The Beginners Guide to Breast Cancer – Part Two – Chemotherapy
Chemotherapy is tough, cruel, hard work, messy, exhausting and life saving. It is the last of those that everything hinges on. I was given six weeks, then six months to live. The six months was based on immediate intensive fourth generation cytotoxic treatment, which including chemotherapy, and on having radiotherapy at Addenbrookes to attack the intensive disease burden in my spine and bones. I said initially on the day that the primary cancer location was found, that I did not want to have chemotherapy, but would wait and have my baby and then maybe consider a lighter form of chemotherapy. I had seen the effects of treatment on a friend, who sadly passed away from breast cancer a couple of years ago, and knowing only details from a distance, thought that I could choose not to go through that. What I did not know is that I had no choice. No choice at all if I was going to have any chance of extra, precious, borrowed time with my amazing husband and with my beautiful babies big and small. I thought that I had choices, but I had a closed door. Take all the treatment that was possible, or risk very little time at all.
I believe that it is my duty, my job, to be there for my children and to look after them twenty four-seven, and to keep them safe. As a result, I will take every treatment option that is possible. I am grateful to be in the hands of an excellent team in the oncology department at West Suffolk Hospital and under the radiotherapy department at Addenbrookes, Cambridge. I know that there will come a point, possibly quite soon, when I will not have treatment options any more, but will have come to the end of the road medically. For now, I will grasp every treatment with both hands and gratitude for the wisdom and skills of the team looking after me, because I have to be here. I have washing to load, I have mess to make, I have dinner to cook (sometimes), I have to kiss my babies goodnight, I have plasters to put on scraped knees and bumped elbows (“plasts” as my youngest calls them), I have to read bedtime stories and make up fairy tales and songs and ditties and rhymes morning, noon and night. Especially at night, everyone has nights when they need more fairy tales than others. I will be starting round two of six cycles shortly.
I had eight days in which to wean my youngest from breastfeeding, having fed continuously my six children over the past fourteen and a half years and as a trained breastfeeding counsellor, this was another hard blow and one with huge emotional fall out for both of us, and for my now husband, who suddenly had a daughter who was bereft of her main source of comfort and sleep inducing bliss. And had to be periodically separated from a Mummy who previously had never even had to interrupt a feed, let alone leave the house in the middle of the night in an ambulance halfway through a feed. After some hideous nights for my husband, she did begin to adjust, she twiddles her tummy button for comfort instead, and has become very close to Daddy as a result of my not always being here or available, and although she asks for milk from time to time, she seems to accept the response that they are broken and the doctors are trying to make them better with the “special medicine”. I needed radiotherapy and radioactive heart scans more than she needed milk, a new priority was set. I needed to do everything I could to start treatment as fast as possible as the pregnancy hormones had also been spreading the cancer tumours faster each day, as they increased and as our son grew. I was becoming more ill with every day that passed and was by this time in a wheelchair and very ill indeed.
I started a six cycle course of docetaxel around a week after giving birth. I first of all had to have my waist length hair cut to shoulder length,. as otherwise the cold capping system would be a waste of time as it was way to thick and heavy to keep, but shorter hair would have a better chance of success of staying on my head. This was distressing, but in the context of having given birth four days earlier, did not really touch the sides when it came to having it cut off. I have an amazing hairdresser, who did it with much calm and sensitivity, having never had anything but very long hair all of my life, I thought that I would not look like “me” without it. But I am still me. Totally me, with long or shorter hair. I made sure to keep the hair too, in case a wig would be needed at a later date. Even then, I had no illusion that I would only need one course of chemotherapy.
The chemotherapy and antibody treatment is palliative only, so it is intended only to try to contain the current tumours and metastatic spread. It is not expected to shrink it and it cannot make it “go away” as most people seem to assume. I was given too high a dose on the first cycle, as it was based on my pregnant weight, not my post natal weight by accident, but this caused a bad reaction and led to some hair loss at the top of my head where the cold cap never quite touched due to poor fit (they do not come any larger, so a case of tough luck) and a hospital admission of eight days on IV in an isolation room on the oncology ward. This was five days after our wedding and was not the way I had in mind to spend our first married days, but we did not go through a wedding in the middle of this with any illusions of rose petals and cherubs. The reality was more commodes, giant pants and green sick with moss like stuff in it, and alot of gruesome things that you really do not want to read about and the comedic demise of my slippers in the hospital…some of the hardest days to date for my husband came between chemotherapy cycle two and three. I picked up a stomach infection from one of my daughters when she was sent home from my ex-husband’s without the crucial information that she had been ill all weekend, and combined with the higher dose of the docetaxel, I became very, very ill. Something that many people around have had to be reminded of, I think because it is just not in their world of experience, is that during chemotherapy and cytotoxic treatment, you become immuno-suppressed and are very prone to picking up infections. What may be a minor cough and a sniffle to you, can put a chemotherapy patient in a vulnerable infected state and leave them extremely ill. People will ask to come and visit and say things like, “Oh, I have a terrible cold, but I won;t come close or hug you or anything, I will just take the girls to the playground for you”….why would I want to take the risk of going back to an isolation room as an inpatient and why would it somehow be OK for my children to come into contact with their lurgy? Bottom line, if you are visiting someone in the middle of chemotherapy, please find out at which point they are in the cycle – try to time visits to their strongest point and do not go with even the mildest of colds or ailments. Intensive cleaning and hygiene is needed in the household too, including deep cleaning of bathrooms and cleaning of things that people often forget, like door handles. A really top offer of help would be to offer to do some of this kind of cleaning for the family. I cannot bend, for instance, so cleaning a walk in shower or toilet is physically very difficult and during chemotherapy my mobility was much worse.
Something that others may find helpful in a similar situation, was using something like a closed Facebook page to co-ordinate offers of practical help within the household. At one point, we had people coming to “help”, who merrily piled our clean, folded washing in to the washing machine (on the wrong temperature settings) meaning well and in the best helping spirit, and did not know about the growing mountain of dirty laundry desperately needed for the next week of school, for instance. People would all come at the same time – maybe five people at once and then there would be no cover available when my husband desperately needed to leave the house alone to bring me supplies at visiting time in hospital. A page helped to co-ordinate the generous offers of help and to let people know what and when we did need things, and also to arrange back up plans and help for each appointment. Requests for help can then be scaled up or down depending on the family’s needs, whilst still keeping information relatively private.
Chemotherapy causes taste changes and difficulty eating and nausea in many people. High dose anti sickness tablets are taken immediately following the dose and for the next few days, alongside many other tablets and injections designed to keep everything as smooth as possible. Many people experience problems such as mouth ulcers, (and severe nausea and heartburn and indigestion) and often mouthwashes can be prescribed to help with this, alongside other options. It is often hard to eat at all for the first few days or week following treatment. The hospital dietician can prescribe high energy drinks, and can advise on diet. Due to severe bowel reactions to each treatment, I needed to and still do, avoid high fibre foods. Foods and drinks which used to be pleasant, and which people associated with me (like Galaxy and Guinness) have become unpalatable or unpleasant and the taste changes do not stop when the chemotherapy stops. I still cannot taste many things properly, or the taste odd or unpleasant, four months on. Meals oftrn leave an unpleasant lingering taste, despite having enjoyed the meal, and I need to brush hard and use prescribed mouthwash to get l rid of it. Fruit juices, smoothies, fresh fruit and fruit lollies can all be helpful in the first week after treatment, along with very easy to digest but nutritious home cooked foods, like fish pie or smoked salmon with new potatoes and peas.
My mobility was very poor when I started chemotherapy. The hospice that I am under has a good occupational health team, who were able to put in place things like a toilet seat (the throne), with arm rails, a shower stool, bed rails, later a bed mattress that lays on top of the bed and can be raised and lowered as needed, special “perching” chairs – which are the only things that I can now tolerate sitting onto work in my workshop and office due to the residual pain from the spinal radiotherapy, raisers on an armchair or settee, and walking frames – useful just to pull up onto to get from sitting to standing. If I was living in a house that were my own, I would also have been able to access grab rails, and possible part funding from the local council towards a stair lift. I did not know that his help was available for at least six months, although I was under the hospice officially since January 2015, so ask, ask, ask. I also self referred to the adult social services team following a fall at home that I could not get up from, and after four months of chasing, achieved a daily carer for an hour a morning, with an extra hour in the afternoon for the three days following treatment. This helped at the worst times and was a comfort to know that there was back up during the better days. I did not need it afterwards, but will access it again if I feel the need. I just hope that your local county council do not take four months to put the help in place, and constantly deny that they have ever received the on-line application that you are viewing the screen shot of whilst talking to them.
I experienced alot of nerve damage in my arms, legs, feet and hands due to the chemotherapy, which has not gone away with the cycles ending. It is not known whether this is going to to be permanent or not, but four months on I think it must be. This has made my work impossible for many months at a time and causes alot of pain and difficulty doing simple tasks, such as opening a tin of soup or doing up a button on my children’s clothes or picking up small objects. Using a mobile phone screen suddenly becomes very hard and tear producing frustration can ensue. Small things can help, for instance recently changing phone to one with the same features and functions, but with a larger screen and an optional stylus has helped no end. Using a tablet which means that the screen can be enlarged on most things being viewed has been a god send. This damage has recently been added to by the whole brain radiotherapy effects, with some paralysis in my hand and arms and leg. I have been medicated for it since the summer, which helped some, but being unable to sometimes open food or open a door handle can be extremely upsetting and frustrating. It means too that whatever I type, since the radiotherapy, has random letters in every word, despite having been able to speed touch type for many years, so I apologise now for any typographical errors.
I lost hair from the top of my head, where the cap did not touch, and later on from each side at the back and base of my skull. This could be concealed to a degree with careful combing and arranging of ponytail. The problem being that due to the bone pain, I have not been able to lift my arms to the back of my head to do my hair at all since September 2014, so need help. The lost hair started growing back slowly but steadily twelve weeks alter the doxecetal ending. The weekend before the diagnosis of brain mets were confirmed, I had my first post-chemotherapy hair cut, taking three inches of dead poor condition hair off to bring the new growth into line with the old. It made what was stiff, lifeless hair into an actual style that moved and hung much better and was in better condition.The Aussie brand of Miracle sprays and leave in conditioners and intensive hair treatments and dry shampoo have been very helpful during and after chemotherapy, and into the hair loss caused by the whole brain radiotherapy. We plastered the hair in the leave in conditioner before cold capping and it really helped with dealing with the frozen hair afterwards and gave it some protection. Using a wide tooth comb, and only swapping to a narrow comb with the approval of my hairdresser, has helped to reduce the loss too. Many people also lose eyebrows and eyelashes, mine became brittle and fell if I touched them, so I left them alone, they started growing slowly twelve weeks after the chemotherapy ended, but have not fully recovered.
At the time of writing, I have now lost all of the the new hair and well over half of my original hair, due to the whole brain radiotherapy treatment – against which you cannot cold cap or protect against immediate and total hair loss at all. The photo above was taken the week before the radiotherapy. It is distressing, but I am still me and with or without hair, I need to do all I can to stay here. I struggle with the “brave” tag on those who reject or refuse or choose not to complete their treatment. I am saying yes to the only options that are available to me and they are not easy or simple, but have huge side effects – like speech problems and memory loss and paralysis and total unpreventable hair loss, all of which I have had so far in three weeks. My treatment was only meant to contain what was already there, it was discovered between cycles five and six that, “…all existing tumours have massive shrunk” and, except those that have developed and been confirmed as having spread in November in the brain, at the last CT scan in November, there is still slow shrinkage everywhere, so hurrah for the oncology team.
To donate to help to build an emergency fund for the children: