An A to Z of ABC

"Well ... that was like attending a Help the Aged Christmas party", I declared, as I stomped into my doctor’s consulting room. He gave a wry smile, but said nothing. I am sure he was thinking “Oh thank God we don’t have too many like Paula".

Of course, if it had all gone to plan then it would have gone well. But of course, things don’t. It was Tuesday morning of my third week and I was due to have my bloods and flu jabs. The flu clinic happened to coincide with my bloods appointment and I worked it out that I should have been in and out in about half an hour .... Yeah right, two hours later ....

I turned up at my doctors’ surgery at 10.15 and asked to see the doctor. “Well, open surgery closed 15 minutes ago.” I know I shouldn’t but sometimes people just annoy me and I have to play my trump card. "Due to my cancer and chemotherapy I have a low immunity so I try to come as late as I can so that I am not around too many people", I said smugly. Unfortunately I didn’t know that she hadn’t yet played her trump card that morning and she responded with “You are out of luck today” and pointed to the waiting room. I spun round and the place was filled with elderly people who were waiting for their flu jabs. Lots and lots of them. I sat there for about ten minutes observing and listening to their conversations. Honestly, it was like being at geriatric kindergarten. If I had a pound for every time I heard one of them say “There’s no spare chairs, you’ll have to come and sit on my lap.” or, even worse, "Everyone else is having their jab in the arm, I've told the nurse to do yours in your arse." After ten minutes I returned to the receptionist. "I’ll stand outside", I said. Honestly, I want to get through this cancer crap. I want to grow old. But I really don’t want to be old.

I got my winter flu jab and the first of my two swine flu jabs about twenty minutes later but had to wait another hour to see the GP for my bloods. Once I got there I sat down with a bump and he said “How is it going?” "Oooo ... Kkkkk ...", I said, not very convincingly. “Fed up with going round the system?” "You’ve nailed it", I replied.

Now I like talking. OK, perhaps that statement is a little broad and I was probably asking for a bit ribbing on that one. Let’s start again ... I like communicating and dispelling myths. When I was at work at it was part of my job, now I do it talking about cancer and the treatment to my family and friends, and through this blog. There are probably three questions that I am asked the most. Where people sidle up to me and say “Psssst ... tell me ....” I call them the A, B, C Questions. A = Alcohol? B =Bare? C = Chemotherapy.

The first question is: “So, can you drink when you have chemotherapy?” Now, there are some things that I can’t have. I can’t eat shellfish, soft cheese, uncooked egg or live yoghurt, because of my lowered immunity these things could make me poorly, but I can drink. I guess the chemo chemicals are so poisonous that a glass or two of wine is no great shakes.

The second question is “Do you really lose your hair everywhere?” The simple answer is yes. With some people the hair drops out absolutely everywhere and they are as smooth as a baby until the chemo treatment stops. Then there are others, like me, where it drops out in stages and you have hair growing back whilst other areas are still losing it. My head hair dropped out a few weeks after the first chemo and is trying to grow back again but is struggling against the lethal cocktail that keeps getting pumped in to my body. I still need to ‘do’ my legs, but not as regularly as usual. And ... I now have to very reluctantly admit that my brows and beautiful long black lashes are just stubble.

And finally, the last question. “What actually happens with chemotherapy?” Well ... until a few months ago I had no idea. Like most people my image was of patients sitting there for hours on end looking really poorly. And, I suppose, at some point it was probably like that for a lot of people, and even now for a few, but my experience has been quite different.

My chemo takes place every three weeks, on a Thursday. On the Tuesday before I have to go to my GP and have my bloods taken. My bloods are then sent over to the hospital to check that they have returned to normal since my previous chemo three weeks before. All being well ... which touch wood has been the case so far ... I then attend the cancer/chemo unit on the Thursday morning.

Now I don’t know if you are aware of this but there are in fact 200 different types of cancer ... and over 50 chemotherapy drugs to try and kill them. Research shows that women with breast cancer may benefit from chemotherapy but its effectiveness depends on the type of breast cancer; the size of the tumour (in my case it was 6 cm); the stage of the cancer – the extent of spread (stage 3 out of 3 for me); the grade of the cancer - potential to spread (grade 3 of 3 in my case). Yep, the Yucky Lump was pretty big and aggressive so it is good news that the chemo seems to have already had a pretty positive effect on it.

Chemotherapy can be used before surgery to reduce the size of the breast tumour to make surgury less severe. It can make the difference between taking off the whole breast (mastectomy) or just removing the lump (breast-conserving surgery) which is hopefully what will happen for me. Chemo is also given after surgery to reduce the chance of breast cancer coming back or to reduce the chance that breast cancer will grow somewhere else.

Chemotherapy may be given in different ways, depending on the type of cancer and the chemotherapy drugs used. Most often chemotherapy is given by injection into a vein (intravenously) - which is what I have – but it can also be given as tablets or capsules or injected into a muscle or into particular body areas. Chemotherapy creams are also used for some cancers of the skin.

When I go to the hospital I go into a little consulting room and the Chemo Nurse (CN) puts a short, thin tube called a cannula into a vein in the back of my hand. A clear bag of fluid (a drip) is then attached to the cannula by a tube. When I was having my first chemotherapy drugs, EC, these were given manually by injection into a rubber bung in the tubing of the drip. What got me with the EC is that the drugs were in these huge syringes and I would sit there politely looking the other way, but because due to governance reasons, the nurses would wave these ruddy great syringes in front of my face saying “And this is your name, and this is your date of birth, and this is your hospital number and this is the expiry date ....” Thankfully with my new chemo, Tax, it is given directly from drip bag and with my first time the nurse even put a little cover over it so I didn’t have to watch it being administered.

Now, I have been through my fair share of Chemo Nurses. If the first one was “A”, then the last one I saw was “F”. I have never seen the same Chemo Nurse twice. The first one ... aah ... you never forget your first one ... Chemo Nurse A was very gentle ... just the sort of nurse you need when you are crying hysterically in the middle of the waiting room. She had just returned from her holiday cave home in Spain. Chemo Nurse B ... oh she also lives in Funky Town and we talked about the pros, cons and expense of that. Chemo Nurse C ... she had responded to the NHS’s international recruitment drive about ten years ago and we talked about returning to India ... oh, and holidaying in Scotland. Chemo Nurse D .... errr .. oh yes ... the perils of raising teenagers ... and gig racing.

The last time I went for chemo I met CN E. "I am starting to get a complex", I said, as we walked in to the little consulting room. "Oh yes", she said, "why is that?" "Well this is my 5th chemo and I haven’t seen the same Chemo Nurse twice. Perhaps I have earned myself a bad reputation?" "Well", she said, "I can assure you there isn’t a big sign up in the restroom saying Patient Paula Alert".  "Oh ... well I do get a bit emotional", I explained ...

Like all the nurses she was very nice. Actually, she didn’t talk very much ... instead she asked me about me. Not just about the chemo treatment and the side effects ... but the mental stuff ... about my world ... my cogs. I told her that I had been OK on the EC but was scared about the Tax. About the side effects. That I get depressed on the steroids and vent my anger and frustration on doing the housework – going to war with the Hoover and mop. She empathised with what I had to say. She also wondered whether I might like to talk to the Clinical Psychologist. She wasn’t the first. Both Chemo Nurses A and B had suggested the same. I said I didn’t have a problem with talking to a CP and that I was still considering it. But to be truthful I am wondering if she could handle me. I think it might be only fair to forward her details of my blog – then, once she has read it – she can let me know whether she feels strong enough to take me on.

It was after that conversation that the fun started. CN E tried to put the cannula in so that the chemo could be administered. She put the first needle into my arm – pop! "OOOw!" I said, "that hurt". "I’m sorry, your vein popped", she said, "I will try again". "OOOw!" Yes, once again it exploded and again it really hurt. "I am usually really good at this", she said, "I am sorry". I knew it wasn’t anything to do with her competence. So she tried again ... and once more, it was my veins just saying no, no, no ... they just were not having it. "Look", I said, "in the last couple of days I have had bloods, two lots of flu jabs and my body is protesting at having a new chemo". "I can’t try again, three times is enough" she said. "I am off to get reinforcements". I looked out of the window ... through tear filled eyes.

“I hear you are playing hard to get?” I swung around as CN F walked into the room. Now, I have now made it to season 3 of Sex and the City and I think Samantha might be having a bad influence on me. My response just popped out without me thinking. “Well ... now they have sent a chap in, I might just change my mind.” Thankfully, CN F got the cannula in and I finally got my chemo. After he walked out, CN E was obviously a bit miffed. "He had the same problem", she said, "but he obviously wasn’t as compassionate as me". "Typical man. Wham bam thank you mam", I assured her.

I am now well and truly in the middle of my treatment. Depending on when you ask me depends on how I view my progress down my treatment pathway. On a good day I am celebrating the fact that my final chemo could take place in six weeks and six days. On a bad day, when I push my treatment timescale to the ultimate limit, I wonder if I will be absent from work for every day of the six month sick note that my GP has just issued. My white blood count has taken a battering and they had to ask Dr Gillies for the go ahead with the chemo last time. If my white blood count doesn't rise sufficiently then they will delay the treatment for a week - which means the chemo could go well into February rather than being done and dusted by the end of January.  It will also be postponed if I become poorly ... and sadly one of the consequences of a low white blood count is that you are much more prone to infection or illness.

If the start of this BC journey was like a mad rollercoaster ride then I can now tell you that it now feels like I am sitting on the Magic Roundabout 

“Time for Bed” said Zebedee. “Oh good idea” replied Samantha.