My Feisty Mum!!!

[Janp]

Hi Everyone...

I've spent days reading everyone's posts and messages. It has brought me quite a bit of comfort realising that there are others out there going through this too.

My Mum was diagnosed in April with pc and although the consultant told her the operation would not be a success but that if she wanted it and was fit for it she could be operated on. My Mum is such a fighter she wanted it of course. My brother and I were anxious but obviously it was her decision.

As the consultant predicted the tumour could not be removed as it was too close to the major artery.

My Mum's first words when she came around in ICU were "Well, we live to fight another day!"

She has managed to have two sessions of Gem(?)chemo but sadly her platelets were too low to have the third and final session in cycle one.

She has what the doctors have said is cellulitis in her legs which is extremely painful for her. She has just finished her second lot of antibiotics but the pain is getting worse even laying down doesn't help.

I asked for a one to one with her specialist nurse in the clinic who for some reason couldn't keep his eyes open which I found very upsetting. He said he was drained from his last session with a family... I felt a mixture of guilt and anger because it's MY MUM and I need your help. I've got to be careful I'm not transfering my anger at the cancer to him whilst being aware that I want the best treatment and answers for her.

She returns to clinic to see her oncologist in two weeks for bloods and hopefully start another cycle of chemo. The nurse told me at the meeting that if her bloods are still low he may withdraw the treatment. He said I should just be having quality time with her!

Mum still thinks she has a chance so I am dreading that appointment.... Is there anything else they can offer her?

I just don't want to say "Oh ok... I'll take her for an ice cream on the prom now shall I?(As was suggested by the nurse).

I'm sorry I sound so cynical and angry don't I? Mostly I'm a scared 48 yr old who feels like a little girl again whose lost their mum while out shopping...

Reading your posts has been both heartbreaking and so uplifting and I hope I will be able to keep strong and positive through this scary 'stage'.

Thank you all for being so brave to share your stories here...

Jan xxx

[louiepc]

Hi Jan

Sorry to hear about your mum, and welcome to the forum, I hope that you do get comfort, support and also feel that you can vent your anger/fears here too.

I lost my mum to PC in December. My mum wasn't offered an op, but had 3 sessions of Gemcetibine chemo, she too had cellulitus.

First things first. If your mum's blood count is low, why has she not been offered a blood transfusion? This, I think is a fairly common occurence for chemo patients. My mum had 2 transfusions. It really helps, it made my mum not so sleepy.

It is not acceptable for your mum's consultant to be "away with the fairies" when he is discussing your mum, whatever the reason, don't feel guilty, it is your mum, and you need to know exactly what the situ is.

The cellulitus is very painful, and it seems that a heck of a lot of antibiotics are needed to clear it up. My mum had IV antis with her cellulitus and that was better than oral as it got straight to the problem.

You will find, even probably found, that most hospitals are pretty useless, don't put up with any rubbish, don't be brushed off, and unfortunately it seems that you have to be quite forceful, but not rude, to get what your mum needs.

I have had so much support from the forum, this is your online family, who do know exactly how you feel. Take care, you are not alone.

louie xxx

[PCUK Nurse Jeni]

Hi Jan,

Very sorry to hear about some of the issues you had to deal with.

I would like to email you directly, to explain some of these. (I have the address)

Just as a point of information for other readers, platelet transfusions are very rare in such cases, as they are rarely low enough to warrant such intervention. This is often only done in haematological cancers (lymphoma, leukaemia etc...) I think what Louie was referring to was for a low haemoglobin, not low platelets. Yes, for a low HB, a transfusion can be given, which will improve such symptoms as tiredness, energy levels etc....

Kind regards,

Jeni.

[Ella50]

Hi Jan..

Im so sorry to read about your mam. I can understand how your feeling and how quick life can suddenly change..

I lost my mam just a month ago to pc.. My mam was also diagnosed in April this year, with more scans etc throughout May.. im in my 40's and also feel so lost.

My mam was ready to fight, but we were always hit by a brick wall - my mam wasnt offered any op or chemo,, as sadly it had already spread.

Hopfully your mum will get alot more treatment.. everyone is so different..

I know it helps to stay positive.

Just try and get the best care you can and ask for info all the time..

Spend precious time.. This is the most horrific disease, with many ups & downs, if you read my post you will see how brave my mam was.

Take care,

Ella xx

[Janp]

Thank you so much for your replies Louie & Ella....

My Mum was admitted last Tuesday and received two pints of blood. She thought she would only be in overnight but she was discharged on Saturday evening when my brother was visiting her and as soon as she was told she could go she practically flew out in her nightie.

It was very frustrating as when you are admitted there are all kinds of legislation's they stick to which in the big scheme of things didn't make sense. She was getting depressed on the ward as sadly the other patients had various conditions which meant my little chatterbox had no one to pass the time with.

It's her birthday today and she is so worried and anxious that they will withdraw her chemo that she cried in my arms... And that is not like her! I wanted to celebrate her day but this is hanging over her... If it's good news tomorrow we will have another day... Just like the Queen.

I bought her one of those blue mountain cards "The love between Mother & Daughter..." You two know the one's I mean. I stared at them all morning I couldn't write in them. I mean what do you write?

I just told her how much I loved her and how thankful I am that I was chosen to be born to her and that I always try to be as good a mum to my boy.... He will be 21 in September and they have such a special relationship.

I think my mum has just begun to get scared... I think that's the stage she is at? I don't know how fast this will move if they withdraw the chemo (Please God Not tomorrow, not yet).

I'm not sure how to navigate this site yet but I will read your posts tonight and learn from your experiences and probably shed a few tears for your loss.

Bless you both

Jan xxx

Again... Thank you from the bottom of my heart as I feel so lonely and scared sometimes especially as I can't get to sleep at the moment.

[DRAD3]

Oh Jan, my heart goes out to you. Just as you could not find the words for your mum's card, it is difficult for me to know what to say to you. All I can say is that I know how you feel - shocked and angry, scared and frightened for your mum and for yourself and very, very sad. We cry tears for each other every day on this forum and mostly because that is all we can do. Know that you are not alone, that we are here for you, whatever you want or need to say at any time, we will listen and hopefully comfort. If only we could do more. My husband Gary died in April - he, like your Mum, was a fighter - everyone deals with things in their own way, all we can do as their loved ones is to respect their decisions and be by their side so they don't feel alone and tell them every day how much they are loved. Take care of yourself Jan. Love and strength to you, your Mum and your family.

Deb

x

[laura]

hello jan, 2nd attemt, my post got wiped out arghh, though would give you a differant story, my hubby bri had whipple [ unsuccessful ] apr 2010 , tumour wrapped round superior mesenteric vein , smv, couple bypassed done and sewn up!! this was followed by chemo "Gemgap", advised 6 mths ish survival, he had 19 cycles, months, had couple of shrinkages of tumour [ head of pancreas ] No treatment since nov 2011, wait and see now, have scan every 12 weeks, due nx week and meeting with oncologist and team.

we have had Brilliant treatment from our team in cornwall, cant speak high enough of them, we also have a pallative nurse who we see once a month, but shes on the end of the fone, we dont have mac nurses here.

bri is doing really good, gets tired and our life has changed somewhat, creon has been a godsend where food is concerned, he has put 2stone back on, lost over 4 st ,

jan you may have to be FIRM, not rude but let them know you will accept nothing less than the best for mum, Unfortunatley, when bri was admitted once to hosp, with cellulitus and temp, the staff are not au fai with pc etc and if its a assesment ward, things are not quite so good, such a variety of illness and turn over of patients, makes it harder for good quality care, not exscusing it , just how i saw it!

wish you and mum good luck, chin,up try and be positive , look forward to your nx post,

post anytime, someone will answer you, love laura xxx

[rachelqt]

Hi Jan,

Sorry about your mum diagnose. You are at the right place, everyone on this forum is affected in someway with PC, so we all understand the fears and emotions that come with it.

My Dad was diagnosed 11 months ago and has been in and out of hospital like a yoyo! I can understand your mum practally running out in her nightie, my dad has the energy of an olympic athlete when its time to leave. He hates his spells in hospital (there has been quite a few) but it has to be done and we have now accepted its part of the way things are now for him. He does not seem to suffer any pain with his PC but more digestive problems and infections (shakes and low temps).

Its so frightening not knowing what is around the corner. Stay as positive as you can and i hope your mum gets to continue her treatment.

Keep us posted..Takecare Rachel xx

[Janp]

Hi Everyone (Lovely People)

Just to let you know that Mum couldn't have her treatment yesterday. As soon as I picked her up in the morning to take her my heart just sank. She looked and sounded exhausted and was unsteady on her legs. A new thing is her voice... she sounds like she's drugged (she's not on morphine yet) and it doesn't sound like her?

I got her and my Dad up to the hospital and it was painful running around the car getting the both of them out and watching them walk into the hospital (No parking on site).

She got her bloods done and I managed to get her a wheelchair to whizz her around to clinic. I'm getting quite good at wheelchair's now - one handed reverse pulling!

The Prof called her in and she wanted to walk to his room and I could see him taking it all in. She started off linking my arm but then clicked on he was watching her and shrugged me off. Bless her she thought she was doing great.

Then came the Bette Davis routine.... "Yes, I'm eating fine", "No, I'm not particularly tired", "I'm feeling like I'm getting back to my old self today"!!!

Obviously he has seen this all before and in the kindest way possible told her that he felt she was not up to having the chemo today. In fact it would do her more harm. She was devastated and pleaded with him not to take away her 'life line". He explained that this could happen and was normal but she must rest and he will meet her again next Tuesday to see how she is feeling and if he sees an improvement she can have her lifeline.

We now have to try and get her together with her 'baby' brother who was diagnosed with brain tumour's a few weeks ago and sadly could become ill within weeks.

Did anyone else feel exhausted... I mean totally wiped out? I flaked out on the couch for two hours last night. Usually I can snap myself out of it but I'm missing my Pre-PC Mum so much. Does that sound terrible? She won't go out for little trips and doesn't want to see anyone. She keeps saying she's not ready....

I'll have to leave my little oasis of support and do boring stuff like cleaning (That's another thing that's taken a back seat) There are tumble weeds rolling cross the bedroom.

Thank you everyone

Love

Jan xxx

[Ella50]

Hi Jan, I didnt realise how hard I would find replying to your post, is so exact to my mams story.

I think it would be best if I write again soon (before any more tears (what am I like)

Hope your ok,

Thinking of you Love Ella

xx

[Janp]

Hi Ella

I wish I could give you a big hug.. Well I'm sending you a virtual one anyway.It's so hard trying to explain to people when they ask how my mum is... So I don't. I just shrug, pull a face and say "She's on and off the chemo....She's weak but fighting on". Really I want to say "This is a nightmare... This silent monster is sucking the life out of my Mam (I really call her Mam, I was skitted in school for calling her Mam so I call her Mum in certain circles but ..No she's my Mam)and I will call her that from now on. Sucking the life out of her and I can't fight it off. I don't really cry because going back to when the 'professor' first told us what it was and that she had 12 months I started to crumple but she looked at me with THAT LOOK and put a finger up as to say "No" so I didnt. I had such a terrible pain in my chest that night and I've been putting on a face ever since. I think that's why I get so tired.

We never really speak about it and I would like to but I really don't think she believes what is happening to her.

I took her to Sainsbury's for the first time in months last saturday. It took ages she is so unsteady on her feet but she loved it although it totally wiped her out.

She swings from being lovely mam to angry mam quite often. She is becoming very forgetful and can get easily confused and she is fancying the strangest things to eat... Rice puddings, huge cream cakes, pancakes with lemon squeezed on and she has always hated sweet things.

I have had a cold and sore throat so have stayed away for two days but have rang her and she says she is tired and just off to bed so I don't ring in case she's having a sleep but she doesn't ring me then... Vicious circle.

People are so lovely on here I wish we could all meet up.

My 'face' cracked on sunday after a day at the matthew st festival. I hadn't been out for ages had a good few perronis and ammeretos (lethal). When I got home I was fine, went to bed , fell asleep for a bit then sat bolt upright and cried and cried and CRIED!!! It needed to be done.

I'm going to see her tomorrow... Maybe a little wander to Sainsburys... Hope so.

I'm here for you Ella... Keep in touch.

Lot's of love

Jan xxx