My Mum's PC Diagnosis

[HT959]

On April 21 this year my mum was diagnosed with stage IV PC with mets to the liver and possibly her lungs. She originally went into the hospital for keyhole surgery for gallstones - to say her diagnosis was a shock is a complete understatement. My world came crashing down that day, as it did also for my mum, dad and my brother. My mum is only 50, I (her daughter) am only 24. I switch between being utterly distraught and furiously angry at how unfair this all is.

My life since that day has been more difficult and painful than I could imagine. My mum started chemo a few weeks after diagnosis. It hit her hard, and she suffered hugely with sickness even though we were told this wouldn't be an issue. When I was sat in the cancer hospital at 1am, watching my poor mum suffering, the reality of it all hit me like a tonne of bricks.

Fast forward to now, the side effect of sickness is under control and my mum is having more good days than bad. She has lost about 5kg in weight overall (as well as 90% of her hair) but she is still looking healthy and coping well. I think her biggest difficulty is fatigue, she needs a huge amount of sleep to get through the day most of the time but she is managing.

I live about 2 and a half hours away from my parents. This has been extremely difficult. I'm very close to my mum, she truly is my best friend and I can't stand not being there for her 24/7. I did say I would happily quit my job and move home but my mum said this would make her extremely upset and she would much prefer I keep my life together amongst all of this. I go home most weekends now but I feel anxious whenever I'm away from her. Thankfully, my dad has been great through all of this and I know she is well cared for.

I am now trying to navigate this new life we are all leading. On 22 July, I am due to go to Florida for 2 weeks with my partner. When my mum was diagnosed, I just assumed I would of course be cancelling this trip. My mum however has said she really wants me to go and has assured me that nothing drastic will change while I am away. How can she promise that? I would have never believed we would be where we are now 6 months ago.

It's unbelievably difficult to make plans when I have absolutely no idea how long I have with my mum. I can't bear the thought that she might not be here when the day comes for me to get married or have children - I have always just assumed she will be right there with me through the big stuff. The prospect of her not being there makes me not want to do any of these future things that I always assumed I would do. It's just heart breaking; I can't even allow myself to think about it for more than a few seconds otherwise I just wouldn't be able to get through a day. I can't allow myself to think at all about my poor dad and how he is managing all of this.

I'm not sure what I'm hoping to get back by posting my story on here. Hope, perhaps. I try so hard to stay positive but the statistics make it so difficult. If anyone has any experience of how to go on living your life when dealing with this awful situation, that would be welcomed too.

Thanks for taking the time to read this.

H x

[PCUK Nurse Jeni]

Hello HT959,

Thank you for your forum post, and although no one wants to be on here, may I just say welcome to the forums, and i hope you will find it a place of support.

I am so sorry to read of your mum's diagnosis and the story so far, and the challenges you have all had to encounter. Its difficult to come to terms with a diagnosis like this which was so unexpected - and living so far away from your mum of course is not easy for you at such a time.

Your mum sounds amazing, and keen for you to carry on with your plans - if your mum is on chemo, at this stage, she will be in a sort of "rhythm", so to speak, and this is probably why she is saying nothing "drastic" will change. It sounds like her side effects are pretty well controlled, so she will probably just proceed with chemo as per usual. If anything cropped up side effects wise, different to what she is experiencing now, these would be dealt with as per side effect protocols.

It might be that she has a dose delay maybe, if her blood count was low at any stage? But, it seems as though she is coping well from what you have said in your post.

I am sorry that it seems so hard for you to think towards the future HT, and i can appreciate that all of life's milestones, you want your mum at your side. Chemotherapy for this type of cancer is better than we have had previously - I assume she is on Folfirinox considering her age as well? There are other chemo drugs also available, so having options open to her in terms of treatment is important, which is the case right now.

Sometimes, if the person is tolerating the chemo OK, they might carry on with it as long as it works OK, so this is also something to bear in mind.

Other people in similar situations have found it helpful to focus on short term goals, for example, a meal out after a cycle of chemo, a weekend away when chemo finishes, or a family holiday planned for when chemo finishes. Achievable goals also help the person who is on treatment - having something to look forward to.

There is an excellent charity which can help in terms of this, called Something to Look Forward to - their web link is:

https://www.somethingtolookforwardto.org.uk/

Please do take a look.

I wonder whether HT, you might consider some counselling at all, to help you in this time with any questions you might have around the illness, and how to go forward with this diagnosis in your family? I am aware it is not for everyone, so just a suggestion.

Please also feel free to contact us anytime - our details are in the signature below.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[toodotty]

Hi HT,

I haven't had time to post directly to you, but felt I needed to. I am right there with your mum, you do need to also have a life. The diagnosis is terrible, but she is young and given the shocking wait for treatment and the attitude of the Oncologists, it is no wonder that the UK has the worst outcome in the developed world for pancreatic cancer. The fact that your mum has started treatment is good and it hopefully will help her feel better for much longer.

I have had a similar issue with my husband and my 85 year old mother who have not coped at all well. I mum was ringing me 3 or 4 times a day, dropping by and cancelling all her appointments to be on hand, which to be quite frank was exhausting for me. I have persuaded her to take a holiday which she is planning, and because I am looking and feeling better she is a bit more relaxed about things. I also had a long talk with my husband today and I have let me know that I am happy, I accept where I am and I am enjoying pottering around in the garden, reading and other things. I am also encouraging him to get on with his life, there will be time when things will need to be put on hold, but now is not the time. People do live, 1, 2 or 3 years with stage 4 PC, it is a long time to put everything aside. I do not want everyone to be in limbo whilst they wait for me die, I am sure that your mum feels the same way.

toodotty,

[HT959]

Hi Jeni and toodotty

Thank you both so much for your replies.

Jeni - my mum is not on Folfirinox, she is on Gemzar/Abraxane. I have struggled to understand the logic here given her age and general state of health otherwise. My understanding is that Folfirinox has harsher side effects but is more effective. My mum's oncologist only intends to move onto Folfirinox if we do not get the desired results from her current treatment. Surely it makes more sense to do things the other way around. Do you have any insight on this?

toodotty - firstly, I'm sorry you are dealing with this. I do really appreciate you taking to the time to respond. I am trying to avoid doing what your mum did by calling home constantly. It is tempting to try and seek some reassurance as much as possible but I know that it can't be helpful for my mum. She is doing ok at the moment and still keen for me to go on my 2 week holiday so it seems you definitely see things the same. I'm just not sure how I'll feel once I'm there; I have so much anxiety now. Every time my phone rings I feel physically sick because I'm scared something has happened.

I completely agree about the attitude of oncologists. They are so blasé about the situation and some even seem to push towards the decision not to even try treatment and just "accept fate" as such. I think its awful considering as you rightly said, people live for years with this diagnosis. This give up attitude is bound to have an effect on our survival rates.

It's so difficult to keep trying to live normal life but I can see what you mean about being in limbo. It's not healthy. I just wish we were guaranteed at least a certain amount of time - I'm so scared of having regrets and not making the most of whatever time we do have.

H x

[PCUK Nurse Jeni]

Hello H,

The reason the chemo is the way round that it is, is that you cannot have Gem/Abraxane as second line treatment on the NHS presently, so if Folfirinox was not working, your mum would have no otpions left available, other than Gemcitabine, which has not had the same outcomes in clinical trials.

This way, she gets a very good treatment, but still has a very good treatment in "reserve".

I hope this makes sense?

KR,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Kerry]

Good morning H,

I read your post and could relate to so much you say.

My dad was recently diagnosed with stage 4 PC and I felt like the whole world changed that day and if I’m honest it has not, and will never be the same again.

It is totally consuming and like you I am desperate to make the most of the time we have left. All I would say is that some days are better than others and I have made sure I have spoken openly to my dad and allowed my dad to do the same to me. I have always been close to my parents but during the last few weeks this closeness has gone to another level.

You need to try and find a balance of supporting your mum but also try and find something you enjoy that you can do occasionally to take your mind off what’s happening. It’s very hard and it’s always there in the back of your mind - you never forget but if you can manage to not think about it for even a short time it will help you to cope in the long run.

You also need to find someone you can talk to and cry with when it all gets too much. My husband is my rock.

I found speaking to a PC nurse (details on this site) also very helpful.

[patrigib]

My husband was diagnosed stage 4 sept 2014 and given about 6 months to live, so I took a long term leave from my job and spent all my time with him. Meanwhile his only son died of cancer....so we are quite isolated; anyway, my husband is still there, still on chemo ( folfirinox, folfiri, 5 fu maintenance, gemzar and currently taxol).

As a result, I'm now completely isolated from 'true live' even though I started to work 8 months after his diagnosis but half time.

Things are difficult, and I feel completely exhausted, and worse is to come. Just to tell you that you need to take some break, have some fun, otherwise you'll get so tired and depressed, you won't be of any help to your mother. Moreover, it may make her feel guilty. So I would go for the holiday. It's only 2 weeks and she seems ok for someone in her condition. Hope she has many more years. Best wishes

[suzyma61]

My husband Jeff has been in and out of hospital with infections. He has given up on chemotherapy but I feel mentally and physically exhausted. He bounces back after he's had the antibiotics. Lovely to hear that your husband is doing ok.

[HT959]

Thank you all for your replies. I don't know why but it's comforting to read that people really do know what it's like to be in this awful situation.

PCUK Nurse Jeni - that was a really helpful response about the chemo. I hadn't been able to work out why they have done it the way they are but hopefully there is logic to it. It seems people in the US and elsewhere always start on Folfirinox if the patient is strong enough to take it. They have better success rates elsewhere so perhaps we should be following in their steps but I'll take all the help we can get for now.

I am going on my 2 week holiday. Still don't feel comfortable with it at all but my mum is doing really well at the moment with all things considered so at least that is something.

patrigib - Thanks for your reply. I appreciate what you're going through is unbelievably difficult but it gives me great comfort knowing that your husband had the same diagnosis 4 or so years ago and is still fighting.

[PCUK Nurse Dianne]

Dear all,

I really wanted to post more in a 'general manner' here. It is great that you have all found the benefit of belonging to this wonderful 'forum family' and we do appreciate it is so difficult to open your hearts and share these difficult days.

We never underestimate how difficult this journey is for anyone involved, especially patients diagnosed with pancreatic cancer. Our first thoughts are to ensure that patients are receiving the information and care they need, and that families, partners, carers also have access to information and any other guidance throughout the journey.

We also appreciate how difficult this is for partners, carers, family members when you are coping with everyday life, the important role of 'caring' and all else that may be going on for you. Several of you mention the exhaustion that accompanies this, be it physical, mental and emotional exhaustion.

One of the benefits of this forum is having a safe place to share with others who understand you and experiencing some of the difficult days you all have. It is important to look after yourselves and have some 'time out' too as partners or family members. You can also touch base with us, we are good listeners and might be able to offer some thoughts that are supportive for you.

There are a range of services available in local areas that may be helpful if any of you need support or if you feel you need some 'time out' be that 1 hour or more and need some help at these times.

Please do not hesitate to touch base with us at all if we can help, that is one of the many reasons we are here for you.

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

Support phone line: 0808 801 0707

email: nurse@pancreaticcancer.org.uk