CHEMOTHERAPY - Probably not for the squeamish!!

2^nd February 2007

Five down - only one more to go!!!

Yesterday was the fifth chemotherapy session which I have been having at three weekly intervals.

I can’t believe how quickly the time has gone; that the final session will be in three weeks, and that, however strange it may seem, I have enjoyed and am still enjoying this whole life changing experience.

I thought that today, I would go through what happens when you receive chemo as it rarely seems to be talked about and therefore many fears are born in the darkness. It is certainly not the ghastly process that one imagines at all, though it’s not a picnic either!

My three weekly appointment is always at 9.30 on a Friday at the Medical Day Centre at the Royal Marsden Hospital, Fulham Road and I have been fortunate to have a close friend or family member willing to accompany me each time.

Frances Topp, my old friend from Music Week days collected me in her car and we set off at 9.15, checked in 15 minutes later and took a seat in the cheerful circular waiting room with several others, and Florence made her first appearance of the day with the free tea trolley. (Actually, the only gripe I have through this whole business is that Florence will not provide guests of patients with a cuppa and that makes my cuppa less enjoyable. I think I will take it up with the powers that be next time).

The day is divided into two parts with a two hour break in the middle.

The first thing that happens is that you are weighed. This is because the chemicals are made up very precisely and if you have gained or lost weight since the last mixture, it may have to be adjusted. Blood pressure and temperature are taken by a junior nurse, and then you are called to the oncology room to have blood samples drawn into two phials for analysis in the laboratory. This is to make sure that your red and white blood cells have repaired themselves since being blasted on the previous session. So far, mine have always been normal but, if they weren’t I would be given a blood transfusion and we would then carry on so that the treatment plan was not interrupted. The blood is taken in the oncology room, another circular cheerful room with a circle of sage coloured armchairs with leg rests and a wide arm to put a pillow on to hold the arm they are using. Alongside each chair is a drip stand.

This is the part I dislike, as my veins tend to do a runner when they see a needle approaching and it has taken the nurses up to 4 attempts to get it in. The nurses for blood tests are juniors and if they fail to reach a vein twice, must hand you over to a more senior nurse. Once the blood has been taken, it is back to the waiting room and another cup of tea while you wait to see the Doctor. My meetings with Professor Smith’s team of doctors has always been a good experience. This is the time to report back on any side effects you may have experienced so that they can vary the pills they give you to take home, and to ask any questions you may have.

I have always had a few things I wanted to know and take a notepad with questions written down. I generally see Dr Sutherland who is exceptionally courteous and caring and makes me feel that she has all the time in the world to listen and to reassure me.

Providing the blood tests have returned and are ok, the Doctor orders up the chemicals and then you are free to for two hours whilst they are being prepared. The waiting room with its friendly ambiance and all the time in the world to spend quality time with a friend or getting to know fellow sufferers and compare notes and tips on how to get through the treatment has also always been enjoyable but it’s nice to take a break from it and do a little retail therapy and have lunch. . Yesterday I learned that there is a “Look Good, Feel Good” class every two weeks in which beauticians and make up artists from various Oxford Street stores give you facials and make up lessons for a couple of hours, and send you off with a goody bag containing about £280 worth of expensive creams and makeup. The “Look Good, Feel Good” company is an American franchise which has been operating over here for about 12 years. It currently visits 42 UK Hospitals every two weeks and is adding 5 more this year. The products are supplied by top companies such as, Esther Lauder, Elizabeth Arden, Revlon etc and the make up artists from the stores or TV studios. It is an act of charity on their behalf and a fairly brilliant marketing idea too, as I imagine there must be a tax advantage plus an opportunity to introduce people to products that they might normally not buy, but could possibly do so in the future. (or am I being cynical?)

Anyway I have put my name down for the next session! There are also free massages and pedicures which I will also book for. Hooray for the National Health in this case!

Frances and I went across the road to the Crown Pub for lunch. It was quite poignant as I remembered the last time I went there about 27 years ago with my Jack, my Dad who was having radiotherapy for his throat cancer, and memories of how brave and cheerful he had been came flooding back. When not staying with us in Esher, he took a flat in Sydney Street round the corner from the hospital. He used to say that he had his first and last digs in Sydney Street. The first when he was 21 and had just arrived in London, cost him about £2.50 per week “with the landlady”!! – The last about £250 a week “without the landlady”. He had hired a little mini minor and used to drive it swigging water from a silver flask because his mouth and throat were very dry from the radio treatment. He longed to be arrested whilst doing this so that he could prove to the police that it was only water. Other memories were of “sneaking” on Dad to the hospital staff because he had smuggled sleeping pills,whisky and cigarettes in in his suitcase which were promptly confiscated, as I was worried about him as he was just about to undergo an operation to remove the lump. It left him with a temporary hole in his throat which, mercifully, did not affect his voice, but, defiant to the end, he would shock us all by blowing smoke rings through it before it healed up.

It’s a lovely pub with a conservatory restaurant at the back and a friendly and jolly young barman. We had a huge Caesar salad each and shared a large bowl of freshly made Carrot and Corriander soup.

There was just time for a little shopping and then a phone call on my mobile from the Nurses advising that the chemical concoction was ready and waiting for me and we headed back to the Oncology Room.

Now for the worst bit which is the insertion of the Canola. The Canola is a sort of valve that is inserted into a vein with a thicker and quite painful needle, then taped on to you. It receives the Saline drip in one part and the syringes of chemicals in another. It is inserted by a senior nurse with a lot of experience.

It took two attempts yesterday as the nurse wasn’t completely happy with the first one and there seemed to be a slight swelling when the drip went in. She was humming and hawing about whether to proceed. “Just carry on and bung it in” I said, I’m sure it will be alright, as I was not wanting to go through the needle insertion again. “We have to be very careful” she said. “Why is that?” I said. “Because if the vein has been nicked on the other side causing a puncture, the chemicals will leak into the surrounding tissue and kill it and the damage is irreversible. “Ah” I said, “Lets try another vein then”! Luckily, the second attempt went in smoothly and I relaxed with the worst part over.

As I have wanted to try and “keep my hair on” if at all possible I have opted to have the cold cap treatment. The cold cap looks like a jockeys hat and comes out of the freezer and is jammed onto your head tightly to freeze your scalp. Not pleasant at all, and not everyone is able to take it, but, in my case I decided to persevere. After it gets so cold you don’t think you can stand it any longer, if you endure just a moment more it starts to ease off and become bearable. The reason behind the cap is that the hair follicles which are fast growing cells are shrunk by the cold and therefore not so likely to let in the toxins that will temporarily kill them off. There is no guarantee that it will work, but I have been fortunate in keeping, albeit a fairly thinnish
covering of hair on my head, plus a good fringe so that I only need to wear little knitted hats and have not needed the two wigs I bought in advance.

I have a lot of fun tarting up my various little hats and turbans with silk flowers and costume
jewellery and I’m so glad its winter as they are nice
and warm to wear.

Now for the chemicals!!!! After the saline drip has been got going, the nurse shows you the phials of chemicals and carefully reads you the label details printed on each one. Your name; the strength of the prescription, and once again, asks you for your date of birth. This is a frequent request and is required whenever anything significant is done to you. At first I thought they were checking to see if I was compos mentis as they do when they ask mental patients “Who is the Prime Minister”? and “what day is it today?” etc. However, I soon learned that my sanity is not in question or an issue. It’s just to make absolutely sure that they are administering these toxic and dangerous chemicals to the right person and that there aren’t two patients with the same name.

After the saline drip which is to coat the vein prior to the strong stuff which follows, has started flowing, a small colourless phial of dexymethasone is introduced and injected into the canola by the nurse who will sit with me till its over. Dexymethasone is a steroid and is given as an anti-nausea drug. It tricks the mind into believing that there is nothing wrong. Without it, the stomach would reject the toxic chemicals immediately, and lunch would be smartly deposited on the floor along with the ‘poison’ which needs to stay in your body in order to do its work For about a minute this drug causes a very strange reaction which is the feeling that you have inadvertently sat on a hedgehog. Extreme prickling in the nether regions is due to the nerve ends in that areas’ reaction. It’s quite unpleasant but passes quickly. Dexymethasone is also a stimulant and will keep me flying for about 24 hours till it wears off, and once it has been given, the final stage of the insertion of the chemicals can begin.

I am having a prescription for my type of cancer called FEC which consists of three chemo drugs called Fluorouracil, Epirubicon and Cyclophosphamide. The first tube is about 8inches long, 2” round and contains cranberry red coloured fluid. It will cause me to excrete rose coloured pee for the next 24 hours! There are two tubes of this and it is followed by the other tubes which are colourless.

The only other side effect during this process is an odd feeling in the head; a prickling sensation in the nasal area and light headedness if it goes in too quickly, but this disappears once the chemicals have all been inserted. The drip continues for a few minutes and then the cold cap is removed after another 15 minutes. Then I’m free to go home once I’ve collected the tablets I need to take home with me which will control any further nausea.

Afterwards, I generally join Mia and her friend Isadora at their swimming lesson and have a drink with Amica and then go to Aimi’s for supper.

Today is Saturday and a feeling fairly normal day. I have got plenty of chores done and am going to the cinema this evening to see “Music and Words” but after that a sort of grey cloud will descend and I know that the next two days will be a write off.

For the next two days I will not want to leave my bed or the sofa except to get light food such as soup, fruit and yoghurts and plenty of water which is vital for the first 72 hours. I generally lie in bed all morning dozing between phone calls from loyal friends who know what I’m going through. I can’t talk for long but it is a comfort to receive them and then I nod off again till the next call.

At lunchtime I go down to the kitchen and get some food and take my medicinal herbs and then retire to the sofa and telly, more dozing and phone calls for the afternoon.

There is a blissful freedom in being able to sleep as long and as often as you wish; get up and go to bed when you feel like it; stay in your night clothes all day and eat when you’re hungry without a time table. All without feeling guilty! I absolutely LOVE IT! And the feeling of giving up control to the Universe and “letting it all happen” knowing there is a time limit and true to past experience, I will feel better again in a couple of days. The only thing I make myself do each day however I am feeling is to soak in a hot bath as it makes me feel better.

By Tuesday I will be able to totter out for a walk and lunch with a friend or run a couple of errands and collect Mia from school.

The following two weeks will be an upward swing. In the middle of the cycle – days 10 -14, I will have to be careful not to catch an infection as this can be quite serious when your blood count is at its lowest and the immune system not able to fight it off. I carry a thermometer in my handbag to check my temperature at this time, a card from the hospital with details of what needs to be done if I get sick, and hide my face with a scarf when out. I also avoid touching surfaces such as door handles etc. with my hands, and try and use my sleeve instead.

Connie’s advice – not to touch my eyes, nose or mouth when out has been invaluable as these are the points of entry for germs and viruses and, so far, touch wood, I have not ever had a cold during this winter period.

More soon, but I am finding that the main symptom which is fatigue is definitely accumulating with each cycle and it is getting harder to put pen to paper when I constantly feel like a nap, but I promise I will endeavour to keep this going.

By for now.

Ps All the drawings on this posting were done by my very talented little cousin Irene who stayed by and with me for the fourth chemo session and who has been a great support from day one - see her website www.irenesanderson.com .