Hi Mandy,

I am glad to hear that your Mum's problem was a blood clot and not the cancer.Put this way, that sounds awful! It's not meant to be, but I'm sure that you were relieved to hear this too? Many compare their cancer journeys to a rollercoaster ride because of the ups and downs that we receive along the way.

Your example from Friday to your sister;s visit today, portrays this to a 'T'. I had some real problems liaising with my Mum's doctors when she was dying with secondary breast cancer. I had to travel by plane to see her and did this every weekend without fail. I made 3 different appontments to speak to her doctors, but they never turned up. This was extremely frustrating, so I have some idea of what you are going through.

I hope that between your sister and yourself, you can get hold of your Mum's onologist and determine just exactly what her diagnosis is.

I am glad that you have come to rant tonight - that's what we are here for. I know just how hard this stage is and, I am thinking of and praying for all your family.

Kind regards,

Jolamine xx

Thanks Jolamine!

im having a rough week this week. I’m trying so hard to be positive for mum but I’m exhausted and an emotional wreck. I feel like I’ve already started grieving. 

Thanks for always taking the time to talk with me, it really does feel comforting to have someone listen. To be quite honest I’ve never felt so lonely in my life! :( 

mandy 

Hi Mandy,

I think that when  a family gets a diagnosis like your Mum's the grieving process starts from the first day of diagnosis.You start worrying about how you are going to cope without your Mum and begin to panic about losing her. Our Mums are the one constant in our lives - always there for us through thick and thin and the thought of not having them in our lives any more seems totally abhorrent.

Running back and forth to visit her does exhaust you and there will be 'ups and downs' along the way. We all have bad days, wich are made worse by sleep depravatioon. I would imagine that you're not sleeping well since you heard this sad news? . All the shocks you've had about her health will take their toll too.

You will find the strength to carry on. We all do, somehow or other. I am sorry that you feel so lonely. Now that you've found this site, you need never be lonely again. We are always here for you, whenever you feel like talking.

Is your sister the only family you have?  Do you have any family or friends who you can confide in?

I am sending you huge hugs and hoping that the week impproves as it goes on.

Kind regards,

Jolamine xx

Well. Another loop of the rollercoaster. My sister tried to follow up with the nurses and the chemo team today about this tumour in her pelvis. They all said “what tumour!?!”  They said her notes don’t show anything like this....

I’m a mixture of majorly relieved, angry but also still worried as you don’t know who to believe. Why would a doctor say this if it isn’t true. Did he get his patients mixed up? Or just misread the notes? :( 

Hi Mandy,

This sounds as if the doctor has mixed up his case notes, but this is inexcusable when you consider how worried this simple slip made you and your sister feel, even if it went over your Mum's head. It was just fortunate that she didn't pick up on this.

I think that, given the circumstances, I would be unconvinced like you. Has your sister asked to speak to a doctor - preferably the doctor in question.? I think that I would want to do this while pointing out the effect that ths has had on the family. It won't make any difference to your Mum, but it might make a difference to someone else who might come under the;care' of this doctor..

 I hope that you get a more reassuring reply from the doctor rather than the nurses.

Kind regards,

Jolamine xx

Hi Mandy,

I've just read the question you posted in Ask the Nurses and didn't want to answer there as I'm not a nurse.

You're probably sick to the back teeth of people saying "it depends", so here's what happened to me - this may not happen with your Mum but it is a real life scenario and not a theoretical or hypothetical one! I wa diagnosed with an inoperable stage 4 cancer and underwent chemo as this was my only option apart from doing nothing. I finished chemo and my post chemo CT scan showed that my primary and secondaries had all shrunk - which was better than I'd hoped for.

After a very long debate with my oncologist (I'm a stroppy beggar) we settled on a "watchful waiting regime". I've promised I'll phone for an urgent appointment if I fall ill and I have a CT scan with contrast every six months if I haven't phoned within six months of my last scan. 

Obviously your Mum and her oncologist may agree on something else depending on how things look, but this is one possible scenario.

Good luck and best wishes

Dave

Thank you Dave!

I’m so happy to hear that you are in a good place right now. It is indeed to helpful to hear your situation. I love to hear how people are getting on & I believe that all statistics and info you find on the internet these days are really out of date and not always easily relatable. Hearing real life stories on this forum is a lot better. 

I’m really hoping mum will be able to have a rest from treatment if she can make it though her next 2 chemo cycles ok. I want to take her away for a couple of days in January and just let her get back to “normal” if only for a short while...

Wishing u all the best

Mandy