Hello, 

I was moved by your story and can relate to it, on several fronts. 

My girlfriend was misdiagnosed with pneumonia in January 2018. She suffered a series of minor strokes and her heart rate and breathing was all irregular. After being in and out of hospital she was admitted to a respiratory ward at the end of January and when a different doctor came on shift he seemed to view things with a fresh perspective and found  that a huge aggresive soft tissue tumour had grown around her heart and lungs. Huge amounts of liquid had to be drained from her lungs before chemotherapy could start. On New Years Eve we had been walking over the Brooklyn Bridge looking at the year ahead. Nothing could have prepared us for what was to come. She fought incredibly hard, the cancer was so aggresive she had 120 hour cycles of chemotherapy pretty much - it was bag after bag for 5 days  and she had 8 rounds of it. Brutal beyond belief. 

I think I know what you mean about the grief- you can't ever prepare yourself for it even though you know its coming. And when you are on a cancer journey, the best way I could describe it would be to say you are on a terrifying ride , that you can't get off because you want to do everything you can to help, that just keeps snowballing ever more out of control. When the end comes in situations like ours , there is no happy ending. This snowball that you are a part of has just been smashed in to a concrete wall and in to tiny particles and I felt like i was one of those particles floating around waiting to land. No longer sure what my purpose in life was because everything I had been doing up to point leading up to her death had been geared towards the fight and it was now over and lost. It was the ultimate feeling of deflation. Glad the suffering is over for the victim, but the ultimate feeling of being short changed. 

It can feel like a lonely place, but I found it helpful to talk to people or more often than not, talk at them. Sometimes I got frustrated that even some of my closest friends didn't understand (entirely not their fault) but concluded that this was because mine and her relationship was so close it was impossible for most people to comprehend how it felt. Maybe its the same for you? and you should try and see your grief as a positive reinforcement of the strength of your relationship with your Dad and how special you were to each other. 

Its tragic and frustrating that he didn't get to see his Grandson but try and see how happy he would have been just the fact that you are having a baby, and that the family is continuing. You've been through hell but better times are coming. You will never forget your dad, and you will be able, with time to tell your little boy all about him. 

All the best

James 

When I was reading your story I had to pinch myself a few times thinking it was me who had written most of the points. 

Yours is the closest I have read to reality for me and I am so so sorry. 

My dad was diagnosed in August 2018 with oesophagus cancer after having been sent away months before with tablets for acid reflux. He opted for 5 weeks intense chemo and radiotherapy to shrink the tumour which ended just before Christmas, that was painful in itself to watch at the end where he could barely eat and was in a lot of pain from the intense radiotherapy. 

His operation like your dad was booked for 21st Feb. On the 24th January we were told after his pre op routine scan that it had spread to his liver and there would be no operation, but just chemo for time. A few weeks later we were told his liver was blocked and chemo would not be an option. 

Last Monday he came to my 36 week scan, his first grandchild. Since then he has deteriorated significantly and it is so so painful to watch although we are spending every moment with him. I know we don’t have long, I know I need to accept that as much as I’ve wished he probably won’t be here for the baby and that absolutely breaks my heart. I have cried and cried until I can’t cry anymore, I’m so petrified everything is going to happen at once.

We have amazing family and friends, but very little understand exactly how this feels. 

He is battling so hard, but to see him in pain, not be able to eat or barely drink, no energy, sleeping on and off is not my dad. Do you think they are aware and scared or at this point are too exhausted to even think? Xx

I am so sorry to hear what you are going through right now, it's the most terrifying and heartbreaking thing watching someone so close to you deteriorate so quickly and knowing how much they are willing to fight isn't it?

I'm glad your Dad was able to see his grandchild via the scan and I'm sure he was chuffed to bits, try and keep as positive as possible, some people do fight and battle for as long as they can and he maybe here to hold his grandchild in his arms, I'm praying for you that he will.

My Dad was aware right up until a couple of days before his death, he was scared when he was told it was just weeks and beyond devastated he wouldn't be around to meet his grandson but it allowed him to say everything he wanted to way, put provisions in to place and to spend as much time as physically possible with him. 2 days before his death he was on so much pain relief to make him comfortable and also a medication to help him not be agitated. He could hardly talk but he was pointing to the ceiling as if something was there and would nod his head as if he was saying yes. 

I really do wish you the luck in the world and hope everything goes well in birth and that your dad will get to meet his grandchild. 

Take care. Xx 

James, I am so sorry to hear what you went through witnessing your girlfriend become so poorly, it's so heartbreaking what this awful disease can do. 

She sounds like a fighter and what you've been through I cant even comprehend. It just goes to show that none of us know what's around the corner and to try and live life as much as possible, as hard as that may be in times of loss.

You've described exactly what losing a close one feels like and although we've both suffered a huge loss to our lives it goes to show how close we were and we should be grateful to of had people so amazing in our lives and cling on to the amazing memories.

I wish you all the best for the future and hope that one day living life can be that little bit easier.

Take care. 

So sorry for you loss- you are definitely not alone! My dad was diagnosed with throat cancer in June 2018. After 6 weeks of intense radiotherapy we were gutted to find out it hadn’t worked and his only option was a laryngectomy. He had the operation at the end of January but died last week due to complications caused by radiotherapy damage. The last 6 weeks of his life he had no voice, couldn’t eat and was stuck in a hospital bed. I am 7 weeks pregnant and it devastates me that he’ll never meet his grandchild. The only think that comforts me is that he knew about the baby and it gave him some joy in the last few weeks of his life. I have started a diary and each day I am writing a happy memory about him which seems to help me. It also means when memories start to fade I have something to look back on. X

Hello there

I'm so sorry to hear about the death of your Dad.  I can completely empathise with you,  My darling husband was diagnosed with the same cancer in August 2017, (after being told he had indigestion and acid reflux) operated on in December 2017, re-diagnosed in September 2018 and died in November 2018. My heart goes out to you honey, it really does.

Please take care of yourself and your bump and PM me if you need to talk

Ruth xx

p.s. I was so frustrated at the original GP who insisted on prescribing medication for indigestion for Steve even though he told the Dr it wasn't indigestion (he literally couldn't swallow food) that I made a complaint via the Health Ombudsman.  It took over a year but they upheld 2 of my points; specifically around weighing patients so a comparison can be made between the patients weight over 2-3 appointments.  There is now a policy at the surgery to weigh EVERY patient who complains about difficulty swallowing/eating/indigestion.  And there is a new policy that the GP surgery will contact each relevant patient to ensure they have prescriptions for dietary supplements.  IF anyone feels their GP surgery should be held to account for anything I would encourage you to get in touch the Health Ombudsman online.  It is the only way things will improve.  It's not about complaining, its about learning lessons so the next patient through their doors gets better service.

I have a sad update, my dad passed away on a Friday. 

He was at home with all his family just as he wanted, but it was heartbreaking. He was so aggitated and uncomfortable so it was almost a relief to see him peaceful for the first time in such a long time. I really struggled to watch his breathing change and watch him slip away, but he really did just look like he was sleeping. 

He didn’t get to meet his first grandchild and now I am 38 weeks and petrified that I will miss the funeral. 

The tears just won’t stop xx

Hello Sunshine

I am so, so sorry to read your news. The next few days and weeks are going to be such a mixture of pain, sorrow and joy as you welcome your baby into the world. I can only imagine what a turmoil you must be in. Take some comfort from the fact that your dad is no longer struggling. I am sure if necessary your funeral directors can delay the funeral if that is what you and your family decide. In the meantime, please remember to take care of yourself and your little one. Sending you lots of love and thinking of you.

Ruth x

Hi Ruth

i was interested to read about the effects of contacting the health ombudsman. 

My girlfriend kept going to the gp complaining of pain, exhaustion , an intermittent racing heart , and havijgva series of mini strokes and a cough and cold.   

He thought she was depressed and that lemsip was a good idea for the cold symptoms. When she went to the hospital at the time of each mini stroke I feel like she was failed there too, on so many levels. The frustration and anger of feeling you are not being listened to actually adds to the awful cancer situation/ grief and in itself I’m finding it something else to get over.  

Once she was diagnosed I could not fault the care she received but you are always going to be left wondering what would have happened if they had found it quicker .

It probably would not have changed much because her cancer was so aggressive and unusual - but it felt too often that she was a box ticking exercise - they were happy to discharge her without finding out what was wrong.  

James 

Hi James 

I’m so sorry to hear about your girlfriend. I hope the following information is helpful to you 

The first thing I did was make an official complaint against my GP in writing.   In other words I tried to resolve it myself.  I was unhappy with the way they responded and basically they stonewalled me so I took it further.  

You will need to keep an accurate record, as far as you can remember, of all the dates, times and outcomes of her appointments.  If you don’t get the response you want  then go online and start the process via the health ombudsman.  When they receive your details it goes to review and they decide whether or not to pursue it.  The point of you contacting the GP first just shows some good faith on your part that you did actually try to get the answers you wanted yourself. 

 I think, but I am not sure, you will need to  repeat the process with the hospital. 

 If you are at all unsure ring the ombudsman and get some advice  on how to proceed.

 Good luck and take good care of yourself James 

Xxx

 PS, just so I am not encouraging a stampede towards the health ombudsman, there has to be, what you believe to be a clear case of  “Negligence“ (I’m not entirely sure that’s the right word but you know where I’m coming from) .  In my case I was absolutely livid that the doctor did not listen to Steve when he said he didn’t have indigestion, they sent him away twice with ridiculous medication and although, ultimately, nothing would have saved Steve,  I was concerned he should have been referred, and would have been referred to a  gastro specialist  sooner if the GP had got their act together.