Dear Consultant, Following my CT scan a couple of weeks ago I had started to worry about the results. Continuing back pain since surgery and as yet unexplained bleeding has obviously heightened this irrational fear that maybe the cancer had travelled. As 2 weeks had passed and no news I decided I would call your office and ask why the hold up. I am in contact with 3 other kidney cancer patients in other areas who had scans within a week of my own, all of whom received results within a week of their scan and so I didn’t think my asking would be a problem. I phoned your secretary and explained I’d had a 2 week wait for results and was immediately put on hold while she completed something ‘important’. On her return to the phone she looked up my details and told me, ‘your results are clear’. To be honest I hadn’t expected your secretary to be in a position to give out this information and had obviously been anticipating a letter from you. An all clear is obviously wonderful news and I was hugely relieved and thankful. However, this was not acceptable on any level and only added to the catalogue of poor communication and dismissive behaviour I have received from you and your department. When I went on to ask the secretary what my appointment date was she replied that there wasn’t one ‘on the system’. She went on to ask me did I want to make one?! Now forgive me if I’m wrong but, I did have cancer, I was supposed to have a 6 monthly check up following my ct scan. Ok, this was already 2 months overdue but even so it would have been reassuring to know I was at least on your system for a recall. I should not have to request my own appointment should I? I have received one letter from your office following my kidney cancer and this was dated 6th June, my surgery was March and I’d seen you in May for post op appointment. At this appointment I described the back pain and bleeding, both of which you said had nothing to do with your surgery. You booked me in to have a bone scan as a precaution. Also detailed in this – my only letter was the Histology ‘showing a pT1bG2 renal cell carcinoma’ and that I would have a ct scan in November with a review in December. I had asked more detail about my tumor at our post op appointment as obviously being an emergency operation there hadn’t been a biopsy beforehand. In fact all I’d been told by one of your doctors was the initial scan showed a ‘dirty big tumor’ in my left kidney. Another doctor had estimated this at around 7cm diameter. Forgive me if I don’t know their names – they didn’t introduce themselves. Your answers to the questions my husband and I put at our meeting with you post surgery were vague to say the least. We had already waited over 3 hours and had then been directed to one of your doctors for this appointment, one I’d waited for since March to discover the answers to my questions. We asked to see you which did not please your doctor at the time and were put back in the queue. Again, I don’t think it unreasonable to ask to see the person who performed my surgery and knows what he found? Questions about how long the tumor may have been inside me met with the answer, ‘how far can a horse run’. On causes and/or possible explanations for the cancer, ‘take yourself to the children’s hospital and ask yourself why they have cancer’. As far as how big, what kind etc., the only information is that which I can’t understand as it’s in medical abbreviation. Is it so bad to want to know what you cut out, to need to find out if it could have been prevented or if there are ways I can improve my diet and lifestyle? My Aunt died of kidney cancer and my father had kidney problems, should I not worry that there may be a hereditory factor. I have continuing pain and bleeding that wasn’t present before my surgery, is this so easily dismissed? When I received my letter dated 6th June from you it arrived in a window envelope. Next to my name and address was written in biro, ‘bone scan ok’. The postman knew those results before me! Not only had you not bothered to write a separate letter, you had scrawled it at the bottom of an already late communication that was actually written to my doctor. I want nothing more than to put this whole experience behind me and to feel free of cancer and it’s hold on the last 8 months of my life. If you can’t understand my need to have answers to questions or even results of scans then I cannot feel trust in your ability to continue as my consultant. Your secretary, after apologising for my upset said herself, ‘you must feel quite abandoned? That is an understatement. I began writing my experience of kidney cancer down whilst in hospital as the pain and distress I was enduring meant that I couldn’t keep track of all that was going on. I wrote down everything I knew and all that happened. It wasn’t until several weeks after surgery that I began writing this down in blog form. Partly to help me make sense of the experience and also in the hopes it may help others going through similar. I had struggled to find information on kidney cancer, in particular that from patients themselves and with little or no answers to questions, had looked to other sources for help. My blog, I hoped could maybe give someone going through this ordeal an insight into how it feels. However, I have left quite a bit out of my diary and toned some of it down as it is both personal and a bit too graphic for me to relate. What I didn’t want was to show the experience as something frightening and and bewildering. Well it was. This could have been helped by the most simple thing of all, information and the way it is given. I’m sorry to say that once again you have failed to communicate information and have left me feeling as though my kidney cancer was insignificant. I don’t want to feel this way any more and therefore will be seeking alternative care. I am fortunate to have an excellent GP who has ensured all that can be done to help me is carried out. Most importantly he has listened to me and not once dismissed my fears, he has answered questions where he can and given help and advice where needed. Please God I will never have to return to hospital but one thing is for sure, I have no intention of visiting Heartlands again.
In case you do need reminding of who I am I you can read my blog here An Unfashionable Cancer You may need to start at the beginning because you missed my arrival as you were away, my diagnosis in particular can be found here The C Word I think that Day 6 – Questions Answered it’s Kidney Cancer was probably the day when the penny dropped though as the ‘dirty big tumor’ description really hit home. Having had 3,800 views I am presuming this diary of my kidney cancer experience may have gone some way to enlighten and hopefully help others going through similar. The messages and emails I’ve received certainly echo this and so I will continue to write. I hope you have time to read.