My mum

[Dfarmer]

Hi

I have spent a long time reading many of your posts and have finally decided to share ours...

My mum was diagnised on 27th December following a CT scan 2 weeks before that had been requested following a weight loss of 1 stone, loss of appetite and continued unexplained anaemia (even though she was taking iron tablets). My mum had had the call recalling her to the hospital on 21st December, so our Christmas was one filled with worry as we all knew it wasn't going to be good news. The unexplained anaemia was investigated in July with an endoscopy and colonoscopy and the diagnosis was piles!!! Looking back now mum did say she had been having some back pain for a few months and even went to the gp who put it down to her age and her arthritis.

Once she was diagnised I did my research and found out just how awful the disease is

Following the ct scan she had a liver biopsy on 31st December which confirmed the cancer had metasised to the liver. According to the ct scan report there is a mass in the tail of the pancreas measuring 4.5 x 2.3cm and multiple small metastases on the liver and a mass on her spleen measuring 1.5cm.

We met with the oncologist last week and in my mum's words 'he hasn't got much hope for me'. He was a very nice man and answered all of my questions, but I felt that he was not ready to fight for my mum. He said she was borderline for chemo as she is not as active as she should be. She has severe arthritis in both knees and was awaiting a knee replacement before this all started, so her inability to walk is not related to the cancer. She still manages to get about the house and tackle the stairs to use the toilet and she has no other major health concerns and never been ill before now. He also explained that the only chemo offered is Gemcitabine. When I asked about GemCap, which a number of others mention on here he said that the side effects would be too much and the cost would be £800 - £1000 per month (the money isn't a problem as we would manage if it bought her a bit extra time). I felt really disheartened. I also asked about NanoKnife and he said that he doubted it would be performed and they only do CyberKnife on locally advanced. Am I right in thinking that NanoKnife is different to CyberKnife?

Chemo starts tomorrow and I am so worried about how she's going to react. She's 72, but a young 72 and my dad is 83. I just don't know how we're going to manage it if she is poorly with the chemo as I don't want to leave my dad to it, but I have 2 small children of my own (aged 1 and 4). I have 3 brothers and a sister but 3 of them live away so it's just me and my brother sharing it between us. when can Macmillan nurses become involved? Is it only when the end is near?

It is all so hard and I don't know why but I thoguht my mum would go on for a long time - my nan was 84 when she passed away, my mum has 8 sisters all going strong and some late 70s and early 80s and no sign of cancer in her family.

As so many of the posts I have read say this is a cruel, vile disease and I know my mum can't beat it but I know she wants to fight as much as she can - I just don't want her to have a poor quality of life in the meantime. Also, she doesn't know exactly how long she has left - as I've told her nobody knows. The oncologist did say that the Gemcitabine would only give her 2 extra months but she didn't question what the total would be. Does she need to know? I think not but my sister thinks she should. I've been through this with my mother in law before my little girl was born. She asked the doctors of she would last 3 months to see her grandchild and she was told no - she then lasted only 3 weeks. All I can see is my mother in law at the end and how I don't think I can bear to see my amazing mum like that.

Thank you for taklng the time to read.

Dawn

[Dfarmer]

I forgot to say that when we saw the oncologist last week, my mum is no longer anaemic (he thought she'd had a blood transfusion!) and she's put the weight on and more (she's weighing 11stone 9lbs). She's currently taking co-codamol for her knee and some mild back pain, although this back pain was worse yesterday. Other than that she has no other symptoms other than tiredness. I think that's why I'm so worried about the chemo as I'm afraid she's going to feel 100x worse and want to stop the chemo.

[laura]

hi dawn, welcome to us, and sorry you have a problem, a quick reply, sorry!!.

if mum doesnt want to know, then dont tell her, her choice, not your sisters, she doesnt have to live with that knowledge does she?

dont worry too much bout chemo, gemcititabine or gemcap are USUALLY well tolerated.

several on here had this including my hubby

all the best love laura xx

[claralondon]

Dear Dawn

so sorry to read of the difficult times you're going through. Let's start with the Gemcitabine - I would also second Laura's point that it is known for being fairly well tolerated - My Dad is having it as well as capecitabine and I think it's the capecitabine that gives him more issues than the GEM. His main symptoms to date from the chemo are excessive fatigue for about 3 days after the infusion and a bit of sickness but so far (and it is early days for us so I can't be too definite) he has not had the kind of typical chemo issues so many of us dread, so please try not to worry too much - and if Mum does feel rotten, then call up the onco center immediately and more than likely there is something they can do to ease the side effects. Don't suffer in silence basically. Dad had some sickness, he called the onco ward and they told him over the phone to adjust his anti sickness meds and he was soon much better. We are keeping our fingers crossed that that continues.

I also agree with Laura that the 'ticking bomb' approach of being given a time limit is stifling, terrifying and not that helpful for many. After all, with any very serious illness you are likely to 'get your affairs in order' so it's not like you're burying your head in the sand by not having a timeline.

I don't post much - as Dad is a very private person and I don't feel he would want me to share everything about his illness, but please know that I read all the posts every day and if there is any advice I can give I will try my best to do it. All my love to your family. You are not alone and this place is just a wonderful, caring, safe environment for helping us get through it.

[DRAD3]

Hi Dawn

So sorry to hear about your Mum. The fact that she is feeling a little better, has replenished her blood count and gaining weight is a real positive. Be sure to get her pain management sorted - her back pain is probably related to the cancer. As already said, Gemcitabine really is not bad at all - I remember the chemo nurses saying many times how wonderful it was - it does the business without causing many side effects and I think if the doctors are happy to go ahead, I would definitely give it a go. Your mum will be closely monitored and you will feel much better once it has started - as with many things the fear of the unknown is often the worst bit. As far as getting more support - YES macmillan (or equivalent) get involved straight away so get the phone number (from hospital or GP) of your local team and book an appointment today - you cannot have too much support, I promise you (especially as you have a young family to take care of aswell). I always wanted to know timescales, what was happening in great detail but my husband didn't - so I found out as much as I could just so I could support him and be ready for whatever happened but he just took each day as it came - this worked for us - you find what works for you - together as a family but also individually - just remember to respect each other's needs as this can cause problems but I am sure you know this.

Do contact the support team with regards to the nano/cybeknife question - I am sure they can help.

Do let us know how things go and know that you are not alone and we are here for you whenever you need us.

lots of love

Deb

x

[Dfarmer]

Thank you Laura, Clara and deb for your replies. Chemo started yesterday and so far all is ok. It is such a comfort knowing that there are other people going through it all too. I am truly inspired by the stories that I have read and I have felt that I have learnt so much which has helped me ask questions that my mum perhaps doesn't think about. I know that we are just at the start of our chemo journey and it won't always be as smooth as this but while the going's good I want to be hopeful. It is strangely a little relief now that I know there's something in her fighting those little buggers.

Thank you again for replying and sharing your stories

Dawn

[Dfarmer]

Mum's base temp was 35.6 today it's 37. Is this ok or a bit high? Do we need to be phoning onc ward?

Ct scan report has gone to professor and local hospital sending actual ct scan so hoping and praying he says nano knife is an option. I know it's a long shot but got to keep trying.

[DRAD3]

Hi Dawn

So glad that the chemo went OK and that you have found this forum helpful. It was an absolute godsend for me when I was in your position, so I understand how you feel. It is good that things are now moving in the right direction and, as you said, you now feel that the cancer is getting a taste of its own medicine - lets hope the chemo does the business! As for the temperature question, I thought anything above 37 was too high, so 37 is OK. You should have been given some information regarding in what circumstances to ring but in my view, even if you just want to check or get some reassurance, it can't do any harm - out of hours, you would be put through to the on-call oncologist who could advise you, so you are never on your own.

I hope you hear soon about other options but in the meantime let that chemo do its worst (whilst keeping your mum feeling good of course!)

lots of love

Deb

x

[PCUK Nurse Jeni]

Hi Dawn,

A temp of 37 is fine - you need to ring the chemo unit or out of hours number if it is 38 or above.

Make sure your mum does not take paracetamol if she has a high temp. This will mask what is going on inside and, although it will lower the temp, it will not help with the source of it.

Call us if you have any more questions.

Jeni, Support Team.

[Dfarmer]

Hi all

Thanks for the replies. Second chemo yesterday and my birthday too! Couldn't help but keep thinking that this will probably be my last birthday with my mum

Just a couple of questions:

My mum has gone on to Tramadol so that the co-codamol does not mask any fever. She was previously on this for her arthritis but was taken off it as it made her constipated. She Has now been constipated for 3 days even though she is taking Movicol. Any advice?

Also, she seemed to be not herself yesterday and seemed a little confused and sleepy - is this normal? I felt yesterday that this might be the beginning of something... It's so hard to see when she has been doing and feeling so well.

She is still maintaining her appetite and weight. Her blood test results were fine yesterday, although the chemo nurse said one of the levels was up on last week - an alkaline one that she said normally goes up in pancreatic cancer and then levels off??

Thank you to all of you for sharing your stories and making me realise I'm not on my own.

Dawn

[DRAD3]

Hi Dawn

My husband suffered with constipation and used Laxido, which moved things along gently. Not sure how this compares to movicol - perhaps GP can advise but not nice to be constipated so important that you get something that works.

As for being sleepy - this would be totally expected, bearing in mind what is going on - the body needs lots of energy for its daily battle and I would certainly let her body tell her what she needs - sleep is a wonderful medicine. Perhaps mention the confusion to the GP but this may just be related to the fatigue too? Do contact the support team at PCUK if you have any concerns or queries - I know how you begin to notice all the small things and wonder if they are significant or something to be concerned about - a quick phone call to get reassurance can do no harm!

Happy Birthday for yesterday - they do take on new significance now don't they? Precious days.

I hope your Mum goes ok this week and you get your questions answered. Take care and lots of love

Deb

x

[PCUK Nurse Jeni]

Hi there,

Have you checked your mum's temperature?

Just be vigilant in case she is unwell, and the sleepiness is because she has a fever.

Jeni.

[Dfarmer]

Well after some good news that tumour marker reduced after 1st chemo cycle from 90000 to 14500 I now have my dear dad to worry about. He has been recalled to the hospital tomorrow following raised protein markers for prostate cancer... Not sure how much more we can all take.

Mum is doing really well at the moment. Maintaining weight, no jaundice, some tiredness a couple of days after chemo but no other side effects. She only seems to be able to tolerate 2 doses of chemo before blood counts drop so got to see what onc suggests next week. Mother's day was a very special and emotional day for us as I'm sure it was for many of you.

Waiting for professor secretary to call me tomorrow as he is looking the ct scan to see if nano knife is an option so fingers crossed.

I have been keeping up to date with everyone's stories and get such comfort from them so thank you.

[karen17]

Hi Dawn,

So sorry to hear the hear the news about your dear dad. It must be such a worry for you. It seems that your mum is coping well with the chemo and I would be very interested to hear what the reply from Professor will be as it is something that we are planning to look into too.

Take care

Karen

[DRAD3]

Hi Dawn

You are certainly on a roller coaster and I can understand your feeling of being overwhelmed. You are doing amazingly well though, supporting your Mum and now your Dad, with all the worry that involves and the strength it takes. Take good care of yourself won't you - I now how easy it is to forget that when you are constantly thinking about loved ones and what they need. I do hope you get some positive feedback re. the nano knife treatment and I will also keep my fingers crossed that your Mum continues to do well and that your Dad is OK and it is nothing sinister.

lots of love

Deb

x

[Dfarmer]

Well my dad has prostate cancer. I just can't believe it. Back on the treadmill of scan, biopsy, blood tests and oncologist appointments.

[Catherine]

Oh my goodness what a terrible turn of events. I can't imagine the pain you must be in at the moment. I bet you don't know which way to turn. Bless your heart. Sending you a massive hug xxxx

[DRAD3]

I am so sorry Dawn. I don't know what else to say - it is just SO unfair. So wish I could help, take some of this burden away. Know that you have a place where you can understandably rant and we will always be here to listen and offer a collective hug.

Keep strong.

love

Deb

x

[Dfarmer]

Thank you Deb and Karen. Dad had a bone scan today to see if the cancer has spread. I am keeping everything crossed and saying lots of prayers. I get a great comfort from this forum and the 'forum family' so thank you to you all for sharing your stories and thank you for listening.

Dawn

[DRAD3]

Will also keep everything crossed, Dawn.

love

Deb

x

[Dfarmer]

Hi all

Dad's cancer not spread to bones so some good news! Waiting for mum's scan results following 3 cycles of gemcitabine. She has been coping well with the chemo although is suffering with her lower legs which are very red and dry and swollen. I am a little worried as her urine has gone darker which as I understand it means that something is wrong with the liver or gall bladder so I'm guessing the chemo hasn't done as we'd hoped I don't really want to start thinking about the inevitable. I'm dreading the scan results!

I'm waiting for an MRI scan on Wednesday as I have had numbness in my left leg for 2 weeks. Really hoping they're just going to say it's stress related...

Take care everyone xx

[J_T]

Hi Dawn, just catching up with your story. Just wanted to say how very sorry I am that you now hsve the added worry of your dad's illness, this is just so unfair!

Glad to hear your mum is coping well with her chemotherapy regime, hope it all continues in a positive vein.

All the very best to you.

Julia x

[Cathy]

Hi Dawn

Gosh, you poor thing.

My friend's boyfriend was diagnosed with advanced prostate cancer at exactly the same time mine was with advanced PC. My friend's b/f is currently on hormone drugs which he is tolerating really well - no side effects and he is full of energy (doing 2 x 10k runs per week). It is great news your Dad's hasn't spread so hopefully will be "cureable".

My own is also doing really well as well(although the idea to him of running anywhere is anathema to him - nothing to do with the cancer ).

Stress can cause numbness like that so fingers crossed that is what it is.

Lots of love

Cathy xx