It's been a while since I last posted and there is one reason for this - diet has gone out the window. I'd like to find it again and the motivation to do it. Everyday I tell myself tomorrow will be the day! Hasta Manana, but as we were told when we were kids tomorrow never comes!?
Some days I've been good, some days I've allowed myself to give into whatever I fancy and indulging in take away food and wine. I know the reason for the comfort eating, and the general feeling of wanting to curl up in a ball and hide away from the world or fast forward life a bit - anxiety, major anxiety!
I can't convince myself to feel any other way just now. I try to think positive about a lot of things, but this anxiety will only go once Isla's dreaded scans have been and gone. We were due in at hospital a week today, for a few nights stay in hospital.
However, a phone call this morning to say the MRI has been cancelled as they can't find an anaesthetist and the flood gates have opened. The lovely secretary on the phone was very sorry, (I don't think she knew tears had started making tracks down my face), especially when I explained that it needs to be done before we see the liver professor on the Friday, a few days later. The liver professor visits from London twice a year only to oversee patients. Having the results from the MRI is obviously preferable. The secretary then went on to say that they were trying to reschedule Isla's other scans aswell to coincide with the later date offered for the MRI. I told her I would prefer that they left those dates as we will still need to see the liver professor on the Friday so we will still have to travel to hospital that week, and having the results of the ultrasound and maybe some information from the MIBG would be preferable to no information/update at all. We live 67 miles away from the hospital Isla was treated at, obviously that is a nuisance and takes over an hour and a half to get to the hospital due to the volume of traffic in the city. It's fair enough to say reschedule all the scans so they're on the same week, but for 2 reasons that is not good. 1 - we cannot reschedule to see the professor, we would have to wait for 6 months to see him on his next visit (one reason I wish we didn't live in rural Scotland). If scans are good then this is no problem, but we don't know until the scans are done. 2 - my anxiety levels are creeping up all the time and to reschedule scans would not mean that they go away, it just means they will escalate.
Hubby's had problems with high blood pressure since Isla was diagnosed, and only recently has it started to improve. A blood pressure check yesterday showed that its creeping up again. I don't think it's something that will ever go away - anxiety before scans. Our consultant is not at the hospital today, she is away on a meeting, so she can't confirm whether they will leave the other scans or reschedule, the secretary will pass on the information for her tomorrow, in the meantime I hope the other department doesn't give those appointments away to someone else and reschedule Isla for a later date.
Currently Isla is getting her major scans every 6 months, with an ultrasound and urine test every 3 months. Isla was diagnosed with stage 4 neuroblastoma at 5 months old in April 2009, she came through a lot at the very beginning of her treatment, and luckily pulled through and improved. Lately I've been thinking back to where we were 2 years ago. It was a very anxious time for us.
Isla had the intitial chemotherapy that they planned for her, but it didn't have the effect the doctors had hoped, her liver was still three quarters cancerous, so she was given another two rounds of chemotherapy and again scans performed to see if the situation had improved. With the results of those scans, the doctors in our hospital were trying to co ordinate a meeting with a doctor from Great Ormond Street Hospital and the liver professor from Kings, who became involved in Isla's care a couple of months into her treatment. A meeting was arranged in London and Isla's scan images sent down for the doctors to decide what kind of operation Isla would need. There was word of them removing half of her liver along with the main tumour on her adrenal gland, and we would have to travel to London for this operation. Unfortunately, surgeons were meant to attend this meeting to make a decision and none turned up! We were left in limbo, knowing Isla still had cancer in her primary tumour and a large area of her liver. Isla's consultant made the decision while we were waiting on decisions from elsewhere to go ahead with another round of chemotherapy. We got word that another meeting was able to be arranged over tele link with all the professionals involved but it was going to be the week before Christmas (a month away) before this could happen.
With Isla still having cancer present, another round of chemotherapy was needed. During this time, we also managed to arrange getting married at short notice and move house. Anxiety levels were at their highest during that time! We got word at this time that Isla's urine test had normal readings, so a negative for detecting her cancer! We should have been celebrating this fact, but we knew she still had cancer and we needed to know next steps..... when was the decision going to be made on cutting out the primary tumour and what was going to happen with her liver?
With Isla having had two more rounds of chemo since the last scan images, more scans were performed for an update just in time for the liver professor's bi annual visit to our hospital. The last time we'd seen him was at Yorkhill, Glasgow with the liver consultant and the oncologist overseeing her care there too. We had a big discussion about possible scenario's with Isla's liver, possible diseases or damage that may have been done and possible operations that may be needed including transplant. This time we'd be seeing him with Isla's main oncologist and the gastro doctor at the hospital who'd never seen Isla. I was annoyed with this doctor for never taking the time to visit Isla, to introduce himself to us. Isla had been in a critical state for quite a while at Yorkhill and she was only transferred back to the hospital Isla was originally treated at as long as this consultant was overseeing her care too. He never acknowledged that Isla was under his care, and I'm thankful that Isla never ran into any difficulties affecting her liver/kidneys or fluid on her abdomen again.
We got Isla's scan results at that meeting with the liver professor that the cancer was now gone from Isla's liver and the only activity was an area of her primary tumour. She'd gone from three quarters of her liver to half to nothing in those last four courses of chemotherapy. The decision was made at that meeting not to operate on her liver, but a biopsy would be done for various tests, and the hospital could go ahead and remove the primary tumour. We were given the option of trying to arrange the operation as soon as possible or waiting until after Christmas. As soon as possible was our decision, celebrating Christmas was not a priority. The operation was scheduled for the 23rd of December almost 3 weeks away.
Luckily the operation succesfully removed all her tumour which had shrunk to the size of a golf ball, but the surgeon did remove suspect tissue from her pancreas and removed two lymph nodes. These were sent for testing to see if they were just chemo damage. Unforunately, this tissue was cancerous. The cancer had a chance to spread between the last scans and the operation. Isla continued with treatment, high dose chemotherapy and bone marrow transplant, radiotherapy and then high dose vitamin a medication for 6 months. This treatment finished at the end of December last year.
During that last year of treatment Isla did not have MIBG, (an isotope that detects her type of cancer) scans, just ultrasound every 3 months, my memory completely fails me on whether she had MRI scans, as these are preferred by the liver consultant? We were due to see the liver professor at the beginning of December last year, but he couldn't travel due to the snow. His appointment was rescheduled for the beginning of February.
Isla had her end of treatment scans just prior to the visit from the liver consultant. The MIBG scan picked up activity in her liver. Otherwise the rest of Isla's scans showed no tumours or activity, and her bloodwork was improving, along with liver function. Isla's MRI scan and ultrasound showed a lumpy liver and the flow through it was restricted but ok. All tests performed on her liver have been negative for any other diseases, and the feeling is that it is just damage from the cancer and chemotherapy, and this is why it is perhaps holding onto the MIBG dye. We were hoping to be told at this point that Isla was in remission, but they couldn't conclusively say this was definately the case. As she was well and all other tests were negative for cancer, it was agreed to repeat all scans just prior to the liver consultants next visit at the beginning of June.
Four days in hospital in June, scans done and a meeting with liver professor without MRI results (as the report was not ready), only the ultrasound and intial MIBG results. The ultrasound showed a small improvement in the liver flow, spleen about the same (she has a large spleen), and once again the MIBG was picking up activity in her liver, but no report on how much at this stage. The liver professor and oncologist decided that the general feeling was the Isla was in remission, just that the damage was holding on to the dye, and we would continue to repeat all scans every 6 months in the hope that the liver improves and the activity of the dye in the liver continues to reduce so that we can say for definate "yes, she has been in remission all this time! She has just had liver damage and the liver is repairing". This is the best scenario, but it is a waiting game to see if this is the case.
Isla had an ultrasound on her abdomen performed 3 months ago, along with her urine checked. I felt that the ultrasound looked better. When the consultant phoned to give us the results of her urine test, she was also able to tell us that the last test that they were instructed to carry out on her liver biopsy had been carried out and it was negative. We had to wait 21 months for that result, a test so rare only one lab in Europe performs it, but can only do it when it has funding. A 21 month wait, but finally another negative.
So, this is where we are at today, the 6 months scan and appointment with the liver professor looming. A desperation for the scans to be done and out of the way and reassurance once more that things are improving, that Isla is in remission, as it was declared by the doctors 6 months ago. I long for the day that they can say, the MIBG scan was clear, no activity, 100%. We have to live with that element of doubt.
I have allowed myself to believe that she's in remission since the last scan, she's been very well healthwise. In January she began attending a 2-3 group three times a week and has picked up the odd sniffle. One ear and throat infection a month before last scans, which increased the anxiety then, and a couple weeks ago she became ill again. For mixing with other children of all ages in a nursery setting, she has done very well compared to some other kids which is comforting.
When she was ill a couple of weeks ago, I think she had a flu? High temperatures, clammy skin at night, sleeping or tired during day, no appetite, she had a little cough and slightly blocked nose. Of course, as scans are approaching there is an element of doubt in my mind that it was not flu, I can't help that. I need the reassurance that things are ok. Yesterday was the first day that she didn't nap throughout the day since she was not well and she was interested in food again. The tiredness and no interest in food is a worry and I try to drown out those worries, yes with comfort food and a wish to fast forward or escape from the life that we face.
I have tried to get back to a sense of normality during the last six months, think about my career and the future. It's over two and a half years since Isla's diagnosis. I was not able to return to work following maternity leave, and we have been paying the mortgage on a house that we don't live in as it was too small for our family up until last month when it finally sold - so to say money has been tight is an understatment! I am a primary school teacher, I qualified in 2004, and got my guaranteed first year teaching. Unfortunately since then I've picked up temporary jobs, not a permanent one and the situation is even worse now than it was when I started. Lots more teachers trained and less jobs, and not many permanent posts offering financial security. I don't want to work full time, I'm quite happy working days here and there as a supply teacher. But, financially I would love to have a full time permanent job to not give us that worry about the future. I just could not put up with the stress associated with a full time permanent teaching post. Morale amongst teachers is very low, many factors contributing to this, and I fear that the one day strike planned for 30 November will not be the last.
My husband is an engineer in the RAF and looking to his future. His 22 years is up in April 2013, which is not long really. The worry about a job and home for the future is there, and I do not currently have financial security to support us should he be out of work for a while. The current economic climate is a constant worry for what the future holds, will we have enough money to get a mortgage and deposit on a house, would we be able to afford rent, will there be a job for him when his time in the RAF is up? We are both studying part time in the hope of improving our job prospects. I keep reminding myself that there are more important things in life, and we definately know that, it doesn't stop the worry being there. My husband is currently based at RAF Kinloss, welfare have enabled him to stay in the area, (despite the news that the new nimrod was cancelled and then the subsequent news that the base was closing), and not move him to another base so that he can continue to be there for Isla throughout treatment, keeping Isla's treatment at the same hospital. The recent news that the army are moving into the base in July next year has raised questions as to what will happen to him from July 2012 until his time is up the following year.
Every day I tell myself how lucky we are that Isla is alive, appears well and enjoying her childhood. She is a survivor of an illness that claims the lives of too many. She was so close to losing her battle in May 2009, but she's here and to any stranger looking at her they wouldn't know what she's been through. Just last week, saw the death of a young boy of 4 years old who was diagnosed at the same time as Isla, treated in the same hospital in Glasgow. That was hard for us. Each death of a child we've met on Isla's journey is hard, each story of difficulties in treatment is hard. Even the stories of survivors and the difficulties they face is hard to hear. The death of that young boy was hard, it brings up memories of a time you've filed away, that you forget is really difficult to face. You get to know many families living with childhood cancer and it seems as if the bad news stories far outweighs the good stories. Statistics are skewed to make us believe that childhood cancer is rare, that most children survive, I wish this were true.
Today I feel let down by the 'system' for having to reschedule scans, not being able to reschedule the appointment. I hear regularly of families let down by the system, trying to arrange appointments, treatments, having to travel long distances for treatment and appointments. Always at the mercy of life outwith their control, relying on things being done in good time in the hope of the best outcome. All the waiting around that has to be done.
I wish we had more control over our lives, no reliance on the economic climate for jobs, houses, mortgages, health care. As a teenager I couldn't wait to grow up and make decisions for myself, live life the way I wanted to, no constraints, how naive I was. The things that used to make me down were not important, but I felt that things would be better once I was old enough to live my own life.
I watch my oldest two daughters, and worry for them. I want them to treasure their freedom from responsibility and things outwith their control while they can. My eldest will be sitting exams next summer and old enough to leave school, what job prospects is there out there for her? I wish the children of today had less stress on them, they deserve it before life in the grown up world.
It would be ideal to just start a new life, wipe the slate clean, take away all the bad and never have to face it again. Not have to live under a system that constrains you, controls you. Unfortunately I can't do that. I have responsibilities as a mother, my most important job, one that I treasure and want to be the best at. I also can't ignore what we've been through, in one sense it would be easy to forget it and ignore all the other children suffering, normality might come easier. I understand the people who walk away from it all. I can't and for that I will suffer anxiety, stress and worry, while also trying to be positive, upbeat, looking for fun.
So forgive me my increased anxiety just now, comfort food is the only way I know how to deal with it? 2lbs up so far, and I'm hoping it doesn't get out of control!
Thanks for reading x
