Hi Groenevelt68 The time of waiting and getting whatever news is really difficult. Then having to "deal" with the news Oh shit this is a such crapy path My thoughts and best of wishes to you Hugs Geoff ... View more

Hi Groenevelt68 yeah it throws everthing out of whack Loss of work income lisence independence. and you as a carer your life thrown upside down. Geoff ... View more

Hi Nat Tried to reply 2.5 weeks ago but each time I tried to send I lost the content. Since we have moved to a new address and in the process found that we were off the internet and had to reapply for the new address (it takes 7-10 working days for the new connection. So appolgies for the long delay. Lorraine had the MRI and then saw the oncologist yesterday with news that the tumour had less mass and swelling. The amount of lessening in size was not measured, the end description is that it is at present stable. The news is good but leaves me in suspension I was expecting some worsening She is a bit shaky when negotiating stairs and crossing the road and has been disorientated in the middle of the night when going to toilet - (and ended up falling, very luckily not hitting her head. So now we use a night light) I assume that it is a part of the side effects of the drug Avastin (Bevacizumab) However she is glad to be taking only the Avastin and not chemo drug with the less side effects. How did your 2nd opinion go. Hope there is some good stuff out there it all seems like a ride to nowhere with pauses Hugs again Geoff ... View more

Oh f_ ck Nat Oh bloody f_ck. Its a sh_t of a cancer with little to look forward to The anger with nothing to strike against, the loss of hope as you get thrown another thorn After Lorraine gets back similar results of the tumour, its consequences becomes real again, my trying to come to terms as its "reality" comes in to roost. Feeling of hopelessness as all I do is witness as my partner slowly leaving me, my anxiety my grief. the alonenes and isolation. Well they are a part of my experience Hugs for you Nat Big hugs for you ... View more

Hi Nat Yes Dennis is a problem. His stubbonness is bringing high frustrations for you. When are you due for the next meeting with oncolgist? Cant change him so please look after yourself (time out exercise what ever is best for you) Nat you are a good person doing the best you can with a presently stubbon obstical. Ps I am also guessing that he is scared of confronting further bad diagnoses and it is such a crappy disease Warmist Hugs Nat Geoff ... View more

Hi Brooke Yes its hard with frustration taken to new levels (partner has a grade 4 GBM brain tumour - a tumour siting on her language area of her brain a combination of the tumour and the drugs she cant read spell looses words names and gives up trying to find a simple word to communicate) and I'm slightly dyslexic so we make a good couple, but I get some insight into her frustration state. It can get magnified with social areas where there is some stress/anziety to communicate. Meditation could help. best wishes geoff ... View more

Nat & Sue I have been a bit reclusive seem to be dropping out of socialising, but of late putting some effort in. A friend I had made through this site appears to have died - he had lung cancer I dont have his home email so there is no way of knowing he was getting very sick and has not posted. Sue getting closer to your cruise Nat I hope you are OK & Dennis's scan has improved since November. Had no news to report as Lorraine was off the chemo for 2 months then had a MRI a month ago - that report was her tumour had slightly increased something like 37x27x?? mm (I'm a bit perplexed as the previous December report stated it had increased from 37 mm to 41mm Oncoligist said that it was measured in a different axis - so I am unsure exactly what it is doing) Her veins have been difficult to extract blood from so they decided 4 weeks ago to inserted a port in her higher chest area for needle access (minor operation under a local) This has to be done at least 2 weks before Avastin(Bevacizumab)trial as it causes slow or incomplete healing of wounds etc So today she had the second dose (done every 2 weeks)first dose she was low energy for 4-5 days then some improvement overall her energy is fair she needs rest/sleep in mid afternoons speech is not good and struggles to communicate frustration ebbs and flows. We have little hope - its a slowish decline The best thing about this is she is not having the chemo drug with its side effects. This Avastin so far has less ill effects. I am not having a good day Hugs Nat & Sue Happish Valentine Day Geoff Ps yet to check out the Borage seed oil - there tends to be a few alteratives out there ... View more

Hi Nat and Sue Nat - How did your meeting go with the oncologist Denis travelling OK? Sue that flatulence in control (hugs- I have the male sense of stupidity in this area) The MRI scan go OK? we had the same response from the Oncologist I get the feeling that it is a monitoring the tumour for if and when it starts growing The round Australia trip should be great Lorraine should start Avastin mid January. There are a few tests she will need to do to ensure that she would be OK from the possible side effects. While the drug is free on the trail, overall it will be expensive we will have to travel to Sydney every 2 weeks find accomodation/food She has been on chemo now for 7 months wants a month break for xmass. So far 2-3 weeks off it (chemo) but still taking the Clomipramine (Anafranil) (antedopal evidence that it helps reduce brain tumours)she has very low energy hard to entice her for a gentle walk so now reduced the dosage to 125mg. Her eneregy is better. She experiences boredom - her speech is effected and she finds its difficult to talk/ find words I have a mild form of dyslexia so between us it would be a laugh if was not so serious Often gets frustrated and stops trying - its isolating even for her with me Been told of an alternate/natural therapy - Flax seed oil some research shows it maybe interesting. Heard of any other avenues through this journey? Lorraine wss not interested we tend to be scaptical of alternates though there maybe some benefits. Warm wishes for christmas and the new year to you both and all others on this site Geoff ... View more

Hi Sue and Nat Had MRI scan then been to surgeon & oncologist. Surgeon was reasonably happy with the tumour, thought about the same size and had not spread to other parts of brain - so no need for operation (as yet). Then saw oncologist he said tumour had grown by 10-15% from 38mm to 42 mm (????????). He thought the present drug was not working He suggested going onto a trail with:- Bevacizumab (trade name Avastin - a drug that blocks angiogenesis, the growth of new blood vessels; and Carboplatin (chemotherapy drug) or just Bevacizumab Note a computer makes a randon selection of who goes on what combination. Subject to some further testing, the trail for Lorraine should start in mid January Lorraine is fed up with taking the chemo and is empathic that she has a month off taking chemo. So Xmass will be chemo free for some respite. She is a highly intelligent woman. Her tumour is located over & presses on her speech area of her brain. Then combined with the chemo, she looses on communication - and can get highly frustrating for her she can’t read and talk with people - life gets boring. Looking at talking books for an alternative Sue I note your comments:- "Going for walks can be a help and gets you out of the closed in enviroment" Not sure where you live but I am in Forster so please make an announcement if you ever pass through this area - I shall take appropriate evasive action of your walks (just in case this is sensitive for you, this is meant as a gentle pull of your leg and hopefully some release of the tedium of chemo and its life sentence that just hangs; never ever meant as offensive to you or Lorraine) the boat should be good for taking walks - if enough time you can get to the downwind most location on the boat on let fly - the noise is still a problem When you go by Forster I will know and wave a hearty hello Nat if still going to Europe consider that when coming home that it does not tie into when he comes off the chemo (or any usual low period/cycle). Lorraine had difficulty recuperating from this combination (come home Saturday night, she came off chemo on the following Tuesday so a day or so before and some days after was a "chemo" low period for her and that coincided with the jet lag) ... View more

Hi Nat, Sue and all others on this journey In reply to Peanuzs text above - we had a change of plane stop over bothways was at Bangkok for a few hours. It would be good to spend a few days/weekthere as a break instead of coping with 22-24 hour long flights and jetlag.Jetlag appears to be worse when coming back to Australia So if you can and can afford it and like tospend time in another country, break the journey. We spent 12 days aboard a ship going from Istanbul to Venice with 6stops/cities to explore while the ship was docked. So that is a good way oftiming for the days when the chemo makes it really hard to get out of bed -that is you don’t have to participate in the onshore expeditions. Get to knowhow your partner reacts when his bad days are/likely to be - plan around thosedays Be aware that insurance will not include for pre-existingconditions so if he gets sick over thereand is related to the brain tumour then it would be at your own expense for anyhospitalisation and new plane tickets if you come back. I never thought that wewould have trouble along this line, but while on the ship one of the crew had a heart attack off Croatia Ahelicopter was dispatched to hover over the ship during a blustery night andthen let 2 -3 crew down onto ship to then evacuate the crew member. If such ahappening occurred with ourselves I could perceive an extremely expensive bill,so there are risks monetary wise. I found the insurance offered by the travel agent was expensive. I did alittle research and found that Medicare was much cheaper (by half) and had betteroptions/payments if things go wrong in other ways (we got pickpocketed inMadrid) Re his scan - the Oncologist said the same with Lorraine's scan that residualactivity maybe there from the chemo/radiation but unlikely as hers was sometimeafter the operation and radiation treatment. Lorraine's scans were originally programmed for 3 months apart. The MRIscan previous to the last one showed a significant increase and he wanted ascan before we went and he changed her medication to a 21 day on 7 days off,instead of the 5 day medication. The MRI scan 7 weeks ago showed no increase buta thickening (?) The oncologist wanted anotherMRI just after we got back (I think there is possibility of anotheroperation should the tumour have grown - option the surgeon suggested 7 weeksago) Re Dennis and sugar - Lorraine's can be quiet picky with her food nowwith chemo and can tend to not eat enough. She has always been cautious withfood (a delicate stomach) so maybe with pre-existing food habits likes/dislikesgets magnified ? Hugs Geoff ... View more