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[suzie]

Hello, I just read your story in the Gazette and the chronicle last night, and felt hopeful that there may be something I can do about our situation. We were told on 27th march (my birthday) that my Dad has advanced lung cancer and only has weeks to live. As you can imagine we are all devasted and shocked, as we expected his consultant to offer more chemo or at least offer something other than a death sentence. Prior to the appointment we knew that the cancer had progressed to his spinal area but we didn't even know it was in his lungs. He endured chemo and radiotherapy for most of last year and we thought that the tumours had been shrunk because when the treatment ended he wasn't given any further appointments or scans. I keep wondering if there has been a missed opportunity when something could have been done sooner, so I was thinking of asking to see his medical notes, but to be honest I wouldn't have a clue what I was looking for.
My Dad has already fought bowel cancer 7 years ago and had a colostomy bag fitted. He didn't receive any chemo after this operation, which some say could have prevented the cancer from returning. I suppose we will never know.
My Dad used to be very active and liked a laugh, but now we rarely see him smile and he just looks petrified and broken, which breaks my heart. My 5 year old son adores him as well and its awful to think that he won't have the time with him that he should have.
Is there anything we can do to support you/contribute to your battle? I don't want to just accept that nothing can be done.

suzie

[Deanne Jenkyns]

Dear suzie,
I think I have heard it all and then I hear or read something that shocks the hell out of me. I cannot believe the way your Dad had been treat. It is unbelievable that he has not had any follow ups. It infuriates me so much that patients are treat in such a way. Which hospital is your Dad having his treatment?


Deanne
x

[nicki]

Hi Suzie

I am so very sorry to read about your precious dad. What an awful time he has been through and all hsi family too.

I am friends of Deanne & Jimmy and obviously on here to give them all my support, reading stories like yours really shows you that there is so much heartache going on everywhere to our loved ones.

Your offer of support is very kind and I hope you get some answers regarding your dad.

Take care

Love Nicki
xxx

[Deanne Jenkyns]

Suzie,
I have sent you an email hun.


Deanne
x

[suzie]

Deanne

My Dad is a patient at South Tyneside Hospital. He had his chemo there and the radiotherapy at Newcastle General

suzie x

[Deanne Jenkyns]

Hi Suzie,
Jimmy is at ST too had chemo there and radiotherapy at Newcastle. Which consultant is your Dad under? Just thought I would point out that we got all of Jimmy records. CT scans etc. I know it's hard not knowing what to look for but the internet came in handy for looking up what things meant. How is your dad pain wise? I would be asking for follow up if I was you hun. I cannot believe the lack of support. You could try ringing one of the cancer specialist nurses and ask them whats the hells going on? You have my number you can call me anytime if you want a chat.


Take care
Deanne
x

Deanne
x

[phillipa]

I am speechles. I have just written a letter to one of my cousins regarding treatment here in England. She is a Consultant and is horrified at what I am telling her.

I am so sorry about the treatment regarding your much loved Dad. Do get his records. I have found using the Data protection Act, Subject Access request to get all the records they have to comply within 40 days and provide everything and unexpurgated. It will cost you £10.00 to do this, but for your peace of mind it is well worth it.

I would also get hold of one of the lung cancer nurses and have a talk to her regarding the care you Dad is receiving. it is just not good enough,

Hugs

Phillipa

[Deanne Jenkyns]

Suzie,
Been thinking about you. How are you? Silly question I know...but just wanted to let you know I have been thinking about you and your family.



Take care
Deanne
x

[suzie]

Hi Deanne

I just read your message about Jimmy doing well, and I'm really pleased for you both. You sound like a very strong person and I am full of admiration for what you & Jimmy and your family are doing.

My Dad was under Dr Azabi but now he's been tranfered to Dr Robson at St Claire's Hospice. So far Dr Robson has been much more sympathetic, and even though he's upfront about the situation, he still tried to offer some words of encouragement. Dad has been told that the macmillan nurse could call and see him at home, but instead he has chosen to attend the day unit twice a week. He finds it boring and he's the youngest one there (he's 58) but I'm happy that he's getting out of the house and speaking to people who are in similar situations. It's helpful to know that the nursing staff are always around so they can keep an eye on him informally.
I'm definitely going to persue the medical records. I'm hoping everything's been done the way it should have been, but I just worry about the months passed inbetween appointments, when we all know that timing can be everything.
It's strange because to look at him he doesn't seem that bad, he's bloated due to the steriods he's taking, but his breathing is ok at the min so he's still able to drive. He said he's not experiencing much pain and has even reduced some of his painkillers, but the docs have told us that it's no reflection of what's going on inside.
I showed him your story and asked if he wanted to give it a go, between the family we could afford to pay for it, but he doesn't want to at the moment. By admission, my Dad is very pessimistic, but maybe when he's having a 'good' day he cold be more open to it so I'm going to persevere.

Thanks Deanne, take care

suzie x

[Deanne Jenkyns]

Hi Suzie,
I have not heard of Azabi, Jimmy is under Dr Mazdia. What we have found out since Jimmy's diagnosis is through research. The trouble is the NHS will offer you what treatment is available to them. I have questioned and questioned, asked about new treatments etc. We would not have been told about them. We have raised many questions since Jimmy's diagnosis. We were told he could not have radical radiotherapy and then another hospital Hairfield hospital in Middlesex (heart and lung specialist hospital) we asked to be referred there because we wanted to see if Jimmy would be suitable for cryotherapy. which is freezing the tumour .They were not able to offer that but they said his best chance would be radical radiotherapy. We went back to see the oncologist in South shields and he said he could not have radical radiotherapy and that he had not heard back from the the Harefield Hospital. When we we went for Jimmy's next follow up after his last session of chemo. They oncologist said that you will benefit from radical radiotherapy. Now I really believe had we not gone to Harefield Jimmy would not have got the radiotherapy. I do not really know a lot about your Dad so cannot really comment on what the oncologist has said, I am not of medical back ground but because I have done so much research regarding my husband about other options and treatments I do know quite a bit about what treatments are out there. We have learned if you don't ask you don't get! Suzie. From what you have said about your Dad he seems to be doing quite well, that has me puzzled as to why he has not been offerd more treatment. You have my number If you want to give me a call, meet for a coffee or something I would happily do that.

Take care
Deanne
x

[dtay]

Hi Suzie
Sorry I havent joined in and welcomed you but I have been on hol for a couple of weeks. I am so sorry about your Dads diagnosis - I know exactly what you are going thru as I travelled the same route with my Dad. The most important thing is that you push for the treatment your Dad wants and dont stop questioning and fighting your corner all the time. Research as much as you can and put your ideas forward to your Dads docs. I am sure that when your Dad feels better he will get his fight back. It is a very trying time and very distressing for everyone, I know. Tarceva helped my Dad for a long period of time and gave him good quality of life for over a year.
I hope your Dad improves soon.
Dawn x