It is now nearly three weeks since my darling gave up her fight and surrendered to cancer. There is not much more that I can say except that my family and friends have been, and are, very supportive. They have made my journey much easier as I start putting my life back in order after two and a half years of helping Elaine cope with this bad disease. I am already finding that while the individuals I am dealing with are empathetic and helpful, the organisations make life difficult.

For now that is it and this is probably my last blog post.

Just six days ago my darling gave up her fight and surrendered to the cancer on Tuesday October 9 at 10.50pm.I have been doing a lot of thinking since then and feel that it was the continous and continuing UTI’s that really finished her off.  They were of course part of the problem in that her lowered resistance to infection and her weakened condition allowed them to stay around. Her weakened condition, partly also from long hours in bed did not help.

What was fantastic was, as I said last week, the way that the medical team and our wonderful family swung into action and provided comfort and support for both of us. Because of them Elaine passed quietly and peacefully at home with me, and Toni, at her side. She is now at last at peace and probably by now comuning with her parents, my mum, Todd and Gina, I miss them all terribly.

The Chevra Chadisha swung into action that night and together with the Chippers (now Purslowe Chippers) arranged the funeral on Wednesday which was well organised and professional and a fitting tribute to my lady. There were about fifty people in attendance and a similar number here for the minyan that night. My brother Tony and his wife Louise arrived here on Tuesday morning and together with our family, particularly Toni, and friends were a great support.

I miss her lots and lots and am in awe of her strength, physical and mental, in fighting this bastard of a disease for so long - more than two years longer than our doctors predicted. I like to think that I assisted in that fight in a psotive way and again I miss her.

Wow this sets a record for slackness! One whole month plus between blogs. By way of excuses it has been a difficult month.

Elaine has been gradually getting weaker and finding it difficult to move around reaching the point about two to three weeks ago when she could not get out of bed without a lot of assistance. We also had to sometimes use her walker as a wheelchair to move around. I had decided that part of the problem was the amount of time, nearly all day, that she was spending in bed which naturally caused muscle wastage. So I had embarked on a program of exercises but realised after a while that firstly I did not really know the best exercises todo. Secondly my powers of persuasion are not good when it comes to actually getting her to do them. Not that Elaine did not want to do them, but that there were issues of stiffness and inability.

In this period we had the pleasure of a week long sleepover by Lyla. It did wonders for Nannee and for me. But Elaine continued to struggle. So I asked Dr Geoff Gild to do a care plan for a physio, which he did and we contacted Zoe Brest do fill that role. She was fantastic and in just three visits had Elaine sitting up with minimal assistance. She knew what to do to get things working and I was very excited at the prospect of improvement.

Then Elaine went downhill, almost as if she had decided that it was all too hard and it was time to surrender to the cancer. That is where we are at now. Elaine has said all along that she wants to stay at home until the end and I am doing my best to make this happen. The amazing thing is that a well oiled machine has swung into action with almost no prompting from me. Dr Geoff visits at least once a day, Silver Chain comes with two girls every morning to wash Elaine and attend to the medication pump then every night to make sure she is okay and they do not ignore me making sure that I am also okay. Then there is our family who are being very attentive, particularly Toni who has been here every day.

This is a difficult period for both of us, Elaine obviously and me. We knew that this time would come and have sort of prepared ourselves but the reality hits home hard, very hard.

Well this week is not so good but last week was not really bad. After attending a ceremony at Karrakatta on Sunday Elaine rested up on the Monday. Then Monday night we went out for dinner and she was great. The rest of the week was ok until Friday when Elaine was just a bit out of sorts, I say that based on what has become normal over the past year or so. She is having a bit of trouble standing up and walking (probably partly due to her lack of physical activity) so I decided to try and get her up more often to get her muscles working. That was ok on Friday although she was really struggling by dinner time.

Saturday however was a different story and we had to call the ambulance to get her back into bed (she was half out and half in!). They found that she had a temperature, so it was back to hospital. There she will get another 7 day course of antibiotics which will hopefully sort out the issue. Also we are getting the Physio to get Elaine up and going, which is probably a lot nicer for Elaine than my clumsy efforts.

Another uneventful week, Elaine is continuing to be as well as can be expected. The pain is still there largely, but not completely, controlled by her medication. We are now trying to get out and about a bit to hopefully cheer madame up.

That is all for now.

On time this week.

Other than a midnight fall there is very little to report this week. Elaine is doing as well as can be expected. The pain continues but is more or less under control with her medication. The fall happened on Friday night, around midnight when Elaine slipped and fell in the garage. We called the ambulance and as usual they were very nice people who quickly got her back on her feet and into bed. Once again we have been very lucky and there was no long term damage. Friday we picked up Lyla from school and went with her for an ice cream at Scarborough, which we both enjoyed.

There we go I have fallen back into bad habits, no blog for 2 weeks.

Life has become almost boring, Elaine is doing as well as can be expected. There are the usual aches and pains connected with her cancer mostly helped dramatically by her medication. Having said that her medication is only a fraction of the amount that she was taking even a year ago, so that is a benefit and testifies to madam’s strength.

I don’t want to put a mocker on things but Elaine has been doing as well as can be expected for the last couple of weeks. Having said that she is a bit confused this morning which is not a good sign, we will see what transpires during the day.

After a large and frustrating effort by our GP we have been granted permission to use canabis oil. The permission specifies the patient, the doctor, the pharmacy and the precise prescription and required both state and federal approval. So far it appears to be reducing Elaine’s pain level so we are about to get the second bottle (60ml) of this very expensive medication ($350) which will last about 2 weeks. If it works it is worth it.

Another week with not much to report.

Elaine is home and giving regular instructions to her (male) nurse (me). There is still of course pain but this is more or less under control, using plenty of medication but not as much as during the last year or so. It is actually quite amazing the extent of the reduction in medication since Elaine’s hospital visits earlier this year. As has been their habit for the past two years Silver Chain continue to be a rock with their advice and assistance, as does our wonderful GP Geoff Gild.

I have also put some time onto exploring other care and assistance options. There are lots of alternatives but none of them are any better than what we already have.

Just another thought, I saw the hospital account, paid by HBF, and I am really impressed at my fore site in having continued to pay health insurance all these years.

Well Elaine is back in hospital. Yesterday (Sunday) was a repeat of Sunday about 5 weeks ago. She was great all last week, we cooked together and went to the plaza on Thursday afternoon. Then on Friday we went down to Peter’s at Scarborough for hamburgers, and they were as good as they ever were. Then Saturday was spent watching Lyla play (!) football and shopping for birthday presents. Then on Sunday it all falls apart and the infection shows it’s ugly head again.

Anyway the have started pumping her full of antibiotics and hydration so she will be home soon.

Me again.

Elaine is now home and fighting fit - that is slight  exaggeration but she has recovered well and is looking great. There are still issues but nowhere near those that preceded her visit to Hollywood. She is now moving around quite well giving me heaps.

So let’s hope that it stays this way, but the UTI will eventually return and require another visit to hospital to get loaded up on intravenous antibiotic.

Following last Sunday’s meltdown when Elaine was admitted to hospital in a very poor state we have had a week of treatment.

They started of with intravenous antibiotics and reducing some of the pills that the medical team felt were contributing to the issues. The UTI was the main problem but there were other problems related to that. Anyway the change is amazing and Elaine is now almost fighting fit, this lady had very good recuperative powers, enough to confound everybody.

Anyway she will be home sometime this week, at least that is the current plan. There has been some discussion about rehab etc, but we will see. In the mean time we have been busy organising some home help to make life a bit easier.

Well it has been a rather hectic couple of weeks.

First in the week before last Elaine had 4 falls, all but one not really her fault. But they happened and we were very lucky that no physical injury resulted from them. She is however still sporting some substantial bruises and the resulting discomfort.

Then last week 2 falls, this time because my darling wife believes that she is bullet proof and does things that should be referred to me. Again no damage beyond bruising.

Then on Sunday she came down with another major UTI. It had probably been brewing for a bit but there were no obvious signs. At least not that I noticed. However on Sunday daughter Toni noticed dehydration, after I had called for help. Then when I called again later in the day she sensed a high temperature. So we got our favourite doctor Geoff involved and she finished up back in Hollywood hospital.

Hopefully I will get her back by the weekend because neither of us like her being away from home.

Hi it looks like I have been slack again and neglected to do a blog for nearly 3 weeks.

Not a lot has happened, but we have been fairly busy. Elaine’s knees have been giving her hell since she got out of hospital in January, getting more painful by the day. It got to the point that she was in tears trying to stand up but ok, or more or less ok, when she was up on her feet. Anyway no one had any helpful suggestions so we requested from our go and arranged a CT scan to see what was going on. Then last Thursday when Silver Chain was here I asked about anti-inflamatories which seemed to have been removed from the medication list. After some discussion it was agreed that we could restart the anti-inflamatories that had been discontinued in January. The result is a spectacular improvement, hooray. Then to top it off we had a good result from the scan.

So we are back on track and madam is doing lots of things that have been off the adgenda since January.

Here I am again and not a lot has changed.

Last Monday we visit our medical oncologist who commented that Elaine has out survived his expectations. He said that this was due to her strength and of course the medical staff looking after her. In the meantime she is doing as well as can be expected, a bit of pain and a lot of fatigue. So we just stay positive and figure that this will continue fir quite a while yet.

Only 10 days since our last blog, so we are improving.

During the last 10 days very little has changed. Elaine still has quite a bit of pain, which will, hopefully, start to subside soon. Today we will visit then radiation oncologist and he will assess the progress.

Thats about it folks, more later.

The last 3 weeks have been fairly routine as far as Elaine is concerned. We started with a little bit of drama having to get the van registered in WA some 8 weeks ahead of expectations which sort of messed around with our budgets (stamp duty for the changeover was horrendous) and I must say my equilibrium having to deal with governmental stupidity and on top of that a government website.

Back to more important things, we had an appointment with the radiation oncologist on Monday the 26th and the news was basically good. Most of Elaine's tumours had either shrunk or stayed the same, particularly those in her head which were all reduced dramatically or had disappeared. This was the area of her last treatment. However there were 2 new ones in her lower abdomen and he decided to treat these as well as giving the one near her shoulder blade another blast. This is what we had expected and treatment was to start the following Tuesday (Monday was a long weekend so we packed the van and headed north for a few days getting back in time for the first session).

The treatment was 5 bouts of radiation each expected to last about 1/2 hour. As it happens the first was nearly an hour and the last only about 20 minutes. It is normal for radiotherapy to initially inflame the lesions, with a resulting increase in pain, and that is what Elaine is putting up with at the moment. Increasing pain means increasing medication which results in fatigue and a little confusion. So madam being madam does things that she should not do, like walking outside the house without her walker, and that mean more falls risk and the need for me to be more vigilant.

However she is basically doing well within those parameters and we look forward to good results from this round of treatment.

Just out of interest the government pays me for being Elaine's carer, thus eliminating the need for expensive hospitalisation. The rate of pay is about 30cents per hour or $8.50 per day, generous isn't it!

We are home and have had time to reflect on the journey. I don't think that Elaine really enjoyed the trip, partly because of her first couple of days and because her pain was constant. But she was glad that she came and certainly I was very pleased to have her with me. Anyway I thought that now would be a god time to put the details on paper, or rather on the air.

We left here on the 8th by Virgin, no dramas and a good flight with Elaine sleeping pretty near all the way. Then the Avis desk and drama, after 1/2 hour with discovered that my credit card had international transactions barred and Avis banks in the USA.  Off to the van at Mittagong and a very pleasant handover. Then that night Elaines runs kick in and she has a bad night, along with difficulties getting into the bed. Next day off to Moss Vale to return the car, as per my booking, with Kate (the seller of the van) following......But at Moss Vale they would not accept the car. Another long phone conversation, this time with Avis and we arrange to return the car to Campbelltown which is 54km backwards from Mittagong. Later that day, Friday, I do exactly that and catch the train back to the van and we spend the night at Mittagong.

Saturday dawns and we find that Elaines purse has been left in the car and we drive back to Campbelltown then head off to Wagga Wagga a total journey of 450km. There we stay with friends from a previous trip which is very pleasant then head off the following morning. That night, Sunday, we stay in Hay and I cannot remember where! By then we are both very tired, Elaine is recovering but is still tired, we have also realised that a realistic take off time is 8.30am and decide to call it a day at around 3pm.

Come Monday we are a little more relaxed but cover 512km, plus a couple of side trips looking for a camp, to Waikerie where we finish up camping in the civic centre car park. From there we drive 398km to Iron Knob, which the older of us will remember as the original iron ore mine, and stay in their RV friendly park. Wednesday sees us drive 402km to Ceduna and an CMCA friendly caravan park. All this time the scenery is very nice but Elaine sleeps most of the time in the passenger seat, but sooner or later we will be back for a better look.

We are now starting the Nullabor run which is the main thing that Elaine wanted to see. So we spend Thursday night at the Head of the Bight parking area after a 294km drive. On previous trips we have limited a days drive to a macimum of 200km and mostly covered much shorter distances, with Elaine driving nearly all of the time.  The longer drives mean that we are both tired and are not getting a really good look at the scenery, but that is what we expected and this is, after all, a delivery trip. Friday we continue westward stopping at all 4 of the coastal lookouts to take in the spectacular and pretty bight coastline. After about 400km we stop just past Mundrabilla in 24hr stopping camp which extends well back from the road and is quite nice. From there on Saturday we head past Balladonia stopping after 445km and an hour or so in medium strength rain at another roadside stop.

It is now Sunday and we had hoped to be home for Karen's surprise party, instead of which we drive 430km to Coolgardie where they have van parking at the railway museum. That night we find ourselves, with 2 other vans, in the middle of a major thunderstorm with lots and lots of rain. It is amusing to note that now that we are not pushing we are covering quite reasonable distances. From Coolgardie 295km to Merredin and parking at the Merredin Peak reserve which is quite good and we stayed here on a couple of previous occasions. This time we do not have any company.

So on Tuesday we drive 258km to Barr Street and thus ends our odyssey.

I may flesh this out a bit at a later date , but that is the delivery trip for our new motorhome.


 

Well talk about the best laid plans........etc.

This morning we were both up at 7am, had no hold ups, but did empty the toilet and top up the water. We got going at 8.30am which is hard to understand as we did not do any special jobs or any thing else to delay us, very disappointing. We did stop for breakfast and showers for an hour at about 10am, then for lunch at about 1.30pm and we did get fuel which took about 1/2 hour. So for about 6 hours driving, sitting on 100ks but obviously some traffic hold ups we only covered about 400 kms......also very disappointing. To do this we were pushing and putting in a far bit of effort, so from now on we will relax and not try for high distances every day, maybe even do a bit of sight seeing. We have missed a lot of nice stuff so far but we will get back sooner or later.

Anyway back to madam, she is now feeling a lot better than the first few days, we have been here for 5 days. We have made good just 1500kms which is not bad considering that we lost the first 2 days and had to back track 54kms, an extra 108kms, travel. That is actually better than I thought but we are still 2500kms from home.

The Cohen's are journeying again, yippee.

The first couple of days were a bit stressful, nothing to do with the van. First I spent 30mins at the airport sorting the bank out so our credit card would be accepted by Avis. Then there was a big issue returning the car requiring another long phone cal to Avis. The result being that I had to drive back 54ks then catch the train back to to van, and now Avis have charged me 2 extra amounts. I will have to try to sort that out, and after I got back to the van we discovered that Elaine's purse was left in the car requiring us to drive back that 54ks before starting our journey. Then Elaine got some kind backstairs bug and we both had a bad first night in the van, that is clearing a bit now but madam is still not herself. I topped it off by breaking the galley tap before we took off to get her purse.

However we are now on our way and spent last night on a rural property with friends from our previous travels. The property was his sisters and Ian, the man of the house, restores old motor cars and there was a couple of examples of his very superb work on site. Today we have driven to Hay, where we will spend the night. Just 600 kms along the way but we are both refreshed and should be able to cover the distance. The target is still to be home by the 17th.

Everything is progressing. Elaine is doing relatively well and is quite active, although still fatigued. But at this point in time it is a pleasure to see her on the go, even if she does give me lots of instructions.

Later this week we, that is herself and me, are flying to Sydney to pick up our latest motorhome and drive it home. I am quite excited that Elaine is joining me and it is entirely her decision, I merely suggested that she could come IF she wanted to and that I thought that it would work. The change from her medication pump which needed refilling every day to patches facilitated the opportunity to travel.......yippee. So Elaine decided that she would like another trip across the country, this time from east coast to west coast. It will not be a long trip, about 10 days all up, as it has to fit in between doctors visits for both of us.

We still are very aware that her disease is progressing and continue to do whatever we can can to keep Elaine comfortable and where possible treat the lesions.

Here we go more or less on schedule.

Not much to report, Elaine is at home sleeping in a hospital style bed supplied by Silver Chain. She also has a pump delivering pain relief sub-cutaneously supplied by Sliver Chain and refilled daily by Silver Chain. They really do provide a fabulous service with never a complaint or failure to perform. As of tonight we will change Elaine's medication to eliminate the need for the pump and that will hopefully make life a little easier all round.

Every day since getting home Elaine is getting stronger and more independent, a bit too independent as she is still a falls risk. In herself she is also a lot more positive and this was helped along today by a good report from our radiation oncologist. May the good reports keep coming.

We sold our van a few weeks ago and have just done a deal on a new (preloved) one. This one is in Sydney and at this point her doctors have agreed that she can join me for the trip home - 10 days across the Nullarbor. It will be great if we can pull this off travelling together has always been good.

Once again a long time between drinks.

It has been a difficult few weeks, Elaine is back in hospital and the UTI is giving her a hard time. Lots of tests, antibiotic being fed in intravenously but with limited effect. then they sent a camera inside which revealed chronic severe inflammation and took a few biopsies. They were also analysing fluids but eventually, after lots of doctor type intervention, that they could not find any infection. In the meantime Elaine is suffering and going downhill!

Then they call in the palliative care doctor and last Friday she calls a family meeting. We in the meantime are pushing for her to come home on Monday ready for her birthday on Tuesday, as she appears to be improving. She wants out of there! So at the meeting we are told things are pretty 'dire' but we are still able to arrange the release. They are very good with this and will coordinate with Silver Chain to provide us with all the special gear needed. The kids are great, especially Toni who says that she will be here all the time as needed.

Then yesterday we are told that she cannot support herself to stand up and cannot leave the bed - disaster. It appears that the night staff nearly had her fall and that one of the nurses hurt her back. I cannot believe that she has deteriorated that quickly, the previous evening she was quite able to get out of bed and stand and walk with a little bit of help) so I have long talks with her nurse but they remain adamant that she needs reassessment and is unlikely come home on Monday. We are devastated!

Then come the afternoon and Elaine needs to make short journey and the afternoon shift agrees to get her out of bed. Which they successfully do and which I do later on, with a little bit of help, to get her into a wheelchair to go for a walk. Goody we are back on track.

During the night after the meeting I realise that this is really nothing different to what our oncologist told us 3 months ago. I also asked the doctor to get me a copy of the CT scan from January 12, which she did. Reading that showed that Elaine had not deteriorated dramatically and that once again the radiotherapy had been successful. So I will reschedule our appointment with the radiation guy (i had to cancel last week) and see what can be done.