In need of answers

What is acceptable?

2011-09-17T02:19:20Z

Been a while since my last blog.

What do you mean only 2 weeks give or take a few days????

Really? Well I guess when I said what a difference a day makes I wasn't joking, just didn't realise it swung both ways!!!

Well first good news dad had his heart surgery (open heart - defibrilator part 2 1st not enough!!!) and all went well (apparently) so two parents that need alot of care although they don't think so! After all cancer, degenerative heart failure hmmm

So phase 1 of family descending today, great they bring help, phase 2 - a brother bringing a girlfriend who has just had keywhole abdominal surgery!!!! Don't get me wrong but WTF!!! MRSA swab for her Thursday he assures me all is fine, I may be wrong but can they say definitively in one day she is clear?!?! PLEASE ADVISE. I have to date 2 parents with open access straight to their hearts and 1 shower!!! Also 3 days after keyhole abdominal surgery he is going to bring her here, just call me Florence!!!

Does that make me sound selfish? Actually scratch that question, to be honest don't care I feel so stretched in day to day life what with caring for my parents, looking after my children, work, keeping two houses clean. cooking, washing, ironing etc for two houses forget Florence call me Cinderella!

Forgot to say pinned down the doctor and mum is too weak for chemo, that and now she is willing herself to depart, if you get my drift, fights with district nurses because they don't know what the Drs or hospital has said regarding her mental well being and hospital! I have never been considered butch but by god I'm wishing my shoulders were alot wider now!!!!

Sorry this is a moan more than a blog but I needed to vent and whoops for those that read this sorry wish I had more positive things to say (I really do) but unfortunately I don't.

So on that note I am going to take my sorry arse to bed and face another day of crap :(

Helen

When should you demand answers?!?!?

2011-09-08T22:05:34Z

Well mum went into hospital today for her hickman line putting in :) treatment will be easier from here on in!

She received her first treatment today - not chemo but a 3 hour radioisotope infusion to help with the pain in her bones.

To be honest I have no idea if or when they will start chemo every time I've asked in the last week they just keep saying they are waiting to know from the big hospital which treatment will suit her best. It's that pesky little voice in my head that keeps shouting at me that they are just kindly fobbing me off because they don't want to tell us that she is too week for chemo :( I hope with all my heart I'm wrong and being paranoid.

Sorry I'm just fighting the fear tonight :'(

Thing is do I pin the Dr down tomorrow and refuse to let him move unless he tells me or do I just let it lie and trust that they know best how to help her. Because right now I have tears streaming down my face and all that keeps going through my head is that 'I want my mum'

the power of a little pill!!!

2011-09-03T02:22:26Z

It's not often you want to rave about something.

Anyone who has read my blog knows my mum recently has been controlled by pain to the extent a normally strong and stubborn woman has been reduced to telling us incessentally that she loves us and apologising for all she is putting us through, that and vomitting!!!

Well yesterday at the consultant appointment he gave us a pescription for hydrocortisone 15mg twice daily (tablet form). Kid you not one tablet last night and one this morning and already her appetite has improved, add to that already she is trying to lessen her pain relief (not letting her yet!) and futher still she is complaing about having to be in bed. Given the fact that the decline in her health over the last month+ it is an absolute rainbow for us even to the extent that today she told us to 'bugger off' when we told her to lie down and rest.

So for all with mets in the bone ask the Drs for this as if it works for the pain it is less confusing/debilitating than increasing morphine and the increase in appetite helps for treatment I cant believe the difference in just a day more energy, less pain and more irritable ;)

Good luck, hugs and best wishes to all

Helen xxx

Appointment with the consultant

2011-09-01T22:02:16Z

Well today was the day when they were going to tell us the treatment plan that had been decided upon.

I say was because the consultant told me he was still waiting for the big training hospital to tell him what and when. The sceptic in me wondered if they were just placating me because mum being stage 4 with mets to liver and bone, and after reading some recent updates where they are doing far less for people with lower stages had me worried.

So next Thursday mum will be going into hospital for an overnight stay to have a hickman line implanted and to receive the first treatment. What treatment? pass didn't want to stay too long as mum is still extremely weak and although we were out for just under 2 hours all of which she spent sat down in the car or in the wheelchair was too much for her. So if what I'm about to say is TMI but when we returned home she started violently retching for about 20 minutes. Bless her though all she bought up was mucus. So not counting todays blip as no food was bought up that is 6 days without vomitting :) Also slowly she is eating more mainly because it is now me feeding her as her arm hurts so much when she moves it that she loses her appetite but the bonus is that when she opens her mouth to tell me she doesn't want any more I'm quicker at moving than she is at talking (which is a first) so I manage to get her to eat a few more bites :)

So once again France thank you we owe you so much. Will post another blog next week thanks for reading

Hugs and best wishes to you all

Helen xxx

what a difference a day makes

2011-08-26T22:18:30Z

Firstly I'd like to thank anyone that takes the time to read this. Having friends asking me how are things going although helpful. Unless they have been in this type of situation I don't feel I can really tell them everything I'm feeling or going through mainly because I feel that I'm burdening them so....

After a couple of rough days worrying about how little she is eating because of the nausea and vomitting she seems to slowly day by day being able to manage to keep food down, which gives me hope about how she will cope through treatment, when that finally gets started!!!

I should by rights be feeling happy. I'd be lying if I say I didn't expect a miracle after the first good day... maybe I expect too much too soon. She is still so tired (understandable) and she is now taking more of the pain relief though that doesn't stop the pain really, then I start thinking what is the differnce to a couple of days ago when she didn't supposedly need this much pain medication. Is she trying to put on a brave face or is it getting worse daily??? I really want to ask her but at the same time I'm not sure I really want to hear the answer.

Ah well I suppose I should just wait and see as like I said before maybe I expect too much too soon.

Rant over thanks for listening

Hugs and best wishes to all

Helen xxx

So before I get myself into a state I guess I should leave this blog update here and wait and see what the coming days bring.

The great escape

2011-08-21T22:24:19Z

Well after the talk with the Drs on Thursday they kept to the bargain and allowed mum home :)

She is unfortunately suffering with nausea. Don't know if its from the meds, tiredness or calcium count in the blood (probably abit of all 3). She is keeping stubborn about the build up drinks and refusing to have them, for now I am letting it go, well for a couple more days anyway. I am going to try again soon to change her mind because 600 calories a day (and not always that when she is being sick) to my way of thinking is not going to give her the energy she needs when she starts with the chemo. So this is something she is just going to have to swallow literally ;)

Tiredness? Check. Pain? Check. Nausea? Check. Constipation? Check Confusion? Double check. She is having some really strange conversations with us lately, when she realises that she is not making sense it is heart breaking to see the confusion and fear in her eyes. On the other hand it does sometimes make us all laugh. Think I am going to get a pad and write them down because then (a) I can post them on here to show that sometimes there are things about this experience that can still make you smile/laugh and (b) so in the hard times ahead it will give my family and I something to remember and bring once again a smile or chuckle into our day.

So now I have offloaded I am going. Thank you all for listening. Till the next time hugs and bestwishes to you all.

Helen xxx

2 weeks on

2011-08-18T22:11:57Z

Well firstly hello to all out there that take the time to read this.

Got to say in the past 2 weeks I have been spending alot of time looking at things on the internet in the hope of finding information and answers - what have I learned well firstly there is alot out there, it doesn't often reassure you, but knowledge is power. Oh and to take the time to absorb and get over the initial shock coz that is the real kicker!!!

2 weeks ago we got the bombshell that mum wasn't suffering from a severe chest infection. For me this came out of the blue. Mainly because she is so good at putting a brave face on things and doesn't like to complain or bother doctors with silly little aches and pains. For that I could throttle her. I am aware that diagnosis for lung cancer often goes undetected for a long time but she has admitted since the diagnosis that she has known for some months (at least 6) that it was quite serious.

Why did she delay with medical help if you ask her it was because she felt embarrased that even though she knew all was not well she was still smoking, I think it goes deeper fear and worry for those around her stopped her getting help too.

Those first few days after the tests awaiting the results were hard, harder still was having to keep it a secret from dad and the rest of the family till we got the results from the biopsies and scans. But today we have answers :- primary lung stage 4 nodes stage 2 and mets stage two sounds technical but here's where all that internet research helped me to understand any cancer that goes elsewhere in the body is automatically a stage 4 and although it has spread it is still basically the same as the primary cancer so they will treat for that and it should in theory help with the other areas. She is going to be starting chemo soon so fingers crossed she reacts well to it.

I have also learnt that although cancer really sucks and is hard for all concerned the more you stress about it takes away some of the strength you need to fight it (and not just for the one who has the cancer) - doesn't mean that It I don't have those times or days when the fear leaves me feeling sick to my stomach or sobbing as quietly as I can in a corner hoping no one hears me but thats when I figuratively give myself a kick up the backside and remind myself that every day is precious and I don't want to waste a single minute of it... if only I had realised all this before without it having to take a disease to teach me this lesson.

So for all of you out there whether you have cancer or have a family member or friend who is fighting this awful disease just remember none of us are alone and there is always someone here willing to lend an ear or shoulder when it's needed.

So thank you all xxxx