The Cost of Cancer

Fighting cancer is an expensive business. While you're trying to prevent it from costing you your life, the hole it burns in your pocket can start to get out of control. From buying countless train tickets for routine appointments, to taking time off work to have treatment, the cost of cancer can really start to build up.

But there are people and organisations that can help... it's just finding them that is the key! Your GP should advise you on ways to relieve the financial strain of being ill, although, from what I have seen, this doesn't happen all too often. For example, it has only taken me ten years to find out that the NHS provide a 'Medical Exemption' card to all Oncology patients! This means that any medication you need as a result of having treatment is free. This can include anything from painkillers to control the agony of a growing tumour, to medication to treat any side effects of chemo. You just fill out a simple form, which you can pick up from your GP's surgery, then send it back to the doctor and they take care of the rest!

It is also worth getting in touch with Cancer charities to find out if there are ways they can also lend a hand. For example, the CLIC Sargent Charity http://www.clicsargent.org.uk/Whatwedo/Financialsupport helped my mum and I enquire about what financial support my local borough could provide. It proved invaluable when mum had to take time off work to care for me, and was losing most of her salary as a result. Other charities that work hard to help families struggling to keep their head above water include Macmillan http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Financialissues/Gettingfinancialhelp.aspx.

Being told you have Cancer, at any age, is terrifying. Hearing those words immediately prompts fears of dying, leaving loved ones behind, and coping with the side effects of treatments. These issues are enough to deal with, without the added pressure and concerns of the financial consequences of being diagnosed. If you're paying out more than you're bringing in, then of course your stress levels will begin to rise, and you're in danger of damaging your health even further. It is important that you find as much support as you can with additional issues, such as money, so that rather than worrying about where next month's rent is coming from, your focus is entirely on winning the fight.

Coming Out Of The Dark

Last Friday I was getting ready to go in to work, I was running a little early, so decided to give the hospital a call to re-book my appointment with the liver transplant surgeon. By now I had just about calmed down from the previous disastrous visit to his clinic, so made an appointment for next Friday. I managed to get a late appointment, which was perfect, as it meant I could still go to work then travel on to the hospital afterwards. So the receptionist confirmed the date and time and just as I was about to put the phone down, he quipped, "there's no guarantee the surgeon will be there though, you'll probably see a member of his team instead". Brilliant!! It was impossible to get an appointment with this man! And not only that, nobody at the hospital seemed to have a clue when he was actually due to be there, if at all. "I'm beginning to wonder if this man actually exists at all!" I half joked as I put the phone down.

Because I have so many, I keep all my appointment letters and hospital correspondence together in a file. After I made this new appointment, I went through my file to remind myself of all the other appointments I have coming up, the scans, my consultation with my general consultant, my appointment with a doctor who helps me control the itching caused by poor liver function, etc. As I was going through each piece of paper, I noticed that the appointment letter to see my general consultant in a few weeks had another patient's name on it. I had made the appointment in person only three days before, and was standing in front of the receptionist as she booked it. She had my file in front of her with my name plastered all over it, and had just booked my scans, and managed to do that in the correct name! So I called the receptionist to rectify the problem, and was told I could no longer have this appointment as the other patient named may turn up. I tried to explain that I had made the appointment in person, so it was definitely for me, just with the incorrect name on the paper, but I was told I was wrong. The receptionist said that it certainly wasn't her mistake, and I would have to book another day, she added that the next available appointment was two weeks after that. "I don't think so", I said, "the appointment I booked is already three weeks away, and it's to pick up scan results which may show my wait for a decision on a possible transplant has been in vain. That's long enough to wait, don't you think?"
"Ok fine." She replied "There's one on the same day at 11:45am". Strange, I thought, that an available appointment had just sprung up suddenly out of nowhere.

So I emailed my consultant, I explained that I had booked an appointment to see the liver surgeon for next week, and that there was still no guarantee I would see him, but instead a member of his team again. Within two minutes my consultant called me. He told me he had spoken to the surgeon the previous day, and that I should have been contacted by the surgeon's receptionist to tell me to come in that Friday afternoon, I had an hour to get there!!! I was frantic!! My consultant added that the surgeon wasn't around the following week for the appointment I had just made, so unless I wanted to wait another three weeks to see him the next time he was in clinic, I needed to get there straight away. I called work to let them know the situation, and called my mum, who left her work immediately to come with me. Isn't it funny how the people who are supposed to be as helpful and supportive as they can, i.e. receptionists and hospital support staff are actually, often, very difficult, and yet the people at both my work and my mum's showed unimaginable compassion as they told us to drop everything and get to the hospital.

I was told to be there for 2:30pm, mum and I raced through the doors and up to the reception desk just after 2:25pm. And there we sat for four hours. Patients came and went, the receptionists left, I was starting to worry that the surgeon had gone home also. But just as it turned 6:30pm, he called me into his office. I felt sick, I couldn't believe after all the waiting, the stress and frustration I was finally going to get an answer.

He was a tall man, and loomed over me as he shook my hand and apologised for the time it had taken for us to finally meet. I wanted to let him know that I was angry with him, and his department, for the way I had been made to wait. Throughout the four hours mum and I had been waiting outside his clinic, I had prepared a speech about the fear I felt that I had waited too long, and that I could have started chemo months ago - especially if he was about to tell me that, in his opinion, a transplant was not an option.

But my anger and frustration melted away as he told me I was a good candidate for surgery. He examined me and laughed as he said it was as if there was absolutely nothing wrong with me. "That is my point", I told him. "As far as I know, I'm healthy and clear everywhere else and have been for seven years now. I don't feel ill, I'm not in pain like I was when I was diagnosed the very first time ten years ago. This disease seems to be targeting my liver, so perhaps if it was replaced I might have a good chance".
"I think you're right" was his reply. I couldn't believe what I was hearing, it was like receiving the most wanted and appreciated Christmas gift ever, it was difficult to hold back the tears. He explained that legally, before he performs any transplant operation, he needs to submit every case to a sort of international board of surgeons for their approval. He said that he couldn't see that there would be a problem, but added that there was an alternative operation he could perform, which he actually invented(!) if the board did reject my case.

But I got frightened as I realised just how dangerous these operations are. As he quoted mortality rates at me, I could feel myself running back to the idea of chemo. It sounds ridiculous, but I guess because I've had so much of it before, and got through some really dark times, chemo treatment seemed like a much safer bet. He told me that the mortality rate within ten months of having a transplant is 5-10%, if I had the alternative operation, the mortality rate is over 10%. "It's your decision", he said, "whether you would consider the alternative surgery if the board reject your case". I told him over 10% is too high risk for me, and that if I couldn't have a transplant, I would have chemo instead. "Yes", he interrupted me, "that's the wrong decision" he said looking me straight in the eye." Chemo will only buy you a bit of time, I want to get rid of this completely".

So that was it, the decision was made for me -which, in this case, is how I prefer it to be. And I walked out of his clinic with a weird mixture a feelings, I was frightened, very frightened, but so elated too. Elated that he could see a light for me, that he was standing beside me in this exhausting battle.

So, in a couple of weeks I'll have my scan results. If they show that the disease has spread, then we're back to the drawing board. But as things stand, I'm hoping that it is still contained in my liver and the board can make their decision.

My life is in one man's hands whichever operation he performs. And although that leaves me feeling incredibly vulnerable, it actually goes hand in hand with making feel overwhelmingly protected.

Drunks, Drug Addicts step forward please. Cancer Patient? Go to the back of the Line....

You know you have a problem when your consultants are at war with one another...
After my disappointing hospital visit on Friday, I saw my general oncology consultant yesterday. Expecting to have another battle on my hands trying to get him to understand my frustration at the transplant team, as soon as I walked through his office door, I embarked on a one woman rant at him. I barked about how disappointed I was with the department, and how angry I was at being kept waiting so long for such an important decision. But he just sat with his head in his hands. I could see he was even more irate at the transplant team than I was, and he immediately picked up his mobile to call the transplant surgeon to find out what was going on. He stepped outside the room for a few moments to make the call, when he returned, the look on his face told me he was now even more infuriated. He looked at me forcing a smile and said "you know when you start dialling a particular person's number and you just know they're not going to pick up?" Christ I thought, if he's not answering to another colleague, what chance have I got when I call to make an appointment??!! I left my Consultant's office yesterday feeling a little calmer. I was relieved that he shared my frustrations, I didn't feel as though I was banging my head against a brick wall so much. We booked some scans, and if they show that the cancer has spread I'll start some chemo. If it hasn't and I still have no answer from the NHS transplant surgeon, I'll pay for a liver, and I'll save myself.

But what gets me the most is the attitude some doctors have, this jovial "no-can-do!" response they have to their patients' needs. I wrote about this in some length in 'Kiss From A Rose'. When I saw the transplant team's representative on Friday he was smirking as he told me he had no idea who I was, or what my case involved. It was as if my life was a joke to him, that it was amusing that I somehow slipped through the net.

The truth is I'm not considered a priority case, no matter how many times the cancer returns in my liver. Although my liver function is so bad to the point that it causes constant itching all over, it's not quite bad enough to be at the top of their 'to do' list. If I was an alcoholic or a drug user, however, it would be a different story. If someone drinks their liver into oblivion, and there is very limited function as a result, they go straight to the top of the transplant list. "But they could drink away the new one!" I hear you say. True, but a surgeon is not allowed to make that assumption, they must have faith that the alcoholic will respect the second chance they have been given. But try telling this to the mother of a six month old baby boy, who has a type of Cancer in his liver. She would be told that a transplant is not the answer, because in this situation they cannot assume that the Cancer won't return elsewhere, or in the new donated organ. As she stands pleading with a surgeon to save the precious new life in her arms, with a donated liver that has just arrived at the hospital, he could be prepping for surgery to give that liver to a 58 year old man - a grown man who has had his life, and spent most of it drinking his own liver away. Where's the justice in that?

And so, my wait continues... with a bottle of rum. Well, if you can't beat 'em......

The Patient Patient

So disappointed. My transplant consultant is on holiday this week, and so I saw a member of his surgery team in clinic, even though I specifically asked to see him. The doctor I saw had absolutely no idea who I was, and had no answers for me, how worrying is that? I have been waiting nearly three months for a decision on the possibility of a transplant, and still the surgical team know nothing about my case.

How much longer do they think I should wait? Until it has spread a little, so a liver transplant would prove ineffective? Or maybe until it has spread all over in which case no form of treatment would prove effective?

What frustrates me the most is I know I can fight this. I've done it before, many times, and I'll do it again. And I'm ready to fight. But I'm standing face to face with the enemy in an open battlefield, with no weaponry, nothing to back me up.

And so, the agonizing wait for someone else to make up their mind as to what should happen in this next stage of my life continues.

My life in their hands

So today is D Day. I'll meet a complete stranger, and he'll tell me whether or not he can save my life. I have been waiting two months for the transplant team at my London Hospital to make a decision as to whether or not a Liver Transplant will be an option in my battle against this disease. In March I was told that I have Cancer, for the sixth time, the fourth time in my liver. Although I have had much chemotherapy over the past ten years, it doesn't seem to have been enough to keep this monster away. In the past the hospital have tried to treat the disease in my liver with an intense form of Radiotherapy, known as Radio Frequency Ablation, but this time it's not an option. So it's either chemo, or a transplant. The problem is, a transplant doesn't guarantee a cure, the disease could come back elsewhere, it could even come back in the new liver. On the other hand, my body is so battered form years of previous chemo, I'm not sure how much more of that it can take. With only one remaining kidney, and a damaged liver, chemo could push my body too far, so where do I turn?

My appointment with the surgeon is in just a couple of hours, and I sit here nervously thinking about what he might say. It's an odd feeling, as I'm not sure what I'm feeling nervous about, I'm not quite sure what I want him to say. Having a transplant may be the answer, as, apart from my liver, I have been clear elsewhere for the past seven years, I may have this operation and be cancer free for the rest of my life. But at what cost? Would I need somebody else to lose their life, in order for me to save my own? Or, if there was the possibility of taking part of a living donor's liver, how would I even begin to ask for a favour as huge as that? What if I survived the transplant operation, but my donor didn't, how could I live the rest of my life with that on my conscience?

I'm starting to think the decision is best left out of my hands, but it's still frustrating to feel so out of control over something so huge. If he says yes, the search for a donor begins. If he says no, I'll see my oncology consultant on monday to discuss plans for chemo. Whatever his decision, I pray it saves me.