Well it has been quite some time since I wrote. I was planning on writing once I had had my first radiation treatment so now that I have had that here I am!!
At the start of Feb, Cam and I went on a lovely holiday (without the kids) to Margaret River in WA. It was a well deserved relaxing break and we had a lovely time. It was a lovely location - we were staying at a resort right on the beach that was also near the wineries. It was just lovely. The ocean was very cool and I did not manage to brave the water at all. We spent our days going on walks and visiting wineries - it was just lovely. We did have one little episode where I had severe chest pains and Cam called an ambulance and I landed in Busselton country hospital. The doctor did ECGs on me and after consultation with Dr Taylor they let me out after a (thankfully) short visit.
When we arrived home we finally moved into our “broken house” - which Tiernan has now told us is no longer broken. In fact it still has a little bit to go before it is fully fixed but it is very, very livable. Downstairs is all finished with the exception of the vanity sink and upstairs is nearly finished with the exception of the doors being painted, fly screens going in, shower screens going in and the carpet going down. Outside still has the paving to finish, turf to be laid and driveways and front fence to go in. It is just wonderful being back in the house - the stuff dreams are made of!!
The little munchkins are both going well. Tiernan is as full of life as ever and very excited about being back in the house. He loves Arielle to bits and is the most loving big brother ever. We have a nanny (Natasha) looking after them on Mon, Tues and Wed and then they are both in childcare on Thurs and Fri. Arielle is now 6 months old and going along brilliantly. She is such a content and happy baby. She sleeps 11 to 12 hours a night and always wakes up happy and smiling. She rarely cries however she loves the sound of her own voice so often yells and squeals. She has also worked out turning on her music in her cot by herself and loves to do it at 3am!
Cam is doing the Energex rescue helicopter volunteering one weekend per month and one day per week. He is still enjoying it and is now able to do some of his duties without supervision. It wont be too much longer before he is able to do all duties without supervision. He is starting to do some of his normal IT work again in addition to doing all of the finishing off at the house (paving, painting, etc).
I have been feeling really well. I have had more energy and zest for life than I remember having for a long time. Life felt like it was just starting to pull itself together again (finally). On Monday I started radiation and it was a very easy process compared to chemo. Prior to radiation I had a CT scan just to make sure they had a comparison CT for the end of radiation. Dr Taylor (Kerry) did not even book an appointment for me for the results as it was just supposed to be informational. Unfortunately on the way home from radiation I received a phone call from Kerry to say that a new growth was found on the CT. So started the merry go round all over again. This week has involved a tonne of tests (CTs, bone marrow tests, PET scans, biopsy). I had a full body CT and luckily it only showed up the one new tumour. The bummer is that is it a very fast growing aggressive tumour and in the 7 weeks since my last CT it is already 3 cm x 3cm and yet the original tumour had shrunk. Apparently this is quite unusual to relapse so soon after treatment finished and also for it to be so agressive. I had a bone marrow test and this time I was quite heavily sedated so it was not an unpleasant experience at all. I am still very sore (they do a drill punch into both hip bones) however it is not too bad. We dont yet have the results for that test. Then I had a PET scan - this determines active cancer. Unfortunately the results of this test showed that the new growth is active cancer. This is significant as in the previous PET scan there was no active cancer so it means that this is a relapse as opposed to not getting rid of the cancer initially. The good news on that though is that the original mass was not PET active so it definitely is in remission.
Then yesterday I had a biopsy on the new tumour - last time this was not a stress and caused very little pain so I was not worried. Prior to the biopsy they did not give me any sedation which I thought was a little unusual but did not get too worried.When I was taken into the room for the biopsy they explained that I could not actually be given sedation (panic set in at that point!!). Apparently the mass is abutting my coronary artery and in order to take a biospy they needed me to be fully awake and able to hold my breathe in order to be able to miss hitting the coronary artery (nothing like a bit of pressure). The other problem was that there was a very real chance that they would puncture my lung during the process - at this point I had to sit down as my head started to spin!! I had some local anaestetic put on my chest and they did end up giving me some very light relaxing drug - so I was fully aware of the whole procedure although due to the local there was only a little pain. The radiologist was the one who originally did my first biopsy and used to do my MRIs and he was very supportive and held my hand each time they had to put a needle in and I had to hold my breath. In the end they did put a slight hole in my left lung. It caused a fair bit of pain when I breathed but luckily it has healed now. I did have to stay in hospital overnight though.
I am trying to be positive though and considering how aggressive this new tumour is I am very grateful that Dr Taylor ordered the CT this week as otherwise it would have been another 6 weeks before I had a CT and it would have grown heaps in that time. I just saw Kerry and they do not have the biopsy results however as the growth is a tumour chemo has to start again. I will be having another port put in next Tues or Wed and then starting ESHAP chemo the following Monday. ESHAP goes for 5 days (fun stuff) and then I will remain in hospital until my body recovers (two to three weeks in total). It will involve 2 GCSF injections per day (the ones that I react to) so they will have to use other drugs to manage my reaction as my body will not be able to recover on its own. It will probably also involve morphine injections to manage the pain of the bone marrow production starting again. Once my counts get high enough they will harvest stem cells from me. These will then be frozen. I will then get a week at home to recover a little more and then the whole process will be repeated. Then I will have a CT to determine if the cancer is under control. Once it is under control I will then undergo a high dose chemo called BEAM - this is a 6 day regime that wipes you out. Then I will have a stem cell transplant to enable my body to recover. It generally takes 10 - 20 days for the stem cells to graft back in your body and this whole process will involve 5 - 6 weeks in hospital. This usually has a 60% chance of working however given how quick it has come back and how aggressive it is Kerry is quite concerned. The next step will be a sibling stem cell transplant which would involve some other chemo regimes and then receiving the stem cells harvested from Nat, Ben or Tim. That is a much riskier process as there is a risk of a problem called graft versus host. Basically you receive someone else’s immune system and when their immune system is put into your body there is a risk that it will reject your organs and cause problems.
So the next few months will not be fun but hopefully I have learnt what worked and did not work last time and with the support of wonderful family and friends I will get through this.
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February 23rd, 2007 at 9:09 am
Bernadette,
You’re in our thoughts and prayers, sweetie. SLR XXX
February 23rd, 2007 at 12:51 pm
Hi Bernadette,
Can’t believe you have to go through this hell again, but hang in there and stay positive. Our thoughts and prayers, always. Love Aunty Mary-Ann XX
February 23rd, 2007 at 6:50 pm
Hang in there Love and light to you, Allan
February 24th, 2007 at 10:41 am
Hello! I am so happy you are in your “not broken anymore”home. Also, a nice vacation away with the hubby! I kept checking and checking and was so relieved to hear of those positive things. As far as the ‘other’ things, it is really hard to wrap the brain around it all, and it is your life. I was loving the positive way you ended all that information. You are really truly an inspiration, perhaps someday you will be able to help others go this horrible ordeal, As always, you are in my prayers. Your children ( and dear hubby ) are blessed to have such a strong and wonderful mother and wife. !!
nina
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February 28th, 2007 at 8:18 pm
Hi Bernadette
I’m Nat’s friend from London. Been following your story and would like to say you are truly amazing! It’s so insperational to see that you remain positive throughout. Wishing you a speedy recovery. x
PS. I have booked my self in for my first ever blood donation in March, all thanks to you for convincing me…
March 2nd, 2007 at 2:29 pm
Dear Bernadette,
You are in my thoughts and prayers, I often “check up” on you via your blog and with my cousin (Nat’s friend) in London. I am sincerely so sorry to hear your latest news, it seems like a very long hard road you’ve travelled since we shaved our heads last year! If you are allowed visitors and you ‘need’ a new face to visit please don’t hesitate to email me and I shall gladly stop by for a quiet hello.
March 4th, 2007 at 7:35 pm
Hi Bernadette, it has been so long since we have seen you. The last time we saw you we came for lunch and saw Tiernan for the first time. We read your update regularly and think about you all the time. You have a wonderful attitude and are an amazingly strong girl. You and your beautiful little family are in our thoughts and prayers.
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