Well life on the road is turning into a disaster,I foolishly thought that we were doing the right thing after he refused to have anymore treatment, he wanted to just travel in our caravan and try and forget everything.
Unfortunately Cancer isn't something you can forget,we have visited quite a few places and it started off fine, however as we progressed and the pains started in his legs, (he insisted it was not the cancer but a pulled muscle)more and more things started to get worse.We finally reached the Eyre Peninsular and I convinced him to visit a small country hospital, they were extremely helpful, better than the big cities, and the Doctor there told him he was taking his medication all wrong, instead of waiting till the pain was really hurting and just taking one tablet, he was supposed to be taking 2 tablets 4 times a day to keep things under control, the Doctor rang the health dept. and we were given a huge prescription to last him for the next stage of the journey.
Things were a lot better after that for awhile, however what I am finding it hard to deal with is the sudden bursts of bad temper, I thought I was trying to help with helping him set up the van at the various parks, however after one burst of abuse I was apparently making him feel inadequate and an invalid, well this was only one of the things that come out when he is in these moods, I try and ask if he is in pain when he has these bouts, but am accused of being a F***** bitch and causing him all kinds of grief.I have a mantra I use every morning to myself that no matter what he says I will not let it affect me, but being human I am finding it very hard.
I know there are people out there that will say I am being selfish as the poor man is suffering however don't you think I know this,yesterday he insisted he was feeling good and wanted to go for a walk, so off we went, unfortunately on the way back he had a fall and took all the skin off his head, legs and shoulder.It was very hard to see him suffer these injuries as he is going through so much but I patched him up and he was OK.Today we went for a drive, I asked if he wanted me to drive and he said no, so I let him go, had a lovely morning and he was talkative for once, however when we got back to the park, I must have triggered something off by asking where to next..well the abuse started again accusing me of not listening and he has already told me 5 times, then the swearing that I am sure everyone heard, accusing me of trying to make out that he is forgetful????
Am I the only person out there who has to listen to this, I am finding harder and harder to keep up with the mood swings and abuse,I am not by any means a submissive person and I have to just shut up because I then feel guilty if I upset him. He will continue to sulk for a while until I start to speak to try and make things normal, but if I did not speak we could go on like this for days.
Any suggestions please and please is this normal
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Well it has been about a month or so since last post and lots have happened again, after much soul searching hubby has decided not to continue with treatment anymore, and I fully support him,after the last bout of sickness he said what kind of life is this,so after speaking to his GP and then the Oncologist, the decision was made not to continue with the chemo.
So we packed up the caravan and hit the road again, along with all his medical records and tablets, and the improvement in him since we have been on the road is immense,much happier.Mind you it is not all plain sailing he is having a problem with his right leg and pain, but insists that it is a pulled muscle, so I just go along with it and as long as he is happy to we will keep travelling for a while longer.
Let me state at this time I really appreciate the support I have received from this forum, it is really great that you can pour your heart out to complete strangers and receive such benefits. So thank you all. I will keep posting to the blog at intermittent intervals to keep you updated with what is happening.
Can I also state at this time our sincere thanks to his wonderful GP who bent over backwards to help Les, if more GP's still had these values it would be great. I am sorry I cannot say the same for his Oncologist and the Cancer care place he went to,even though I can understand that they have a lot of patients to deal with,I still believe that people should be treated as an individual not just a number.
Will keep you all posted and once again thank you for your support
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Well have not had a lot of time to respond to messages or update blog lately as quite a few things have happened since Christmas, on New Years Eve I had to get an Ambulance to take my husband to hospital as his temp.shot up to nearly 39 degrees, they took him to our nearest hospital as the hospital he is treated at usually is too far away.
Anyway they worked all night in emergency to stabalise him and his blood pressure at one point went down to 80/56.They said he had a massive infection raging through him and they were trying to isolate it,his veins had collapsed so they ended up putting a line into his neck and groin.His mouth and throat were badly ulcerated.
They transferred him next day to ICU Oncology and for a week they fed IV's of antibiotics, his BP fluctuated up and down for a few days and then even though they could not isolate what was causing the infection they suspect it was a viral one coming from the throat and mouth.
They stopped all chemo and other drugs he was taking till they finally released him a week later with a bag full of antibiotics. Well we went back to the oncologist the following week and she went through everything the hospital had done, and then her statement was "It looks like the chemo is killing you faster than the Cancer is Les so I suggest we stop all treatment now and review you again in around 6 weeks time" as he was so weak from all the drugs he agreed.
Now he is experiencing extreme fatigue no energy and I suspect he is depressed even though he says he is not, I have made an appt.with a GP for Monday as his regular one is away on leave, just to see if there is anything else we can do. One positive is that he is eating well again but even after taking protein powder, sustagen and lots of fruit fish meat and vegetables he is really tired.
Don't know what else to do as it is very hard, so if anyone has any suggestions please let us know. When he saw his GP last week he sent him for blood tests, but then told us he was going away for two weeks but we could ring up for the results if we wanted to, but as we don't know what it is we are supposed to look for there is no point.
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Well today has been a crap of a day, Les got up this morning looking lousy,had light breakfast as usual but felt nauseous straight away,he went back to bed around 11.30am and slept till 5pm awoke and was immediately sick,was very upset and has talked about going off all treatment as his quality of life sucks. He is into his third cycle and we just don't know if it is going to be any better.
There is no one to turn to as we only have a couple of friends that live too far away to talk to except by email etc.Son lives in Perth and daughter and family are on holidays in Queensland and I try not to worry them anyway.
I told him that what ever he decides I will support him wholeheartedly and if he does decide to go off it,we thought that we may travel to Melbourne and see about being assessed by Peter McCallum hospital down there. We have had excellent report about this hospital and believe it is worth a try.
Well thats me for another rant
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Well it has not gotten any better, they had to take Les off the clinical trial as it was making him extremely sick, so he is just on the 3 week IV course and Xeloda tablets everyday.But things have not changed, we don't know if it is the chemo or the cancer that is making him so sick anymore, no one seems to have answers.
He is down to 59kilos now as he cannot eat as he just has a horrible metallic taste in his mouth all the time,lives on Sustagen, jelly and custard and weetbix. It is ok for these people to say he must eat more, but when everything tastes like shit(pardon)it is hard.
He sleeps a lot now, gets up for an hour or so, tries to do things but the nausea is really bad and he has to stop till it passes.He is getting very depressed trying to cope, thank goodness he has a wonderful GP (who is on holidays at the moment) He goes all out for him and rings the authorities to get him permission for extra anti-nausea tablets that help.
The one positive was the other day the CT scan shows the tumours had shrunk a bit, but then the Oncologist said that no matter what the result they will come back (I think that was good news????)and as for the secondary cancers in the bones he will have to have another PET scan to see how that is going.
I think that all cancer patients should be able to get any tablet they need without question, we have worked 50 years and paid taxes and private health and contributed so surely we deserve something back.
Sorry for being on such a downer, but I have to rant somewhere I feel so helpless at times because I can't help him.
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Yes he is on a clinical trial, he had a 7 hour session last Thursday and they gave him a whole lot of the chemo to bring home that I cannot touch as it is harmful, he has to take these every day morning and night,well I tell you they have hit him hard he can barely get out of bed and alternates between throwing up and taking anti nausea tablets has not had the diarea and the constipation has worked out now but he is ready to give up already as the drugs are really hurting. For a man that has never taken any drugs in this volume he has been hit bad,I keep in touch with the clinical nurse and she said all the doctor says is to rest. We have another appt.to day for another dose intravenously so they had better have some answers.
Thank you for bothering to keep in touch after your loss
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Thanks for the comments Seadee and sorry for what you are going through as well,it just is not fair is it, I hope you have lots of support as well. Luckily we have also the support of a wonderful Clinical Carer Junie, I can ring her anytime and she will get back to me straight away, mind you I don't have the same feelings for his Oncologist they seem to think they are above all this. I had a problem this morning where he was really ill and had a lot of new symptoms, I rang the clinical career and gave her the information, she went to see the Oncologist and came back with the response that the Doctor said just rest.(Duh) it is rather hard to just rest when you are having all these side effects.
I should not go on about it but as this is the only forum to vent your feelings without recriminations and upsetting your family well so be it.
Take care of yourself.
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OMG this chemo is certainly devastating, Les had seven hours of chemo on Thursday, and it has completely wiped him out,has had one side effect after another, I really take my hat off to everyone out there who has or is going through the same thing. Everything from constipation,then vomiting, Diarrhea, flu like symptoms,and generally wiping him out, have just been there supporting him and finding foods he can keep down, he has lost his appetite but have to persuade him to eat something even if just a smoothie so he can take all the tablets he has been prescribed and this is only day 5.
Has anyone any experience as to how long before he starts to feel a little better????
By the way has anyone noticed when someone is going through this how many ads on TV for Funeral Plans etc..Never took much notice before but everytime you turn on the tele there is an ad on.
Blood tests tomorrow and then more chemo at the Cancer centre on Thursday if he can get up enough energy.
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I am so sorry to hear about your husband, I was only thinking of you today and contacting you to see how you were going, my husband starts first bout of chemo tomorrow on a clinical trial, I do hope you will still continue to post here and share your experience of how you are coping as well. Bless you and I hope you find the peace you are looking for.
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.