Message for Ladywood

Hi - I thought I would start your "own" thread - it's easier to keep track that way.

I'm so very sorry to hear the news about your sister and I fully empathise with you - most of us are completely shocked by the diagnosis. When my hubby was diagnosed it took about three weeks just for the news to sink in before we could start dealing with it. We were very lucky, having a great GP who immediately recognised that there was something seriously wrong with Ted but I've heard similar stories about people being misdiagnosed time and time again. The difficulty arises because the symptoms of pancreatic cancer can also arise in many other less serious diseases. It's also relatively rare - some GPs may only see one or two cases in their entire careers. That's no excuse, I know, and I also know that it won't be any consolation to you to hear that most patients are offered only pallative care - only about 10%-15% are operable and even then it may recur.

May I ask what kind of pallative care your sister is being offered? it's no use me gabbling on about chemo if your sister isn't going to have it. Is your sister being seen in one of the regional centres (there's a list at www.pancreaticcancer.org.uk/regional_centres.htm)? If not, you may want to request that she is transferred to the nearest regional centre because the oncologists there will have significantly more experience of pancreatic cancer.

I realise that you and the family will be devestated and everyone deals with this sort of news differently but if you want to talk, ask questions or just vent everyone in our little "web-family" will be pleased to hear from you and help if they can.

Lastly, if you feel you need more support than the forum please do email support@pancreaticcancer.org.uk and they will also do their best to assist.

Kind regards

Nicki x

Dear Nicki, thank you so much for getting in touch so quickly. As far as I know my sister is having a course of radiotherapy, no chemo as the cancer is in her liver and bones as well. I think they are doing that to hopefully make whatever time she has left as comfortable as possible. She is also on morphine. Considering the devastating news she is trying her best to make things easier for everyone else and trying to cheer us all up. she is very brave. I still think the doctors should have picked something up sooner than this and I am very angry. Although i know this doesnt help anyone. I have read some of your posts and can see that you have gone through an awful lot also. I do wish you and Ted all the best and hope he continues to do well. He sounds a great man and a fighter. Thank you so much again, it helps a bit to know other people are going through the same and understand. Will be thinking of you. Marie x

Hi Marie

Your sister is very courageous. Your brief sentence about her cheering everyone else up really struck a chord - just after Ted was diagnosed he was comforting me while I cried! Sooo the wrong way round but I think in some way it helped him too.

Radiotherapy can help to relieve pain and may shink the tumours a bit to give symptomatic relief. Depending on the plan, your sister may have just a few treatments or daily radiotherapy at the hospital. The trick is to target the radiotherapy at the tumour without affecting too much healthy tissue, so at her first visit she'll lie under a large machine called a simulator to plan where the radiotherapy will be targetted.

For the treatment they will then line up the radiotherapy machine and leave the room whilst the treatment is carried out. However, the staff will be able to hear her over an intercom so tell her to just shout if she needs someone. It doesn't hurt - essentially it's a huge x-ray! Side effects can include sickness and diarrhoea but there are medicines which can help with those, so she should ask her doctor if she needs them.

Your anger is completely understandable and "normal" (whatever that is!). You may think it doesn't help anyone but it is part of coming to terms with the devestation. This disease brings a rollercoaster of emotions to everyone and it's difficult sometimes to concentrate on the positives.

Do keep us up to date with what's going on with your sister and, of course, how you and the rest of the family are coping.

Love

Nicki x

Hi Nicki, thanks for the clear discription of radiotherapy. My sister has had 2 doses this last week and is continuing with some more after the weekend. Her daughter tells me she is coping so far. I am going to visit for a couple of days this week as I live quite a way from her. I believe she is going to have a biopsy also, I'm not sure what that is for. We are all hoping that after the radiotherapy, and if her pain is controlled she will be able to go home as that is what she wants. I dont know if she will need mac nurses we will have to see. Hope Ted is doing ok, and my thoughts are with you both. Marie x

Hi Marie

The biopsy is to confirm cancer and what type of cancer. By far the most common pancreatic cancer is adenocarcinoma but there are some other types of cancer that affect the pancreas (see www.pancreaticcancer.org.uk/types.htm). It will help the doctors to target the therapy and make sure your sister gets the best treatment for her.

The pain should be brought under control - there's no excuse for any terminal patient to be in pain with the medical knowledge we have these days. It's just a case of working out what helps your sister the most and allows her to function the best. After all, if she is out of pain but asleep all the time because of the heavy doses of painkiller. that's no good if she wants to be able to go home and interact with the family. It's all a question of balance and it can take a little while to get it right.

Some people need Macmillan or Marie Curie nurses at home, others visit their local hospice either for a short stay or on a day-basis and others manage with an odd visit from their practice nurse. The important thing is to make sure your sister and those around her have a support network to help them - that might just be the comfort of knowing they can ring for a nurse at any time if they need to or it might be regular visits. Everyone copes differently and your sister's family should be sure that they can manage with whatever support is lined up for them so that they can enjoy the time with your sister and not be worrying that they might have to do X, Y or Z which they think is beyond them.

I hope you enjoy your visit and let us know how your sister is doing.

Love

Nicki x

Thank you Nicki, I will let you know how we get on. Marie x

Hi

After reading Nikki's help to Marie with what is the next step and what help she should expect, I am feeling sad, sad that people on here know more about what to do and expect than the professionals.

I am sad that, I cared for my husband on my own, with no back up or help from mac nurses, district nurses, hospice? we were missed off the 'list' or just missed.

Now I am left with thinking, did I do the right thing? did I do enough? could we have managed better?

You people on here are all amazing, and helping each other is the best we can do

xxxxxxxxxxxx

Hi Lynbo, I have been reading some of your posts and feel so sad for you. I think my sisters story is very like your husbands she was a previously very fit woman when she started getting terrible pains, bloatedness, indigeston and other symptoms. Her doctors basicaly ignored her for at least two months and did nothing. Now she has finally been admitted to hospital as an emergency it is too late, the cancer has spread and nothing can be done. The only consolation we have now is that at least now in hospital she is being cared for and given pain relief. I am so glad I found this web site, there is no one I can really have a rant to, so being able to do so here does help a bit. Thinking of you. Marie x

Hi Nicki, back from visiting my sister in hosp, her pain now seems to be under control and she has finished radiotherapy. The results of the biopsy have not come back yet so we are waiting for those. Considering everything she seems to be coping ok, she is eating and watching television and putting on a brave face for visitors. They are talking about letting her go home but there will have to be things sorted at her house first, she will need a bed downstairs and various other changes. I think she is now rather scared about leaving the hospital, she was in so much pain when she was admitted she cant bear the thought of going through that again and being so helpless. One thing that worries me a lot is that both her legs are very heavy and swollen,apparently she has been told nothing can be done about this. I have looked on the web site about this problem but cant seem to find any refrence to this. How is Ted? I do hope he is doing ok and you of course, and hope you are both coping with this cold weather. Best wishes from Marie. x

Hi Marie

I'm glad that your sister is coping.

Swollen legs are a symptom of pancreatic cancer and can arise for two reasons: (a) "ascites" which is medical terminology for abnormal buildup of excess fluid. This usually occurs in the abdomen but the legs can be affected. Causes of ascites in advanced gastric cancer patients:

The result of peritoneal deposits that irritates and blocks the peritoneum in reabsorbing fluid. This is combined with the decreased protein in the blood - due to several factors i.e. malnutrition, liver damage, etc. - upsetting the body's fluid balance and causing fluid to move out of the blood vessels into the body tissues, including the abdomen.

Increased venous pressure caused by malfunctioning of the liver or the heart, which obstructs the blood flow forcing fluid to move out from the blood vessels into the abdominal cavity.

Insufficiency of the lymphatic system in draining off excess fluid from the body because some of the lymphatic channels are blocked by cancer cells.

(b) pancreatic cancer patients are at higher risk of getting blood clots in the veins. This cause difficuly in maintaining blood flow and fluid can be forced into surrounding tissue.

Of course she will be scared of being discharged from the hospital - anyone who has been in that much pain would be. However, there's no need for fear. Now she has been diagnosed, she will have various contacts (including, I hope, a specialist nurse who works solely with pancreatic patients) and, if necessary and appropriate she can go to A&E - if she tells them she is a terminal cancer patient they will see to her very quickly.

Ted and I are ok, although we both have severe chest infections. Still at least we're coughing in harmony!

Keep us updated, ok.

Best wishes Nicki x

Hi Lynbo

Thank you so much for your message. When Ted was diagnosed I had no idea what the pancreas did - just some vague notion it was an organ of the body! Everything I know has come from people within PCUK, this forum, reputable sites on the web or my questions to doctors and nurses. So, yes it is sad that some "professionals" can't take the same proactive approach.

Currently Ted and I don't have (or need) any additional help from district or macmillan nurses - it's something that you have to specifically ask for and it can take a short while to arrange. Under the circumstances and with time being so short you did everything anyone could expect and more! You did plenty and managed fantastically well. Don't ever doubt that - I remember your messages back then and your love and care shone through.

Love

Nicki x

Hi

Thanks for the support Nikki and Marie, I often question did I do enough and was it all right.

7 weeks of a rollercoaster ride that was heartbreaking and soul destroying.

I am always on here reading the threads and finding more and more about pancreatic cancer. Ive raised over £1500 for PCUK, and I have been in our local paper, 4 times and Chat magazine doing an article on Pancreatic Cancer.

The people, and moderators on here are fantastic, and although I did not come on here whilst my Andy was poorly, now, it has been a comfort to me xxxx

Hi everyone, I am feeling upset and confused today. After another visit to my sister which was difficult as she was in pain again and distressed, we were told that the results of the biopsy showed that she didnt have pc after all but a form of lymphoma which although very advanvced was, they said much easier to treat than pc. Then after 24 hours of mild relief as it was sort of good news we were told that it is so wide spread that theres still nothing they can do! The worst thing is that this type of cancer actually had a good chance of a cure if it had been caught earlier. Sorry to moan again but its so upsetting I want to scream and still not entirely convinced that this latest diangnosis is correct! Marie x

Oh Marie ....*hugs* What a rollercoaster ride for you all and what upsetting news at the end of the day. I can well understand how you would be unconvinced that what you are told is correct.

When Ted was first diagnosed, I did literally scream with frustration a few times - there's something to this primal scream therapy, you know!

I'm so sorry to hear that your sister is still in pain and she, you and the rest of the family remain in my prayers.

Love

Nicki x

Thanks Nicki, you and Ted are in my thoughts and prayers also. Love Marie x

Hello Marie,

I have been reading your posts about your sister. Pancreatic Lymphoma is quite rare.

It is true that lymphoma is an easily treated disease, and is usually very responsive to chemotherapy. There are 2 types -hodgkin's and non-hodgkins.

The treatment for these is different. Combinations of chemotherapy are given (ABVD for Hodgkin's and CHOP plus Rituximab for Non-hodgkins).

It is sad that they feel there is no hope of any treatment -would they at least not try some chemotherapy,even if it is for the secondary disease? Has your sister been seen by a haematologist? These are the people who look after cancers of the blood and lymph systems, of which lymphoma is one. She should be seen by one at the very least, as they should make the definitive decision.

Did your sister have symptoms for long? Night sweats, weight loss, appearance of lumps in axilla, neck, groin or tummy? -these are classic symptoms.

Sorry that she was not listened to -this is awful.

Kind regards,

Jeni.

Hi Jeni, thank you for getting in touch. Yes my sister has had some chemotherapy and like you said it is called Chop. Unfortunatly I have just heard tonight that she has developed a very bad infection and is very ill. I am crying as I write this I am so sad for her and her children. She was ill for months before being diagnosed some of the symptoms you said but mainly pain that started in her hips and legs. Her doctors basically fobbed her off with pain killers and one even suggested she was imagining it! I just feel that she was already so weak and ill that she wasnt strong enough for this treatment and that if she could have been treated earlier the outcome could have been so much better. Of course it makes things even worse with it being Christmas, I just dont know how we are going to cope. I'm also quite cynical about some of the medical proffession, she doesnt seem to be getting the care she should be in the hospital most of the nurses are kind but not all of them. I'm sorry Im rambling a bit but i am so upset. I really wanted to come on this forum today and wish everyone a happy and peaceful christmas and try to be possitive and now its all awful. Thank you for listening. Marie x

I feel for you and your family so much, Marie. This sort of news is horrific at any time of the year. How is your sister now?

Sending love and positive thoughts your way.

Nicki x

Oh Nicki, where do I start? Its so awful, Linda now has swine flu and is on life support. Really dont think she can last much longer. The terrible thing is that the medics think the chemo she had,had started to work and now this. Not allowed to go and see her, only her children are allowed in and they are restrictred, so now its just this awful waiting. Dont think I will get over this Its only been just over a month since she was admitted to hospital and its like a horror story. Probably shouldnt even be writing on this forum as she doesnt have pc . (At least we dont think so) She has gone through so much. Isnt it all terrible? Marie

I'm sorry to hear Linda is really poorly.I know how you feel my nephew was only 6 when he was on life support.Only the immediate family were allowed to see him one at a time.It was so awful,every second you were waiting,it was unbearable.

He did get better so my fingers are crossed for Linda.

Do not feel you cannot post on this board we are here to listen and advise.I don't post often but do look in most days.

How is Linda?

My thoughts are with you

Pamx

Oh Marie...I wish I could hug you in person. Please know that I'm sending prayers up for Linda, You and the whole family. Please let us know when there's news (we all want it to be the good sort for you).

If YOU feel the need to justify being on the forum then you are affected by pc because that was the original diagnosis given to Linda. However, the truth is that we don't abandon anyone who is in real need and acts reasonably. You can't get out of being a member of this 'web-family' that easily!

Love

Nicki x

Hi Marie,

Very sorry to hear about your sister, Linda. It was sad to hear that the chemo might have been working - this is in keeping with the disease, as it is generally very responsive to chemotherapy. Unfortunately, the chemo is fairly tough going, and as you pointed out, is better tolerated if the person is pretty fit. That is not to say they would not give chemo, as sometimes it is the disease which causes the person to be unwell and weaker. In this scenario, the chemo working on the disease would lead to them feeling a lot better.

Sadly, the chemo also lowers the body's resistance to infection, and this can also be a spin off from the lymphoma. When the body is in this state, it is vulnerable to picking up infections. Because it's own system is compromised, it is unable to fight back with it's normal vigour ie: in a previously healthy person, the body would put up a good fight to the infection. This is when things like swine flu can take hold. The crucial thing is to provide an "artificial" immune system for the body, by giving strong intravenous antibiotics, and keeping them isolated etc...I know it must be very difficult for you knowing that Linda is on life support, and being unable to see her. It may seem difficult for you to imagine this, but people do pull through from things like this. The life support is to rest her lungs and vital organs while they try and get the infection under control. And to monitor things closely. It is still possible to hope for a recovery, Marie. There may be some indicators of improvement -try and discuss this with the Intensive care consultants.

It is fine for you to remain on here Marie. I have posted below the web address for the Lymphoma Association. You may wish to give them a visit. That way, you can choose which site is most helpful to yourself and your situation.

Best wishes,

Jeni.

http://www.lymphomas.org.uk/