In our thoughts
Hi, my name is Jill Howard, I’m 56 and have worked in banking IT for most of my life. I live alone and am currently taking a break from work and re-training in accountancy. My main hobby is waterskiing. I waterski myself, and am also an International Judge, having judged several World Championships. I also voluntarily sit on a waterskiing committee that runs the Tournament side of waterskiing in the UK.
I was diagnosed with Kidney Cancer on the 3rd January 2015. I had been feeling really tired since the summer, but thought it was due to my new job and judging too much as usual. However, I eventually realised there was something wrong with me when I was failing to keep up with my usual level of activity in the gym, (despite my excellent Personal Trainer, Nick’s “persuasion”!).
I eventually went to my GP on 6th November 2014. I told them about my 10 or so symptoms, and apologised for probably being a hypochondriac! The symptoms I had which I knew were not normal for me were:
- An irritating niggly cough
- Episodes of feeling weak/shaky
- Lower than usual Blood Pressure and higher than usual resting Heart Rate
- Dizziness on standing
- Increased thirst throughout the day
- Going to the toilet at night
- Metallic taste
- Head hurting
- Feeling generally unwell
- Unable to exercise
I was sent for blood tests which showed severe anaemia, a very low red blood cell count which dropped further in the following weeks. My GP then signed me off work and said that I may need a blood transfusion (Scary). I was referred to a Colorectal consultant as the first place to investigate anaemia is bleeding in the stomach or Colon, although I had no other symptoms of this and no pain at all. I saw the consultant and he booked me in for a colonoscopy and endoscopy on 5th January. By now it was getting near Christmas and so everything seemed to be taking much longer than normal. Also, by now, I was feeling very rough, I hardly had the energy to sit in a chair and spent as much time as possible lying down. I had to cancel a Christmas trip to friends in Devon.
Another blood test had found a raised protein level which combined with anaemia had initiated an urgent haematology referral. I went to the haematologist on 29th December. He advised a full skeletal X-Ray and a Bone Marrow and Bone sample to be taken for investigation.
Meanwhile, my GP kept saying to me that I needed a CT scan. I therefore requested a CT scan from the Colorectal Consultant and had that on 24th December. I was then proceeding using the private health care that I had through work, which is maybe why I got the scan that I requested.
On 29th December, the Colorectal Consultant’s Secretary called to arrange a consult on 3rd January, before the oscopies were due.
And then comes the devastating day, the Colorectal consultant advises I don’t need the oscopies, and that the CT Scan has found a lesion on my right kidney, (Right renal cell Carcinoma). Although, a biopsy after removal is the only way to confirm this for sure, he is 95% sure that that is what it is. I now need a lung CT scan, (to check for spread), and a kidney consultant referral. My (right) Kidney will need to be removed. The nurses at the Runnymede Hospital were absolutely amazing at helping me with the shock – I had not even taken a friend with me as I wasn’t really expecting this news.
On the 7th January, I had some bone marrow taken. This was unrelated to the Kidney Cancer, but it showed that I had Multiple Myeloma, which now also needs regular blood tests and hospital visits to monitor and if it gets worse, I may need treatment.
Later that day, I saw the Kidney Consultant, Mr Agrawal. My Lung CT was clear and as that is one of the first places to look for spread that was some good news. One of my lymph nodes next to my kidney was a little enlarged so it may also be infected or just inflamed. When I have the op, it will be removed and tested. The cancer is 10cm, how did something that big get there without me knowing! Mr Agrawal wanted to do some more tests ready for the operation, then the operation would either be at Runnymede or Charing Cross (I said whichever is soonest). The procedure would be laparoscopic, converted to open if necessary. Recovery is much quicker if laparoscopic. Fortunately, the other Kidney looked fine. I remember thinking, that if you are going to get cancer anywhere, at least with the kidney, you can live on the other one!
On 10th January I went to Runnymede Hospital for an ECG and Echo test (requested by Mr Agrawal). I didn’t feel too good and the nurse took my temperature which was 38.7, (I didn’t feel hot). I had more tests and the on-call doctor, called My Agrawal who advised some anti-biotics.
On 14th Jan I saw Mr Agrawal. The theatre slot still needed confirming, but the provisional date for my operation was Sat 24th Jan at St Peters (next to Runnymede Hospital). I would be admitted the day before for a blood transfusion. The Op would be at St Peters, I would be in HDU for a day in St Peters, then they would transfer me to Runnymede, for hopefully a couple of days.
Meanwhile, I would have to have a pre-assessment next week sometime. On 15th Jan, my Op date was confirmed. I couldn’t wait to get the horrible thing out, especially as by now I was also having night sweats, where I would wake up drenched and cold and would have to change my sheet and pillows.
On 20th Jan, I went for my pre-assessment, which was very thorough. I had a temperature again. Mr Agrawal prescribed me more anti-biotics, and I had more blood taken. My temperature could effect the blood transfusion and if I had an infection, my operation may be delayed, so I was admitted the next day for monitoring and treatment before my op. Apparently, I was a mystery, Mr Agrawal couldn’t understand why I had a temperature as no infection was found.
On 24th Jan I had a right Nephrectomy and two lymph nodes removed laparoscopically. I think I’d been so concerned about the cancer, I hadn’t actually considered the impact of the operation. The second I woke up, I remember saying “it hurts” and someone saying to give me some painkillers. I was lying in HDU too scared to move with lots of very sick people around me. After some hours, they made me get up and walk to the bathroom for a wash. I just wanted to collapse. After this, they sat me in a chair, which was like torture, I just wanted to lie down. Eventually, they took me back to my room at Runnymede Hospital and I was allowed to lie down again. It felt like a horse had jumped on my stomach!
I was discharged from hospital on 29th Jan. Whilst in hospital I found it very difficult to move and get out of bed. When out of bed I felt very shaky and it was difficult to pull myself up, hence I wasn’t ready to go home as quickly as I, (and everyone else), was expecting. When I did get home I sat in a chair for a while and then crawled up to bed when I couldn’t take the pain of sitting any more. Being in my own bed without constant nurse visits to take my obs was lovely, although it still hurt to move and get out of bed, so I did this as little as possible. The Co – Codamol company must have been happy with me.
Over the next few weeks, I gradually gained strength and started doing more and more for myself.
Grade and Stage
On 11th Feb I had a consult with Mr Agrawal. The results of the biopsy on my tumour were that it was 8cm, high risk, with aggressive features, grade 4 and stage 2/3. pT2 N2 MX papillary renal cell carcinoma. The lymph nodes removed were also infected. I was advised that there was a 50-50 chance that it will not come back, and if it did maybe not for years. Ongoing, I would have a scan in 3 months and if that was clear another in 6 months. The scans I had had already show that currently it is nowhere else, so if it does appear somewhere, it will be detected quickly by the regular scans. No other treatment needed for now. My Agrawal, who incidentally has been fantastic the whole way through, was very happy with how I had recovered from the op. I still needed some physical recovery, but my kidney function was normal, (remaining one), which he was pleasantly surprised about! When I asked him about the pain, Mr Agrawal suggested that I tried without the painkillers – I stopped taking them and the pain was much improved – how does that work?!
I continued to get stronger and started a phased return to work about 8 weeks after the op. I had my follow up scan at the beginning of May and that was all clear. Next scan would be in 6 months and I would also be referred to an Oncologist.
At the end of May, I went to see an Oncologist, who specialises in Kidney Cancer. They advised that my next scan should be in 4 months, not 6 months because it was a very aggressive cancer. I was feeling really well by now and had been back to the gym for Personal Training sessions and also been water-skiing. I have to say that my personal trainer, Nick, was great, he gently re-habilitated me and it wasn’t long before I was doing a lot better than before my operation.
On 15th July, I left work. I claimed a small “living benefit” from a life insurance policy that I had. Not loads of money, but enough I thought to live for a couple of years carefully. I decided that I would “live a bit”, I didn’t want to get 2 years down the line, find out the cancer had come back and I had been working hard for 2 years unnecessarily. I also wanted to have as little stress as possible as I wanted to stay healthy and help destroy the cancer if any of it remained.
I had my next scan in September and the results on 1st October from the Oncologist. All clear. Next scan 4 months.
On 6th Oct I also saw Mr Agrawal. He was happy with the scan too. I think he was pleasantly surprised that it hadn’t come back. Still a 15% chance it would, but odds lowering. As well as saving my life, Mr Agrawal has been a great support. His manner is personable and not clinical and he always tells me information that I want to know without me having to ask and answers all the questions that I do ask!
By now, I had transferred to the NHS as I lost my private health cover when I left my job. Before I left my job, I made sure that I could transfer and see the same consultants and get the same treatment. My NHS treatment so far has been very good.
Next scan was January 2016, a year after my diagnosis. There were some irregularities shown in my lungs, but these were more than likely to do with the cold I had at the time of the scan (no lumps). There was an enlarged lymph node in the kidney area that was 10mm, this may not be anything, but needed monitoring, so I am having another scan in 3 months time. I was hoping to go to 6 monthly scans, but glad am being checked again in 3 months.
The whole experience has been a whirlwind of different emotions. To start with I was very shocked and upset, but didn’t allow it to get to me and went on to fight it any way that I could. I had a lot of help and support from a very good circle of friends and my cousin. As I have no immediate family, their support was vital. I am not very good at asking for help and generally deal with things on my own, but this time I couldn’t, I needed help. After the operation, I became very low and felt as though I was never going to get better and stronger. I struggled with this for a while, but with a bit of time and help from my friends, I finally turned a corner and continued to improve from there on.
The GP that I was seeing, was also a great support and if it wasn’t for her, I wouldn’t have asked for the CT scan which showed the cancer. Unfortunately, she has now left my surgery and so I don’t see her any more, but she was there when I needed her most.
The worst part of having the cancer is obviously the cancer itself and the operation, but the best bit is that it makes you re-evaluate your life. Before, I was always worrying about having enough pension and not really thinking about today. After diagnosis I focused only on the next couple of years and “living” rather than existing until I retired. Now, I think I have a good balance between the two. I appreciate today so much more and try and take advantage of every opportunity I have, whilst still doing some planning for the future. I am now doing an Accountancy Course so that I have another skill, which I can use, part-time or full-time, before and after retirement. (Accountancy is much less stressful than IT). In some ways I feel invigorated by this experience. I recently had a tattoo, on my hip near my scar, with a green Kidney Cancer Ribbon and the word “Fighter”. I have never been a fan of tattoos, but it somehow seemed right and every time I see it, it makes me feel stronger and positive.
I will have ongoing scans for about 10 years and who knows what they will show, but for now my scans are clear and I have not needed any further drug treatment. I hope it stays that way.
The KCSN Facebook page and Web Site have been extremely helpful. It’s good to be able to ask questions and get answers from those that have been there, It’s also good to read others experiences to know what may or may not happen and be more prepared. The best thing is that you can say anything. I believe that I have now come to terms with what my future might be and that helps me a lot. However, my friends, I can tell, are often uncomfortable talking about possibilities as I would have been before this happened to me. On the KCSN Facebook page, everyone is in a similar boat and if I can also help someone there by answering their questions and supporting them, then that is good too.