18. Crying for help: from neck dissection to stage IV

The time after my neck dissection surgery is the time when I started writing this Blog. It was September 2014. I was recovering exceptionally well from the surgery and I was gradually going back to a normal life, I even went on a holiday to Greece, and on the whole I was feeling positive about the situation and confident about my future. Then things started to deteriorate and the worst months of my life so far were around the corner. I actually feel in a better and safer place now in spite of everything I have been through since then. Now at least I know where I stand. But those weeks when I started to get ill and no one could tell me why, when I had to cry for help from doctors for weeks before I was eventually diagnosed with metastatic melanoma, were horrendous.

I remember starting to plan my sabbatical. I had decided to take a few months off work, starting from January 2015, and travel, take it easy, spend time with friends, enjoy life to the fullest and recover from the physical and mental shock I had gone through. Obviously none of that ever happened. [Or at least it is all postponed until further notice!].

October 2014. It is actually quite painful to go back with my memory to that period and write about it. The most painful thing was feeling my health deteriorate quickly and not knowing why. I started experincing a raised temperature in the evenings, I had back and muscle pains, I was constantly tired, I occasionally had heavy night sweats and my weight was falling quickly. You would think, when reading this, that given my recent history of cancer my symptoms were sadly pretty damn obvious and clearly indicated some cancer activity. How could the diagnosis be delayed by almost one more month? I suppose, from a patient’s perspective it is never the same thing when you are actually in the middle of it and living a given situation, you don’t necessarily assume you have stage IV metastatic cancer as soon as you have a raised temperature. In addition, bear in mind that my oncologist had more than once told me not to be paranoid and that I should not assume I have mm lung metastases every time I cough, and so on. He had told me to remember that I could still get sick, like people do, and not everything would be cancer-related. Also, I was still recovering from the neck dissection surgery, so I could attribute possibly some pains or discomfort to what my body had gone through. So maybe I can be forgiven for not realising immediately what was happening. However I think it is a great deal more worrying and frustrating that the doctors close to me missed such obvious signs and that I eventually had to beg my GP for hospital admission, so they could finally tell me what was wrong with me. This is how blind the doctors were:

My oncologist (at the time) saw me in the middle of October for my 3 month follow up and did not pick up any of the above mentioned signs or symptoms. I have a letter sent by him to my GP which defines the consultation as ‘unremarkable’ and gives me a new appointment date for January 2015, when I would also have the first scans since surgery in July. In a way I was a little unlucky as things started to get worse just after I saw the oncologist, however I still find it frustrating that he should not have picked up that I was unwell when he saw me. In the end of the day this is his job, to determine whether there is the need for any additional investigations. Nonetheless he saw me (and on the day he saw me there is not the shade of a doubt that I already had metastases in my body) and he just blindly sent me home with quarterly check ups, and scans scheduled in January, as that would have been six months after surgery. I already mentioned that I learnt on my own skin that blindly applying the protocol to every melanoma patient is not what a good oncologist should do. 

The GP I saw at my GP practice was equally blind to my cry for help. During those weeks toward the end of October and in November I visited the GP twice and they were very adamant that I was over-worrying and that all I was experiencing were flue symptoms. I remember the doctor's words when I expressed my worry that there could be some cancer activity: ‘I can reassure you that you are fine and that these are common seasonal flue symptoms’. Now, whist I am sure that many patients visit their GP with flue symptoms, a good doctor should be able to assess the difference among patients. Be able to read the patient in front of them. Given that I had always been very healthy and that in 15 years whilst registered at that GP practice I had never even had a flue, and in light of my recent cancer history, maybe you would think that an alarm bell could have been raised? No. The second time I went to the GP with recurring fever and severe back pain, they finally prescribed me some blood tests. The results of the blood tests took a week to come back. On the basis of those blood tests, which showed very raised inflammation values, I finally managed to be sent to hospital.

My Dermatologist (at the time) completely let me down too. Until then I was happy with him as he had initially identified and removed my skin tumour in December 2013 (even if in fact I had been the one to point it out to him). I was now having skin check ups every 3 months. I went to see him in the middle of October 2014 for the first follow up since my neck surgery. One thing in particular was of concern to me, which I pointed out: since september I had developed a lump on the scar of my neck dissection, which I thought was due to a sature stitch which had been mistekenly left under the skin and then subsequently removed (and to get that removed was also a fight as I had to go my GP first and then back to the surgeon in clinic). So I thought the lump was some kind of skin reaction or infection. And so did the dermatologist, he qualified it as a ‘granuloma’, a kind of chronic inflammation of skin tissue. He injected the lump with topical steroids to try and make it go down. At the same time he thought it was also wise to removed two other moles which he didn’t like the look of, so I had two more excisions, which two weeks later resulted in benign nevi. 

I need to add that at my October consultation, also the oncologist had seen the lump on my neck which he defined as ‘unsightly’ and recommended that the surgeon surgically removed it. As the lump did not go down following the steroid injection but instead kept growing I decided that I did not want to wait another week to see the dermatologist again about it, so I called the surgeon who thankfully was able to see me with no delay and removed it in his clinic. Yet another surgical cut (my body was starting to look like an old patchy teddy bear), but at least I got rid of it. I was particularly happy as in the meanwhile I had also started to think that the infected lump maybe was creating a reaction within my body and producing the fever too. I thought maybe me being unwell was actually caused by that inflammatory tissue. Maybe I would start to feel better after this small surgery.

In the midst of all these health worries and concerns I am trying to keep going with my life, do all the things I enjoy, but I can never fully enjoy anything anymore as I never feel quite alright. I go to parties, I see my friends, go to the theatre, go to the gym and try very gentle exercise, go to Yoga, but nothing is quite right. Now I have very sad memories of those weeks. And when I see pictures of myself from around that time, I can clearly see that I looked very ill. 

One sunday my partner and I feel so at loss with the situation, so desperately helpless that I call the NHS 111, non-emergency medical help line. They give us an immediate appointment with an emergency GP. All he tells me when he hears my symptoms is to have some urgent blood tests (probably the only good advice he could give me as a next step). He notices I have an increased temperature. He thinks it is unlikely that the neck lump may be the cause of it. We leave the hospital and decide to go for a walk in Epping forest, where we can escape the world and be in touch with nature. We ask Mother Nature to heal me, to give ma a sign, a direction.

Finally my GP sends me to a large NHS hospital in north London, on the basis of my blood test results, and they are very quick and efficient there. Within two days they do a lot of tests and on the second day an MRI of my back, and I finally land on the awful truth, that melanoma has metastasised and I have tumours in my bones. I have already talked in post 15 about the unimaginable pain and shock at this diagnosis and I will not go there again. 

I go home, surrounded by friends and family who will always be my support and strength. I write to my oncologist, he is able to see me in two days’ time. When I see him, he tells me something that also my current oncologist often tells me but that I never get used to hearing without a cold shiver going down my back: that my melanoma is very aggressive. He tells me that I will have full body scans as soon as possible and that he believes it is likely that I may have disease elsewhere in the body (he is right on this one as the CT scan will reveal tumours in my liver too). He also tells me that in the meantime he has heard from the surgeon and that the lump removed from my neck, which had gone for biopsy, was also melanoma. I am actually shocked when I hear this, I say ‘bloody hell’ out loud. Tears of sheer terror come to my eyes. It’s like being attacked by a vicious enemy on all fronts at the same time. There are no words which can describe the emotional pain and scarring. 

I still sometimes think that if the oncologist had picked up the signs and brought my scans forward, if the GP had listened to what I was saying to him and sent me to hospital sooner, if the dermatologist had correctly identified the lump on my neck as mm and excised it and thus showed that the disease was active... any of these insights from the doctors could have brought my diagnosis and subsequent treatment forward by some 3 weeks. I am not sure whether any of the subsequent history would be different, and that is also possible. But surely they would have spared me much pain and suffering in addition to what was inevitable. 

Since 19 November 2014 I have been engaged in a full time battle against metastatic malignant melanoma. And yes I have also changed oncologist and dermatologist!! In the next posts I will talk about the treatments I have received so far, the surgery that unfortunately my back needed in February 2015, but especially about how with the support of wonderful people around me (far and distant) and with the faith that tomorrow may be better than today, I am still going ahead with my head high.