Corinne Patricia Gibson 13th June 1963 - 10th April 2017

On the 6th April 2017, Corinne went into St. Luke's Hospice for a routine procedure, expecting to stay the night for recovery. However, once there, the staff decided it would be best for her to be admitted for her final days.

It had always been Corinne's plan to see out her last days in St Luke's - in fact, I went with her to visit for the first time when she registered as an outpatient for complementary therapies. Virtually from the moment she knew that this was not the type of cancer you could recover from, she knew that she did not want to die at home.

Over the days following her admission to St. Luke's, we managed to ensure that the extended family were aware of her position and had the chance to come and see her. On the 9th April, she was given painkillers and sedatives to ease her pain and ensure her comfort.

In the early hours of the 10th April, Corinne died in her sleep.

Her funeral will take place at Hendon Crematorium at 2pm on Saturday 29th April 2017.

In lieu of flowers, and in accordance with Corinne's wishes, a donation can be made in her name to St. Luke's Hospice - www.memorygiving.com/corinnepatriciagibson or contact James Funeral Service 020 8907 6655.

Little Things Mean A Lot

Here is a list, which is neither exhaustive nor comprehensive, of the things I kind of took for granted before I was diagnosed with secondary breast cancer.

1. Walking. I used to walk for miles, in fact I used to walk four miles, swiftly but not with much style. Now walking to the end of my road is beyond me.
2. Stairs. I used to climb stairs without so much as a backward glance. Now every staircase I see looks like the North Face of The Eiger to me.
3. Standing. These days I can barely stand for more than about 1 minute without the feeling that I am about to collapse. This makes standing in supermarket queues challenging.
4. Appetite. Before it was lovely, if I was hungry I would eat whatever I fancied. Now my appetite is somewhat erratic. I do eat my 3 meals a day, but quite often I cannot finish even the smallest of meals.
5. Digestive system. My digestive system used to work as prescribed, eat, digest and excrete. Now I eat, the food seems to sit sluggishly in my intestines, and as for excreting well that's a real lottery.
6. Work. I used to do my contracted 2 full days a week. Now my appearance in the office is random and quite often short-lived. I am very thankful that I have such an understanding and accommodating boss.
7. Sleep. My sleep was never that good beforehand, but now it is pretty much non-existent mainly due to steroids. My lack of sleep is almost certainly a major contributing factor in all of the above.

Things I have never taken for granted. My family and friends, without whose practical and emotional support my current life would be even crappier than it is.

My immediate family have put up with my general grumpiness and occasional irrational outburst with kindness, understanding and good humour. They have also provided endless practical help, such as getting me up off the floor as my legs simply don't do that anymore.

I hope that people realise how very important communication is, generally electronic, be it Whatsapp, email, text, facebook, or possibly even the telephone. Given my ability to plan for anything is quite problematic, these communications mean that I can be in the loop, so to speak, and that is hugely important as it means I feel slightly less isolated.

Anger, Euphemisms And A Very Busy Week

There is a Facebook page which claims that cancer can be cured through nutrition and exercise. Their "mission statement" is as follows:" I've seen cancer hurt too many people around me. The disease is preventable, beatable and curable. Passionate about nutrition and well being". Well clearly this person knows something all the oncologists don't. The Facebook page is littered with "fridge magnet" maxims. My particular favourite is:
1. Stop eating refined sugars.
2. Eat alkaline foods only
3. Drink plenty of clean water
4. Reduce stress
5. Exercise
6. Eat as much fresh organic fruit and vegetables that you can
7. Avoid processed foods
8. Detoxify your body
9. Boost your immune system
10. Follow an anti-inflammatory diet.

This basically boils down to, eat healthily and do some exercise. If only it were that easy. On a point by point basis, cutting down on refined sugars is clearly a sensible thing to do, however there are times when the only thing that I want to eat is a bowl of Sugar Puffs as that really is the only thing that appeals. Eating an alkaline diet is a waste of time as the human body rebalances the acidity/alkalinity. Personally I drink nothing but clean water. I would love to reduce my stress, but the biggest source of my stress is my cancer! Ah exercise! There are times when getting out of bed is all the exercise I can manage. I would love to eat lots of healthy fruit and veg but again there are times when you have to eat what you fancy which might not necessarily be organic fruit and veg. Avoiding processed foods, again a sensible thing to do but not always possible. Detoxifying is what your liver and kidneys do, so again something of a waste of effort. Boosting of the immune system easier said than done, ditto the anti-inflammatory diet. To say I was angry about this is something of an understatement and I realise that many people will clutch at any straw they can.

As you can probably imagine death and the thought of it does tend to preoccupy my waking thoughts. Many people will have walked out of their front doors this morning never to return. C'est la vie. The fact that my life is limited is annoying because I can never forget that I will almost certainly die before you. This is not as annoying as the euphemisms for death. When I die, which I surely will, I will  have died, I will not have "passed". I always feel the urge to ask what have they passed, their driving test, Spanish "O" level. I will not have gained my wings, I certainly will not have joined the angels. Strangely I have no issue with kicked the bucket, popped my clogs or shuffled off this mortal coil.

Finally, this past week has been somewhat packed. I had my usual blood test on Wednesday, arrived on Thursday for treatment to be told that there was a cock-up on the appointment front and I should be in on Friday. Good job both my husband and I have such understanding bosses. We return the following day where they spend the best part of 2 hours trying to get my portacath to work. Stuff would go in but no blood would come out. Eventually they decide that even though there is no pull back they will use it anyway. The treatment takes about 20 minutes, so I spent more time trying to get the port to work than having treatment. I have to have yet another blood transfusion as my iron levels had fallen through the floor. The nurse finds a vein in my arm to take samples for cross-matching. Leaving a lovely bruise.

On Saturday morning I go to the ambulatory unit for my transfusion. They too eventually find a vein and the very boring procedure begins. I have now managed to get it down to 2½ hours rather than 3. My previous blood transfusion had been a Lazarus effect on me, this time the effect has been less dramatic but just as effective. I think that my transfusions last about 6 weeks so I shouldn't need another one until the end of March. I'll keep you posted.

Other than that my side effects from the drugs I am having have been minimal and cope-able, which is nice.

At some point prior to this I had agreed to having a sofa-bed delivered on Saturday. They ring about a hour before delivery but unfortunately cannot get it up the stairs due to a newel post. So it is currently sitting on its end in the hall awaiting an upholsterer to dismantle it and reassemble it later.

Why Don't Doctors Listen?

Firstly I should point out that I have nothing but admiration for the medical profession. They do a difficult job in trying circumstances. However, I think that they could all do with a course in listening to their patients.

On three occasions I have been left with the feeling that the doctors I have spoken to have really not heard what I have had to say.

I am well aware of the difference between bone pain, muscle pain and nerve pain, as I am fairly certain most of us are.

Some months ago I complained to my lovely oncologist that I had an achy back and could do with a massage as I had done absolutely no exercise for over a year. I had gone from swimming, yoga and walking to doing practically nothing apart from curling up on the sofa feeling sorry for myself. Her response was "it's the cancer." It really wasn't, firstly it was in a different place and secondly is was muscular rather than bone. Anyway, she acceded to my request and I have been having massage therapy for the last few months and my back feels much better.

My second not listening doctor was my GP. I have an itchy back, the lower part is because of the dry skin from radiotherapy, the top part is because of a misfiring nerve, not dry skin. This much is obvious as there is no dry skin to be seen. Further, since my mastectomy a little over 6 years ago I have a numbness that extends from my sternum round under my arm to approximately half-way across my left shoulder blade. the problem with the itching is that because it is numb scratching actually does very little most of the time. In spite of the evidence before her, she maintained that it was dry skin. So I am issued with much ointment which does nothing for the high up itchiness.

My third not listening doctor is the chemo unit oncologist and is also related to the itchiness. A couple of days before I was due in the chemo unit the itching was unbearable and so I attacked it with a hair brush. Big mistake! What happened was I completely buggered up the nerve and instead of itching it was excruciatingly painful. No amount of painkillers helped as they are useless against nerve damage.

I mention this to the chemo nurse who calls over the oncologist. I fully explain the 6 years of numbness and itching, the subsequent damage caused by the hairbrush. As I am explaining this I get the feeling that he really isn't listening. He looks at my back which obviously shows nothing. He disappears off to look at my most recent scan, he returns telling me that it was progression of disease. It isn't because whilst my bone mets are annoying, irritating and occasionally painful, they are very stable. He is wrong. He clearly ignored what I had told him about the previous 6 years. He offers me morphine which I decline as it would be of no use at all.

As I said at the beginning I can tell the difference between the various types of pain and I know what is going on inside my body. All I want is for doctors to treat me as an intelligent human being who knows what is going on with my body.

New Drug New Side Effects

I am now taking Capecitabine. This is taken in tablet form, 3 tablets twice a day, 12 hours apart, for two weeks with one week off.

The tablets are large but bizarrely I find that taking them is actually quite easy. In fact I have more problems with smaller tablets.

The side effects are myriad and I appear to be suffering less than most. My side effects appear to be limited to the usual fatigue, (there has to be a better word for the chemo induced fatigue, it simply doesn't get across the total wiped-out-ness that occurs) and constipation. I have to say that I find constipation considerably easier to cope with than the alternative, especially given my inability to move faster than a snail. We have 3 lavatories none of which are on the ground floor, so I have to scale the alpine-like stairs. Interestingly, my thighs muscles are also affected, they are achy and painful which makes turning over in bed problematic and climbing the aforementioned stairs a slow process.

The other issue with taking tablets for 2 weeks on 1 week off is that it is a constant reminder of my cancer. Whereas before I'd turn up at the chemo unit, have treatment and then not think about it again for 3 weeks, tablets mean that I cannot lapse into a sweet reverie of being "normal".

Other than a nerve pain in my shoulder, which has nothing to do with the cancer, I'm doing quite well apart from the tiredness.

Interestingly my appetite has returned with a vengeance which is really very nice. Moreover, food generally tastes like it should which is yet another bonus.

I can only hope that this round of treatment does its stuff and reduces the size of my tumours.

Not Such A Miracle Drug

Kadcyla the wonder drug clearly ins't enough of a wonder drug as it hasn't worked for me. What is so annoying is that all the various aches and pains I had were disappearing and thus lulling me in to a false sense of security.

Having said that there is always a little alarm bell that rings, so when the lovely oncoligist gives the bad news, it's not entirely unexpected. Interestingly, the tumours in my lungs appear to have disappeared and my bone tumours are stable, it is only the ones in my liver that are being a pain, both literally and figuratively.

What happens next is yet more, different treatment. I will be on Capecitabine which is an oral chemotherapy, which means 1 tablet, twice a day for two weeks and then a week off. As with all these things there are side effects, very sore hands and feet, dodgy bowels, hair thining and all the rest. Assuming that these don't work then there is yet another line of attack. In the world of cancer treatment "having a plan" is very important.

As you can imagine I am feeling a little sorry for myself. I think what bothers me more than anything else, is that if I were to be killed by the proverbial bus today, I'd have no time to worry, being told that my horizon is not quite as far away (or possibly it is) as I had initially anticipated is bit like having the sword of Damocles dangling above me.

The Week From Hell

A day or so after my blood transfusion, the cold that had been lurking in the background decided to make itself felt, with a vengeance.

I managed about 2 hours at work on the Monday before I decided that bed would be a better plance to be.

I spent the rest of Monday, all of Tuesday and Wednesday in bed.

On Thursday I had a long standing doctor's appointment for my very itchy back. I reckon that given my appointment was at 10am I would probably be back home in bed by about 11am at the latest. I arrived at 9.30am and go straight in as the other patients had not turned up. Result! The doctor prescribes various creams and anti-histamines and then checks my blood pressure, temperature and heart rate. It turns out I'm tachycardic. She is concerned. I am not. She wants to run blood tests and all the rest. I am fed up with having needles stuck in my arm. We agree that the practice nurse will do an ECG. It shows nothing untoward apart from a fast heart rate. The doctor says it might be because of an infection. At some point a possible infection is changed to a pulmonary embolism. I have no other symptoms other than a fast heart rate. I very much doubt that it is a PE as I have had a near permenant nose bleed for the whole of the previous week which would indicate that blood clots are not a problem.

After much discussion and negotiation I agree to go to the ambulatory care unit.

I arrive at about 11.30am and have an enormous cannular inserted, badly, into my arm. More blood is taken. I am then sent for yet another ECG. Then I wait and wait. I would like to point out that I like ambulatory care as they do get their patients out quite quickly. As I wait all I want to do is go home to bed. At about 1pm I get to see a doctor who asks me all the usual questions about how I'm feeling, my bowels, aches, breathing etc. He then checks my heart and lungs with his stethoscope. He says that my platelets are a bit low, but they won't give me a transfusion as it's really the oncologist's call. He says I'm fine and can go home.

The same nurse who put the cannular in comes to remove it. In my haste to escape I did not put enough pressure for long enough on the puncture site. As I am walking away from the unit I can feel a warm wet sensation emanating from my elbow. I apply pressure and hope for the best. Next time you are watching some TV or film thriller where the actor rips the IV drip out of their arm and walks off, remember that there should be a trail of blood. I digress. I get home and the blood stain on my jumper is substantial, but at least the bleeding has stopped. I finally and gratefully go to bed.

Friday I have a full CT scan booked in the afternoon, so off I go, having not eaten anything for 4 hours as instructed. I have to have yet another cannular inserted. I point out to the lovely, lovely radiographer the trials and tribulations of the various cannular insertions. He looks at my arm, and oozing the most comforting confidence, says "No problem." He was right, straight in first time.

As the weekend progresses my cold finally begins to abate and by Monday I actually manage to do a whole day at work which fills me with a huge sense of accomplishment.

Beginner's Guide To Blood Transfusions

Firstly let me explain why people with cancer need blood transfusions, or at least one of the reasons. A lot of the treatments given basically make the patient anaemic and no amount of iron tablets will combat it. Hence the need for the transfusion.

The ambulatory care unit in the hospital is the place where transfusions are given.

I arrive just before my appointment at 9am and am told to expect to be in the unit for the day. This is helpful as the disabled parking at the hospital only allows 6 hours with no return within 4 hours. Good job my lovely, lovely husband came with me, so he could move the car at the appointed time.

First the joy of having the cannula fitted. Sadly, the only vein the excellent technician can find is at the side of my wrist, near the base of my thumb. My least favourite spot. On the plus side he did find it first time. Then several vials of blood for much cross matching and the like. This will take at least 90 minutes. About 2 and half hours later the results come back and then we have to wait for the powers that be to authorise the transfusion, another 30 minutes or so. I am asked whether I would like 1 or 2 units. I opt for 2 as I don't really want to go through this again any time soon.

3 hours after we arrived the transfusion begins, after much checking of me, the blood and everything else. I thought that they were thorough in the chemo unit, but the ambulatory care unit are extremely thorough.

The transfusion is given over 3 hours and my temperature and blood pressure are checked a lot. This is in case I have a reaction to the blood. So in spite of the fact it is cross matched and the correct blood group there is still a risk that something could go wrong. During the 3 hours I snooze on and off. Reading the paper proves too problematic with my right hand wrist being pretty much incapacitated,

At one point I open my eyes and everything in the ward seems brighter and more in focus, clearly being anaemic affects more than just one's ability to breath.

After the 3 hours are up, the next unit arrives and we then begin the negotiation to have this unit put through in less than 3 hours. After the first hour or so and no reaction the time is reduced by about 40 minutes.

My transfusion finishes and I pop to the loo which is about 10 yards away. No puffing or panting. Result! Whilst I do feel full of beans, relatively, spending the day laying around is actually quite tiring. I sleep really well that night. However, I wake to find that the cold that has been lurking in the background now appears in the forefront with a vengeance, but I still feel considerably less shattered than I had the previous morning. I am hopeful that I won't have to have another transfusion for quite a while yet and am also aware that iron tablets are a complete waste of money when dealing with chemotherapy induced anaemia.