Chemotherapy options

[J_T]

The photos are fabulous Carole, what a lovely family. My heart goes out to you and your gorgeous twins xxx

[Cathy]

Hi Carole

Just to echo what Julia has said, I wish you strength for the next few days and that I hope that Clive's funeral goes perfectly for you and your children.

I hope that you will get some comfort from knowing that Clive was deeply loved and that you did everything possible to help him fight his brave battle.

We will be thinking of you

Cathy xxx

[Bee]

Hi Carole,

I had a look at the photos, lovely. My heart goes out to you and your children, stay strong, I am sure you will all help each other through the darkness.

Thinking of you

Bee xx

[karen17]

Oh Carole I just don't know what to say. I can't believe it. I've not been on here for a while or I would have contacted you sooner. I'm so so sorry. Another loving husband and father lost to this terrible disease. You were one . Of the first people I spoke to on here and shared emails with. Your photos depict a loving family and I know how loved CLive was by you all. Thinking of you and the children and wishing you strength at this dreadful time.

Sending big virtual hug xxx

[Carole McGregor]

Hi everyone

Thought I'd post a final message on Clive's thread. Clive's funeral took place last week. It was a Humanist service, full of lovely things said about Clive and some of his favourite music. My sister spoke on behalf of the family and read out little biographies of Clive that the kids did as part of a school project a couple of years ago. This included Jamie's comment that his Dad helped his mum give birth to him and his sister on 9th August 2000. Clive was certainly there but I'm pretty sure it was a medically qualified person who performed the caesarean ! Their Dad certainly was superman in their eyes.

Toughest part I think is still to come. I'm finding each day harder and harder. Can't really sleep and when I do, I dream of Clive and wake up sobbing.

Anyway, a couple of points that others might find useful. Apply for Personal Independance Payment now (not means tested) and consider seeking tax free lump sum pension payment under the serious illness provisions. Use the national statistics to support your application. It doesn't mean that you are admitting defeat and it could help with the considerable extra costs incurred when fighting this battle.

Don't let Clive's story alone put you off trying Nanoknife. Although his oncologist disputes this, there is very credible research which concludes that new onset of ascites in a pancreatic cancer patient 'heralds imminent death' . Clive's scan at end of July showed ascites and we would not have embarked on Nanoknife or further chemo if we had known significance.

Ask what evidence there is to support whatever treatment plan is proposed. We agreed to chemo prior to surgery for tumour that was 'borderline resectable' at the time. When surgery was performed some 6 months later cancer had spread to liver. I suspect outcome for Clive would probably have been the same anyway but fact is, there are no studies yet which prove pre surgery chemo to be better than surgery ASAP.

Complan mixed with 'oats so simple' made with full fat milk - easy to eat and probably about 600 calories in small bowl.

Don't assume anything. Chase, chase and chase again. People will soon get the message that if an appointment doesn't come through or scan date arranged, you'll be on the phone.

Hard as it may be, try to give some thought to what you would do if the worst happens. Where would you want to be, who would you want to have with you and how would you like it to be handled and have some kind of plan including out of hours and weekend phone numbers of whoever you would need to help you achieve it.. Trust me, weekend care in NHS is non existent (certainly where we live) and the usual sources of other support all seem to be on voicemail. My MSP (member of scottish parliament) has agreed to take up my complaint about Clive's treatment in hospital the weekend before he died. No one should have to go through that.

Sorry if this is all a bit direct. Trying not to be bitter and twisted but only time will tell !

Love to you all

Carole

[InfoForMum]

Carole, I for one want to thank you for your generosity coming back here to post all of that. I'm sure there is lots that is going to take a mammoth amount to work through and find your peace with.

My Mum is in the middle of pre-surgery chemo to be followed by radiotherapy to try and control a borderline rescectable tumour. Your comments gave me pause for thought, but in no-way upset me (if you needed re-assurance). The patient and carer perspective on this disease offered on this forum is critical and absolutely invaluable to fill the gaping gaps between 20 minute doses of expert medical advice.

Never doubt your welcome here in future as you struggle to fill some of the void left by your man. All will back me up in saying please pop in or call the nurses if there's anyting treatment, symptoms, emotions-wise that ambushes you.

The funeral sounded like a wonderful and fitting way to honor a superman and super dad and I hope little by little things start to feel easier and good days become more frequent than bad.

Big hugs

Sarah

Edited November 8, 2013 by InfoForMum

[J_T]

Hi Carole glad that Clive's funeral went as planned and would agree it gets harder after.

How amazing that you are thinking of others so soon after your loss, amazing!

Good for you for complaining, I too have letters to write but not quite ready yet. I doubt things will change but there's even less of a chance if we don't point out where the NHS is failing. It's so sad that you had to fight for Clive so close to his passing. I hope 'they' whoever they are sit up and take notice.

Love

Julia x

[Carole McGregor]

Thanks both

I hope I can be supportive to others on forum from time to time but probably best to wait until I am in a better frame of mind ! I am astounded at the number of people who have truly awful stories to tell about NHS and absolutely understand why so few have the stomach to go through the complaints procedure after the event. Clive asked me to try and do something to help others fighting pancreatic cancer who might not have the same support at home as we did. Think he had in mind volunteer driving or something like that but he should have known better. Being a thorn in the establishments side is much more my thing.

Sarah - thanks for taking my comment re evidence for treatment in the way it was meant. You are a smart cookie and I'm sure you will make up your own mind on what's best for your mum and I know the pre surgery chemo route has worked for many people.

Julia - sounds daft I know but in my darkest moments, it does help to remember that there are people like you who loved their husbands just as much as I loved Clive, also having to deal with their loss as a result of this bloody disease.

Take care

[J_T]

Carole, not daft at all. I get the same comfort that you do from knowing there are others in a similar place to me, people I have come to know and admire. I still find this forum a great support too.

Much love x

[EmmaR]

Carole I have to echo what Julia said if I had not joined this forum the last two months would have sent me over the edge as people just don't get this dreadful disease , take your time with grieving for Clive they say that grief is the price you pay for love and one day your children will be fine adults and so proud of you and their Dad when they really understand how you coped .

Love EmmaR xxx

[cestrian]

I can only repeat my heartfelt admiration for you wonderful carers who fight so hard for your loved ones who are beset by this cursed illness. Whilst a beautiful funeral suited to your own beliefs gives short lasting comfort your real struggle is to cope with the sense of loss on a day to day basis thereafter, so very, very hard.

As I've said before, being the patient is a walk in the park compared to what you all endure and my heart goes out to you all

Love and Peace

Mike

[PCUK Nurse Jeni]

Dear Carole, and everyone,

Thank you sincerely for your post. I am pretty sure that it will help others on here, and there are some great pieces of information there which others can avail of. As Julia said, it is very humbling that you have taken the time, and thought of others, and your comment about thinking of others who love their husbands as much as you loved Clive is so thoughtful and comforting.

We are very "proud" of all of our forum users, whether carers or patients. You show such support and empathy towards one another - it is invaluable. Julia - you are absolutely right - if there is no "feedback", whether positive or negative, then it never offers an opportunity for change. Any form of feedback should be, in the right hands, a catalyst for change.

Dianne and I are aware of the impact of this cancer on our forum and support line users. We hear about it every day, and we just want to let you know that we will also do what we can as a charity to see "something" change for this disease.

Keep safe all,

Jeni, Support Team.

[nikkis]

HI Carole,

With a nursing background myself, I am ashamed to hear stories of the care people have received, but the only way that the NHS can get better is if people like yourself go to the top and say it's just not good enough. Thinking now that people may stop asking us why Paul is not being treated at our local hospital, Colchester!

You have been so brave and strong Carole, I am sure that Clive would be so proud to know you are fighting on in his memory.

Take care of yourself and your lovely children,

Nikki

[Cathy]

Hi Carole

I can only imagine how you must feel. People often say that the most difficult time is after the funeral, as the dust settles and life goes back to a new, uninvited "normal".

Clive's funeral sounded very special and I hope that you find comfort in that.

I so admire the courage of you, and our other brave friends on here who have lost loved ones, who come back and continue to offer support and advice to others of us still muddling our way through our journeys.

I hold my hat off to you all and pray I will have as much courage.

With love and hugs

Cathy xx

[Carole McGregor]

Hi everyone

Thought I'd give you an update on how my complaint about Clive's treatment is progressing. I didn't sleep for two nights after receiving the initial response from the NHS. Most of it, particularly as regards his 'care' in hospital the weekend before he died was a shameful attempt to cobble together some justification for what was no more than a series of human errors and failure to recognise his rapid deterioration. It's made me even more determined than before to see this through and my MSP is being really supportive. I'm now waiting for the response to my follow up letter. One good thing is that Clive's Diabetic Consultant (great lady) who is involved in the updating of guidelines on the diagnosis of diabetes has undertaken to include a specific section alerting clinicians to the possibility of pancreatic cancer being the underlying cause of new on set diabetes where the patient does not have any of the usual characteristics - a start at least !

Also, had a letter published in the Press the other day after reading an item in which NHS was claiming to be ground breaking by working with other agencies on the 'touchy feely' services offered to cancer patients. Can't do link (IT skills non existent) so have reproduced below

'While I recognise that some people may benefit from a single point of contact for non medical advice during cancer treatment (Pioneering NHS service to give cancer patients broader support - Glasgow Herald 5/2/14), doesn't this really just mean better co ordination of existing services ? During my husband's year long battle with pancreatic cancer we were inundated with offers of financial advice, support groups, counselling, massage and other relaxation therapies, most provided from beautiful premises paid for by funds raised by generous hearted people. All we really wanted was a cure. Next on the list would be a speedy diagnosis, cutting edge treatment options, appointments that took place on time, the ability to park at the Beatson and finally, for us, some kind of palliative care to be available at weekends in NHS hospitals in Glasgow. I would suggest that NHS Greater Glasgow & Clyde would do better to focus on the provision of core medical care for cancer patients first before it turns it's attention to the more peripheral aspects of the patient experience.'

Mrs Angry strikes again !

Much love

Carole

[J_T]

Great letter Carole and well done you!

Ironic isn't it that you're still fighting even after your loss. I think you've got every right to feel angry.

I've still not sat down and written my letter of complaint, the focus of which will be on communication/bedside manner problems, but I'm hoping its going to be cathartic when I do feel ready. I also have to decide whether to complain officially about the two last district nurses that tended Ray the night he died. They were new to us and they handled him very roughly and he died a couple of minutes after. The way they moved him really upset me at the time though I can't believe it was deliberate? Anyway will think on it.

So sorry you've had to deal with an unhelpful response to your first letter and hoping, with the support of your MSP you get a better one next time.

Keep us updated.

Love

Julia x

[nikkis]

Well done Carole, you put your thoughts over so well, and as I have aside before unless people like you have their say ,things won't get better. My husband is regularly seen in our local hospice, and when I see the gentle, kind way the doctors and nurses deal with patients it makes me so sad to think so many people are not getting the same standard of care. It's shameful,

Nikki

[Slewis7313]

You are all probably aware that the quality of care and respect I have received from NHS Wales staff has been consistently of the highest standard. I truly believe the healthcare professionals I have dealt with would be aghast to hear some of the stories regarding their counterparts elsewhere in the NHS. Some form of centralised register of our experiences might be of interest to the wider NHS community, as you say not necessarily to 'name and shame' , but at least to make people aware.

It should not be like this.

Steve

X

[cestrian]

Hi Carole

I can only echo what Steve has said as here in Chester and Merseyside I have had the benefit of consistently excellent treatment and care. Luckily I haven't "hit the wall" yet so have not needed any emergency admissions or weekend treatment. It is patently not right that Steve and I have such good care while patients in other areas face all the problems that they do.

Keep going Carole as if patient experience is not reported things will not change. Of course they will attempt to brush off your complaint so I expect you will have to escalate it to see any results.

Love and Peace

Mike

[Cathy]

Hi Carole

I'm glad you got your letter done. Things like that can race around in your head until you get them down on paper.

Like Clive, Jonathan deteriorated very quickly in the end and thank heavens he was already in our hospice. I don't know how I'd have coped otherwise.

Hope you get a better response this time.

Cathy xx

[cestrian]

Isn't it amazing that in my profession of Financial Services the complaints procedure is very prescriptive with firms facing heavy penalties for non-compliance! Strict time scales are laid down for initial and final responses to be issued and if a client feels the response is not satisfactory they can refer to the Financial Ombudsman without cost for further investigation and a final ruling.

Oh that such disciplines applied in the NHS where the main objective seems to be to admit nothing and apologise for nothing to minimise the possibility of compensation payments,

Love and Peace

Mike