My story begins in July 2007. I was on holiday in Snowdonia with my husband, it was our last day and we'd invited my sister and her fiance to come over and spend the day with us (we only live in Shropshire, so it wasn't a long journey for them). Shortly after they arrived my sister asked if I'd spoken to my parents. I had spoken to them the night before, I knew my mum was going for the results of a hearing test she'd had after much nagging from the family that she was going deaf! My dad had told me that everything had been fine with the results. Then my sister broke the news to me before leaving the caravan that my mums test had shown that she had 3 benign brain tumours.
As you can imagine I was pretty upset but we carried on with the rest of the day as the news hadn't really sunk in for us all at that time.
Once back home I found out more about the tumours and that they were meningiomas, tumours that grow on the protective layer of the brain and my mum had to undertake some further tests, CT, MRI etc to determine the size and position of the tumours.
At this time I remember feeling quite annoyed as time was dragging on and no surgery had been offered. I couldn't help but feel that the tumours were quite small ....... well that's what we thought (it turns out that two of them were about the size of an orange!). Anyway my mum didn't have any symptoms, she used to have the occasional migraine, but that's it.
Looking back I'm so pleased that she was well enough for my sisters wedding in November 2007 as on the 1st May 2008 she undertook her first operation to remove the largest tumour at North Staffordshire Hospital. After the operation my mum experienced spasms in her left arm and was given anti-fit medication. However, the operation had a devestating effect on her mobility and she was in hospital up until the end of June 2008 (which at the time my husband had also been in hospital having a slipped disc operation! - good times eh?)
After many months of intense physiotherapy and visits from occupational health nurses my mum was able to get around reasonably well using a stick and sometimes the wheelchair if the distance was too great. My poor dad coped tremendously well and was a great support to my mum at all times. He is a brave man!
2009 started reasonably well but we all knew that sooner or later my mum would be under the knife yet again for her 2nd tumour operation. This happened in May 2009. Mum was admitted to North Staffs once again but this time things went drastically wrong and when we saw our mum she was very drowsy and could hardly open her eyes. We went to get something to eat before coming back for the late visit (that is me, my dad and my sister) Upon our return a doctor was looking for us and informed my dad that my mum had a build up of pressure inside her skull and that they had put her on more sufficient oxygen but there was a chance that she could be put onto a ventilator if no improvement.
The next morning our worst nightmares came true and mum had been moved onto intensive care, she had been sedated and put onto a ventilator. The pressure had been so intense they had perform emergency surgery to remove part of her skull to allow the pressure to normalise. These must have been the darkest days of my life......... well that's what I thought at the time!
My mum was in intensive care for a week before she was brought off the sedation, I couldn't believe that my mum had very nearly died!
My mum was in total confusion after she awoke and we had to repeatedly tell her what had happened as she couldn't remember anything. Her mobility was back to square one and this time she also lost her speech.
Once home the intense therapy began again, this time also with a speech therapist. My mum became increasingly frustrated at not being able to speak or to write much either and I felt that her personality changed dramatically, she was extremely distant, very quiet and lost so much weight we were all very worried for her. She also experienced very bad muscular pains in her leg and arm, which hindered her mobility. It was so very sad to see my mum like this and not knowing how to really help her? Not forgetting at this time my mum was still without the piece of skull they had removed. This they had placed in her abdomen wall so her body wouldn't reject it when replaced (and also to stop the hospital losing it!)
At the back end of 2009 my mum's neurosurgeon said he wanted to put the bone piece back, a small operation that would mean mum going back in just for a few days. We were all looking forward to this as we had been told that mum's speech should improve once this had been done.
We were all geared up when we became quite concerned with some random pains my dad had been getting in his legs and feet. After much persuasion he went to the doctors where he was sent to the hospital to have further blood tests. He was found to have deep vein thrombosis and was immediately put on warfarin he also went to have x-ray's on his chest in case the clot had reached his lungs. This was when we found out that the doctors had picked up on an abnormal cyst on dads kidney, so he was sent for further scans and it turned out to be a tumour.
2 weeks later (Oct 2009) my dad was in Princess Royal Hospital (Telford) having a radical nephrectomy to remove his left kidney. The tumour, luckily, was contained within the kidney and had not spread to any major organs even though the tests came back saying it was cancerous.
At the same time my mum was back in North Staffs having her cranioplasty to put her bone piece back into her skull (Nov 2009).
So as you can imagine myself and my sister spent lots of time swapping rotas for visiting with one of us with my mum and the other with my dad.
My dad came out of hospital after 6 days but took him an incredible amount of time to recover as he had problems with his wound healing. My mum was home a week later and myself and my sister helped out as much as we could with cooking, cleaning etc.
My mum was vastly improved, I felt I had my mum back and her speech was so much better, we couldn't shut her up!!! Eventually she started attending a brain injury group called Headway, who were brilliant in aiding my mum's recovery.
Everything was going ok and we thought that things could get back to some sort of normality before mum had her 3rd brain tumour op.
However, we spoke to soon as mum was back at the doctors before Christmas with a potential liver problem. After an ultrasound the doctor referred mum to a urologist (March 2010) and we found out the next devestating news that my mum also had kidney cancer in the same side kidney as my dad - what are the odds????
So on the 26th March 2010 my mum had a radical nephrectomy just like my dad did a few months previously. My mum spent her 62nd birthday in hospital and was home 10 days later.
While she was in hospital I managed to speak with her consultants registrar, who was most helpful. We knew mum's tumour had spread to part of her diaphragm and was told that some of the diaphragm wall had been removed but they didn't find anything else unexpected.
We also know that they found some lesions in mums lungs, but are not 100% sure that are cancerous? We are now waiting for the pathology results as there has been talk of using either chemotherapy or sutent to help with any remaining cancer cells - if any?
So that is my story up to date. It is the first time I've put into words what has happened over the last few years and the first time I've really talked about what happened. The last few years have been an emotional rollercoaster, they really have and at this moment in time I'm finding life hard to cope with - maybe it's all catching up with me??? I feel totally lost and don't feel like I know enough about what is happening with both my parents as we have had no support from anyone, not even any information leaflets from the consultant. I have had to find all my info from either this site or Cancer Research Uk.
I hope I can find people on here who understand where I'm coming from just so I know that I'm not alone.
Sorry my story was so long I hope you stuck with it?
Best wishes to you all
Joy x
