.

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Hi Jan ... just checked this out today. Yes we are having lunch again on Thursday. Hope you weren't waiting on my response. I remember you saying you had to do an airport run on Wednesday. So tomorrow, same place, same time 11:45.


MacMillan Nurse and Dr. Fountain came on Tuesday, ordered blood work and urine tests immediately. Blood work was back today and confirmed that nothing really stood out as being a problem. Liver function a little low, but they say that's to be expected. Urine test results won't be here until Friday. Given all of that, they are going to cut back to 20 mg of Amitriptyline (sleeping pill and nerve pain), to see if it reduces the confusion. Its getting really quite bad. I think the MacMillan Nurse and Dr. are thinking it is simply deterioration, but we will see.


Looking forward to tomorrow. Talk to you more then.


B

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  • 2 weeks later...

Hi Jan ... not sure if you are checking this these days but I will send you an e-mail also.


Doctor & MacMillans were here quite a while today. They are thinking my Mom could have Opioid Toxicity. When they added in the Pregablin they didn't reduce the Oxycontin and think now that the 300 mg per day may be too much. They have reduced to 200 (100 more and night), to see if that helps. They have also added in Lorazepam (a sedative) to see if that helps.


They also say that many of her signs can be signs that things are drawing to a close, but won't know until we address the possiblity of the toxicity first.


So we battle on.


Hope you are hanging in okay. I am thinking of you lots. B

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  • 2 months later...

Hi Jan ... got your e-mail but I have been busy the last couple of days and haven't replied.


Feeling really down today and checking out what's going on here.


Bill (my hubby), was diagnosed with Bone Cancer yesterday. We are being sent to Edmonton on Monday to meet with an orthapedic surgeon, but things don't look very good right now. From what I understand they will try to remove the cancer and a portion of the bone. Worse case scenario could be a full arm amputation followed by treatment. I guess bone cancer is really quite rare.


Kids are all a mess. This has come way too soon after my Mom. I am not doing too good either. Don't know how I can do this all again, but I guess you just do.


All this started in March when we were in England and he was helping around my Mom's house. Dr. in Canada did x-rays in early May and was supposed to refer him out but he went away and his secretaries didn't know what was happening. Then Bill came to England end of June to be with my and my Mom. When we got back we got a new Doctor who quickly did new xrays. The radiologist called him immediately and told him there was serious deterioration in the humorus (sp). He had an MRI 3 days later and now we are waiting for a CT Scan, but meet with the specialist Monday (if all goes to schedule).


I will keep you updated once I know what's going on.


Best wishes ... B

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Hi Barb

I am replying here as I think you and Bill share an email address, hope that's ok.


I am so sorry to hear about Bill.


I am struggling to find words to say to you, to be honest. I can't begin to imagine how you must be feeling.


I will hope and pray for the best possible outcome for Bill... and I also wish you the strength you will need to get through this.


Will be thinking of you, especially next Monday.


Take care Barb, and if there is anything at all that I can do to support you then please just ask.


Jan

x


p.s. We met your Auntie Fay at the weekend, she saw us moving in and guessed who we were so came to chat to us.

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Barb and Rosie............I check out the forum news and see that you both, with your families, are still going through a living hell. Barb, the news about your husband Bill........is devastating. It is said that you know when you have found true love when you come to realise that you could not continue to function without your partner. Yes of course, peer pressure, and responsibility from family/ children etc, will of course kick in, but life would be so different. I hope and pray so hard that Bill will be around for many years to come, to share a wonderful life with you even given the other areas of life experience that have already made things to difficult.


When I heard the news about Pavarotti, I was so sad. Such a brilliant man, to have had to endure so much. But anyone who has to endure what this dreadful cancer brings, should elicit incredible sympathy and tolerance. Having lost my aunt so quickly to PC (5 days, for those who have not read my story) - is in fact such a blessing. To read of hopes raised and dashed, Whipples procedures, so much pain and suffering, to snatch just a few more days of living.......seems inhumane. Sometimes I feel glad that we have vets, who have a legal choice to stop the suffering of our pets. Not so with humans. And whilst I partly understand the reasoning behind euthenasia, its a sad reflection on our society that to pass a law to make it legal, may encourage misuse by certain parties.


All I can say - to everyone who reads this - but especially to Barb who has had her faith in everything tested to the nth degree...........we must just live every second of our life as if it were the last.


Linda

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Yes Jan we share an e-mail address so at least here I can air my feelings. I will e-mail you my work e-mail address. Not that I have anything to hide from Bill but I don't want to be too down around him even though he knows I am having a tough time.


Obviously we are going to fight this one as there is at least a fighting chance with bone cancer not like my Mom and her PC. I know you will be thinking of us and I appreciate your thoughts (but could probably do with one of our lunches!!).


Our appointment with the Surgeon has been set for Friday now. They are trying to get a CT Scan done before we go, but the CT Scan in McMurray is out of order and they are in the process of installing a new one. Hopefully it can be done before Wednesday when we leave.


I am going to send you an invite to be my friend on facebook, that way we can communicate easily and you will get to see pictures of my family etc.

Talk to you later. B


Linda thank you for your kind thoughts. All cancer is evil and tonight I have been sitting here wondering what on earth went on over the last six months. I still can't come to grips with it all. I and my Mom also said that they wouldn't do to animals what they do to humans, but I have always been a spiritual person and believe that life was given to us by God and can only be taken away by God, although I can honestly say my faith has been challenged over the last six months.


I think we have to do all that we can do to help as much as possible to support research, early detection, treatment and awareness of environmental issues, healthy eating etc., if we have any hope of not letting this thing called cancer take over.


My 23 year old daughter is research holistic and alternative treatments right now and I think we will give it a go as well as the conventional treatments, it can't hurt right!!


Thanks again for your thoughts.


B

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Hi again Barb

I'm Jan Holt on Facebook, I should be easy to find... I think it will sweep your email addresses and pick me up that way.


I hope they manage to get the new scanner sorted before you to to see the Surgeon. Is Canadian Healthcare similar to American? I.e. will you be able to move things on pretty quickly when you know what needs to happen?


I think it is a good idea to have your daughter researching whatever treatments she can find - as you say, alternative treatments are generally unlikely to do any harm alongside the conventional ones.


Speak soon.

Jan


Linda - couldn't agree more with the sentiment of living for the moment! Well, a bit of forward planning doesn't harm, but you've got to get that balance right and enjoy life in the present, too.

Jan

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Hi

Just a quick note to say I'm away on holiday from tomorrow morning until 28th September. Last time I will have internet access is first thing tomorrow. We may have it on our island (we're having a fortnight in the Maldives) but I'm not sure.


So, Barb, I will keep thinking of you and hoping that the outcome from the appointment this week is as good as it can be.


Take good care of yourself,

Jan

x

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