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All through my health ordeal I remained as strong as I could be. Of course it took a mental toll. My family were dealing with the news in their own way but it caused tensions between my husband and my father, who decided to suddenly take an interest in my well being. It was hard managing this stress alongside the general stress of my health.

I continued to have my psychiatrist reviews with a new psychiatrist as my old one had left. This would be my 4th psychiatrist. She noted that what I was going through was understandable and my response was measured and reasonable. She said it was more a reaction to stress than depression. This is what I thought too, so when she decided to complete my DVLA renewal form that suggested I was unfit to drive, you can imagine my shock and distress at this. Where had this sudden belief that I was mentally unstable come from!?

It was awful timing. I had come to the end of my 6 week recovery- I was now able to hold and lift my baby girl and start taking her out to places, but annoyingly the 6 weeks ended on the day my 3 year medical licence expired. My hope to freedom and recovery had been snatched away and my distress palpable. The early days spending quality time with my daughter was impacted by preoccupation with my health and so I was looking forward to moving on with my life post-operation.

I thought of all the expletives under the sun about my psychiatrist. What was she playing at?! I spoke with her and she explained she had to be honest in the form and accepted that the form didn’t look good. I requested to see this said form and boy, she was not joking. It was a damning form where she had ticked I was unfit to drive and then scribbled it out. She also reported things that were based on my care coordinator’s entry from a telephone call, rather than her last psychiatric review of me. The problem with using my care coordinator’s entry was that on that day I was particularly anxious and stressed by everything. I was feeling low, suicidal and preoccupied with the wait to find out the results of the cancer pathology. Instead of taking these feelings into context and being present at one particular time and not generally, she completed the form to give the impression I was all the time mentally unwell.

She acted surprised when my licence was revoked and I was told by the DVLA not to drive based on a recent psychiatric illness. How stupid could she be. I had just overcome mammoth surgery, dealing with a life long autoimmune health condition and as a result of her pathetic completion of a form, I was now faced with another setback. I cried and cried. Why was I being tested so much….

I had only so much energy but I was also fuelled by a sense of injustice and anger over the situation. I immediately got a criminal lawyer and appealed the DVLA’s decision. It was a costly route to take and required weeks and weeks of me sending emails and letters chasing people. As my lawyer said, the form was damning and I had little chance in court of winning despite the evidence of psychiatrist letters saying I was low risk in all domains, I was experiencing stress and I had just gone through cancer treatment. I wasn’t actively suicidal, my ideas were generic such as I thought life wasn’t worth living but I had no plans. I was stressed and low but not severely depressed. I was anxious and worried about the cancer results- this was understandable. Unfortunately my psychiatrist took none of this into account when filling in the form.

The usual course of getting your licence back is being stable for 3 months. It took 3 months and a court day being set before I got my licence back.

It is sad, but it goes to show how much of a power imbalance there is and how one person’s actions can create devastating repercussions. If I hadn’t had that call with my care coordinator that day and said how I was feeling, I would have probably not have lost my licence.

I think what was also hurtful in the course of events was my psychiatrist’s attempt to discharge me. How could I be mentally unwell to drive but ok to discharge in her eyes? She was being spineless and didn’t like how I decided to take legal action to get my licence back. She also said normally she would continue to review someone with my history but would be willing to discharge me if I did not want to see her anymore. She also gave me the option of seeing someone else. I was not going to let her off the hook that easily. I said no and I also remained calm every time I spoke with her. I expressed my disappointment and annoyance with the situation and her actions but I never lost my temper or let my anger get the better of me. For that I am proud of myself. Instead the anger ate me up inside.

You would think after getting my licence back I would be ecstatic but I wasn’t. I should’ve never had to go through that. I felt exhausted and a loss of confidence in myself. My maternity leave was nearing it’s end and the time with my daughter that I wanted and imagined never happened. Just like the time with my son, I had missed out on having a good experience postnatally. I loved my daughter but I was feeling detached from her.

I wrote the following to share with my husband

It’s easier to put in words how I have been feeling. 

Basically I think I have expended so much mental energy over the last few months, even the last year or more, that I actually don’t feel like I have the energy to live. I have to admit that I have had thoughts of not wanting to live anymore and I know that doesn’t make sense when I went through so much physically to get rid of the cancer. I don’t think I have said this before, although I may have and have just forgotten, but I had come to some sort of peace and acceptance that I would not survive the operation that I almost didn’t know what to do with myself or feel when it sunk in that I had made it through the surgery. I feel so tired of everything that has happened over the past couple of years and whilst I dearly love you, Adam and Lucy, I can’t help feeling exhausted by life. To complicate things further, I also have this fear of the kids growing up without me and I know that this just doesn’t make sense when I am saying I am having thoughts of not wanting to be here anymore. I can only say the latter is probably the depression speaking whilst the fear of dying is the anxiety of living. 

The below is my instagram post on a similar note:

Today I listened to my Personal Trainer (yes my attempt to get fit and healthy again and an effort to do something for me) tell me about her husband’s journey of cancer.

It was something she said today that really resonated with how I’ve been feeling in the last couple of months. It’s the aftermath and silence after the survival mode of getting through the diagnosis and treatment of cancer that can be just as difficult. It’s the crash of all the adrenaline of going from one appointment to another, to get through it all…. to survive. But the feelings feel just as intense now as it did then. As I read the blogs from BowelBabe, I can’t help but break down in tears as it brings up those fears of dying and leaving my children behind. Those fears were so overwhelming back then but they feel just as overwhelming now. The fear of dying is still ever present and so acute. The danger is of spiralling into the darkness of the thoughts.

There’s a song I associate with my journey that I started listening to around the time I found out about my thymoma. Right On Time by Brandi Carlisle. These words ring true the most “It wasn’t right, but it was right on time”. I will always be grateful that it was found early but now the feeling of vulnerability is ever so present. I need to find a way to manage the fear of dying and my children being motherless. I’m alive and I have two beautiful children and a loving husband – I need to ground myself in this.

I was given my own room as I was on the list of “complex women” who had complex mental health history.

During the pregnancy I just about managed to avoid being sectioned. The monitoring from those around me ensured I could stay at home.

I stayed one night after baby girl was born as I really wanted to get home to be with my son and be a family. I think they were hoping I would stay in for longer in case of a relapse.

My hormones were all over the place as to be expected. I was very anxious and panicky. It was awful but I tried very hard to keep control and not let this overcome me. I didn’t want to become unwell or be over medicated unnecessarily.

When I was visited by the community midwife the day after we left hospital with baby girl, I mentioned my droopy left eye lid which I had since mid pregnancy and had not disappeared. She reassured me that was normal in pregnancy… just so people know- it is not normal.

We decided we would go for a private scan as I was becoming overly anxious that I would lose this pregnancy.

When we went for the scan it was not quite 20 weeks but to our surprise they said they’d be able to tell us the gender if we wanted to know.

We did.

As I lay on the table being scanned I looked for any signs of what I was going to be having. The sonographer said there’s these two things here on the screen. What do you think it is, she asked. I thought testes and so did my husband but we both said we didn’t know. To our surprise it was the labia – we were having a girl!

As with the first pregnancy, I knew that gestational diabetes was very likely to rear its ugly head again. And it did. This time I started testing myself and self diagnosed after high readings. I informed the team and they set me up with the pregnancy diabetes team.

This time around I was not so much in shock and distress over the diagnosis. I knew it was going to happen and I knew what to do this time to keep it under control. I also knew the diet changes would not be forever. I lost weight as a result during the pregnancy but this was no bad thing.

I was however struggling to keep my fasting levels down but I eventually got them under control and avoided the need to be put on insulin or metformin.

Because of the uterine repair from the ruptured ectopic pregnancy it was stated I would need to have a c-section at 38 weeks. This early because I had my son at 39 weeks and often subsequent labours tend to be earlier. I wasn’t happy about taking steroids to help with the baby’s lung development but I had to trust the doctors were doing the right thing.

There was something different about this pregnancy. The exhaustion and shortness of breath was greater than I could remember with my first pregnancy. I would sometimes be standing and find I couldn’t catch my breath.

One day I was in the kitchen and I had one of these moments where I struggled to breath. My 6 year old son was worried and asked for my phone. I gave it to him and he called my husband.

I went to the doctors surgery and saw a paramedic practitioner. They stated it was just pregnancy related. I accepted this and carried on. Little did I know that this was a sign of an underlying problem.

I started getting contractions a week before the planned c-section that was proposed at 38 weeks. I thought though that these were more likely to be Braxton hicks but not having had experienced them before I couldn’t say for certain. As the days continued, they got worse and more painful and I started to make plans for an early arrival of baby girl.

Friday 15th October we keep a log of the contractions and call the triage number in the evening. The midwife felt that these were likely to be cramps and not labour and said to take a hot bath and have paracetamol. This didn’t do anything for me. We called again at midnight and she said, well you can come in if you want to. My husband made it clear we were because the whole reason for the early c-section was to avoid full labour.

We put the bags into the car but both of us felt that we may be sent home. The contractions were painful but I was coping with the pain. Maybe they were just Braxton hicks….

We arrive at the hospital and I walk up to the midwife at reception calmly explaining why we were there. I think she was thinking I was going back home too. She got me hooked up to the machine and when I had another contraction she saw how strong it was and changed in her attitude towards me. She asked me if they were all that strong. I nodded. She went out of the room and came back to say I think you’ll be having your baby today. She checked me and said I was 5/6 cm dilated with bulging waters. Part of me was half convinced I may be having my baby that night but I was still shocked by the news. She spoke to someone outside of the door informing them of the dilation progress and a stream of people came into the room. They started to prep me for theatre. The doctor who would be performing the delivery asked me whether I wanted to continue naturally or have a c-section. I explained I did not want what happened previously with my son to happen again and that I would opt for the c-section as planned, especially due to the risks of rupture as a result of the ectopic pregnancy last year.

My husband got changed and we were quickly wheeled into theatre. It all felt surreal. I was still having contractions whilst they got everything ready around me.

As I lay on the table, I remember the community midwife telling me if I wanted to see everything being done to look in the reflection of the lights above. She was right….I decided after a few glances I did not want to see it all. I asked the doctor to please let me see my daughter as she pulled her out from me.

After what seemed like hardly any time, the doctor was holding my daughter in the air above me. I gasped….she was amazing…and bloody! I don’t think I expected to see her looking so big and have so much hair. My baby girl cried and shielded her eyes from the bright lights. I remained quiet as photos were taken and I took in seeing my daughter. I felt physically and emotionally exhausted. My husband and I had done it- we had our second child, we had our daughter.

The following was posted on Facebook to mark the first ever thymic malignancy awareness month. This is my story of how I came to be diagnosed with cancer following the birth of my daughter.

Babies are a blessing. My baby daughter is even more so because without her my thymoma would not have been found. She was conceived a week before our first IVF appointment and born a year after having a ruptured ectopic pregnancy that led to life saving surgery. To say the least the past year has been extremely difficult.

It is 10 days after having my baby daughter by emergency c-section that I start to experience chest pains and shortness of breath. It is late evening and we debate as to whether we should go to A&E or not. We have a 5 year old son and the trip would be a hassle, but we go because we think it is better to be safe than sorry. We arrive at A&E and wait for 5 hours to be seen. At 3am we are told that the chest X-ray does not show any signs of blood clots on the lungs, but as a precaution we are referred to the Ambulatory Emergency Care Unit (AECU) for a second opinion. At this stage there is no mention of anything untoward. Later that same day the AECU ring and insist that I come in, but I am exhausted after our long night in A&E. I ask to come in the next day convinced it is going to be a wasted trip.

At AECU they are still mentioning clots so I am sent for a CT scan. My husband and I wait to see the consultant for the scan results and we are both relaxed that we will be going home soon. The nurse comes out to say the consultant is just having a meeting with the radiologist and we will be seen soon. I assume this is unrelated to me. The nurse returns and insists that my husband comes in with me to see the consultant. I don’t think any thing of this, but my husband notes that this is the first sign that suggested something more serious was at hand.

The consultant starts off positive that there are no blood clots, but when you are looking for one thing you can end up finding another thing. He mentions thymus gland to me and I look blankly at him. I know my basic human biology but the thymus gland isn’t part of my knowledge. He says it is enlarged and that as a duty of care they need to investigate further by carrying out a biopsy. Of course my husband and I are shocked and turn to Doctor Google for more information. Cancer comes back in the results page and I start to worry. Only less than 2 weeks since the birth of my daughter I have hormones raging through my system and I break down in tears as to what this all could mean.

A respiratory medicine doctor calls me later that week and says they’re unsure if it is a lymphoma or a thymoma thus the need for the biopsy. The day of my biopsy arrives and the doctor carrying out the procedure describes it as a “small node” and says it’s unlikely to be anything to worry about. I feel less concerned. The procedure is slightly painful but over fairly quickly. She says I’m strong for keeping calm throughout as the needle and equipment are in my view and often people panic. I briefly glance at the computer monitor of the scanned images as I am wheeled out of the CT scanner and think to myself that the “small node” doesn’t look that small.

There is an anxious wait for the results and I think I am prepared for the news but when the word “cancer” is mentioned I feel knocked for six. It doesn’t fully sink in and I have to ask him again if he indeed was telling me I had cancer. He was. I mentioned my droopy eye lid at this point as having done research I found an association between the cancer and an autoimmune condition called myasthenia gravis. Blood tests are done and it comes back positive. I not only have a rare cancer, I have a rare autoimmune condition.

Telling family and friends you have cancer and a rare one at that was heart wrenching. I keep breaking down in tears. I am in my 30’s and have a young family- this can’t be happening to me.

The big day arrives and I make an emotional goodbye to my children as I head to hospital for major open chest surgery. My heart couldn’t hurt anymore than it did in that moment.

The surgeon explains to me my heart is very close to my sternum which is unusual and that my thymoma is close to my phrenic nerve which can lead to diaphragm paralysis. As they have to inform you with any major op like the sternotomy I’m having, there’s the risk of death.

As I’m wheeled into theatre to be put under I am numb. With the prayers and positive thoughts of friends and family my surgery is successful and I spend 24 hours in ICU as a precaution where I’m looked after by three amazing nurses.

I spend 5 days in hospital and can’t wait to get home to my family. Once at home I count down the 6 weeks until I can hug and hold my children again. I also count down to the pathology results. It’s a nervous wait.

My pathology results come back and show that the thymoma has spread to the fatty tissue and radiotherapy is discussed but decided against as the risks outweigh the benefits. Although the margins are very small, nonetheless they are clear. It’s classified as a type B1 stage 2B thymoma and was 6.5 cm in size. I will have regular scans for the next 5 years.

Cancer has made me feel more vulnerable in life but I feel so lucky that the cancer was found early- I have my daughter to thank for that. My baby girl is a blessing.

My husband was worried about the fact my Psychologist had been in touch. He contacted my care coordinator and she started to increase her frequency of visits.

Below is an extract taken from the Progress Notes (I requested my medical records this year):

— sounded low in mood, speech was slow & processing appeared slow too. She was displaying some psychotic thinking, medication is poison, is worried that the government is watching her, driving to work she is being followed.

This was worrying my care coordinator particularly as I was adamant about not taking the medication even though it was a 5mg dose. She started visit weekly to check in that I was taking the medication and monitor my mental health.

I later found out through reading through my medical notes that the Psychiatrist put a request through for a mental health act assessment. It terrifies me that this happened in the background and could have become into fruition. Thankfully my care coordinator could see there were no grounds for this and was able to stand up to this. Despite our therapeutic relationship at times being strained, I was grateful for her ability to go against a Psychiatrist.

This is what the Psychiatrist had entered onto the system:

We need to be realistic with regards to what I could offer to alter negative trajectory of worsening relapse.

I am recommending MHAA due to reasons I explained in my last email to you and if AMHPs are not in agreement, it’s fine but they would need to consider my rationale and have this discussion/outcome documented on —

Based on your findings recently documented on — on the 13th of May, given past and recent clinical histories which collectively spells out the unlikelihood of patient resuming with psychiatric medication, further delay in hospital treatment in the absence of active perinatal psychiatric specialist input, could result in further deterioration in mental/physical health on patient and her unborn baby and the illness becoming more difficult to treat (poorer prognosis), please request for MHAA.

This is written a year on from the pregnancy.

The pregnancy was emotionally and physically demanding. The nausea and exhaustion was on a level that I had not experienced in my previous pregnancy.

There was increased concern from my Psychologist that I had been seeing just before my ectopic pregnancy the previous year. One session I was very depressed and hopeless about my pregnancy. My despondency was a red flag for my Psychologist and she called my husband without warning me that she was going to do this. After the session with her, my husband who was working at home, came to see me in the bedroom. The bedroom was where I situated myself for most of the day when I was not working and my son was at school. He admitted that the Psychologist had been in touch, which made me livid. How could she break confidentiality and on what grounds? She could have at least contacted me before ringing my husband and told me that she was planning to do this! I contacted my Psychologist a week later with the below email:

I have taken some time to reflect on you contacting my husband on Wednesday after having said that I didn’t want you to speak with him. I hope you can understand how hurt and angry I felt. In some ways I now feel a difficulty in being able to trust you. This makes it hard for me because I viewed our sessions as a place where I could be honest without fear of being told to take medication or threatened with sectioning. As you know, I completely understand your professional duty but I do wonder whether it could have been done differently. Although my initial reaction was to not want to see you again, I don’t think it’s fair I stop sessions with you at least without the opportunity to meet again and discuss all this. Please let me know your thoughts.

She responded with an empathic email and invited me to see her again to see if we could rebuild the trust. The session when I did see her was a good opportunity to share my disappointment in her and the trust being broken. She accepted she probably didn’t handle the situation well and took it as a learning experience. I was happy to accept this and move on.