Wicked and before!!

I have had a few hiccups - I could not keep my food down late last week and I phoned the pallative care specialist who was concerned about my fluid levels and told me to concentrate on taking the fluid medication. This meant I put some of my painkillers on hold - it was a very hard ask and I spent a very painful day - it was pretty unbearable.

The next morning I still had trouble with the nausea and vomiting so she put me in hospital to get anti nausea drugs on the drip. It was reassuring to be somwhere I got the help I needed. I had scans and blood tests and on Monday I had 1.1 letres drained from my right lung. It seems the tumors and flood have now progressed to my right lung. This is bad news. The doctor appeared at my bedside at 6.40am on Sunday morning to let me know the results of the scan. This news was rather devastating.I feel very confused about what will happen and how it will happen. I know I just have to concentrate on each day and the challenges it brings.

I got released on Tuesday - so we could go to see Wicked - I really enjoyed it and was fine for the performance - you worry about how you will be. I am pleased I was okay. Great show.

a hair do can go a loooong way!!

I have lost a lot of weight and feel I look rather 'guant'around the face. I decided this morning if I got a hair cut and blow dry that would perk up the face!! It has worked really well - TLC for yourself when you are sick is great. I have really benefited from an amazing reflexologist who puts me in relation land when I visit with her. I have friends come by who also have given me foot massages - there so appreciated.

The Brisbane Floods

I have had a pretty good week - pain control has been good and I have been in good spirits - I have had the benefit of visits and telephone calls from friends - so comforting and reinforcing. But, Brisbane and surrounding areas have been hit by terrible floods and devastation. It is all so sad and makes my problems shrink into insignifigance. Like so many others we have been looking at the situation from the comfort of our lounge chairs with electricity and all the comforts of home!!How much you pray that these affected people get the comfort and help they need.

The Pallative Care Doctor

Today we went to the pallative care doctor - really liked her - I liked her frankness and the way she put you in the picture and she actually examined me!!!!


She explained why I had the changes to my medication and showed us how the fluid is now around my liver, heart and stomach and also into the other lung area. All not good news. We asked her about how long I would have and she told us usually someone with pain increasing like mine was had 2-3 months. This put it in my face a little - not too many weeks. I have to spend this time the best I can especially while I am still able to get around. I am going to see her again in a week so we can see how the medication is working.

Pallative care ..........................

My visit to the oncologist

On Tuesday afternoon I was so pleased to be going to the oncologist. I had all my questions and problems worked out before we went. It had been 7 weeks since I had since him.

Using the pictures from the ct scan he told me that I had a lot more fluid and changed a lot of the drugs I was taking. I noticed the difference after the first night.

The oncologist then gave the bad news that I was at a stage to see the a pllative care doctor. I certainly felt that things were not good. He said that he could not foretell how things would go in the next few months and the pallative care doctor would be able to a help in prescribing effective pain killers. He would have his secretary make the appointment and let me know. On the way home and the appointment was for today Thursday 6th January.

After we got home I phoned the girls and talked to one son in the morning. The fact is that the disease has progressed to such a state that it is killing me and I am dying!!Even though I feel daunted but okay by this - I worry about my family and leaving them and the impact this will have on their lives.

How I was at Christmas

As December progressed I could feel my body not coping with disease and my pain increasing. I developed a disturbing and distressing cough in the morning which left feeling drained and not too good for the rest of the morning. Into the afternoon I started to feel better and by the evening I was feeling pretty good.

I went to the GP for my coughing eposides. I just felt so down and drained by it.
She gave me a anti nausea table which unfortunately did nothing to ease the problem. I soldiered with increasing pain which I was not able to manage too well.

I had a lovely Christmas catching up with family - it was a shame it was hindered by my condition. On the Monday following Christmas I about to go to bed and when I went into the bedroom I felt I could not breathe and I panicked. I asked John to take me to the emergency at the hospital. After we were there a few minutes I calmed down and was breathing okay!! Of course, I still had to have all the tests - chest xray, ct scan, blood test, ECG - and four hours later we went home!! We since realised it was probably the smell of candle I was not used to that had been put in the bedroom which had been closed up. We got home at 2am and I felt a bit silly!!

Bu those scans have since been useful!!

By New Year's Eve my pain was getting me down and I tried to get a doctors appointment to get stronger pain killer - My daughter in law who is a pharmacist in the USA thought my pain patches were not strong enough. Because it was a holiday weekend it proved dificult to get a doctor's appointment but a good friend who is a GP wrote me a script for an extra 25 patches - it was a lifesaver!!

My next appointment with the GP was for Thursday 6th January. On Tuesday the 4th I rang the hospital to see if I could get this appointment changed to later that day. Hurray - I could.

Since the trip

Ourf trip to the USA was such a blessing - we had great times with everyone - reading stories, playing games - it was fun.

Upon returning I had a CT scan and went to see the oncologist - I was a little worried as knew things were worse than before we went away. His prognosis verified this and he suggested some more chemotherapy. I always said I would give it another try!!!

Before my first session I had a cathether put in my chest. I went under and they inserted it - the I went down for my first chemo session. This chemo was using a different drug and I would have it once a week for three weeks - one week off - then once a week for 3 weeks again. The sidd effects from the first session were not fun - fluid filled feet and legs, flu like symptoms etc. When the oncologist was aware of the symptoms he said the risk was not worth it and he wanted to go back to Alimta the next week. He also told me that the likelyhood of it working was low.

The side effects of the chemo really locked me around and after prayer and comtemplation I decided I was not going to go ahead with Alimta.

I strongly felt this was the right decision. Eight weeks on I still feel it was the best decision for me.

Update for the future

March last year was the last time I wrote on this site. A lot has happened in the meantime. I went on to have 6 lots of chemotherapy using Alimta. The first 3 had the tumours receeding and the last three showed no change from the first three. Kept the status quo!. This gave me the opportunity to enjoy life and help my children and grandchildren. We had a good time. I was especially nice to spend time with Andrew and his family before they returned to the USA in May and also to see my other son Stephen pac up with his family and take them to the US to embark on a MBA.

But.......by late July I noticed an increase in my pain and I could feel a nodule near my biopsy wound. We sent to see the oncologist and he recommended I have some radiation therapy which we could get in before we left on our trip to the US to see our sons and their families.

The oncologist assigned to me for this treatment was not very optomistic at all but I started on 10 days of radiation near my left breast. It did not hurt but afterwards left a burning sensation for a number of weeks. I did not particuarly like this treatment.......of course I am not supposed to like treatment!! Around the time I started this treatment I started coughing up phlem at night and early morning. I found this quite distressing but they could not tell me if it was from the disease or from the treatment.

I finished my treatment on Friday afternoon and we left on a jet plane the next morning to Los Angeles - then on to Albany New York. It was a long day - very tiring and probably a bit long for me.

I wasn't sure if I should have come in the first few days as I was very tired and had a lot of problems with phlem. But, we soldiered on..............

Miraculously, I was during our 4 week trip and had a lot of fun with our grandchildren and our family. My biggest problem was feeling tired and coughing and phlem during the night and early morning.

Great news

Thursday was good news day!! I had a scan on Tuesday and my appointment with the oncologist yesterday. As he looked at the pictures and compared with the last scan from the 29th December he was pleased to show how my tumors had shrunk. It was quite noticeable how where there were lots of bumps in the tumors along the chest wall it was now a lot flatter and smaller. In the previous scan around my windpipe on the left side the tumor could be seen but it has now receeded from this area and it was clear. So the Alimta is working for me at the moment. Wonderful. Not only is the Alimata working but I know it was also the faith and prayers of so many on my behalf. Before my appointment I could not call the outcome myself as the pain had not subsided but the oncologist told me that the pain can still remain. I was happy to keep going with my chemo. So lot no 4 was administered!! My white blood cells were down so he is going to make my next session 4 weeks instead of three.

I know this is not a cure but will certainly give me some more time and lengthen the prognosis.

I still strongly that Heavenly Father has a plan for me and he is looking after me.

Nearly 1 week since beginning of round 3

I seem to be coping with this round a bit better - extremem fatigue set in last Saturday afternoon and seemed to ease up today. I do get sick of just sleeping and lying around on those days. I had my first battle (only a little one) with nausea today - I increased my pain killer patches last night - so I am pretty well convinced it is the pain killers brining on the nausea. As my body copes with this stage of the treatment I notice that it gets hard to keep positive about the treatment and the good it is doing me!!

I appreciate all the love and support of my family and friends - they help to keep me going. Een though I am not always able to accommodate their invitations I appreciate being thought of.

Round 3

John and I fronted up to the hospital on Thursday for my third lot of chemo. The nurse was unsure if I would be able to have it as the results of my blood test were not good. After asking a few more questions she rang the doctor and he asked that they wait till he came to see me. After the wait he arrived and we discussed my progress and he decided to go ahead with the chemo and that he would arrange for 2 units of blood for a transfusion. All went well - but it turned out to be a long day - we left the hospital at 6.45pm.

I have been doing okay since then and the tiredness is starting to set in today. The extra nausea drugs finish today - so we will see what tomorrow brings.

The prolonged nausea I have been experiencing is most likely from the pain killers but the doctor decided not to change them as most things will bring the same result.

I am feeling positive and ready to tackle this round - here we go!!

Round 2 has been better!!

I have handled this round much better - but I have still found nausea challenging. Today for no reason I can figure out I had bad nausea which basically wiped out the day. Last Thursday was also a very bad day. I relish the good days. A bad nausea day can put me in the doldrums and having feeling very sorry for myself and just wanting things to be like my old life before mesothelioma.

I will be going for round 3 on Thursday.

Update on Round 2

I have been rather slow to post how this round is going...sorry. As on the 1st session the first couple of days were okay. Sunday I was not feeling too good - again the nausea kicked in and I have had it ever since. I must have a very sensitive stomach!! I have taken more nausea medication this time. Some of it works well and some only makes it tolerable.

Monday and Tuesday I particularly found mentally challenging as I was feeling terrible and the possibilities of my situation seemed very confronting. I found staying positive over these few days a challenge. But of course things do pick up and the the last couple of days I have coped with nausea better. I don't seem to have got as tired this time - whether that has been relevant to the change in my painkillers I am not sure.

I visited with a doctor on Thursday afternoon who was a very kindly gentleman and also told me that I will never be a statistic and that I must remain optomistic. He did brighten up my outlook.

Treatment 2 - Saturday

My treatment went okay on Thursday with the doctor endeavouring to addrss my nausea troubles. I took a different drug before the treatment and as he feels the nausea so late in the treatment may be due to my pain drugs so he has changed them from ocycontin to a patch I wear on my arm and only have to change every 72 hours. I will also take some other tummy medicine - let's hope we are on to something.

On the way home from the hospital I suggested to John we go away for a couple of days as based on last time I felt okay for the first couple of days after the treatment. So we have come over to stradbroke for acouple od days. The waves and sea breezes are good therapy and so far so good.

Next round starts tomorrow

I have survfived the first round of chemo and will front up tomorrow for round 2. I have found you have to put a lot of work and faith in to keeping positive,- even when you don't want to, enjoy what you can. I feel pretty úseless'most of the time - not able to help where I would like to, not able to get the things done I would like to - someone said yesterday at a support group John and I attended that you can never go back (sometimes I want my life before I got sick so badly) I just have to make the best of each day and what it offers and have hope. Hope is such an important part of moving forward and not looking back. Of course I hope that this treatment is going to stop those cancer cells in their tracks for a while!!

I have a picture of my sister who passed away in 2007 on the board in front of my desk and I think of the heroic way she handled her illness which was a lot more devistating than mine and it gives me a lot of strength.

Day 17 - I am a slow learner

I survived today without any nausea - it was great. Yesterday I started off in the morning with nausea and I was going visiting an aunt so I took one of the magic wafers and I was great for the rest of the day - I felt normal again!!

I am a bit stubborn and take a long time for some things to sink in - I will now take medication for nausea if I need it - I won't suffer through!! This should make my next session of chemo (next Thursday) more endurable!!

Thursday - 2 weeks following my treatment

I was feeling pretty good this morning but tonight I had some nausea again! I need to get to the bottom of why I feel this way. We plan to go to a support group next week maybe we can do some follow up there.

Day 13 Wednesday

I had a good day - started to feel on top of things.

Day 12

Fatigue was still there today but I was not quite as tired. I had a special treat this morning of going to a special meeting where an apostle spoke. At the end of the meeting he shook everyone's hand and when I shook his hand he said we wanted to meet me and he held my hand warmly and I felt his strength and the spirit strengthened me and tears flowed. It was not a great thing but a very special thing. We also had a family activity today which also lifted my spirits. It has been a great day which I am so thankful for.

Day 11 Monday

We had a visit to an organisation linked to centrelink this morning where they asked me a lot of questions about my symptoms and what I can and can't do. I don't know if this encouraged my feelings of depression today but I certainly struggled today to keep positive. This afternoon I had a reflexology session which was absolutely 'wonderful'and was very relaxing. I am planning to have them every two weeks as it is great for feeling relaxed.