ValS's blog

Low sodium and potassium

2011-08-25T07:13:34Z

Hi folks, I haven't blogged for several months now, but I keep an eye on how all my Mac friends are getting on.

But now I'm hoping for some information - my elderly mother-in-law has low sodium and potassium levels (not cancer-related, as far as we know, but she has other medical problems). She has been in hospital for several days, is very confused a lot of the time, has little appetite and is on restricted fluid intake. It's hard to get there at a time when a doctor is around, and we can't seem to find anyone who can tell us what is causing this problem and whether they can put it right. They've tried saline drips and potassium drinks, but there's no improvement yet.

I've seen blogs where low sodium levels have been mentioned - any advice? Thanks, Val

I wish ...

2010-12-20T12:57:30Z

At this time of year, there are lots of wishes flying around. Most of them are the usual seasonal messages – although perhaps this year there might be a few more wishes for improvements to snowy conditions and travel not being disrupted.

I have a few different things I’m wishing this year:

To those of you spending your first Christmas without a loved one (like me), I hope you can look back and remember the happy times. While never forgetting the bad times, may the new year bring optimism for the life that goes on.

To those of you living with cancer, and all that entails, I wish you the best possible time. May you be surrounded by love.

To those of you just starting out on your cancer journey, whether as a patient, carer or friend – I wish you all the very best. May you find the strength to deal with this devilish disease.

And to all the people I have met on this site during the last 18 months, who have comforted me and encouraged me – I wish you all peace and joy at this special time of the year.

You are all very special people, and deserve the very best for 2011 and beyond. XXXX

Three months on ...

2010-06-04T11:51:51Z

Today its three months since my step-dad died. That's 13 weeks since we held his hand as he reached the end of his journey. So how are we doing? Well, Mum is doing amazingly well. She has even been out to a couple of functions that she would normally have attended with him - and the fact that she coped, and enjoyed it, has given her confidence a real boost. She has a little colour back in her cheeks, and may even have regained a bit of weight. She has told me that she still wakes up and thinks she hears him struggling for breath, but apart from that she is managing her new life with incredible bravery and composure.

As for me - I'm told I've been bottling things up, being strong for others and maybe not grieving properly. Being under pressure at work doesn't help, but I have many things to be grateful for so I'm not grumbling. What's a few sleepness nights and IBS compared with what so many of you are living with?

But here's my dilemma - should I stay part of this online community or not? Am I holding on to the past by continuing to contribute - or can I really help others (as they have helped me) by posting sympathetic messages and words of comfort, sharing my experiences in the hope that others wil find them helpful? I have 'met' so many wonderful and inspiring people (Kezzerbird, Drew, Debs, Sarsfield, Graham and Jenni to name but a few) that part of me is reluctant to leave. But some of the stories are heartbreaking and make me re-live the emotions I felt in the months up to his death.

In the words of the song (I'm showing my age now) 'should I stay or should I go'.

As ever, your advice will be welcomed. Love to you all, Val X

It's over

2010-03-06T08:41:42Z

Dad passed away on Thursday, at home with us beside him. It was what he wanted, so we're glad about that. We're all very sad, but we didn't want him to suffer any longer. RIP. X

In denial?

2010-02-15T11:43:45Z

What do you do when a lung cancer patient says he can't understand why his breathing is worse, and why he keeps losing weight, even though he's eating quite well? He knows that there is no more treatment that can be given, but I'm not convinced that he has grasped the fact that his life is limited because the cancer hasn't been cured. He was told that his last Xray was one of the clearest he'd had, and he has interpreted that to mean that the cancer was gone. Sadly that wasn't the case. He's having disturbed nights due to his poor breathing, and when he walks a few steps (which is really only to the bathroom now) he has to use a stick as he can't feel his feet. They don't hurt, he just can't feel anything, and he doesn't feel safe.

Me and my sister are at a loss as to what to do. I've left a message with the mac nurse, so maybe she'll have some ideas. We're also worried that Mum, who is the full-time carer, is struggling to cope, but she's too proud to ask for help.

If anyone has had any similar experience, I'd like to hear from you. Thanks everyone.

A long (and sometimes lonely) road

2010-02-04T11:41:50Z

So here we are, almost 6 months since we were warned to 'expect the worst' when Dad struggled to survive pneumonia and sometimes it feels as if we're all caught in some sort of No Mans Land. As there is no more treatment possible, there are no more hospital visits, x-rays or scans - indeed, there's probably not much point.

But for those of us watching him in his daily struggle to have some sort of quality of life, it's extremely hard not knowing what we're likely to face in the next few weeks/months/years. The cold weather has upset his breathing, so he has stopped trying to get out. His poor weakened lung can't cope. So he and Mum stay at home and try to stay positive, and we help as much as we can with that. There are days when I feel so frustrated for them I could scream. Sometimes I cry instead, for the lifestyle that they have lost. I'm finding it hard to cope with working full time, being supportive both mentally and practically wherever possible, and staying positive for them. I find myself wishing this rollercoaster ride would stop - then I feel guilty, especially when I read what everyone else here in mac land has to contend with. We are so lucky in many ways.

But am I the only one in this position who feels lonely sometimes, not wanting to burden friends, colleagues and some family members with my worries? I know it does no good to bottle things up, but I can't keep ranting at them.

So apologies, my cyber friends, you're my safety valve. XX

Hooray for steroids!

2009-12-09T11:49:25Z

Hi everyone. I just wanted to share some good news with you. I don't know if it's a coincidence or not, but since dad was prescribed steroids he has improved slightly. The improvement has meant he has been able to go out in his car a few times. In fact, he and Mum drove to Thursford to see the Christmas concert yesterday, the first proper outing they've had since the summer (and the under their own steam as well). Mum left him in his wheelchair while she went off to the ladies, and a lovely person saw him and asked if there was anything he needed. As a result, when Mum came back, he was tucking into a cream cake!!!

So, a big hooray for steroids, and thanks to the GP who prescribed them. We're all on cloud nine and would love you all to be able to join us! Val X

Anyone heard of this?

2009-11-16T11:35:15Z

I haven't blogged for a while, but I'm hoping someone may have some feedback on this problem. Dad is having very disturbed nights, where he sleeps quite soundly for about 4 hours, then spends the next however-many hours dozing and disoriented, mumbling in his sleep, and sometimes not knowing where he is. He's then absolutely worn out and distressed the next day. Often he then spends most of the day sleeping. Of course, during the night he also disturbs Mum, who gets up and makes tea, etc to try to help. She's looking really drained. He's taking a low dose, slow-release morphine tablet twice a day to 'help with his breathing' - could this be causing the problems?

I think in the back of my mind I'm worried that it's the lung cancer spreading and causing him these problems - or am I just being stupid? Does anyone have any experience of this?

On a positive note, we were able to take him to a family party on Saturday - just for a couple of hours, so he didn't get too tired. It was a huge confidence boost for him and Mum, an excuse to dress up and get out of the house for a bit. However, some of the 'friends' at the event seemed reluctant to come to speak to him, which made me very cross. it's not as if they're going to catch anything! I'm amazed by how insensitive people can be. I appreciate that they may be embarrassed, or not know what to say, but it doesn't take much effort to say hello does it?

I'll stop now before I shock the office by bursting into tears at the thought of what this cruel b***dy disease is doing to him (and those around him).

Not used to feeling so helpless

2009-10-26T11:43:01Z

It's been a few weeks since my last post, and Dad is getting weaker. He has been so brave so far, and hasn't complained, but yesterday when I saw him he said he had almost had enough. He was so active before this wretched illness took hold, now he is afraid to move because each time he does, he has a coughing fit and ends up struggling for breath and completely exhausted. He's not really eating a great deal now, so Mum is also losing weight and looking worn out. Friends are all being great, visiting to keep his spirits up, but some days he can barely get out of bed. I feel so helpless - and terribly guilty because a few weeks ago hubby and I went on a (long awaited, and saved-for) holiday to celebrate a special wedding anniversary and had a fantastic time ...

Apart from the obvious, like cooking nice things to tempt both of them to eat, visiting as often as we can, talking on the phone when we can't - does anyone have any suggestions for how we can help? Is his medication making him depressed? It's horrible seeing him so upset. Part of me thinks that it would be best if it was over soon, but how can I even think that? :-(

cold feet

2009-09-01T11:38:24Z

Hoping someone may be able to offer advice - dad is not able to move around very much at all because of the breathlessness and he is now having problems with his feet. Basically they are swollen, they feel numb when he walks, are really cold all the time and are starting to turn blue. I've urged him and Mum to contact the GP or the Macmillan nurse, but they 'don't want to be a nuisance'. Medication-wise he's only taking steroids, plus his decongestant stuff since the chemo ended and he recovered from the worst of the pneumonia - has anyone had experience with similar symptoms? Should we be worried or is it relatively common for a patient who isn't moving around much? Speaking of cold feet - we're due to go on holiday soon and am really anxious about being away. We've had the holiday planned for a year, but i feel so guilty about going, it's making me so stressed I can't sleep ... but i know dad would be so upset if we didn't go (and anyway the insurers aren't being very compassionate, no surprises there, and we'd lose all our money!)

A difficult birthday

2009-08-21T11:30:37Z

Thanks to all the lovely people who took the time to reply to my first blog post. It helped me to realise that I had started grieving for dad (it's the second time I've had to deal with it, my blood dad died suddenly of a heart attack many years ago), but at least we can have some precious time together. Dad was allowed home, it was the day of his birthday, which was quite difficult as he knows he is very unlikely to see another one. He is managing to eat quite well, which is encouraging (and means Mum also eats, as she's clloking for him). he has no pain at present, which is a real blessing, just very little breath. He even managed to make a joke about the stair-lift (which wasn't something he was mentally ready for, but realises he can't be at home without it). They tried tarceva tablets earlier this year, but unfortuinately he had a very severe skin reaction after about 10 days and had to stop that treatment and have his second round of chemo. He has now got to the point where he can't have any more as he is too weak. We hope we can make his remaining time as happy as possible. Love to all of you who are (or have been) in a similar position. X

How do we cope?

2009-08-18T12:39:05Z

My family have been on the lung cancer roller-coaster for the last 18 months. I think Dad is moving towards the end, he has been fighting but seemingly the battle is almost lost. He almost died two weeks ago, and we were told last week that he may only have a matter of days left, but he has rallied, and they are talking about letting him come home from the hospital, which is great. Really worried about Mum and how she will manage, as we don't live close enough to be there every day. Don't know how we are going to cope - any thoughts or experiences welcome.