You can’t understand how much I don’t want to be doing this. I don’t really know what I’m supposed to be writing,and I’m not even sure why I’m writing it in the first place. It’s become everything I didn’t want it to be, a dialogue of ‘bad, better, worse’. Line after line of what’s wrong with me. It can’t make interesting reading any more can it? OK I’m sick. Sick of writing this, sick of cancer, hospitals, sick of the emotional torment, the travelling, treatment, I’m sick of being sick and the realisation that I do need help in doing the simplest of things around the house or even going out.
I’ve not been well for the last month, temperature, sweating, tiredness, nothing I could put my finger on. Yeah OK so my back (and leg) has been giving me immense grief for a long while, but that has always been chronic and ongoing. I’ve never liked having to use a stick but now I can’t do without it and can’t stand for anything more than a few minutes without being in immense pain. That’s depressing enough on it’s own. I saw the oncologist last week as planned, not Dr S, he was away addressing a conference overseas, Dr M this time, his usual stand in, I’ve met her on many occasions prior to this appointment. I’ll deal with the important results from the PET scan in a minute, but first the casual comment that the scan showed inflammation in both lungs.”Do you have any pain? Have you been unwell” I wasn’t going to mention it, but yes, I haven’t been well, and pain, well the last few nights have been very uncomfortable, my chest has been hurting. With that she listened to my chest and sent me away to the other side of the hospital for an x-ray. Half an hour later I was back, with confirmation of an infection in both lungs. It seems the high dose opiates have been masking the infection to the extent I wasn’t really aware I had one.
Now to the PET scan. They are concerned at a few areas in each lung, but the infection is making it difficult to be sure of exactly what it is that’s causing concern. So a quick course of high dose antibiotics and a request for an urgent CT scan of my chest in the hope that the infection has died down a little. Now the bomb shell ! Another tumour on my liver, and another suspected behind it. The confirmed one is 2.5 cm, quite large in comparison to what has already been removed and seemingly growing quickly. I could feel the blood draining from my face as it must have turned as white as a sheet (if you’ve got white sheets that is). I had been half expecting something not quite right. I saw the colorectal surgeon just a week before and there were a few comments made that made me think something had shown up on the scan. How he would let Dr. S deal with the follow up scans, and that I would be closely monitored in the coming months anyway. I wasn’t prepared for what I was hearing though. All I could think about was more surgery, I don’t want more surgery. Twice I’ve had liver surgery and twice I’ve ended up in intensive care. The last time was a little too close for comfort. They can’t re-open the same scar again can they? The tachycardia I had last time, not again surely? Another 3 weeks in hospital…No. Another epidural? That hurts ! All sorts of things were rushing through my mind, too much to comprehend, too much to think clearly. I immediately assumed surgery would follow, but what if it’s not possible this time? Where is the tumour located? What if there are further tumours on my lungs? I left pretty dazed, more disappointed than upset. I walked the length of the hospital again to the pharmacy, to pick up the antibiotics.
By pure coincidence I had earlier learned of a friend who had been admitted to the Medical Assessment Unit after an adverse reaction to chemotherapy. I took the opportunity to call into the ward to say hello, but really it was a case of me taking the opportunity to gather my thoughts and calming everything down in the tumble dryer that was my brain. My friend is a breast cancer victim, now being treated for a recurrence of the disease in the glands in her neck. Somehow you can say things to a fellow patient that others would not understand. Nothing medical or technical, just “things”. They know what to say, or maybe more importantly, what not to say. Or when to say nothing at all. There I was supposed to be supporting a friend, when it was me who needed the support. I was so grateful for the coincidence of ‘same time, same place’.
The Oncologist phoned me yesterday (Monday) to see how I was, whether my chest was any better, or worse. She was disappointed that the ‘urgent’ scan won’t be until Wednesday, but at least the results will almost immediate and Dr S can make a judgement when he returns. I’ve since learned that the liver MDT has already taken place, correspondence having arrived at The Christie in the intervening days between my appointment last week and now. That means the MDT was taking place as I was in clinic, and seemingly I am the only one not yet to know the outcome. I’ve also since learned that the scan I’m to have tomorrow is a CT angiogram pulmonary, which again would seem to suggest something a little more complicated than a simple chest infection. Dr M promised to come and see me when I go for my CT, so presumably I’ll either know more then, or I’ll have an appointment to see the main man at his clinic on Thursday.
Twelve months ago I was angry, or at least feeling guilty that I was beating this disease whilst others around me were dying. Now it’s the opposite, all I’m seeing is people around me, diagnosed, treated and cured within 12 months. Here am I over two and a half years later still struggling, and no end in sight. Social media can be cruel at times, almost gloating at me with every celebration of another person declared free of this disease. Of course I’m not angry with them, I’m angry with cancer, angry that it won’t leave me alone. Social media isn’t to blame either, without which I wouldn’t know the incredibly talented Rachel Bown, my cancer buddy, who’s own diagnosis I have literally been following for the last few years. I was diagnosed with the same cancer as Rachel just a few months after her own diagnosis, and I’ve followed the same treatment path all along the way. Chemoradiation, bowel op, chemotherapy, both lungs, 2 liver op’s. etc. etc. It seemed that every time Rachel was diagnosed with yet another tumour, I was to follow. This is where our paths now veer separate ways. Rachel has become a great ambassador for bowel cancer charities, her blog is followed by thousands and tomorrow (8th April) she will be appearing on Channel 5’s The Wright Stuff, to discuss her book The C List: How I Survived Bowel Cancer. Do try and tune in if you can, if not record, but either way, go out and buy her book which is an account of her diagnosis and treatment and how she beat bowel cancer. I guarantee it will be a wonderful read, regardless of the subject, and better still, it will raise awareness and valuable funds for bowel cancer charities. I’m certainly hoping that after this current ‘blip’ I’ll be joining Rachel on the road to recovery and remission.