I had a busy and emotional couple of days this week. I find it very therapeutic to be able to record in this blog what has happened and my reactions to it. I really don't mind if very few people read it, but if they do, and respond with comments, so much the better. I did post a shorter version of this entry over in the incurables group, but I need to stretch my wings a bit more here!
I had an appointment in the radiotherapy department at the Christie on Wednesday. I should have taken hubby with me, but I had also wanted to see my best friend J who lives in York and can easily get over to Manchester to meet me, so we'd arranged for her to accompany me to the consultation and for me to go and spend the night with her in York afterwards before returning home yesterday, giving hubby a well-earned break from cancer, cancer, cancer.
As usual we were kept waiting an interminable time to see the doctor, and when we were led into the consultation room, it was the registrar we saw rather than the consultant. However, having met her last week and having been impressed with her extraordinary clinical skills, this was not a drawback. Also the consultant was in the next room with another patient, and indeed came in to talk to us later on in the consultation. So I felt I had the best possible care and attention. I have to say this somewhere, so it might as well be here: I am awed by the incredible clinical care I am getting. I feel that the best brains in the field are bent on my case and giving me the most wonderful, personalised, individual care. Yes, systems and admin in the NHS can drive us all wild, but clinical care like this, backed up by all that knowledge, research and expertise, is a pearl beyond price, and I'm hugely grateful.
OK, 'nuff said about that - back to the consultation. First, we discussed the fact that last week we had concentrated on pain control, and the results are that I'm no longer in pain. This is great. With the right amounts of morphine, pregabalin and dexamethasone, things are under control. In fact, I'm beginning to feel a bit of a fraud! No pain and feeling really good. What I feel in my left arm, shoulder, chest and back is more discomfort and tingling than actual pain. It's there all the time, and the pins and needles in my arm attack in waves, without warning - always when my arm is raised, but quite often also when it's just hanging down, or I'm doing something with it. This is a very strange sensation.
There is a reason for these funny feelings. What I had assumed was just an enlarged lymph node in the front left of my neck (supraclavicular fossa node to give it its correct location, which I gather means it's in the ditch (fossa) above the collar bone (clavicle)) turns out to be the tip of an iceberg. The onc explained that she and the consultant had now had a very careful look at my CT scan of 1st Sept and identified that there is now a mass of cancer 'creeping' over my shoulder and down my back. I'm going to mix my metaphors here: I envisage it as a sort of lava flow rather than an iceberg, so I suppose you could say that the lymph node is a sort of rock in the flow. Anyway, anyway, it came as a shock. I supposed they hadn't looked at the scan very carefully in September, and it was only when I mentioned at the last consultation that my arm was beginning to go numb and I had all this chest and shoulder pain, that they went back to study it more carefully. They then spent a very long time making me hold my arm out and tapping and stroking my arm, hand and fingers to identify which nerves were affected.
The treatment is to be a week of palliative radiotherapy to the area, approaching both from the back and from the front. The purpose of this radiotherapy is to relieve pain and prevent nerve damage which could result in the loss of use of my left arm eventually. Which is a bummer because I'm very left-handed! i.e. I'm totally useless with my right hand. And I sew, and write, and drive, and do everything with my left hand. Oh well, if they don't treat it, the cancer will do the damage anyway, so the possible risks of this slightly tricky treatment have to be accepted. It's tricky because this is the second time they've irradiated the area. The first was twelve months ago. They cannot do it a third time. The immediate risks include more pain, sore throat, skin soreness, cough and shortness of breath. Some of these would be due to the fact that the radiation will catch the top part of the lung. But these are minor and temporary side-effects. The radiation could also damage the spinal cord, possibly affecting things like walking, but this is a rare and long-term side-effect, so I'm not even going to think about that.
J, bless her, sat in the corner and wrote everything down for me, which is why I have such a good record of the consultation. It was all about radiotherapy. I tried to discuss my decision, already taken, that I would refuse any further chemo, but they didn't want to hear that. I suppose that is for next time, so I had to leave it on the table, so to speak.
Just in case you're madly interested in my insides, the registrar and I agreed that the vaginal fistula, which is pretty certainly what it is, i.e. cancer invading the vagina, and not an infection, is not causing me much of a problem, so we'll just leave it for now. It's quite manageable.
I was then asked whether I would be willing to act as a model for a student radiologist to check my head and neck for enlarged lymph nodes, so I spent about 20 minutes sitting very still while she prodded and felt all over - and then got it wrong! But I realise the importance of good training, so I was quite happy to help her. What was rather odd is that she specialises in prostate cancer - I did explain that I couldn't really help her there as I didn't have one!
We left the consultation room and I had time to call John and discuss all this with him, then I was swept off to have a CT scan, tattoos and a small mask made. Thank goodness it wasn't the whole head mask I had last year: this was just a mask to cover my neck, jaw and mouth, and quite comfortable.
Finally, we went off to the café, where I was really clumsy (shock? pregabalin wooziness? steroid hyperness?) and knocked over a whole cup of coffee all over the table, chairs, floor, someone's coat and my handbag. What a mess!
During the train ride back to York, a pleasant evening with my friends, a cup of coffee (not spilt this time!) with another group of friend from when I used to study up there, and the train ride back home again on Thursday afternoon, I was able to process this bad news and accept it as the new reality. And it's a funny thing. In fact I feel quite calm and happy. Why this should be I have no idea, unless there is some chemical help from the various drugs I'm on, especially the low dose steroid which is doing a marvellous job, or unless it's the mistletoe injections, or my continued attention to mindfulness and living in the moment. I am a bit hyper in the mornings and talk non-stop, and I can't sleep much (last night not a wink) but I'm not doing very much during the days, so it doesn't really matter. It also helps, I think, that I'm looking quite good these days: the weight loss suits me as long as I keep my clothes on and you can't see the hanging folds of wrinkly skin! I'm loving being able to buy and wear size 8 jeans, for example. I dress as well as I can, wear a little makeup, and today spent all morning having highlights put in my hair - a delicious girlie morning at the hairdressers with coffee, magazines, and lots of chat. As J points out, a little vanity is not such a bad thing!
I'll be at the hotel in Manchester next week, with visits from three different friends to look forward to, but no doubt I'll be back and write another blog post. Thanks for reading it, if you've got this far.
