Until my dad passed away, I had never heard about; or I certainly hadn’t taken note of any common beliefs about Robins and White Feathers. A friend came to visit me after he’d passed away, and she was telling me a story about White Feathers. I was listening to her story but didn’t realise it was a common belief that people thought white feathers had been sent from loved ones who had passed away. I didn’t really think much more about this conversation until a couple of weeks later when I was particularly feeling sad about my dad. I walked my son to school, and on the way home I noticed something white attached to my daughter’s pram wheel. When I got home, I went to take it off the wheel & noticed it was a white feather. It then got me thinking. Was it just a coincidence that I was having a sad day (at only 9am!) struggling after losing my dad, or had the white feather actually been sent to me as a sign and as some sort of reassurance? And the only way for me to notice the feather was by attaching it to the pram wheel?! So I started looking on google at the meaning of white feathers.
I quickly began to realise that it was a common belief that the appearance of a white feather could be a sign that your loved one is close by. As i was reading up on these meanings of white feathers, I remember being sat at the island in the kitchen feeling upset that all I was left with was a white feather. Knowing about this common belief did not bring me any comfort, well not at this stage anyway. I was just still so upset that dad was no longer with us.
A few days later, I was walking the dog pushing the pram, still feeling really upset. I happened to look at the floor after about 15 minutes of walking & I saw a white feather laying there on the footpath. After this, I kept looking to the floor as I was walking. There were white feathers laying on the floor for the remainder of my walk. There must have been hundreds in total. It really felt as though dad was trying to send me a message to tell me he walking with me. We often used to go walking the dog together, so seeing these feathers really did bring me comfort on that day when I had been feeling so upset. On the following days I kept looking for feathers & kept seeing the odd feather so I knew my dad was close by.
Now, several months on, it is rare I see a white feather, but the presence of the white feathers really did bring me comfort when I needed it the most. I now know that if I do see white feathers in the future that my dad will have sent them as a message and as reassurance. He might have left me in person, but he will forever be in my heart.
This brings me onto Robins…
My mum and dad love birds. They have an aviary in their back garden, and they have also always fed wild birds. They always used to love going to the Bempton Cliffs on the East Coast which was renowned for having over 200,000 seabirds including puffins nesting there.
Anyway, shortly after dad passed away, mum mentioned that she had been getting a robin visiting her garden on a regular basis. She said she felt as though the robin was watching her. It used to sit on the fence looking in at her in the kitchen or the dining room and it used to stay there for ages. It used to visit the garden all the time just watching mum. At the time, I remember thinking that it might be dad watching her because I seemed to think there was a belief about loved ones coming back as a robin. A few weeks later, my mum told me she had been talking to my sister-in-law Jacqui who had told mum exactly what I had been thinking. It brought mum great comfort thinking that dad was watching her. She believed that dad was checking how she was doing and checking that she was ok.
Reading up on the meaning of robins, I have discovered that the robin is always the symbol of good luck. It can also symbolise passion, new beginnings and renewal. If the robin visits you at a certain time of your life, then you should listen to its song. You should know that this bird will come to you to bring you an important message and to teach you something new. It is telling you not to worry because there are many good changes in front of you, and it is time to go forward. You should not be sad or worried because something better is waiting for you.
At the end of the day, it really doesn’t matter what everyone thinks about these common beliefs. Whether you believe that white feathers and robins are old wives tales or whether you really do believe in their meanings; all that really counts is in whatever brings you comfort. Whatever gets you through the hardest time of your life is all that matters. White feathers brought so much comfort to me and helped me through the hardest time of my life. That Robin in mum’s garden helped her, and believing it was dad watching her made all the difference.
Grief is not a nice thing to experience. Everyone experiences grief at some point in their lives, but we don’t just experience grief through bereavement. We can experience grief for a numbers of reasons, for example, being made redundant at work, loosing your home, ending a relationship; suffering from ill health or when a loved one suffers from ill health, a new medical diagnosis or a change in body image which could be through an accident or surgery.
I want to start by explaining common symptoms of grief and stages we go through when we are grieving. I will then go onto my own experience of grief.
Everyone deals with grief in different ways, but according to the NHS (2019) there are common symptoms of grief:
👉🏻 The first reaction to loss is usually shock and numbness, or the feeling of “being in a daze”
👉🏻 overwhelming sadness, with lots of crying
👉🏻 tiredness or exhaustion
👉🏻 Anger – towards the person you’ve lost or the reason for your loss
👉🏻 Guilt – for example guilt about feeling the anger, about something you said or did not say, or not being able to stop your loved one dying.
These feelings may not be present all the time but they can appear unexpectedly.
The NHS (2019) describe that we go through 4 stages of bereavement or grief:
👉🏻 Acceptance that your loss is real
👉🏻 Experiencing the pain of grief
👉🏻 Adjusting to life without the person or thing you have lost
👉🏻 Putting less emotional energy into grieving and putting it into something new.
Most people go through all of these stages , but do not necessarily move smoothly from one to the next.
My own personal experience of grief came following the loss of my dad in August (2019). I certainly experienced numbness in the first instance. I cannot really describe fully how I felt without sounding like I had totally lost my mind or had “no heart” for this period. In my head, I knew that my dad had gone. That I would never see him again. That I would never be able to talk to him again. But I didn’t, and couldn’t believe it. I still expected to see my dad walking through my front door & coming to help me to do odd jobs around the house like he always did, or to go for a walk with the dog with me. I still expected to see him sat in his chair at home when I went to visit. But yet I knew this wasn’t going to happen. I was completely in a daze. I guess that is what helped me organise things for dad’s funeral. I had to sort out the medical certificate, ring up & organise the funeral director. Sit down with my mum and brother and organise dad’s funeral with the funeral director. Attend dad’s funeral. I hardly even cried at his funeral. I saw his photo on top of his coffin & I still hardly cried. Even though I had helped to arrange his funeral, I didn’t believe it was my dad’s funeral. There were people at his funeral who hadn’t seen him for years & friends of my brother who cried more than me. It made me feel heartless. How could I not cry? Simple answer: because I didn’t believe I was at my dad’s funeral. I also felt that I had to stay strong for my mum. If I cried, I knew my mum would break down. I had to stay strong for her to help her through it. She was going through so much more. Besides grieving for my dad, she was also grieving for herself. She had breast cancer. She was living with cancer, after seeing what cancer had just done to my dad. She knew she needed surgery to remove her cancer in the near future. Her surgery had been postponed because of dad’s ill health. She had so much more to deal with so it was so much more important to look after her than to think about myself.
I’m really not sure how long my numbness lasted for. After the funeral, all my efforts went onto ensuring my 2 young children were ok. I had to ensure my mum was ok. I had no time to even question how I was feeling. I had to help my mum through everything. I knew I was going to have to help her through her surgery. She was coming to live with us when after her surgery so that I could look after her. She wouldn’t be able to lift anything, or do very much at all initially.
I did not allow myself to grief properly which I now believe did me a lot more harm than good. At the time, I guess it was a good avoidance technique. Trying to avoid accepting the reality that my dad had gone. I really do not recommend doing this. It is much better to allow yourself to grief rather than try to avoid it.
I do remember feeling angry at some point several weeks after he died. I was so angry with dad for smoking. I was angry at him for ignoring our advice and our pleas to stop smoking. I felt angry and guilty at the same time at myself for not making him stop smoking when I knew he was still smoking secretively. I felt angry and guilty at myself for not making him go see his GP with his cough. I knew a persistent cough was a symptom of lung cancer but I ignored it and told myself that I was just overreacting because I was a nurse & knew too much. I was angry that his cancer had been so aggressive & had taken him from us so quickly. I was angry because dad had been suffering for the last 6 months with immense pain and shortness of breath. I felt guilty for not being able to do anything to stop him suffering or to stop him dying. I did not do enough to stop him getting the cancer. I felt guilty for thinking that dad was now in a better place because he (hopefully) will now be peaceful & at rest without any more suffering. I remember being out walking the dog & not being able to breathe for feeling all of this guilt.
More recently, I had been struggling to look at photos of my dad without crying. I could not talk about him without welling up and clamming up. It was too upsetting. I was trying to be strong.
I started suffering from anxiety quite soon after dad died. Everything was making me feel anxious. I was anxious initially about what everyone at work would think about me for taking so much time off work. I had been on maternity leave, and only back at work for 4 weeks before dad died. Now I was taking time off to grieve for my dad and to support my mum, and I didn’t know how long I was going to be off for. Because of this, I was anxious that everyone was talking about me behind my back. Not many people got in touch with me to see how I was doing so I was anxious that they didn’t actually care or that they just thought I was taking advantage and taking too long off work. My anxiety got worse as time went on. The longer I stayed away from work, the worse my anxiety got. I felt I needed to go back to work to get back into a normal routine. At the same time, I was anxious about going back to work, about being able to physically do my job any more, about being able to remember what I was doing. I had been off work for 15 months in total. I have a very responsible job. If I get things wrong, it could really have serious consequences. My self confidence had all gone.
I knew I had to stay off work to look after my mum but I knew at the same time that I had to get back to work for my own mental health.
Mum had her surgery which went well. Her recovery also went well. She was doing amazing! I was, however, beginning to find things harder and harder. My anxiety was getting worse.
I went back to work when mum was more independent and things started improving. The guilt of being away from work for so long disappeared. I was slowly able to rebuild confidence in doing a job that I loved. I had gentle pushes in the right direction from work colleagues who obviously had a lot more confidence in me than I had in myself. I talked to other colleagues and realised that I had been so wrapped up in everything in my own life, that I hadn’t considered what other people go through in their lives. There is an image that people portray on social media that their lives are perfect. Everyone feels the need to live up to this image. The reality is often quite the opposite. It was through talking to other people about what they are going through that made me get my head out of the sand.
I was talking to another colleague at work the other day about how I had felt when I had been off work. She told me that people had been scared to get in touch with me when I had been off because they did not know what to say. A quick message, even just to say hi is all that is needed sometimes to let people know you are thinking about them. Don’t be afraid to talk to people who are suffering from grief. You can not say the wrong thing! But don’t pretend that you know what they are going through, because you really have no idea unless you have been in a similar situation yourself. Even then, everyone deals with things differently. There really is no right or wrong way of dealing with things. Do not let people tell you otherwise. And ignore people’s negative judgements.
My New Year’s Resolution that I made to myself was to put 2019 behind me. 2020 is a New Year. Its time to try to move on. To try to be happy. All my dad would want is for me to be happy. So that is my aim. I also want people to be kind to one another. It really does not take anything to be nice to people you know or to strangers. You really have no idea what they have going on in their lives. Please try not to be so judgmental. An act of kindness is all it can take to change a person’s whole day.
I am painting a picture that things are hopefully looking up for 2020 for my family. Mum has been given the all clear after her surgery. All her cancer was successfully removed. She does not need further treatment. This is fantastic!However, my father-in-law was diagnosed last October time with lung cancer with metastasis. He is currently undergoing chemotherapy. 2020 is still going to be a challenging year for our family. The only thing we can do is to take each day as it comes. We will make every effort to be there for Jason’s step-dad & his mum, and to offer support and help where it is needed.
This post has taken me so long to pluck up the courage to write. I don’t actually know whether this post or my first post has taken the most courage. It took a lot of courage to start writing anything about our family cancer journey. But what happened next is not something that I am going to find easy to write about. So you could say that I’ve been putting off writing it. Plus December is not a good time – my birthday, Christmas, my husband’s birthday and then New Year. All difficult times to be writing about sensitive issues. Here I go making excuses again, and still putting off writing about what happened next….
Dad was getting more weak & breathless by the day really. He had home oxygen for a few weeks which seemed to help a bit. I remember that he got a phonecall from someone (I can’t remember who, or how it came about!) saying that they had arranged for further drainage of pleural fluid to help with his breathing. Great! At last he might feel a bit better when he was less breathless! So we took dad in on the planned day. They were going to do the drain the following day.
The following day came and I got a text from dad saying they couldn’t do the drain because there was no fluid in his abdomen to drain. I was confused. As far as we were concerned, he had gone for drainage of fluid in his lung, not his abdomen. His abdomen was a lot larger than normal so I had wondered whether he had ascitic fluid there and that they’d decided to drain that instead. The nurses didn’t know what was going on. They did mention about him coming home the following day since they were unable to do the drain. I raised great concerns about this as dad was now struggling to walk down the corridor to the bathroom & was almost falling. The consultant would see dad in the morning.
The next morning came, and seeing as it was a Saturday, it was the on-call consultant who saw dad. As soon as the consultant had seen him, dad text me. The consultant said that for some reason, the wrong type of drainage had been booked for dad. He should have been having drainage of the fluid in his lung like we originally thought, and not the abdomen like they attempted! They were going to try to do it over the weekend. We weren’t exactly happy about the cock-up but we were happy that they were now going to do the correct drainage to help dad’s breathing.
Nothing happened during the day on the Saturday. I hadn’t really expected anything to happen anyway. Dad had been fairly settled all day with his breathing. I always text dad before bed, but dad text me first saying that his breathing had got worse and that they were planning on doing the drain on the ward overnight. I knew this was not good. They would not attempt to do this unless dad was seriously unwell. He kept texting me updates. They attempted the drain but couldn’t manage to get it in the right place. They were now going to leave it until the morning.
That night, my 11 month old daughter had kept us up all night as she was finally teething (she was only just getting her first teeth at 11 months!) we finally got to sleep and managed to sleep until 9am. When I woke, I instantly checked my phone for updates from dad. I had several from him which sounded quite panicked. He was telling me he had had a new oxygen machine fitted overnight. Then another text told me that the nurses had told him he had nearly stopped breathing overnight. Now I was panicking! Then he told me the doctors thought it was mainly cancer in his chest, not fluid. We raced to the hospital to see him. The consultant had a chat to us about everything that was going on. His 2nd lot of immunotherapy was due on Wednesday and the on-call consultant said it was up to dad’s usual oncologist whether he could still have it or not. He told us that if it was up to him, then he would still give dad the immunotherapy, but it wasn’t his choice. At least we had some hope! Dad had a further CT scan on the Sunday afternoon.
Monday came. Dad’s oncologist came to see us with the results of the CT and the plan of action. Dad was getting more confused, but he was still getting out of bed and was still eating all his meals. The oncologist told us that the CT had confirmed the cancer had grown at a massive rate, and that his chest was now full of cancer. There was no further treatment they could offer him. He told us that dad may have 3 weeks left and that we should aim to get him to the local hospice. This was the news we were dreading. We were all just shattered with the news. Dad kept apologising to mum. He kept saying he was sorry.
We went home that evening. Dad had been fast asleep for a couple of hours and we’d left him asleep to go home. Mum came to stay at our house. I didn’t want her to be on her own. I remember texting dad that evening to tell dad that mum was staying at my house. I kept checking my phone and he never replied. He hadn’t even seen the message. This was not like dad. I had a gut feeling that something wasn’t right. I just knew something was wrong. Dad was always checking his phone. He always text me. I kept telling myself that he must have just been exhausted and wanted to sleep.
My phone rang at about 2am. I knew instantly it was about dad. We went in immediately. Dad was now not responding. They said he had woken up after we’d left the evening before. He’d been sat on the edge of his bed reading his paper. The next time the nurses walked past dad’s room, he was sat on the floor at the side of his bed and he was unsure what had happened. Then he’d become unresponsive after that.
Dad had just given up. He’d kept going and had remained strong for so long, hoping and praying that he would get better. The moment he was told that there was nothing else they could do for him, he had just given up. He had no fight left.
Dad was kept comfortable. He occasionally did wake up and would say the odd word to us, but he got agitated and was obviously in pain. So the nurses would give him medications to help settle him and his pain. I hated them giving him these medications because I wanted dad to be awake and to talk to us and I knew he wouldn’t do that after he’d had these medications. At the same time, I wanted dad to be peaceful and not in pain. I knew that having these medications was dad’s only option. One thing that sticks in my mind, is one time when he woke up. He barely had any energy to speak, but he looked at me and told me he loved me. I will always remember that.
My daughter’s christening had been planned for the following Sunday. I desperately wanted dad to be there but knew that wasn’t going to happen. The hospital Chaplain arranged a blessing in dad’s hospital bedroom so that we could have a service with dad present. I was so grateful for this. The a Chaplain then said a prayer for dad. To this day, I know that dad heard that prayer, and I know he would have been able to hear everything from my daughter’s blessing. Dad reacted when the Chaplain said the prayer to him. I was so grateful we had this service. We are not really a religious family, but this service just helped us in some way. We cannot thank anyone enough for arranging this.
We went home that evening. I knew when I left dad that it might be the last time we saw him. I was hoping that wouldn’t be the case but my gut said otherwise. Sure enough, I received a phonecall at 10pm.
So we were so happy with the news we had been given about how successful dad’s Chemo had been, and with how well he was doing in himself! We were managing to get out & about more. We were going to cafes for lunch and we went to the local park where dad managed to walk around with minimal breathlessness.
Dad had actually mentioned to the oncologist during his consultation that he felt ever so slightly breathless again, but we all put it down to being anxious about waiting for the results of the CT and what it was going to show. The oncologist offered to repeat a chest X-ray but after discussion, we all agreed to monitor the breathlessness and if it didn’t improve then dad was to get back in touch with the hospital. Dad continued complaining of the breathlessness for the next 2 weeks. I was sure it was anxiety after everything he had been through. He certainly didn’t look any more breathless. We had just had this fantastic news so it couldn’t possibly be more than anxiety! However, as we were nearing 2 weeks after the consultation with the oncologist, his breathlessness was getting more & more apparent.
Dad’s GP came out to see him and sent him to A&E for further investigations. They kept him in overnight because they wanted to exclude a PE and cardiac causes. So the next day, they did a CT scan as they thought it was most probably a PE. That teatime, the lung cancer nurse came to give us the results. The results took us all by surprise. We could not believe what we were hearing. There was no PE. Phew! However, the cancer had doubled in size since his last scan 4 weeks earlier. We got dad home out of hospital within an hour. The best place for dad was to be at home. We saw the oncologist a few days later for the next plan of action. We were hoping and praying that there was more treatment that could be offered but nothing was certain.
The oncologist explained that when the cancer grows so quickly after the chemo, research has actually shown that in the majority of cases it’s because the cancer has become resistant to the chemotherapy and that the cancer had probably started growing again after his 3rd chemo session. This meant dad could not have any further chemotherapy. His options were fewer. Luckily they offered dad immunotherapy. This was fantastic news!! We were so relieved. The immunotherapy basically boosts the immune system to attack the cancer cells. The only downside is that it doesn’t happen immediately. It can take a few weeks to start working. We just had to pray it would work for dad, and quickly.
Somewhere amongst all of this, my mum had had a letter from the breast screening service. She had an appointment to attend her breast screening. With everything that was going on, I thought that mum might defer her screening until dad was a little better again. However, she decided to attend her breast screening appointment.
Everything that happened from this point is a complete blur to me and I cannot remember the order in which everything occurred so please bear with me.
Dad’s breathlessness was getting progressively worse. I arranged with the lung cancer nurse for dad to attend the cancer care ward for an assessment of his breathlessness. It turned out that his oxygen levels were dipping really low when he was walking so he needed home oxygen. This was arranged and dad went home the same day.
Mum received a letter from the breast screening service recalling her for further investigations as her initial screening had been abnormal. Dad’s 1st immunotherapy was coming up. Mum’s appointment to the breast screening was the same day as dad’s immunotherapy. Mum went with dad for his immunotherapy and left him there with my brother. I took mum for her breast screening appointment at a hospital in a different city. Dad was distraught that he couldn’t go with mum and was constantly texting me asking what was going on. Mum needed an ultrasound and then a biopsy. The breast screening nurse told us that they were almost certain that mum had breast cancer but we had to wait for the results of the biopsy to be 100% sure. One thing for sure was that it had been caught early. A positive thing at least! We had an appointment to go back for the results of the biopsy the week after.
When we got home, dad was devastated at the news, as we all were. How was it possible for both my parents to have cancer at the same time? Why was this all happening to us? What had we done wrong to deserve this? I was so grateful that mum had gone for her breast screening when she could easily have deferred it with everything that was going on with dad. She had no lump, no symptoms. She was otherwise clueless about her cancer.
The day of the results came for mum and the biopsy had confirmed breast cancer. She was being referred back to our local hospital for a mastectomy due to the size of the tumour but it was thought to be very early stages still. I attended the appointments with mum to see her consultant and for her pre-assessment. We were given a date for her surgery.
Breast Cancer Risk (Cancer Research UK)
Mum’s cancer has reinforced to me how important it is to attend the national screening program appointments. We all have busy lives and can easily make excuses not to attend but at the end of the day, the screening has been put into place for a reason. It doesn’t take long to attend appointments so I urge you to attend. We are very lucky to have the screening programme on the nhs. It really does save lives. So please please attend those appointments! Whether it be breast screening, cervical screening, bowel screening or any other screening that you might be offered. Like I said in one of my first posts – we all think we won’t get cancer, but we easily could do. We don’t always get symptoms until the cancer is more advanced. Breast screening could have saved my mum’s life! I am so grateful for that!
We were all nervous about the start of the Chemotherapy. Was it going to work? Was it going to make Dad really poorly? I can’t even begin to think how dad was really feeling about it. He tried not to show his emotions but I know deep down he was worried.
The day of his first chemotherapy arrived. I wasn’t allowed to sit with him throughout his chemotherapy session because I had my 6 month baby daughter Charli with me and she wasn’t allowed anywhere near the unit. I remember going to see my work colleagues and spending about 3 hours there because I did not want to leave the hospital building. My mum was sat with him and rang me when they were finished and I then drove them home. The first week after his chemotherapy was the worst. He felt nauseous constantly. He felt exhausted. A week after his chemotherapy session, I popped into see how he was. I remember that day so clearly. I took one step into the living room and took one look at him sat in his armchair and I welled up and just wanted to cry. I tried to remain strong to talk to him to ask how he felt before walking straight back out of the room to dry my tears away in the kitchen. He looked so dreadful. He had no energy to get out of that chair. He could barely open his eyes. He was so pale, weak and gaunt. I was so worried about him. I couldn’t stay with him. I couldn’t bear to see him like that. It broke my heart. I wanted to stay strong for him and there was no way I could see him like that and stay strong. I couldn’t even imagine how difficult it must have been for my mum seeing him like that all day every day. It was so heart breaking. I went home that day and was constantly messaging dad and mum to check up on him. I went back to see him the day after and he seemed slightly better. For the next week, each day then showed a slight improvement.
It was then time to go back to see the oncologist.
The oncologist wanted to check dad was doing ok on the chemotherapy and to decide whether he could continue with more chemotherapy or not. I was so worried that his oncologist would turn around and say no more chemotherapy but that proved not to be the case. Dad was allowed to continue with chemotherapy. We were all so relieved and happy. I was also worried at the same time. I couldn’t bear to see dad the way he was that day. The thought of him being like that terrified me. However, we knew that he had got through the first round of chemotherapy, so he could do it again! The second round of chemotherapy had similar effects as the first, but maybe not quite as bad. He still felt very nauseous for the first week after this chemo session, but maybe not quite as bad as the first time. He had been given different anti-emetics so maybe that helped slightly? He didn’t seem quite as tired, and he certainly looked brighter. He didn’t have another day like that dreadful day. Don’t get me wrong, he didn’t look like he could run a marathon, but he seemed slightly better after the second round of chemo. Again, after the first week had passed after his chemo, he seemed to improve again and seemed to get more energy as the nausea subsided. He now had his appetite back and was starting to put weight back on.
He had to go to see the consultant again just before his third chemo session. This time, he went for an x-ray prior to seeing the oncologist. The oncologist had the results of the x-ray by the time we saw him. He was very pleased with the x-ray results and with how dad was doing. The x-ray looked very hopeful, and looked like his cancer was shrinking. At last, some fantastic news! More fantastic news followed. The oncologist said he was happy to increase the amount of chemo dad could have. I think he increased it from 70% of the normal dose up to 80%. From our point of view, this meant that there could be a greater chance of shrinking the cancer further. We were so happy after this appointment!
The third chemo session went well, and the effects afterwards were not as bad again. The fourth and final session 3 weeks later also went well. Dad was now feeling so much better. His pain had virtually disappeared (he was still on a high dose of slow release morphine but he wanted to reduce this the next time he went to see the oncologist). Dad was now able to walk further and further distances again and he even walked around our local park. I cannot begin to tell you how it felt to be able to take him out, and enjoy walking around the park again, and seeing him looking so healthy again. It was like a miracle. He was no where near to his health prior to all this commencing, but this was just such a relief.
He had a CT scan a couple of weeks after his last chemo session. Then we got the results of this 2-3 weeks later. That day was the best day! The results could not have been better! The CT had shown such a massive reduction in the size of his cancer. Dad did not need any further follow up appointments or scans for another 3 months unless he got any further symptoms in the meantime. We walked away from that appointment so happy! We were so relieved the chemotherapy had worked! We were so happy that we could go away and try to enjoy our time together; to go out and have some quality of life. The way dad had responded to the chemo was just amazing!! It certainly hadn’t been an easy ride for dad undergoing the chemo, but it certainly was worth it, especially when the oncologists had given such low statistics of the probability of the chemo working in dad’s case. We were so relieved that dad had been so determined to give anything a go! We were looking forward to what the coming months would bring now that dad was doing so well.
So after just over a week back at home, dad started getting breathless again. He was admitted to hospital for a second time. I made it clear to the admitting registrar that dad had not been informed properly about his probable diagnosis so she sat down with us and explained it all. Dad was in tears. He just did not want to believe it, which none of us did really. Dad was still hoping for the best. We were all trying to remain positive. We knew that further investigations were required. The first lot of fluid that had been analysed from dad’s lung had come back negative for cancer cells. I was hoping that this was positive news and that it meant his cancer hadn’t spread to the pleural cavity which in turn would hopefully mean a better prognosis.
Dad had a chest drain inserted to drain more fluid to help with his breathlessness. A second sample of fluid was taken and sent for analysis. The following day, the consultant came to talk to us in great length about everything. At last we had answers! We were so grateful for someone finally talking to us properly about everything – although it was hard news to hear. The plan now was to take a biopsy in his lung. The procedure was booked but we had to wait a few days…..
Seeing dad in hospital, barely walking and in immense pain was difficult. He had been started on slow release morphine which was controlling his pain slightly. As more of his pleural fluid drained away, he was able to walk slightly further distances and we managed to take him to the hospital cafe a couple of times to get him away from seeing the same 4 walls of his hospital room.
The day before his lung biopsy, we got the news that his procedure had been cancelled because it was no longer needed. That was the news that I was dreading. It could only mean one thing. Yes … the fluid that had been sent from his drain the second time had shown cancer cells meaning we were dealing with a very advanced cancer of the lung that had spread to the pleural cavity. We were all just distraught. Everything I had feared was coming true. I knew the prognosis was not good from the medical journals I had read but the only person I told this to was my brother. We had to stay positive at this point and hope that a) dad would be offered treatment and b) that the treatment would work.
Dad’s drain had drained approximately 4 litres in total this time. He then had pleurodesis whereby a ‘talc’ was inserted down his drain to adhere the lung to the chest wall and close the pleural cavity. His drain was then removed, and dad came home. I drove him home. He went inside and straight upstairs. That was a big mistake! He was in so much pain when he got up there, and he couldn’t breathe. It took quite a long, panicked half an hour before he managed to settle his breathing. He hadn’t walked far in hospital, and did too much too quickly, the moment he got home. It really frightened dad and he didn’t dare come downstairs for a few days for fear of the same happening again. That is until he had a visit from the lung cancer specialist nurse who went above and beyond her duty of care throughout his whole cancer journey and we cannot thank her enough.The lung cancer nurse was very motivating and honest with us. Dad absolutely had to start mobilising and getting out and about otherwise he would not be offered treatment. That was a harsh reality for dad. He desperately wanted treatment. It was a couple of weeks before we had an appointment to see the oncologist which meant we had a couple of weeks to get dad mobilising again. He was in agony, and really struggling with his breathing at times, but he was determined to get treatment. We had visits from the MacMillan nurses who tried adjusting all of dad’s medications to get his pain under control. The lung cancer nurse had also given dad a handheld fan to use to help ease his breathless episodes.
2 weeks passed … the day of the appointment arrived. Dad was mobilising very short distances. He was now managing to climb the stairs at home, but he stopped a couple of times on the way up to catch his breath. I was so scared that dad was not mobilising enough to be offered treatment. Our appointment went on for about an hour and a half in total. Mum and dad were not digesting much of what the oncologist was saying, which resulted in questions being asked over and over again. Dad’s prognosis without treatment was 6-9 months.
The big question was – would they offer dad and treatment?
His cancer was too advanced to be able to operate on.
He could be offered chemotherapy but there were side effects which may him more poorly and could result in his condition deteriorating quicker. The oncologist was very hesitantly offering dad the chemotherapy and said he was borderline as to whether it would be beneficial to him or not. They said they thought there was only about a 20% chance that the chemo would work to shrink the size of dad’s cancer. If the chemotherapy did work, then his lifespan could be extended to another 1-2 years with us. Dad had no doubt in his mind. He was going to have the chemotherapy. He was going to fight this. The oncologist then decided that they would only give him 70% of the normal chemotherapy dose so that the side effects would hopefully be lessened.
My emotions were all over the place. I was so happy that dad was so determined to fight this for as long as possible. I was so happy that he was giving the chemotherapy a chance even though the odds seemed against it working. I was terrified that it would make him really poorly and lessen his life even more. I was terrified of the possible side effects of the chemotherapy. I was wondering if this was the right decision for dad. BUT I knew that it was his only hope of trying to extend his life. It was his only hope to spend more quality time with us and with his young grandchildren. He was determined to see his grandchildren grow up. He 2 grandsons – who were 4 and 2 years old at the time, and he also had a 6 month old granddaughter. Chemotherapy was his only option to try to make this happen. We would take each day as it came, and pray that dad did not suffer from any of the side effects.
So after being told by the GP that he was 99.9% certain that nothing sinister was occurring in dad’s lung, I was a lot happier but still worried. My concerns grew as dad’s ‘pneumonia’ still did not resolve with another set of antibiotics. He went to see another GP in his practice who then arranged for dad to be admitted to hospital to have some fluid drained off his lung. 500ml was drained & dad had a CT scan whilst he was in hospital. The doctors had sent some of the fluid away to be analysed. The doctors came to remove dad’s chest drain so I popped off the ward. Unbeknown to me, the doctors decided to talk to mum & dad about the results of the CT scan whilst I was gone. I came back & mum informed me of what the doctors had said. The CT had shown something in dad’s right lung but at this stage there was a number of things it could be. Mum recited about 6 differential diagnosis’. One of these was heart failure, and the rest are now a blur. That is, apart from the last possible diagnosis. Mum quoted directly what the doctors had said …. “or lastly, another possibility is that this might be a lung cancer”. As a specialist nurse, I knew straight away that the doctors were highly suspicious of a cancer. From my parents point of view, they had been given a list of differential diagnosis’ which could all have been possible. My parents had not been informed (or had it emphasised) that the diagnosis that was most likely was the lung cancer. Had the doctors checked my parents understanding on what they had just been told, then it may have become clear that my parents still believed that this was not lung cancer. I believe this is where there was a major breakdown of communication. Mum and dad were trying to remain positive and were placing all their bets on this not being a lung cancer. I wanted mum and dad to remain hopeful until we had a definite diagnosis, but I also felt really let down that communication could have been better on such a sensitive topic.
Dad was discharged home from hospital whilst we waited for the results of the fluid that was drained. We were told that there was a high possibility that there would be another fluid build-up in dad’s lung which would require further drainage. Therefore, we were to go straight back to A&E if dad did become breathless again.
The day after dad’s discharge, I went to see mum and dad at home. Dad was doing ok but clearly still unwell. This is when mum showed me what dad’s discharge paperwork had said. Diagnosis: Lung Cancer. Mum was absolutely devastated. It confirmed what I already suspected, but now we were placed in a really difficult situation. Dad had not read his discharge paperwork. It was his health and he certainly had a right to know what was going on. Should we show the paperwork to him and shatter all of his positivity? Or leave it on the kitchen worktop so it was available for dad to read if he wanted to, but not actually highlight to him what it says? We chose the latter option knowing that dad would most probably not read it. Maybe we were shying away from telling dad, but I honestly did not believe that I should be the person who had to break the news to dad about his diagnosis. Neither should we have been put in that situation by the doctors. To be told you have cancer by reading it on discharge paperwork shows a complete lack of compassion in my eye.
How was I feeling at this point? Absolutely devastated! Words cannot describe how I was feeling. A complete mixture of feelings. I was so hurt at the poor communication. At the same time, I was trying to remain hopeful that the results of the fluid came back negative for cancer. If cancer was not detected in the pleural fluid, then dad’s cancer might not be as advanced as I feared. However, if this was to be the case then I knew that further investigations (a biopsy) would be needed to confirm cancer. I knew that lung cancer is usually detected in the advanced stages because people are usually asymptomatic until the advanced stages. I was praying this was not the case for my dad. I put my nurse hat on, and was researching medical journals to look at the prognosis of lung cancer when cancer cells are found in pleural fluid. What I found was not good! I had to remain positive for my dad’s sake. It was so hard.
Maybe not quite everything has been negative about this experience of poor communication…
From my nursing point of view, I have learnt so much from this situation. In my nursing role, I frequently have to break the news to people that they may have cancer. I have always tried to be as honest as possible. This recent experience on the receiving end of a cancer diagnosis has shown me how important it is to check people’s understanding of what I am saying. Better communication to my parents could have given us such a better overall experience.
So where do I start talking about a subject like cancer? The best place would probably be to talk a bit about my dad because everyone thinks it’s not going to happen to them. We are all good at thinking that we’re not going to get cancer. Well cancer unfortunately doesn’t think the same. My dad was the kind of dad who would do anything for me. He would drop everything he was doing to come to do something for me. I am eternally grateful for everything he did for me. I considered him to be a fit and healthy 67 year old. Apart from him needing a coronary artery bypass graft (heart bypass) in 2003, he had no other health issues. Even the fact that he needed this surgery came out of the blue. He had gone for a routine health check to renew his heavy goods vehicle licence and it was discovered that he had previously had a heart attack (unbeknown to him). He was extremely lucky to be found to need this surgery because he could otherwise have had another serious heart attack which didn’t bear thinking about. His surgeon said he would not perform the surgery unless he stopped smoking. At the time, dad smoked about 40 cigarettes a day (or maybe even more). He therefore stopped smoking; had the surgery and regained his health. He had many hobbies such as golfing, walking miles each day with the dogs and gardening on his allotment which all kept him very fit. Maybe a couple of years after his heart surgery, we began noticing that he had begun smoking again behind our backs. The tell-tale signs were very obvious. As a family (myself, my brother and my mum), we discussed his smoking and decided to go along and pretend that we didn’t know that he was smoking behind our backs. Our fear was that if we confronted him, then he would start smoking more again, and start smoking whilst he was with us and not just behind our backs. He obviously wanted to smoke otherwise he wouldn’t have started again after successfully stopping for maybe a couple of years. I even caught him smoking on his allotment one day. He promised me that he would stop immediately. I obviously knew this was an empty promise and never mentioned it again. How I wish now that I had! If I had of nagged and nagged him about it then I might have just got through to him before it was too late.
In 2017, I began a course at university and met up with a friend on the same course who I had studied my nursing with. She is now a lung cancer specialist nurse. We were talking about work one day and we got onto talking about my dad. Her words to me were “you have to talk to him and get him to stop smoking”. I knew that she was right and I desperately wanted to talk to dad to get him to stop but I didn’t talk to him for fear that it would cause arguments, upset and that he would smoke more. I have really beat myself up for that decision ever since. Looking back, it was a warning and things might have been different had I actioned that warning. But now I will never know..
Fast forward to 2018. I found out that I was expecting our
second child – due in September 2018. We had talked about having a second
child, but didn’t expect it to happen as easily as it did. It had taken a
couple of years to get pregnant with Joshua, so I expected the same
difficulties again. I have always believed that everything happens for a reason
– I just didn’t know at the time why it had been so easy to conceive this
second time. Now I fully understand why – so that dad could meet our second
child and get to enjoy spending some time with her.
In January 2019, I was the happiest I had been in a long
time. Everything in my life was going well. Then mum noticed one day that my
dad was getting a bit short of breath climbing the stairs at home – which was
not like him at all. Only days before, he had been out walking with mum and was
fine. Dad admitted that he had had a pain in his back too which he put down to
his bad back that he occasionally suffered from. He went to see his GP who sent
him for a chest x-ray and started him on antibiotics for a chest infection.
When this chest infection didn’t clear with the antibiotics, I made my dad go
back to see his GP again and I went with him because I was fearing something
sinister was going on. His GP said that dad had pneumonia and that he was 99.9%
certain that there was nothing sinister occurring. I now felt more reassured
but deep down I was still worrying.
So I know that throughout this I have said that I wish I had listened to warnings and done things differently. I have beaten myself up so much, but the truth is that it is not going to change anything by thinking in this way. What is done is done and I cannot change that now. So I guess the message I’m trying to get across from all of this, is trust your gut and do what is right. Don’t take the easiest way out like we did. We did not confront dad about his smoking and that was not the right thing to do for his health. If you yourself are in a similar situation, wishing that you too had done things differently then try not to beat yourself up about it like I have done, but instead try to make changes in your own life to help prevent the same happening to you. Make those changes now! Its never too late to make those changes.
Here is a link to the NHS website for advice on stopping smoking:
Hi, my name is Cath. I am married to Jason and we have 2 wonderful children; Joshua who is 4 years old and has just started infant school, and Charli who is a (non-sleeping) very happy 14 month old. I have been inspired by a mum blogger to start a blog myself – but not from the perspective of being a mummy; but to write about my journey throughout 2019.
My family’s journey throughout 2019 has been a very tough one which is why I am commencing this blog. My first aim is to reach out to others who may find themselves in challenging and emotional situations like mine. My second aim is quite a selfish aim – to try to help myself through this tough time by talking about my own emotions in public. So what am I talking about? It’s a subject that people still do not like to talk about even though we are in 2019. The big C word. Yes … Cancer.
3 people in my immediate family have been diagnosed with cancer since February. Throughout all of these cancer diagnosis’, I found that it was easier to focus on the person living with cancer (rightly so!) and in doing this I forgot to look after myself and my own emotional wellbeing. That’s why I think it is so important to reach out to others who might be supporting their loved ones throughout their cancer journey because we are all important and it is vital that we do look after ourselves. To do this, I will be discussing my own journey and emotions rightback from where it all started. I am a newbie to blogging so please bear with me, but I will give it a shot!
Cancer journey - a relatives perspective 