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PCUK Nurse Jeni

Hello Marmalade,


Thank you for your continued support to so many on the forum. And also for your updates on "Carrying on" thread.


It is good that you have been offered a meeting Marmalade - and you will certainly do a great job in feeding back some of the issues Louis and yourself encountered. It is vital that things are fed back in this way, as they can be incorporated in training & development, hopefully ensuring these don't happen again. They may also be useful for individual 1-to 1's, in terms of identifying training needs - for example, suggesting a refresher in advanced communications for some individuals.


For any feedback, its the outcomes which are also important, for example, were there any actions following your meeting, who has documented these, and what are the timescales when they want to see actions implemented by? Who will reassess progress, and what are the changes to practice which come from these actions?


There have been cases, even on this forum, where very practical measures have been put into place to prevent "x" or "y" from happening again.


Your feedback will be invaluable Marmalade - thank you for doing this so that others can have a better experience.


Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

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Hello Marmalade.


I hope you do get through to the hospital. I am continually annoyed by the NHS over how they treat Pancreatic Cancer patients even though, like you, I am a big supporter of the principles behind the NHS. On my small support group there is a person whose mother (similar age to dad) was written off by them. Her son contacted me and we chatted about it on the phone and he managed to convince her to see the prof and get the nanoknife. She has responded well to treatment. And then Prof said her stent needed to be changed to a plastic one and they had trouble for various reasons achieving this on the NHS until she was jaundiced and they told her family she had weeks to live because the tumour was also growing and was basically going to do sod all to help her. They went back to Prof who said no it is not the case, it is swelling and scar tissue and she just needs the stent changed. Well I can tell you this... I know for a fact once you have another professional telling them they are talking rubbish they have to act or leave themselves liable. What then happens, jaundice is gone and mum bounces back. She would be dead now if it was left to them. I don't trust any of them around PC and it is one of the issues I am not continuing my thread at the moment because I have an ethical dilemma with the censorship from the lovely PC nurses who seem to think that protecting those in the NHS is more important than the fact that they are absolutely accountable for every action they take whilst accepting tax payers money for their role. It is enshrined in law under the FOI and DPA and they should not be subject to the protections of censorship. Every e-mail they write is not only public property but someone else's personal data. I digress and I am clogging up your thread when I need to write this on my own. But, you have to ensure you get outcomes as xx says. We have to champion this cause so that the next person does not have to suffer incompetence and belligerence. At an average age of 72 at diagnoses there are people out there without family and fighting this dreadful disease on their own. What the hell happens to them? If they were the poor woman I described above they would be dead.


And, don't let them treat you like an idiot either. I go suited, booted and prepared to everyone of dads meetings and on the last one I was actually asked if I was a medical professional. It should not be so but I see a marked difference in their attitudes if I turn up as a professional.


I have spent my career championing the causes of the little guy. I know being an auditor sounds boring but I am a Audit Manager (Investigations). I deal with whistleblowers and public sector cock ups that make the press regularly. I sit in tribunals and courts and I fight belligerence and people that think they are owed a living every working day. I have done this is the NHS as well and I know the system and I am now actively coaching anyone I know on how to tackle them head on when it comes to PC.


I will jump off my soap box now.. I think you can tell I am a little annoyed at present over various matters.


On to you... I do hope you are well and that you know you are always in my thoughts. I am going to stop by one day and buy one of your lovely teddy bears. If anything ever happens to dad I may just commission you to do some magic with his clothes to make bears for the kids. Your bears do look so wonderful.


Did you get your carpet down... you do seem very busy with all your clearing out and organising. Louis does sound as though he was bit of hoarder. It is strange that when I read these threads I imagine your houses and I bet the reality is very different to my mind.


I will tell my work colleagues that you found the DWP efficient. They took the Housing benefit fraud work from my team as part of a government initiative to centralise fraud. As part of this they have been brilliant and Milton Keynes seems to have had a drastic reduction in fraud so I have FOI'd them. It is not a reduction in fraud, they are just not investigating anything and so report zero fraud. I am glad you had a good experience because they can also be a cumbersome beast.


Have you looked at Turkey for a holiday. Fantastic deals at the moment and as long as you are not near the border it is very safe still, despite the scare mongering. In peek times next year I can take 4 adults and 1 child away to a top all inclusive resort for around £3k for 2 weeks.


I hope Suzie's presentation went well. I have to do one for a job interview soon and I hate them.


Sorry for all my ranting, I have just poured myself an early glass of wine and will come back later hopefully a bit merrier!


Love you loads my dear friend.


xxx

Edited by Dandygal76
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Ah darling DG, you are welcome here anytime. I have to go out now but will respond tomorrow or later. Keep it up DG, if these things are not debated nothing will change. I don't believe that treatment is always desirable but I defend the right of those intimately involved to debate it and to have the very best information, funding and treatment available if they want it. The ignorance at district hospital level is dire. M xx

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Oh Marmalade.. my lovely PC friend has just phoned me and I got so much wrong in my message. The NHS are still treating his poor mum like she is written off though the family is sure she is not on the end game yet. We all want our love ones to go out with dignity... when their time is up but not when there is still some fight. Horrible hospital. They have withdrawn her fluids as well. Even with Prof saying get her there and he will sort her out because she is not at the end of this journey. Unfortunately

though hospital demands sufficient resources. I have just given them the most unprofessional non medical advice I could ever give. If she is not attached to something then bung her in the back of the car and take her to the Hospital in London where they actually know what they are talking about and more importantly... care and are ahead of the game on PC. This poor woman has other issues that can be sorted... but it is all down to PC when it comes to the medical profession. I am so cross over so much at the moment re NHS. Half of the PC stats are down to belligerence. Anyone reading this... don't suffer it if your loved one is not where they think they are and they still want treatment. Move them to somewhere that have a different outlook... you have rights... more than they think you do!

Edited by Dandygal76
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Oh DG, I wish I could put my arms around you and give you a massive hug. We chose private medical insurance years back because as working professionals at the time, we couldn't afford to be off ill and if we needed treatment, we wanted it there and then.


After hubby's treatment (first misdiagnosis and unnecessary procedures carried out for financial gain) and various things that have happened to me, I often wonder if we'd be better off both in terms of treatment and finances to be under the care of the NHS because if you're told you need a procedure, you can be sure you need it and it's not just to line a greedy doctor's pocket.


Marmalade, I too am sorry to take over your carrying on blog but I love DG and just want to try and say the grass is not always greener on the other side.


The issues you talk about I think are in general to do with ignorance of PC or the unwillingness of the clinicians to treat their patients as anything other than dead men walking. I can hand on heart say my hubby was given the most basic of care from his oncologist. No MDT. All he really had was a great palliative care consultant (who I loved and could not fault) who kept him pain free until very near the end. Unfortunately for me, hubby was too strong willed to listen to me. If I'd had my way, I'd have been looking for alternatives and maybe the ending would have been different but I was not the patient and it was his decision to stick with the same oncologist. This was private healthcare at it's best so personally, I don't think you can blame the NHS per se.....it's just the very poor outcomes of PC I believe which seem to encourage tardy and careless treatment. Because of the nature of the beast, I would love to see just one or two specialist centres in the UK staffed with the very best healthcare professionals who would have both the knowledge and the willingness to give the best possible treatment to PC sufferers but of course that's totally unrealistic.


The point I just try to get across my lovely DG is, private health insurance speeds matters up but at the end of the day, these oncologists also work for the NHS so generally speaking, it's not always the NHS to blame but moreover, an attitude on "you are on your way out" rather than I want to make a real difference sadly enough.


Whatever you do DG, please don't stop your Dad's thread.


Apologies again Marmalade. I too am curious to hear your holiday plans.....


Lots of love to you all xxxx

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My darling DG,


How heartfelt your post is, there is no doubt about your depth of feeling for this family, for us and for yourself. Real passion and single-mindedness are hugely powerful assets in driving change and I agree with you completely that change is vital.


I will not insult your intelligence by pretending that I don't have issues with "treatment at all costs" and the motives involved. My concerns are nothing new and I know you respect them as I respect your immense knowledge and understanding of available treatments, and your support for all who have a chance and want to have the very best treatments.


You feel understandably close to those who contact you because their pain, fear and frustration mirrors yours and I can see this in your post. There is not a soul on here who doesn't understand your need to help, support and care for all those who suffer this awful disease but I doubt I am alone in thinking that exhausting yourself and taking on the pain of others is unlikely to result in anyone feeling better. I weep and rail with you at injustice, because that's what it amounts to when the system fails us. There are so many injustices in the world that sometimes it can overwhelm us. I fear it may be overwhelming you at the moment but I want to post here for people to read because it is important that others who are on their journey or who will follow never feel they are alone with these thoughts and experiences. You bring light and hope and reassurance to every one of us and we love you for it. We want to give you all the support we can muster and hold you up when you need reassurance as we all do or will do.


You have a very high regard for the professor and his skill so you naturally believe his diagnosis over others, I would be the same, and I would not want to feel even a tiny bit that my faith had been misplaced. However, his skill is limited to his specialism and it may be that there are more things going on with this lady than the stent issue.


Pancreatic cancer patients and their families continue to suffer at the hands of ignorant and ill-trained clinicians, from starvation of resources, from excessively cumbersome and slow diagnostics and from a lazy and blinkered approaches to treatments. I like you will do all that I can to highlight the issues and get those in power to recognise the failings, raise awareness and support those who are dealing with the system as it is now on their journey.


Darling DG, get some good quality rest and family time, re-charge your batteries and come back to the research and campaigning with renewed vigour and purpose. You are a very important part of the forum community and a highly valued friend and that is why I say what I do.


Much love M xx

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Hi all you lovely people,


I've had a strange few days, I seem to be injuring myself (lack of concentration), trapped my hand between a wall and a fitted desk top and then got stung by a hornet, both hurt like hell but are on the mend. Doing first aid on myself is another thing I have to get used to.


Nothing much has changed for me. I still cry but now mostly when I am on my own. I am very conscious of boring everyone to tears so try to avoid situations where I know I will become emotional. The overwhelming feeling of loneliness is always there wherever I am but I am getting better at hiding it. I am trying not to look at the house which is full of stuff to be sold, recycled or otherwise disposed of. I decide to do something and then lose heart and shut the door on it. Maybe after the holiday...


I still don't know what to do with Louis ashes. I think I will bring them home and contemplate the question some more. I'd like us to be together wherever it is, maybe Lyme Park. It's a favourite place for Louis and I am very fond of the wet shirt scene from Pride and Prejudice which was filmed there. Louis and I used to laugh at it because he said (just wrote "says" but of course he doesn't any longer) the lake is freezing and full of slime!


It would appear that I am going to Cyprus where my friend Sally has found a place with good flopping facilities and a spa near Limassol so that is that. We fly next Sunday for 7 days. I hate leaving the house and really only feel any comfort when I am here but it has to be done and Sally is good company, we know lots of the same people, quite a few of each others secrets and she adored Louis, middle-aged ladies always did.


Well, early bed tonight. I am going to a beautiful thatched church in Bromham tomorrow morning to 8am BCP (book of common prayer) service with a friend then have to make an apple pie and go to my daughters house. I have not seen her for two weeks and miss her terribly. Poor girl she has been working very long hours and on calls and is exhausted so I am going to make lunch for us all. Sunday evening is when I speak to my sister on the phone too and then there is Poldark, I do like an historical drama hahaha.


I send you all love and prayers, yes all of you, active and passive on here, especially Proudwife who has completed her journey thread and who was such a comfort to me. I hope she stays around and tells us about her Moving On journey. I am also thinking very much about Dandygirl who fights so long and hard for new information and treatments and for justice in the care system.


Have a lovely evening and a restful night all of you, and don't forget you are never alone


M xx

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Thank you both. I need to definitely start my own thread up and stop sulking! I am now just posting in stealth on your threads. You gals as ever ground me back into reality and I need that... you know that with my personality. But they are accountable and I understand PC and this lady has no determinable mets. I do not believe Prof would be suggesting ambulance to him if he could not help. There is absolutely a time to quit on PC determined by individual circumstance and if I thought for one minute the woman was at the end then I would have the courage to tell the family it is the time to say goodbye gracefully. However, if it was my dad and he still wanted to fight... we would be in a&e of Imperial right now.


I am distressed, this always happens with scans approaching. I feel powerless at this time and I feel like a baby and I want my life back. How pathetic is that to write. We are now in a week and a half of doom.


Marmalade, do you have a Hornet nest near you? You had a hornet prob with Louis there did you not?


PW - I thought you was not looking on here for your cruise.


You are both not alone. Bear with me for a couple of weeks and hopefully i will be buoying you all up and not clogging up other peoples threads. x

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Darling DG, You can skulk here all you like my darling. Everything you say is relevant and welcome and we can all balance your more passionate posts so nice nurses don't have to zap you.


I quite like you posting under the radar on my thread, makes me feel like I have a use which is rare these days!


If you can't talk about your hopes and fears on here where can you? Calm yourself now girl, you have all week to get yourself in a proper lather so best to start off slowly don't you think?


Hornets nest, yes, there is a nest in our armoured bird box (long story, wood peckers used to dig in and take the baby blue tits so a friend covered it in stainless steel….) In theory they should all die off anytime now and leave just the queen inside at which point you can undo the box and chuck her out, in theory….other option is an aqua vac but they are feisty creatures…


Rest easy now all, xxxx

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I feel that up until June, we had the most excellent care on the NHS...since June it was dire due to locum oncologists and I do plan to write to the CEO about it. I don't think the outcome would have been much different, but they could have made Nige much more comfortable in those last week's or at least have tried to do something...he wasn't ready to die and I'm cross with myself for not fighting for him.


Marmalade I had my first honeymoon at a hotel in Limassol...the Mediterranean I think it was called...very nice...I do hope you enjoy it. I know what you mean about needing to be at home, I feel much the same, but then I hate it because it's not the same now. I'm finding the whole thing really strange...I just don't know how I actually feel...nothing really.


Vx

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Veema... we all feel like that so don't be cross with yourself. I already have a list as long as my arm for regrets of things I could have done differently but fighting PC is exhausting and we are mere mortals. You did your very best of what you could do at the time, hindsight and feeling differently now does not mean at the time you could have done more. The physical actions that we want to take and that we feel we should be motivated for are so complex around all of this. I hope that makes sense... I am probably the last person to be giving pep talks this weekend. xx

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Dearest Veema, I know exactly what you mean about feeling nothing. I said to someone that I didn't want the hurt to go because I was afraid there would be nothing left. I prefer to think that Louis is looking after me and allowing me to operate in neutral and recuperate a bit. It is very early days and everyone reacts differently, there is no right or wrong way to feel, only your way.


Very few of us are ready to die but sadly, this disease is life limiting and so it is always there in the background, whether we choose to address the possibility or not is personal. Keeping someone alive and making them comfortable are not always the same thing, sometimes they can work together, and sometimes making them comfortable may reduce their life expectancy or preclude other or further treatments. How can we prepare ourselves and make our wishes known if we don't acknowledge the possibility of death or expect to be able to pick the time and circumstances of it?


I hope that all of us who are bereaved can come to terms with our loss and refrain from beating ourselves up about what may have been, it serves no purpose. We did our best and no one can do more, we certainly can't change it.


As I said, I am going to feedback on the diagnostic protocols and communications at our hospital because I think that may help those who come after but thats it for me. I don't want my thread to turn into campaign against the medical profession.


Glorious day here today, early service this morning at a lovely little thatched church followed by lunch with my daughter and son in law and a walk in the New Forest. Day has been rounded off with a long chat with my sister about nothing at all mostly. I wish you and everyone you care for a very restful night and energy to face a new week.


Much love M xx

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Hi Mo,


How very kind of you to ask, genuinely, I think everyone has quite enough on their plates. I think about you a great deal as I am sure the bright and witty writing (which we all adore by the way) hides many private anxieties. We get very good at hiding anxieties. I am grateful to your Google keyboard, it's obviously a bit of a smarty pants haha.


I'm okay. I'd like to report that I feel less bereft but actually, I feel about the same and it makes very dull reading. I would have make up stories about a more interesting life if I were to continue.


Writing doesn't seem to help now as it did when Louis was ill. The words are harder and I am finding posting on here, even on other threads very difficult. I have heaven knows how many draft messages saved where I have wanted to say things or post replies but then decided not to. Your question is very timely as I am feeling increasingly isolated in my views and don't think it would be helpful to others for me to share. We each have our own path which is difficult enough without me muddying the water and putting a damper on things. Strange thing is that I have not been able to face doing much in the garden either, only what must be done. Writing and gardening have been my salvation for a long time.


When Louis was ill I think there were people who wanted to know what it would be like facing death without chemo and other interventions because they knew that one day, when the interventions were exhausted they would have to face something similar. I used war like phrases myself from time to time but now I find the PC warrior approach is too much for me. Its almost as if the route Louis chose is seen as defeatist and "giving up" and that if you are not chasing the latest trial or procedure, or demanding this or that you have failed. I know it isn't said and isn't meant but that is how it feels and I don't think he failed, I think he was brave and looked death fairly and squarely in the face, sorted his affairs and his spiritual wellbeing and then got on with making life as good as it could be for himself and us.


Even now I have typed what I really think about professor, quoted statistics and lots of other posts and then…deleted them. What is the point in questioning the faith that others have, especially when they are so much to be admired? I suppose I have a fear that there is a high degree of selling expensive hope to very vulnerable people going on.


Like I say, I feel completely out of step and if my words are not encouraging and supportive then I don't think they are fit to post here.


I am not "suffering", well, no more than anyone else. I am going out, meeting friends, sometimes going to work, dealing with the estate etc. I was at an award ceremony at the town hall last night (the bears won a prize for their hanging baskets in the Town in Bloom competition) and I am giving a talk on Teddybears to a WI group this evening and off for a weeks holiday with a friend starting on Sunday. I am carrying on...


I thank all of you for following me to this thread but it is not really helping me or anyone else at the moment so I think it is best left now.


Much love to all you lovely people M xx

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Hi Marmalade...I cleared out all Nige's clothes the other day, but he had some lovely, expensive shirts which I've kept with the intention of making a memory bear for Phoebe...I'm pretty crafty, but never made a bear before and with it being made out of cotton, there will be no fluff to hide my gaffs...any top tips? I've bought a pattern...hopefully it will have some decent instructions and I've got eyes and joints etc. Not sure whether to use the sewing machine or hand sew it?


Vx

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Oh M, Louis was a real trouper. I don't think anyone reading your your story would ever think Louis was defeatist or gave up. In actual fact, I felt that Mo's Peter should not have surgery because there comes a stage where sometimes, treatment can shorten life, rather than enhance or improve quality. Louis was incredibly brave to chose the no treatment route, he faced it head on and he gave PC a good run for it's money.


PC is very individual and as a lot of people has said, Louis' story won't be forgotten for a long while because he was pretty unique and he did it his (amazing) way. Your story will give huge encouragement to those that also decide not to follow a treatment path. I will say here and now that if I ever got PC, I'd think twice about having treatment but that's just my personal opinion. Everyone is different, everyone has different circumstances and everyone is entitled to fight, accept or embrace their condition if that's what suits them.


I absolutely hate the idea that you feel that Louis' route may have been deemed defeatist. Just the opposite lovely lady x

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Hi Veema,


Firstly, back all the fabric with iron on vylene before you start! Think about textures, fine knit jumpers make good bodies, corduroy or other nice soft fabrics make good heads and legs, flannel shirts are also good for texture. Have a look on Moonraker Bears Facebook page and you will see loads of them posted today! I have to rush now but will send you more tips tomorrow XX

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Marmalade,

Please don't ever think Louis and his story so beautiful told by you was in any way defeatist, he didn't fail, you didn't fail the shitty disease won, as it almost always, and it is almost always, does.

It is hard to read the hope that shines out from the posts, about fighting the disease, and they must never loose that hope, but its hard for us, those that have lost the battle, and still even though we did all we could, think we should have done better to help them stay longer.

I honestly don't know which path is the right path, for some like my Trevor, the operation and treatment was, I think the right path, we hoped with the surgery he might win, but when the disease returned we knew, even though Trevor could not admit it, that the battle was lost. But as he coped with the treatment well, and got 5 wonderful months in between treatments, so for us it was probably the right path.

For Louis the right, brave, path was to do what he chose, but he had you, calm and reliable in the background, he knew you would cope and you made sure he was looked after in the best possible way, and not every one can do that Marmalade, Louis was very lucky to have you.

The problem with this disease is its not just what the scans say, its insidious, and the Drs have other ways of knowing what is happening, when they decided to stop Trevors IV fluids he was still sitting up, eating, drinking and talking, but they, knew the state of his liver, they explained all this to me, I could have said no I want the fluids to continue but you have to be guided by them and their superior knowledge. I am certain the Dr's want the very best for their patients and there are a very few who don't.

I understand exactly what you mean about professor, really I do, but I suppose things must move forward and by doing these procedures hopefully they are learning more on how to control the disease.

Please don't think you have to post a reply to something that you don't agree with, I don't, sometimes I find myself reading a post and then just having to shut the lid of my laptop and walk away, but the beauty of the forum is its for people to get their feelings out, as hard as it is, for us to read them, its a coping mechanism.

I really really hope you continue your thread, I love reading your posts and your story will help so many others, you are a very beautiful writer and tell your story so well,enjoy your holiday and then hopefully you will return to tell us all about it. love sandrax xx

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Oh Marmalade,


The route that Louis and you chose was absolutely not a defeatist decision, it was one of the bravest decisions I have ever encountered in my life. I don't even know him and I don't know you personally but I know this whole forum is immensely proud of you both and grateful that you took the time to share such a courageous journey with such dignity.


We all know there is no right or wrong answer, it is an individual decision based upon individual circumstances, experiences and life. If my dad was where Louis was in life, with his beliefs and experiences I am quite sure he would have made have made the same decision. He has mentioned before if he was older and my son was sorted he would have let it go and just had the time he had left. I think if he had hit his 70's he really would have done this.


You have also been through the cancer experience before with people close to you and some of us have yet to find out what is in store. Perhaps when those experiences become our own then our views will also change and perhaps some of us (me particularly as not picking on anyone else) have a rather immature outlook on their approach to this.


I know I would never want to cause you offence or cause you to feel the way that you do. I would think myself extremely lucky if I had your outlook and approach to life.


If writing does not help you at the moment then please don't worry and also if you want to ground someone like me in reality then sometimes that is what is needed... I just think I am always right you know (it isn't really true, but please don't tell people).


You are not isolated in your views, we understand exactly why you have them and the merits of them and many people share them if on a similar path you and Louis has taken.


Louis was brave and did face this horrid disease square in the face and with dignity, grace, humour and much character.


If I ever make you feel less than that with my posts then let me be clear now, it is not the case. I have the utmost admiration for both of you.


There is much debate to be had around the Nanoknife as well.. that much is true. There is debate around most of the PC options and your opinion is just as important as anyone else and I think it is important that such views are voiced, should you choose to do so. There is no right or wrong decisions, just informed decisions.


I saw the bears photo for the award and it looked wonderful. You either carry on all you like or leave it as long as you like or leave it forever. We want for you whatever helps you.


I hope my little melt down at the weekend was not responsible as well for your feeling and I hope you know how much I care and respect you.


Much love to you.


xxx

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Marmalade wrote:

> Hi Veema,

>

> Firstly, back all the fabric with iron on vylene before you start! Think

> about textures, fine knit jumpers make good bodies, corduroy or other nice

> soft fabrics make good heads and legs, flannel shirts are also good for

> texture. Have a look on Moonraker Bears Facebook page and you will see

> loads of them posted today! I have to rush now but will send you more tips

> tomorrow XX


Thanks...I've asked Rachel (nurse) to pass my contact details onto you then we can maybe chat about bears away from this thread...pattern has arrived and I'm off to get some iron on vylene (is this just stiffener stuff?) today. Most of the fabric is cotton, but I have kept a few other bits too. I had a look at your Facebook page and posted a couple of comments, so you can always find me on Facebook from there.


Victoria x

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  • 9 months later...

Hello all,


It's a long time since I've posted on this thread but as Louis' anniversary draws closer I find myself drawn back to read again the "our journey without chemo" posts as I was in the immediate aftermath of his death. I hear from others that they too found it necessary to re-read their thread for a little while almost as if it re-connected us in some way with those who have gone. I did that and am back doing it again. I'm sure the psychologists would have an explanation!


Picking up where I left off, the writing did not help as it had before and in fact nothing was as it was before and never will be but I am writing again. This mainly came about having to write to a prisoner (another story for another time) having to dredge my sluggish mind for something to say every week has got me back into a rhythm of sorts.


I thought I would write about my experiences of grief, therapy for me as always and who knows, it may provide some reassurance to others that they are not alone in experiencing these things. It's a very long post so please don't feel compelled to read it all or to read it at all.


I always had a good memory especially for numbers but it disappeared with Louis and what started as understandable absentmindedness became over time, a frightening symptom of being out of control. Really trying to remember to lock doors or turn up for appointments only to find I had the time or day wrong or had left doors wide open became very distressing, what if I had really lost my mind? This must be what it is like when dementia sets in. People would laugh when they knew what I had done or not done, and say "oh I did that once". Once is the operative word, I was doing it all the time and not laughing but crying. I know Dandy's mum has had a similar reaction it is very upsetting.


Eating - oh lord! For 40 years I cooked from scratch, grew my own veg and for two whole years I managed Louis blood sugars with diet. Even while he was ill I realised that my good management of his sudden onset diabetes probably made his life unnecessarily miserable (no cake or wine which he adored). I now know of course that the diabetes was caused by PC and should have been investigated as it was sudden and unexplained, the fact that I was so successful at managing it helped to hide the symptoms and cause complacency. Louis was a man of routine, liked his meals a regular times and was not generally an impulsive chap, with one or two notable exceptions. My reaction when he died was to stop caring about food at all. Without any exaggeration I ate biscuits for 4 months, just biscuits and Magnum lollies. I am living proof that you can survive on just biscuits and Magnum lollies. Occasionally I had some biscuits with dried fruit in or nuts and pretended these were health food! After 4 months I went off biscuits but still eat other rubbish, don't have any regular meal times, hate eating by myself etc. I don't fit in half my clothes and am still struggling with any routine. Others have said this is because I did not go back to work any time soon and it may be so. I am in a place where I don't want much to do with my old life.


Physical exhaustion has plagued me, to be fair it is less now that I am eating a bit better but the feeling that the batteries never charge properly is still with me. I am like an old mobile phone. I spend longer in bed but sleep less than I did and it was never brilliant. In the early days this was a major issue but like everything else one gets used to it and finds coping strategies. I have long wakeful periods during the night and then drop off around 5am for a few hours. It works so long as I don't have to get up early.


My confidence also packed it's bags and went west. Louis was the decision maker at home but as we shared the same values it worked out pretty well. He did twice buy houses without consulting me (really) but they both turned out to be brilliant moves so can't complain. In business I was in positions that gave me the responsibility to make decisions and I have had to make a few tough ones as well as ones with huge financial risks. After Louis died I couldn't even decide what clothes to wear. I made decisions one day only to reverse them the next. I changed my mind from minute to minute sometimes and still do! It took me months to decide to change my car but strangely that provided a focus for my dithering, away from probate and estate paperwork. Louis left everything to me and I was the sole executor which made things very much more simple and cheaper than where others are involved but even so, you are in a position where you are making important decisions while in the worst mental state to do so.


Being physically alone has been a challenge and continues to be so. I am very lucky that I have never felt afraid in the house, I can think of no reason why Louis would want me to be afraid or harmed. The day everyone went home after the funeral I moved what had been our bed into the room where Louis died and have been there ever since with Tigsy the tiger sitting at the end where he always sat with us before moving to be with Louis. The silence in the house is both comforting and lonely. I struggled to leave the house at all for several weeks. I miss the shouting at the TV, the rustling of the newspaper, the sound of another person... I miss someone asking me if I'd like a cup of tea or someone being there for me to ask. Most of all I miss his touch. I told the girl who does my pedicure that she is the only person who touches me now bar the hugs with family and friends which are rarely that intimate, and we both cried. Sorry to have to burst another bubble but cyber hugs are not the same. I came from a family of seven children to live with Louis for forty odd years and now, for the first time in my life, I am alone. Another change to be endured... or embraced.


Along with these distressing changes in mental and emotional state was the deep furrow of loss across my heart which does not abate. I saw a statement somewhere recently which sums it up. You do not get over a loss like this you learn to endure it. That's how it is for me, the longing is not forgotten or replaced by new things it simply runs alongside like a stream.


I write what it is like for me and know of course that everyone has different experiences and concerns. Maybe some of you recognise some or all of these changes and perhaps you have found ways of enduring them. I expect I will too.


My life is not without purpose or eventfulness. In fact it has turned out rather more eventful than I imagined it would be.


Louis and I agreed I would have a fully funded year in this house to recover before thinking about living somewhere more convenient to family, shopping and a bit of society than this lovely, but remote house. I put the house on the market in May and was shocked to sell it almost immediately to some people who fell in love with it and were prepared to wait between exchange and completion. I move out a week tomorrow...I have found a holiday let I can have for a few months so that I can put everything into store but am yet to find a new home....My daughter thinks this is brilliant as I am now a cash buyer and I seem to have sold at the top of the market which means I can rent and buy low. Only problem is that what I want is not where I want it at a price I want to pay! I should be feeling confident but uncertainty is my Achilles heel.


Some of you will know that I have taken up playing the ukulele. When I spoke to my doctor about my memory and demetia fears he reassured me that I do not have dementia but that my mind and body had gone into protective mode to let me grieve. He suggested that I try learning a language or a musical instrument. That very evening a lady put a post on public Facebook page asking if anyone would like to form a Ukulele group in a neighbouring village. Someone else asked if you needed to be able to play and the poster said no, she would teach everyone. I went along never having picked up a ukulele and not knowing anyone of the six people who turned up. It was the first time I had been in a group of people who didn't know me since Louis died and it has been liberating not to have to say how I am or be spoken to in a Sunday voice. I play badly and it takes me ages to memorise the fingering for a chord or the strum pattern for a tune. It's a bit like patting your head and rubbing your tummy, but no one seems to bother and we play and sing (compulsory and sounds like a cats chorus but who cares) for 2 hours a week. It, or something is helping with the memory, I still do daft things but a lot less often.


I don't have the concentration or the drive for work but go in a couple of days a week to do the books and mend teddies. Instead I have started volunteering once a week with a local homeless and vulnerable adult drop in centre. I couldn't face anything else to do with cancer. That started with volunteering on reception, to becoming a trustee of the charity as well a shift leader for the sessions! I can't do anything by halves! We provide a hot meal, access to showers and clean clothes and the use of a telephone. We also allow them to use our address and signpost the "guests" to housing and other services where appropriate. 50% of those who come to us have homes but are not coping. They really need support with educational and or mental health issues but sadly there isn't any so charities fill the gap as best they can. The other 50% are sofa surfers or rough sleepers about half of whom are drug or alcohol dependent. The Chinese say "may you live in interesting times" and I do seem to.


The main focus of my energy such as it is has been the work I have been doing with my local district hospital on the PC diagnostic pathway. I've had several meetings with them, have helped to access training money for them from NHS England's budget, have addressed the Upper GI MDT AGM and the Cancer Board and best of all, the work I've been helping on with specialist nurses and the upper GI MDT, has resulted in a shortening of the average 56 days to diagnosis, to the new NHS target of 28 days! This has all been without on-cost to the hospital and actually saves time in clinic so that the team can spend more time with patients who they need to see and who want to see them. It is not an anyway my doing alone but I am proud to have provided some motivation and access to the funding to make a start. Another side effect has been that conversations about ALL options for elderly patients with complex health needs are being had between the Upper GI consultants and patients after MDT consideration. These conversations now include the option of not having any treatment and/or low level palliative chemo only. They include information on what can be done to keep the patients comfortable which removes a lot of fear. This will hopefully prevent the issue Mo and her Peter had where a surgeon says yes he can perform an operation (which is true, he/she can technically). You lay there in your gown on the day of the op until the anaesthetist says no because of the risk you won't make it through the 6 to 12 month recovery period! This is of course a totally different matter for the young and otherwise fit for whom surgery can give years of acceptable quality of life.


Another big bit of good news which is being adopted at our hospital is "My patient record" It started in this region and has now been adopted and supported by NHS England for roll out. For the first time it will be possible to see and discuss test results and treatments with your doctors and specialist nurses remotely and to consult them about medications and side effects and changes in condition. Digital communications with the team looking after you from home which updates your records and sends reminders to clinicians to check progress and appointments! It's a very exciting development pioneered and tested by xx Hospital xx and now operating in quite a few hospitals with 5000 prostate cancer patients now communicating and consulting on line. This has very wide implications for all chronic and long term conditions and is coming to a hospital near you soon!


Our next specifically PC event is a GP referral awareness seminar where we have invited all the GP's in the area to come and take part in looking at when and how someone should be referred for investigations. The aim is to further to shorten the pathway and catch cases earlier. When that is done we need to start attacking the inconsistencies in palliative care but that is a huge challenge and bigger than just our area.


As you see, lots going on and I will update my Diagnostic Pathway thread when I have finished packing up the house!


Busy, yes, lonely yes, new and exciting yes, scary yes. Actions are positive and designed to help me build a life for myself in the new order but don't think that it is easy to walk into a room of people you don't know or force yourself to speak to 60 strangers about your experiences of PC or move house or cope with finalising an estate. It's gruelling and it takes courage we often don't know we have. Were it not for the beautiful people on this forum who have continued to walk with me, encourage me and befriend me, I honestly don't know where I would be now. I have a wonderful daughter but she has not coped well with her fathers death and other tragedies and I have tried very hard not to burden her with my issues. She is much better now but he forum family have been a beacon and a source of strength to me as they have to so many others. Some of them have even been a source of socks for the homeless but that really is another story.


If you have stayed with me through this long post, God bless you for your care and interest. If you are still caring for your charges I send you love and prayers and if you are one half of a pair or missing a parent, be sure that they are not gone but in Gods care and in your heart.


Marmalade xxx

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Marmalade so much of your post resonates with me! Today would have been Rob's birthday and in 13 days will be the 2nd anniversary of his death. I miss his presence, his touch, his embracing of life and fun, his love. After nearly 2 years I feel I have not found the new life that awaits me yet. My daughter gets married next week and she, her partner and my 2 granddaughters (including the delightful 18 month old that Rob was so sad he wouldn't meet) are moving away shortly after (they live with me at the moment). I am questioning everything about my relationships at the moment even to the extent of feeling I have no friends which I know is ridiculous. But I think it is just that even close friends have their own families and lives and obligations on their time and I am feeling the loss of being and having an "other half". I've also suffered from severe lack of concentration and when I came home a few months ago to find I'd put the cheese in the bread bin instead of the fridge I couldn't help thinking "it's started". I do think the stress levels with PC are through the roof partly because of the generally dire prognosis but also because of its unpredictability in behaviour. I have quite a lot on with my daughter's wedding and the week after organising a music weekend but I have just started to learn another language. Can only send you one of those unsatisfactory cyber hugs but perhaps we'll meet one day and I can give you a real one! Xx

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Hi Didge,


Well if I have done nothing more than tell you that you are not alone it is something. I know what you mean about questioning relationships, dare I say it, even with ones children... It was actually my Financial Advisor who broke the news to me "your children don't need you" sounds harsh but it is true. They have made new lives with their partners and children if they are lucky enough to have them, you are part of that family but they can manage their own affairs and they want to do so. Had we had our men we would have had company so the realisation would not be so harsh. I cried buckets, nothing had really changed but in some ways everything had.


I wallowed about a bit in self pity but in the end I started joining things (never easy). I tried not to join things I had been involved with before, the Ukulele, the volunteering at a homeless shelter, going to events at our local bookshop, musical evenings and so on. I dropped out of quite a few because they were not me but I have also met people in similar positions who are happy to share trips to the cinema or cafe's or an occasional pizza. It all takes time and guts and the hardest thing is to accept that children having their own life is not a snub and it doesn't mean they don't love you. Well it was the hardest for me but then everyone is different.


Did we ever join on FB or email Didge? I up for a meet when the wedding is done, PW and I keep threatening to take a holiday cottage somewhere, perhaps you might fancy that? Weddings are also very stressful so don't be too hard on yourself. Plan in a treat for yourself the week after.

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