Gemma - 8th August 2010

[deb68]

Just posting to let everyone know that my wonderful, brave remarkable daughter Gemma died yesterday afternoon aged 27 years old.

Gemma had been ill with inoperable pc for some time and it was my privilege to care for her at home during her last few months.

My wish for Gemmas legacy is that more funding is made available for early diagnosis and intervention of pc - I know without a shadow of a doubt that had her tumour been diagnosed earlier she may have been able to have some treatment and a longer survival period.

The consultant who treated her informed me that in all his 30 year career, he only ever had one other patient under the age of 30 with pc.

Lets hope a cure and more effective treatment are found for this most dreaful of cancers.

I wish everyone all the very best of luck and love.

Debbie.x

[Ellie]

Dear Debbie

I am so terribly, terribly sorry to hear the awful news about Gemma. You must be absolutely devasted and heartbroken. She was so very young and had so little time afer her diagnosis.

My heart goes out to you and your family.

With love and my deepest sympathy

Ellie

xx

[Juliana]

Dear Debbie,

Such sad news, I'm so sorry Gemma didn't have more options and a shot at the treatment, it's the least that she deserved.

You are right about the early diagnosis, I just wish 'they' (whether it be gp's/consultants/specialists) were willing to rule out the worst first, and work their way down to other factors - especially in unusual cases that don't match up to the 'over 60's disease' criteria.

I hope that the rest of your family (and friends) are close by and able to support you during this difficult time.

Kind regards,

Juliana

[volmod]

Dear Debbie: I’ve been following your postings here about Gemma for some time and feel desperately sad at a life cut so short… Words are so very inadequate at a time like this, but just wanted to let you know that you are in my thoughts. If there is any way we at PCUK can help you, do let us know. Please stay in touch.

xxxVee (moderator for Pancreatic Cancer UK)

[clair2305]

Dear Debbie

sorry to hear your news of Gemma passing away. My thoughts are with you and your family.

Clair

[Nardobd]

Oh Debbie, I am so sorry to hear about Gemma. No words can help with the devestation you must be feeling, so I'll simply say that you and your family are in my thoughts and prayers.

Nicki x

[vicky1389]

sorry to hear your news of Gemma passing away. My thoughts are with you and your family xxxxx

[lynbo]

Juliana wrote :

> Dear Debbie,

> Such sad news, I'm so sorry Gemma didn't have more options and a shot at

> the treatment, it's the least that she deserved.

>

> You are right about the early diagnosis, I just wish 'they' (whether it be

> gp's/consultants/specialists) were willing to rule out the worst first, and

> work their way down to other factors - especially in unusual cases that

> don't match up to the 'over 60's disease' criteria.

>

> I hope that the rest of your family (and friends) are close by and able to

> support you during this difficult time.

>

> Kind regards,

>

> Juliana

I TOTALLY AGREE WITH THIS STATEMENT 100% - YOU ARE SO RIGHT, AND I AM GOING TO TAKE IT FURTHER WHEN I FIND THE STRENGTH xxx

[PCUK Nurse Jeni]

Hi Debbie,

Just to say thinking of you as you have your first Christmas without Gemma.

Hope it can be in some way enjoyable, and that you are not too upset and lonely without her.

God bless,

Jeni.

[deb68]

Hi Jeni

Thank you so much for your thoughts. I found Christmas and New Year unbelievably painful and now have to face a new year stretching ahead without my beautiful daughter in it.

Thank you again and I wish everyone on this site a very peaceful New Year.

Debbie.x

[PCUK Nurse Jeni]

Hi Debbie,

Just wanted to let you know that I work for PCUK. I am a nurse with 11 years experience in Oncology, and have dealt with pancreatic cancer a lot over those years.

I would be happy to chat if you feel you might like to.

Even to see if there is any way we can help.

I can be contacted via support@pancreaticcancer.org.uk.

Best wishes,

Jeni.

[deb68]

Hi Jeni

I really do appreciate your kind offer of talking and I may take you up on it as I am now going through the 'processing everything' stage when I keep remembering things and wondering if there was any other course of action that could have been taken.

I have remained in touch with the registrar who treated Gem and who was very supportive and have asked her if we could meet up for a chat about Gem - I also wonder about trying to get hold of all her notes or maybe that will be too painful - but I feel that I really need to fully understand what was happening to her and why.

Thanks again

Debbie

[PCUK Nurse Jeni]

Hi Debbie,

That is fine if you want to keep in touch. I can understand that people often revisit things when some time elapses and they feel up to it. It is an important part of the process to be able to understand what has gone on, and to have any questions answered, particularly if there are 'burning questions'. It also helps you to make sense of the 'what if's'.

You should be able to gain access to Gemma's medical notes, and this is done by application. You would need to contact the medical records department of the hospital where she was treated, who should go through the process with you. It might be wise to go through them with the registrar present? How would you feel about that? As you pointed out, it could prove painful.Undoubtedly, it would be more painful if there were terms etc..which you did not totally understand -medical speak, abbreviations etc...Having someone explain this would give a more complete picture.

Another very useful contact would be the hospital PALS(Patient Advice and Liaison Service) team. There are impartial advocates, who often help patients in investigating what has gone on, etc...They would be able to help, and if the registrar can not go through the notes, they could and get the relevant clinicians to explain, if needed.

Hope this is helpful and let me know how you got on Debbie.

Kr,

Jeni.

[lynbo]

Jeni

When my Andy was in hosp i had cause for concern and unanswered questions, i contacted PALS who took notes then set up a meeting with ward sister and myself.

I ended the meeting as it was both frustrating and confusing, PALS person said they would contact me further, they didnt.

I have all Andy's notes, but no one has offered to explain?

Where shall i go from here, i do actually understand a lot of his notes as i have done medical terminology courses previously.

The notes are upsetting, but i needed to understand whats happened.

Also the said ward sister turned up at Andy's funeral?

I didnt find out till a few weeks later and thought it was unprofessional?

Would appreciate your thoughts, and any help

Thanks

Lynne

Xxxxxx

[PCUK Nurse Jeni]

Hi Lynne,

With regard to the Pals meeting, then I would want to start by asking -what was your objective at the start of the meeting?

If this has not been met, then you may well want to contact them again and arrange a meeting. At this stage, I do not think it would make sense to include the ward sister. If there are still questions you have, you can put them in an email or in writing to the PALS team -a paper trail is always better, as it requires an answer and dealing with. Oral conversations can sometimes get shelved when the place gets busy, and there would not be an accurate record of what was said. I think as you have had dealings with PALS, it is best to go via that route. Pals job is to investigate further, and to come back to the person with answers.

Sensitively, I might point out that they will deal with "current" cases as a priority, so it may take time? Another way of approaching it would be to address a letter to the consultant who treated Andy, and ask any questions that way. They would be able to access the notes and look back into the case. Again, it may take time.

As for the ward sister turning up at the funeral, this is not uncommon, particularly if the person was well known to the nursing team or if they had looked after them for a long time (possibly not the case with Andy).I could not speculate on her reasons for going, but you would know better about the relationships there. Oncology is a unique type of nursing, and because of the nature of treatment etc..., there is a chance to build up a rapport with patients. If a family specifically requested for the nurses not to go, then they would not. But, generally speaking, you will find some nurses who go to specific patients funerals. Not all. I think it is a personal thing. As far as professional conduct goes, there is no "rule" to say they could not go. However, if it has upset you, then maybe you could get PALS to enquire as to the rationale behind it?

Hope this helps -you do a tremendous job fundraising Lynne.

Jeni.