Chemo Chat and Portacath Fitting

Today I had my chemo chat. This entails the nurse taking copious amounts of information from me about my appetite, any drugs I'm already taking, any allergies, weight (over), height (under), blood pressure (high - white coat syndrome) and blood.

She then tells us all about the drugs I will be given and their numerous side effects which involve the usual, nausea, hair loss, anaemia, constipation, diarrhoea, possible infection and so on. I am also told all about the drugs I have to take before during and after each visit. I will be rattling.

She seems surprised that I want neither the cold cap nor a wig. Hair loss is not the worst side effect in my opinion.

We also watch a short DVD about infection and how very, very important it is to get to the hospital straight away. So no stiff upper lips or heroics.

I am given a mountain of paperwork mostly about the drugs and their side effects.

I have my blood taken in the chemo unit, which depressingly is twice the size it was last time I passed this way. Cancer the "gift" that just keeps giving.

I am scheduled for my Herceptin on the 11th February and then the chemo on the 16th, after this they will be given at the same time every three weeks. Currently they're not sure if I will be doing 3 or 6 rounds as the consultant hasn't said, either way it won't be more than 6, this time.

Given that I have barely 2 usable veins in my right arm I am having a portacath fitted on Monday. Such are the wonders of the internet I found a video of one being fitted. Those of a nervous or squeamish disposition might not want to watch the video.

This will mean that the chemo nurses won't have to try and find a vein and also that the very few veins I have left will remain intact. Some of the advantages of a portacath over a Hickman line are reduced infection, leakage and I will be able to go swimming with it. For the procedure I will be sedated so I am hoping that I will be blissfully unaware of what is happening.

Little White Lies

I am still suffering the after effects of radiotherapy, overwhelming fatigue and a sporadic gippy tummy. Nothing that a long afternoon snooze doesn't sort out.

I have managed to stroll up to the post office very slowly, but came back slightly quicker due to the aforementioned gippy tummy.

As for the little white lies, I bump into a lot of people on my limited travels, and rather than tell them about the return of the cancer, I tell them that I have done my back in by fracturing a vertebrae and as it happens a rib as well. So whilst this is not actually a lie, I am being economical with the truth. I could so be a politician!

Why do I do this? Well it's partially to save me having to deal with people's reaction and partially because to save their feelings. Also, we all know people who, when you ask them how there are, actually tell you and I am trying to avoid doing that. Clearly not succeeding all that well as otherwise I wouldn't be doing a blog.

Post Radiotherapy Effects and General Musings

So my radiotherapy side effects are considerably less horrible than those I had with chemotherapy.

Last weekend I felt absolutely terrible and thought that this was from the first round of radiotherapy, so I was not really looking forward to the remaining 4 sessions. I now think that the reason I had such a horrible weekend last weekend was primarily due to the truly grim night I spent at Northwick Park Hospital lying flat on my back, not moving and definitely not sleeping.

I have a slightly pink back, according to Terry, which is subsiding. They also warned me that I would have back pain from the radiotherapy. Well given that I was in considerable pain before the radiotherapy, anything else would not really be a problem. As it happens my back pain is subsiding, so much so that I have reduced the considerable amount of painkillers I have been taking. My bowels are suffering a bit, but this might also be due to the reduction of painkillers. So it all looks good for the moment.

The MacMillan nurse called me on Friday to see how I was doing. Apparently, I have a gap of about 6 weeks before any further treatment, presumably to let all the after effects from the radiotherapy to abate, which is nice, as I have a couple of birthdays and a wedding to attend between then and now.

As you can imagine I have had a lot of time to ponder on my lot.

Every year I had a mammogram and an MRI of my remaining breast, which all came back clear. At some point over the last five years I did have a hystoscopy as I had a slightly suspicious discharge that came back clear. I also had an endoscopy when my hiatus hernia appeared to worsen, this also came back clear, in fact my hiatus hernia has gone. So it's not as though I have ignored potential symptoms. Would it be cost effective to do yearly full CT to every cancer patient? At what point would you stop doing annual CT scans? I'm not sure of the answers to any of these questions. I look back over the last few years and think of all the various aches and pains I have had in my back, shoulders and neck. All of which were sorted out with physiotherapy. I have had problems with my neck, shoulders and back for decades, primarily due to slouching over a desk for a living. Did the cancer move in there because I already have a weakness there? I think that on balance I probably caught the recurrence early. In some ways it is good that the cancer did take up residence in my bones and cause pain, rather than in some other organ where potentially I wouldn't have noticed until the prognosis was much worse. So overall I think that I probably have probably got the medical intervention as early as I reasonably could have.

Beginner's Guide To Radiotherapy

The first time round I didn't have to do radiotherapy, so this is all new to me.

So having departed Northwick Park Hospital on Friday lunchtime, we arrive at Mount Vernon Cancer Centre at about 2.30pm.

I am taken through for yet another CT scan. During this I am scanned and 4 tattoos are made, one slap bang in the middle of my decolletage the other 3 are located just below my belly button and the other 2 in a line with this one, on each of my hips. These are to guide the radiotherapy people as to where I am to be zapped.

Calculations have to be made and this all takes time.

Eventually, we get to go to the radiotherapy department at about 5.15pm.

I lie flat on my back and with the help of lasers, callipers and rulers, the two radiographers call various numbers to each other. The bed I am on is moved this way and that, the radiotherapy machine is also moved this way and that until both are satisfied. They leave through the 2 foot thick door. First they take an x-ray and then they do the actual zapping. They then return to do the next bit lower down. The same number calling is done and the whole procedure is repeated. The whole thing takes about 15-20 minutes.

The journey there and back takes more time than the actual treatment.

I come home to my lovely, lovely bed and spend a very good night sleeping.

I am warned that the side effects can entail, "sunburn" on my skin, a sore throat and possible bowel issues, either diarrhoea or constipation. Well that's covered all eventualities.

I am warned that my back pain may well get worse. I spend quite an uncomfortable weekend as various bits of my back at different times hurt.

I am dreading the next 4 sessions, however by Tuesday, whilst I am still walking incredibly slowly, my mood and pain are improved and bearable.

I have been slapping, or rather Terry has, large quantities of aloe vera gel on my back, which is initially freezing, but so far does appear to be doing the trick in keeping the "sunburn" at bay.

I spend my days having a lie-in, having breakfast, strolling very, very slowly, up the road, watching TV and having afternoon snoozes.

The side effects can last up to two weeks after treatment is completed. I am hoping that since I am only having 5 sessions rather than 3 weeks worth, that my side effects will be small and short lived, so that I can get back to normal sooner rather than later.

"A little disappointing"

So I got the all clear in September 2015.

In July 2015 I developed the world's worst stiff neck. So I go to physiotherapy and things improve.

In November I am put on a new drug Arimidex to replace the Tamoxifen. About 2 weeks after I start the new drug my ribs start to hurt for no apparent reason. I see the GP, have an X-ray and told to come back if things don't improve.

I go back and various scans are organised for December.

On December 9th at about midday I miss my footing stepping off a pavement sending a violent and shuddering shock wave through my body. The pain in my back is indescribable, but eventually recedes.

I have my bone scan on the 22nd of December. I go to see the oncologist on 7th January to be told that the pain is my back is the breast cancer cells taking up residence. She says that this is "a little disappointing" but is totally treatable. "A little disappointing" has to be the understatement of the year.

I have a further CT scan the following Tuesday to see if it has got anywhere else.

I get an urgent call from the oncologist's secretary the following day to come in on Thursday morning. This is not really what I want to hear, so have a sleepless night.

The reason for the urgency is because I have fractured my T1 vertebrae, which I now realise I did on December the 9th.

I need an urgent MRI to see if it is stable. If it is not then I need an operation at Charing Cross Hospital, to stabilise it.  For this I have to be admitted, so off to A&E I go. The MRI is done at 2.30pm and the images should be sent off to Charing Cross Hospital where the experts are. So now we wait and wait and wait.

I have to go on to the assessment ward where there is a bed and have to stay the night. I am also told to lie flat on my back for the rest of my stay in case the fracture is not stable. This makes going to the loo somewhat problematic. I have to use a bedpan whilst lying flat on my back and it requires 4 nurses to log roll me on and off it. There is absolutely no dignity in this and further it is incredibly difficult to wee lying flat on one's back.

I spend a very uncomfortable night, getting stiffer and stiffer. The woman in the bed next to me leaves her mobile on all night so whilst I am disturbed by the various notification bings she sleeps through them.

At 6.30am I am moved to another ward, orthopaedics and gynaecology. An interesting mix. I am put on a side ward and left.

At some point in the morning the most welcome sight is the Macmillan nurse Nicola who has come to find me. Apparently my images didn't go to Charing Cross the day before but are going now.

The Northwick Park Neurosurgeons are fairly confident the the fracture is stable so I can get out of bed to go to the loo. I will never underestimate the simple things in life again.

I eventually get the all clear and am discharged. Nicola returns to tell us to go to Mount Vernon Hospital to start my radiotherapy. This is good because had I needed an operation then the radiotherapy would not be able to start until the wound had healed.

This involves yet another CT scan and 4 tattoos.

I eventually get treated at about 6pm. The treatment itself is uneventful.

I return home never more thankful to see my bed.