Jo's Diary

Where Do I Start?

I cannot offer medical advice. I am not a doctor. I have no definitive answers but I can offer support and advice about how we have dealt with the challenges life has thrown at us over the years. I can certainly suggest, ways to stay positive, keep fighting and coping strategies for daily life. I hope you can find something on this website to brighten your day and it gives you hope for the future.

How it all began

Let me start by saying that yes, because of my health problems this has been the hardest year of my life so far but before I go into the horrors of all that, let me be clear when I say this has also been one of the best years of my life as I have a wonderful daughter who was not even one year old when this all began. Her year of development despite our challenges has been amazing and every moment I am with her fills me with joy and wonderment. I also have an amazing husband and family who have supported me through this and you can read their perspectives elsewhere on this site.
I began this year feeling breathless. Everything was becoming a struggle. I was wheezing and my lungs where crackling when I lay down to sleep. This had been creeping up on me for a while. I was finding housework difficult and I couldn’t run and play with my daughter. I was still smoking cigarettes and decided it was time to stop. I had recently had my 30th birthday but I didn’t think it all went downhill that quickly!! Mid January, having got Christmas out the way I decided to go to my GP. My Doctor prescribed an inhaler for asthma. Two weeks later my condition had worsened I went back to my GP. This time they prescribed a steroid inhaler and referred me to the respiratory clinic which would take another few weeks of waiting. My husband and I had been thinking about having another child and as the doctor had told me I was suffering from asthma I thought it no problem to stop using contraceptives. “Women with asthma have babies, don’t they?” I thought to myself. As the next few weeks passed my condition worsened and I could barely breathe. My mam finally convinced me to go to A & E. So, Feb 6th2008, that is what I did. Thankfully my mother –in-law was visiting so she took care of my daughter. My husband, Mat, was at work but I told him not to worry and that I was sure it was nothing serious. I went alone. I saw the assessment nurse. I told her my situation including the fact that I had had breast cancer in 2002 but that it had been treated successfully. I did express my concern that my breathing problems were cancer related but I didn’t really believe it as I never knew it could be a side effect. The nurse chastised me for coming to A & E saying that it was a matter for my GP. I told her I had seen my GP twice but they were not doing anything about it. She said she’d speak to a doctor. At that point I went back to the waiting room and very nearly went home but my mam arrived and said, “You are not going anywhere. You have to stay and sort this out. You cannot go on like this.” She was right.

Initial Diagnosis

In steps one of the hero’s of the piece a doctor named Rob. He did a thorough exam, listening to my chest and doing all the tapping and stuff. He ordered a chest x-ray. I was still not fazed at this point believing it wasn’t a serious problem. When I’d finished the x-ray he asked if he could do a breast exam. I still thought nothing of it. I was just glad he was being thorough and thought it was all routine. Then my mam and I watched from the cubicle as he made a few phone calls. I spoke with my husband and I said we were being seen. He was frantic and wanted to be with me. I said it was better that he was with our daughter and that I was sure I would be home soon. As my mam and I waited she joked, “If the doctor offers us a cup of tea you know we are in trouble!” Rob (the doctor) came back and said we should go to a side room. I asked him if he was going to offer us a cup of tea and he said calmly, “you can have one if you want one” my mam and I looked at each other with that feeling we have experienced too many times before creeping over us. Rob knew that what he had discovered was earth shattering for us. I’m sure it’s not something you see every day in A & E and from a medical practitioner’s point of view was quite a find. He got straight to the point, he said, “I’m going to be straight with you” my family and I are all straight talkers and this had obviously come across already so he didn’t beat around the bush, “ You are struggling to breathe because you have over a litre of fluid on your right lung and I can’t be 100% certain but I’m pretty sure it’s because the breast cancer has returned as I found a lump in your right breast.” I was stunned. I told mam she’d better call my husband. She just said “You need to come now” and he was straight there. Rob showed me where the lump was. He was right, I could clearly feel it. Fluid on the lung or Plural Effusion as it is medically described is a common side effect of advanced cancer, Rob informed me. I was so grateful for Rob’s candour. I knew as soon as he had said it that he was right and this was my cancer returned. I could feel it all over my body and I had ignored it for at least a few months. I had had the all clear at a breast exam in July of 2007 so I had obviously grown complacent. I knew there would be lots of tests over the coming weeks but I didn’t need them to know I had cancer again and would be facing a horrible year. Worse than that, was that my husband and daughter would have to go through this for the first time. I knew it would be so hard on them. Rob sent me straight for a chest drain to ease my breathing. It was late in the evening now so I sent my husband, who was pale with shock, home to return with clothes for me in the morning. The chest drain, where they push a tube into the lung lining to drain the fluid off over 24 hours was excruciatingly painful despite the copious amounts of morphine. Nearly 2 litres of fluid had gathered in the drainage pot next to my bed after 24 hours. How had I functioned for the past month in that state?!? On the Sunday prior to this I had queued in the freezing cold for six hours to audition for the “I’d Do Anything” search for a West End star. Needless to say I did not do a good audition. The word, denial, springs to mind.
After the chest drain, I didn’t actually feel that much better and was still breathless. The doctors reassured me that I would feel better soon. This is where the most the most traumatic 8 weeks of my life began.
The ward sister informed me that I would need a drain again soon and that I should call the ward and they would find me a bed when I needed it. She was kind and reassuring and put my mind at rest. The day after my first chest drain I met a consultant from the Breast team. He was reluctant to jump to conclusions and referred me to the breast clinic. I went home. Five days later, I saw a breast surgeon and she took a biopsy of the lump in my right breast and so I had to wait another week for results to discover whether the cancer was primary or secondary. I think at this time I was told that the fluid from my lung had contained cancerous cells. She then booked me in for a CT scan and Bone scan for the following week. To be honest I didn’t keep a proper track of dates and times and it is such a whirlwind. I just remember the events that tortured me and my husband were all around this time. I went home again feeling my lung slowly fill back up with fluid. The doctor had informed me it would continue to do so until I started chemotherapy.

A Fight to Manage My Own Treatment

By 18th February my lung had filled to unbearable again so I took the advice of the ward sister and phoned to ward to see if I could organise a bed. They said I should come in early in the morning and wait for one to become available, which I did. I even had a chest x-ray in preparation for a drain. I waited six hours in the holding room until finally they took me onto the ward. Finally at 4.00pm I saw a doctor who said “Sorry, you cannot have a chest drain now. It is too late in the day and if anything went wrong there would not be enough support, that is, the hospital doesn’t function fully after hours, you can stay in the bed and we’ll do the drain in the morning.” After waiting six hours this was like a red rag to a bull. I was furious. It is difficult enough when you have a small child to have time in hospital and under the stress I was under already I swore like a fish wife at that doctor. Why had I been sat there all day? And, no I would not be staying in the bed over night. I went home and the doctor promised he would be waiting first thing in the morning to do the drain, which he was. My mam had also written a stern email to the patient liaison team a member of whom was there to make sure I was getting the treatment I needed.
The first thing I did was apologise to the doctor, James, as I didn’t want the man who was about to stick a scalpel through my chest wall to be holding a grudge! He graciously accepted this and made his own apologies for the limitations of the NHS service and the confines within which all doctors are forced to work. Here began a good relationship. The procedure was a success and I spent the next 24hrs next to a bucket with my lung fluid draining into it.......nice! Then came the time for more tests and a whole other heap of trauma ensued. When I arrived at the CT scan area, still attached to my bucket, they asked the question, ”could you be pregnant?” My husband and I had had unprotected sex on one evening just after my period which I believed was my least fertile time in natural family planning terms. So I had to answer that there was a remote chance I could be. They refused to scan me. This was devastating. It was still too early to tell whether I was pregnant or not through a urine sample so a blood test was organised. Later that day it was James, the doctor I had sworn at that came to tell me I was pregnant. This was as hard for him as it was for me. This was not his field and he was aware of the stress I was already under. I cried. My husband and I made the horrendous decision that we would not continue with the pregnancy as I was too unwell and it would interfere too much with forthcoming treatment. It had already delayed me having a CT and bone scan. This decision was one of the hardest of my life and I have thought about it every day since. James then organised an appointment with the gynie doctor so we could organise a termination. This was again not his job but I was in doctor limbo, between consultants, breast team and oncology so I didn’t really have a doctor. Thankfully he helped in every way he could and I will be eternally grateful for his support at that time. I also had to organise a consent form so that I could be scanned despite being pregnant. Another horrendous week ensued because the onclogy consultant, breast surgeon and head of scanning, who were dealing with my case, were on holiday as it was half term and thus there was no one senior enough to sign the consent form with me. Surely there should be some kind of staggering system for holiday time for people who deal with life and death. My husband who is a refrigeration and air-con engineer by day is not aloud a holiday through the summer months as its the busiest time of year?! The NHS has some crazy policies. Once again I was there desperately trying to organise my own health care at a time when I was vulnerable, sick and emotionally bereft.
Over the next week I discovered two more lumps in my left breast. The breast care nurse organised an early appointment with the breast surgeon. When I was discussing the appointment with the secretary she said,” yes I will squeeze you in but you will not have time to talk as she is already fully booked up.” Can you imagine how I felt? The doctor took biopsies of the lumps and thankfully did allow me to speak. She informed me that I would not be able to start chemotherapy until I had had a termination so I would no doubt be having my lung drained again. She signed the consent forms with me that meant I could have the necessary scans and she organised an ultrasound scan of the breasts to give us some more information.
27th February, Finally I had the CT scan and bone scan.
29th February. I was told I had an oestrogen receptor positive secondary breast cancer that was in my bones. This was not a good day. I cried a lot. My husband was in shock. I asked the question, ”Will I have my breasts removed?” “There’s no point” the doctor replied flippantly, “we can’t cure you. We just manage the condition” And we were devastated by this news. Doctors forget that we are hearing this information for the first time and are not used to the language they use every day.
5th March I had my 3rd chest drain after telephoning the bed manager and once again organising my own health care. A senior consultant on the respiratory ward told me off for doing this and said I should have gone through my GP. But that takes two weeks and I couldn’t wait that long! I wanted to shout at her but that day I had cried for most of it knowing that I was going to have a termination. I did not have the energy to shout.
6th March I had a Pluradesis. A procedure where they add an irritant powder into the lung lining to hopefully fuse it together and stop it refilling.
10th March. I had the first part of a medical termination which is a pessary.
11th March. I miscarried.
12th March. I had the 2nd part of the medical termination which was a tablet.
20th March. I had a scan to make sure the termination was complete. It was not, there was some “fetal matter” left over. They gave me the abortive pessary again.
23rd March. We had a wonderful birthday party for my daughter who was about to turn 1.
27th March. After another scan we realised the second pessary had also been unsuccessful and I still had “fetal matter” in my uterus. I was desperate at this point that this should not interfere with my chemotherapy which was scheduled to begin the next day. The doctors agreed to take me in that day for the operation to remove any thing left over. So I had walked to the operating table, jumped upon it and woken up half an hour later with a strong course of antibiotics and an empty uterus.
28th March, my daughters 1st birthday, I had my first dose of chemo. I couldn’t walk up the stairs because my lungs had filled back up with fluid and I could not breathe. I coughed throughout my dose. That night I couldn’t breathe and called an ambulance. I was admitted to A&E. Rob received me again and James was on duty. He said would not do a chest drain because it was 1.00am and he felt it was too dangerous. I agreed and slept with an oxygen mask on.
29th March. Chest drain
30th March. Pluradesis again.
31st March released from hospital for the final time!

Chemo therapy

I had Docetaxel or Taxotere which is derived from the Yew Bush. I had 6 cycles that means, 6 doses delivered via a drip for an hour once every 3 weeks. These days chemo is very varied and can be administered in lots of different ways and produces lots of differing side effects. It all depends on the type of cancer it is treating and the person that is receiving it. No two people react in the same way. One thing is true for all chemotherapy, it is hard on the body and mind. But it is bearable and when you are going through it you find a strength you never knew you had to cope with it. The first time I had chemo back in 2002 I was sick nearly every day for the first week of the cycle and more towards the end of the treatment. I really found it so hard. That was called F.E.C. This one for me was easier and the anti sickness drugs meant that I did not suffer so much from sickness. I did however suffer other side effects that I found really hard. In the first few days and immediately after receiving the dose I experienced a strange nervous tension in my face and body which caused me to frown and suck my lips. It was very uncomfortable. I don’t really know which of the drugs created this feeling.
In my very first cycle after a week I thought I was doing well and sat down to a wonderful Indian meal. One of the worst experiences of my life followed. I had diarrohea like you had never known. It just left my body like water from the tap. I could hear it bubbling through my tubes. I vomited everything left in my stomach. This leaves you feeling devastated in every way. To lose control of your body like this is soul destroying. The next day I took advice on what I was allowed to take to control it and fortunately never suffered to that extent again although throughout my chemo I had to constantly monitor my digestive processes and look out for signs of reoccurrence. I had to be careful to eat plain foods and to not eat anything in excess. I was careful not to sleep on a full stomach because these were things that triggered problems.
I can’t thank my best friends and family enough for they help and support they gave me throughout this time. Doing the housework, cooking for us, doing the ironing, taking care of Farrin, taking us out for coffee and lunch. I could not have got through it without them and the words thank you do not cover it. I only hope I can repay them in the future.
By day 4 of each cycle the mouth becomes very sore and feels like it has been scraped with a wire brush. This is because the drug attacks the healthy cells as well as the bad ones so your soft skin is affected. It makes it hard to eat and even to speak and you have to swill with salt water 5 times a day. My fifth cycle was put off for a week because my mouth had still not recovered properly. I was devastated because you set yourself goals and this delayed mine.
My hair started to fall out after about two weeks. This is horrible. You think well, it’s only hair and it will come back. But it is a constant reminder you have cancer and when you catch a glimpse of yourself in the mirror or in a shop window you recoil in horror. As a woman, it is part of your femininity, one of the ways you make yourself beautiful. When it’s gone it’s really hard to look at yourself and see an attractive person. I wore a wig to a couple of weddings this summer but I felt more paranoid in the wig than I did without it. That’s just me, I’m sure some people feel fine with a wig.
22nd July. Last dose of chemo.
For me chemotherapy is still a haze, a battle I fought this year along with my family. It was hard for my husband, parents and friends to see me struggle. But as my husband says, “It’s a kick in the nuts for cancer” and that’s a good thing. It stopped my lungs filling with fluid. It made the tumours in my breast disappear completely. It made the” hot spots” on my bones look better. It saved my life and for that I am truly grateful. It is a terrifying thought that I might have to have it again at some point in the future. But we’ll cross that bridge when we get to it.

The Fear

The fear sweeps over you on a regular basis. I have had weeks where I could not get through the day without crying, not for myself but for the people around me and what I have put them through and what might come in the future. Sometimes I look at my daughter and feel devastated at the thought that she might have to live without me and to live life with the grief of losing a mother. I’m going to fight so hard for her and my husband. I know that you cannot go through life bursting into tears so I have made a practical effort to replace those negative thoughts with positive ones. I look at her little face and I soak up the joy in her smile. I make the most of each and every moment I have with her and I do not worry about the little things in life. I never stress out about silly things and I never get angry. I make sure I tell my family I love them on a regular basis and I gather them together as often as possible. I will not succumb to the fear. I will take each day as it comes and live in the moment. I will try to make the future as easy as possible for my husband and daughter. I will do everything possible to stay alive.

The NHS

The NHS has its faults, its flaws but essentially it is an amazing system that saves lives every day. I would like to thank all of those doctors and nurses who take the time to do their jobs well and especially to those who take an extra moment to say something reassuring. On the other hand there were a few instances when a doctor or secretary could have done with a proverbial slap and I would remind those people that anyone who is in hospital and particularly those suffering life threatening illness are vulnerable and stressed and already have enough problems without you adding to them. Patience and understanding are free and should be a basic prerequisite to anyone in a career involved with medicine whether you are a doctor or a cleaner.

Life After Chemotherapy

Well it’s November and I am essentially well. I have a hormone treatment called Arimidex that removes all the oestrogen from my body that is, as well as, the three monthly implant in my stomach called Zolodex that inhibits my ovarian function. The doctors hope this will keep a lid on the cancer for some time. It takes the fuel out of the fire. Now my family and I have to pick up the pieces of our life and find a way to live normally. A lady I spoke with through Breast Cancer Care (the amazing charity) summed things up well, “Now we have to find the new normal.” Our life will never be the same. We will not have the 2.4 family we see all around us. We do not know what the future holds with regards to my health. I broke down last week because the baby we briefly had would have been due. I still think about that every day and probably will forever but what it reminds me of, is that what I have right now is amazing. I have a beautiful daughter who makes me laugh every day. I have a wonderful husband who supports me tirelessly. I have an amazing family and the most spectacular friends that constantly remind me that life is a wonderful gift we must take full advantage of. Yes, there are challenges and you can read all about them on this website. Over time it will be filled with stories from my mum, my husband, my family and friends so you can see how it affects us all in different ways and you can know that you and your family are not alone. I hope we can discuss all the issues that affect us all in trying to cope with what we have suffered and what the future holds for us now. I hope our honesty will bring about change in the way we view chronic illness and the way families cope with it. Mainly I hope, our hope will bring you hope.
25th November. Last night was one of the most amazing nights of my life and I have rarely felt more loved and supported. Some of my best friends organised a night of circus entertainment and live music to raise money for my family and I to go on holiday. Performers came from miles around and the crowds turned out in force. The local newspaper had covered the story and a celebrity, comedienne (who wishes to remain anonymous) kindly made a generous donation. Most of the performers worked for free as did my friends and family to ensure it was an amazing night. I sang three of my own songs and it was the first time I have performed since my daughter was born. It was a great feeling. Finally something in my life that I am actually in control of! It felt good and was a great boost to my confidence especially after I had cried the night before the gig because I was so distraught at my appearance! It’s so easy to lose yourself in the illness. You lose your hair. I lost a lot of weight. I lost my toenails because of the chemo. It’s hard to feel like a beautiful woman when things like this happen. But I went to ‘cabaret for cancer’ looking a million dollars (thanks to my friends) and feeling on top of the world. It helped my husband and I to bond once again, to put the horrible year we have had behind us and to move forward positively.
My friends raised enough money for us to spend a week in Tenerife and we can’t wait. Also a kind family locally offered us their caravan whenever we might need a break. I am reminded that people are wonderful, that the human spirit is inherently kind and generous and filled with love. I will not forget it and I will think of this night whenever I feel low.

Smoking

I have wrestled with this issue since I was 12 years old. I even continued to smoke after my first bout of cancer in 2002. May be if I had changed my lifestyle then it would not have returned. But what ifs don’t help matters so I will try again. Over the past four years I have quit several times and for months at a time but it was just too hard to stop during chemotherapy. But this time I am finished for good. I don’t need it and I have to do everything I can to stay healthy.

01st December. At my last check up I mentioned to the doctor that had had a strange feeling in my fingers when I woke up. Something like pins and needles. She suggested I have an MRI scan of my neck to make sure there are no problems there. So two weeks ago I had a scan. The guy doing it suggested doing a scan of my whole spine so that they are covering as much as possible. I wasn’t really worried as I’m not in any serious pain but yesterday I had the call you dread, ”Is that Joanne? It’s the hospital. Your oncologist would like you see a colleague of hers tomorrow. Is that possible?” said the voice at the other end of the telephone. “Yes,” I say and the penny drops, “This must be for results of the scan, yes I’ll be there.” I have a scheduled check up at the end of December if the results had been good my doctor would have waited until then. So I can only assume that the results are not good. Panic welled in the pit of my stomach. I called my husband so he can arrange the time off work to be with me. He was great, calming and sensible. “Let’s not panic yet.” I called my Mam to babysit my daughter, she reassured me. “If it’s a bone issue then its manageable with radiation isn’t it?” She’s right, perhaps they just want to stop something developing any further. I fight back the tears and concentrate on having a great day with my daughter. This is my life now, dealing with these problems. I have to be positive and keep it together.
2nd December. I had a good night’s sleep so I’m ready for whatever life is going to throw at me today. Yesterday was OK, one of my best friends took me out for lunch, distraction is the best technique for coping I find. I have done the same today, collected my little cousin and taken him and Farrin, my daughter, to “Toddler Bop” we are having a great day. My appointment is at 3.40pm we’ll see what they have to say.
Well I’ve seen the doctor. It seems that the funny feeling in my fingers is caused by a vertebrae in my neck that has lost its integrity because of the bone cancer. Thankfully there is no nerve damage. I have to have five sessions of radiotherapy, hopefully next week. It will be a short dose each day. I have had radiotherapy before, on my breast, the first time I was diagnosed. It is a pulse of radiation directed at the area from a huge machine. You can’t see it or feel it. The doctor said the side effects should be minor because of the low dose, just a sore throat and maybe, a little difficulty swallowing for 7 – 10 days afterwards. I hope it’s not too bad as we are booked in an expensive restaurant for our Chrissy dinner and I’d hate to waste it!! He said there were other problems with my spine but nothing as urgent as this. It was not what I wanted to hear but the doctors haven’t said much I wanted to hear over the past year. I just have to deal with it. Getting to a hospital 15miles away every day is going to be a bit of a logistical nightmare next week but again I’m really lucky to have my parents and friends around to help me out.
12thDecember. I went to the hospital today for the planning for the radio therapy. I didn’t take any one with me as I am saving people up for doing the babysitting next week, but I regretted it. The planning is not harsh. You lay on a bed, they turn off the lights and a lazer grid appears on your body, they mark you with a pen to line the machine up accurately. They used the pin prick tattoo they gave me when I first had radiotherapy back in 2002 as the reference point. Then they leave the room. It’s all very straight forward. The nurse reminded me I may get blisters in my mouth and a sore throat. I left feeling angry and frustrated that this is my life!
Before any procedure like this, x-ray, CT, Bone or MRI scan they ask the question, “Could you be pregnant?” There is no escape from that torment. I could cry every time I am asked, I don’t but I could. We will never have any more children. I am on this hormone treatment for the forseeable future and even if I were not I would never have the nerve to risk the rush of hormones that pregnancy induces. The doctors say there is no link between pregnancy and hormone receptor positive cancers but in the 6 weeks that I was pregnant I went from having 1 tumour in my right breast to having another 2 in my left. That seems like quite strong evidence to me. In my heart I would never have the nerve to risk my life in that way, not for me but for my daughter and husband. So my husband and I have discussed having my ovaries removed. Then I don’t have to have the implant in my stomach every 3 months. One less thing to worry about.
So here I am facing five trips to the hospital next week. Better get my babysitters organised. Mum, Dad, Nan, “I need you again.”
21st December. My husband confessed to me today that he has been trying to organise a parachute jump for me as he knows it is one of my ambitions but he spoke to my doctor who said that, “under no circumstances” should I skydive and that the risk of breaking my spine would be too great. I am gutted and it is another reminded of the things I cannot achieve because of this horrible disease. But I guess it’s a wakeup call and time for me to think seriously about what I can and cannot do!
20th December. Well I got through the radiotherapy. It was tough and tiring driving everyday but my family and friends were great as always. My Dad met me at the hospital for the first dose and my friends accompanied me for the last 2. It makes it all seem a little easier when you have people around. Now I just have to wait and see how badly it affects me.
26th December. My husband is amazing. He bought me a scenic flight and flying lesson from our local airfield as a consolation prize!! It’s going to be great and the next best thing.
27th December. Well it has become very hard to swallow and is rather painful but I don’t care. I have been completely ignoring it. I have eaten and drunk whatever I have wanted and just winced through the sore throat. It feels like I have a roast potato trapped in my throat but nothing can spoil the amazing Christmas I have had. My daughter, Farrin is nearly 2 and she has made this holiday season magical. My husband and I have really enjoyed each other’s company and it has been wonderful to spend time with all our family. I think I have had the best Christmas ever! This is the strange dichotomy we now find ourselves in. We appreciate life more than ever and so we can experience true joy but it is always tainted by the so called incurable disease we live with. I am looking forward to the New Year. We are having a party and all the family will be there, GREAT!!!
2nd January 2009. Well all the family have returned home and I am excited to be resuming my beautiful life with my daughter and husband. I love attending toddler groups and different classes with Farrin. It keeps me fit and makes her happy. Its physically hard sometimes depending on the aches and pains and side effects of the drugs I take to keep me well but its worth fighting through it to spend time with my gorgeous girl. It was great to see all the family but it’s also great to get back to normal and continue our lovely life.
15th January. I have had an epiphany! I am going to heal myself! I am not going to have my ovaries removed because that would be admitting defeat and I am not going to be defeated! I am going to heal myself through diet, supplements and holistic therapies. I have been reading a book about healing emotionally and it triggering healing on a cellular level. I am going to get stuck into supplements to boost my immune system and I am going to try every holistic treatment I can realistically afford. I can do it and I owe it to myself and my family to try. It has taken me a year and a real roller coaster of treatment and experiences to come to this conclusion but I believe can do it.
7th February. Today I attended a day organised by Breast Cancer Care. It was a day for younger women with secondary breast cancer. I was pretty gutted when I arrived as nearly everyone there was over 40. It is a reminder that I am in an unusual situation being 31 and having a secondary cancer. Thankfully the lady that arrived late was closer to my age and we had small children in common. I really hope I will be able to strike up a friendship as we have a lot of similar issues. The day was very informative and it was great to be there among people who know what you are going through but it is still a reminder that I am not normal and my life will never be again.
23rd February. Jade Goody is in the news a lot at the moment and I do really feel for her. She has heard the words every cancer patient dreads, “there is nothing more we can do.” Her high profile case has meant that thousands of women will, I am sure, attend their smear test appointments and hopefully everyone that hears her story will pay a little more attention to their own health issues. It does make me think about the thousands of people in the same situation that do not have the luxury of leaving a trust fund for their loved ones and it reminds me how hard it would be for my husband to raise our daughter without me around. I never feared death before my daughter was born. Now I don’t fear death for myself, I am afraid of the impact it will have on my daughter and husband emotionally and financially. I fully understand Jade’s desire to earn as much as she can and would dearly love the opportunity to do the same. What I intend to do is survive and better than that, heal!

September 2009

6th September 09

After 6 months of feeling OK I had that awful feeling in my chest. It was starting to get hard to breathe again and I new right from the start of it that my lung was filling up with fluid. Everyone told me to be positive but it wasn't about that. It was about knowing my own body and being so constantly paranoid of any pain or problem that the second something changes, I know it. I went to my GP had a chest x-ray and he had observed a slight increase on the fluid on the left side again. My oncologist was on holiday so i had to wait 2 weeks for her return before anything could actually happen. She was decisive. A chest drain and then chemotherapy again. So last week I had to go through the ordeal of having my lung drained. A tube forced in between your ribs and into the lining of the lung where it stays overnight to let the fluid drain off. Nearly two litres. I slept on the ward in a bed next to an elderly lady who was sadly very confused and unhappy and was giving the nurses hell. It was not somewhere I could relax. They put the powder in my lung again and I stayed a second night. It was all excruciating painful and demoralising but my daughter and husband came to see me on the ward which was a special treat. My daughter did say" Mummy, I don't like your tube" (the drainage tube) "No my darling, I don't like it either but don't worry, it's making mummy better!" I replied.
Well I have screamed and cried and gone through several bouts of paralyzing fear but none of it has done me any good so I'll stop!!! I need to heal and that is the only way forward.
Another problem has come up which is driving me crazy, my teeth. I have a bit of a phobia and have neglected my teeth over the years and also with nhs dentistry in crisis as it is in this country I have been waiting a year and a half to get my teeth sorted. Now I can't start chemo until my teeth are sorted and i can't get my teeth sorted until I have been off the drugs I take for my bones because of nasty side affects. Its just never ending!!!! So I see the doctor tomorrow for my teeth and hopefully I won't have to have my lung drained again before we can sort the teeth and get on the chemo!!