Spent all of 2012 and up to July 2013 going to the GP with various minor ailments when due to a bad blood test he sent me for Ultrasound scan on my Liver. A diligent Radiographer found a tumour on my Right kidney, there for classified as ‘found incidentally’ I have difficulty with this term as I had been going to the GP lots and apparently the tumour would have been growing for many years, so I would class it as failed to find or detect. When I formally challenged the practice I was informed that I should pee blood, on Google it is said only 50% of KC patients pee blood! Being dissatisfied I changed to another practice who have been excellent to date.
9th July 2013 Referred to a local hospital with very slow/ poor time line and having been advised by the consultant that ‘the job was too big for him’ I was referred on to another hospital as time passed I contacted The Spire Bristol hospital (Private) on a Tuesday, consultation Thursday, operation on following Monday (5 August 13) Laparoscopic Nephrectomy of Right Kidney Home on Wednesday with good recovery.
Had copy of pathology report which said tumour was 45mm, stage PT3a this reinforced the fact that although the primary tumour had been successfully dealt with there was a strong chance of the cancer moving to secondary sites (Metastatic) as the tumour extended into renal vein.
December 2013, having made an excellent recovery, returned to work and swimming, ‘I was rewarded with’ a very minor Heart attack which resulted in a quadruple bypass. Good recovery over the next few months.
July 2014 Scan shows first sign of spread to left lung, choices poorly given wait for next scan then probably onto Oncology or have surgery to remove. After private consultation to understand choices better, opted for surgery.
October 2014 had a ‘wedge resection’ of the left lung, successful good recovery soon back to normal no loss in respiratory function.
April 2015 scan shows more growth so referred to Oncology.
May 2015 found & joined KCSN
June 2015 had 2 consultations (private second opinion) the choices being targeted TKI therapy or referral to Professor Hawkins at The Christie Hospital Manchester for High Dose Interleukin-2 (HD IL2) Immunotherapy treatment. In contacting a KCSN member who has had success he spelt out how hard the treatment was but that there is the possibility of success. His advice was invaluable so I asked for a referral.
August 2015 Consultation with Prof Hawkins that subject to heart stress test would accept me for HD IL2 treatment.
October 2015 First round of HD IL2 went well until 6th dose which then set off a heart condition so treatment had to be stopped.
October 2015 Heart MRI and other tests.
15th December 2015 Scan then consultation with Prof Hawkins, excellent news the bit of IL2 had worked its magic with a halt to progression of secondary cancers, I can continue treatment, loverly pre-Christmas news.
January – February 2016 Two rounds (1 week inpatient, 1 week home, 1 week inpatient) of reduced IL2 successfully undertaken.
22nd March 2016 Scan and consultation results TBA !
Above is the outline of my story, it is interspersed with many CT and some MRI scans so many I have lost count o plus an angiogram. Much travelling to 8 different hospitals (Somerset, Bristol, London and Manchester). I do not have private health insurance so have funded Nephrectomy and 3 consultations myself, a luxury if you can afford it. The cost of a very good second hand car, but prefer to have older car and new me!
Not only does Cancer take a mental toll on those of us with it, it is as big a challenge and stress for those that care for us, I am exceedingly lucky that my wife Clare is second to none with her support. Since we have joined KCSN it has helped us ‘see the wood for the trees’, gain factual knowledge, share support with each other, be very informed so ready for understanding consultations and asking the right questions and in my case sometimes when its best to keep your mouth shut! KCSN membership also keeps you focused on what is current and relevant to our particular cancer as many media reports are not relevant and refer to new findings that will take time to come on line. KCSN is now becoming a respected charity within medical circles which promotes from a patient perspective of which many consultants and medical professionals value.
My thoughts and feelings have constantly changed over this period, I have met those who should not be employed let alone in a medical capacity, thankfully a minority and I have been treated by those that are at the top of their game, let’s not forget all of the foot soldiers whom daily diligently toil away on our behalf and what I have learnt is to take everything that is told to you ‘under advisement’. If you can always have someone with you, try and have knowledge of the possibilities that may be presented to you so that you may discuss and or challenge if needs be.
As I was due to go in for yet another operation a good mate of mine whom has had medical problems said as he was leaving ‘Stay positive’. This was probably the best that could be said at the time and sums up the challenge we all face.