We are Macmillan. Cancer Support
So, four weeks ago my Mum is sent into hospital for observation (breathless and dizzy) after going backwards and forwards to the doctors for some time...while she is in over the weekend, my dad, who likes a pint or two it has to be said and is a long term emphysema sufferer, manages to give himself severe food poisoning, passing out and fracturing his skull in three places. Obviously they couldn't be in the same hospital, that would be far too convenient... after ten days of travelling backwards and forwards between the hospitals they send him home with instructions that he's not to be left on his own and continue with the tests on Mum. He is a right old state and the following week Mum is diagnosed with mesolthelioma....anyway, cut to the chase, after nearly a month in hospital we get Mum home and as comfortable as she can be, trying to build her up, Dad is like he's had the rug taken from under him, is still suffering from blinding headaches so I call the GP out to have a look at him. The GP turns up while I'm not there (brother on parent sitting duties) and says that Mum has to go straight back into hospital as her breathing is poor. No shit sherlock, she;s got Mesothelioma! I ask if I can take her in the car....no I have to wait 5 hours for an ambulance, eventually having to call 999. Obviously we're all panicking by now, Mums breathing is really bad and our stress levels are going through the roof - get her into hospital, start all the blood taking malarky that goes with being sent in as an emergency....I keep saying to the doctors/nurses - we know what she's got, sticking an oxygen mask on her won't help. She's still got all the bruises from last week's blood letting....Thank the lord her consultant from the previous week was on emergency duty and came to see her before any more tests were carried out. My Mum has precious little time left and to waste a whole day fannying around in hospital because the GP couldn't tell the difference between fluid on the lungs and a tumor despite having read all the discharge papers is annoying to say the least. Well, that was cathartic.
OK I was a little bit off one one last night but we eventually got Mum back out of hospital this morning after much tooing and froing...it's such a palavar, have to wait to see the doctor, have to wait to get your medication, they say you can go at 10.00 and the prescription doesn't arrive 'till 4.00 etc etc...anyone reading this will know how it goes..fortunately we didn't have to wait for an ambulance to bring her home. The worry is you NEVER know if they're gonna catch some godawful bug while they're in hospital, yeah right, like there's something even worse than mesothelioma. ... anyhow the GP actually rang me today to apologise for not realising the severity of her case. I was very gracious (didn't actually call him a fuckwit out loud) and said that it was ok as we were all learning together - I thought I handled it all quite well in retrospect. I don't think he'll argue with me again if I say I'm ringing her key worker before dragging her into hospital in an ambulance. Tomorrow will be a bundle of laughs, I have to take Dad back to hospital for more brain scans and then I get to take him round tesco shopping (highlight of the week). The upside is that Mum is now on repeat prescription for liquid morphine and I don't think that the (now thoroughly castrated GP) will be monitoring the intake too closely so forgive me if I just share this bottle with my brother and take some time out.
....and another five hours spent randomly waiting for something to happen in hospital...do you think your father might be suffering from depression, says the brain trauma specialist....where do they get these people from....quite obviously slowly dying from emphysema while your wife has just been diagnosed with mesothelioma is an every day occurence for most people. I may survive, but my liver is in doubt. Anyway, the good news is that the skull fractures are healing nicely and I didn't get a parking ticket whilst being illegally parked in the building site that is currently masquerading as our local caring hospital
I know It shouldn't make me smile but your description of the hospital staff and their questions did remind me of some we have been asked - my partner was diagnosed aged 47 with meso and he often gets asked about if he is finds it upsetting by non- specialists!
My liver is just about surviving the strain of dealing with hospital protocol. Luckily we now have a great team in place , with two exceptional oncology nurses assigned to us, but whenever circumstances lead us to stray away from this team into the general hospital environment stress levels increase exponentially.
It doesn't take much experience of dealing with meso for you to know about it than the general clinical profession and I think they find this difficult to believe.
Good luck with your mum and dad
many thanks for your input Amanda, today has been a really good day - my newly pregnant daughter turned up with just the medicine we need - the start of the next generation! Unfortunately on the flip side, I thought my Dad might benefit from a dose of night nurse last night, to help him sleep - well, yes, maybe I should have read the label with the warning for asthmatics, but honestly I really didn't mean to send him right over the edge. He picked up his new glasses today (the first ones he's had specifically for him - he usually wears dead relatives glasses) and he is amazed at the difference it makes. I can't believe how positive he suddenly is... Mum is doing some yoga excercises (none that I have ever seen before, but they seem to be working for her which is all that matters). This afternoon sometime, my Uncle arrives from Australia to join in the general merriment and mayhem, and I have promised to make Sunday Lunch for the whole family at my parents house. It won't surprise anyone to learn that my parents ancient gas cooker was liberated from a derelict house by my Dad and my Brother many years ago and the oven is held together by means of a couple of screws and some hasp latches. It has to be opened and closed with the aid of a hammer. My husband is a saint.
......and breathe, Today I took my Mum to do some Tai Chi...I think it was quite beneficial, not as beneficial as the several large Bombay Sapphires I had afterwards. I was trying to set up some continuing healthcare program for them today, and the occupational therapist came round and said....'.oo yes , clearly they're entitled to help...someone to come and do their breakfast, and make sure they get up out of bed in the morning and so on, help with the cleaning'...Oh no.....said the rents.....our son and daughter do all that for us...Yeah, thanks for that. Perhaps I can get someone to come and clean my house, while I'm cleaning theirs? Just kill me now. :(
Hi there, having read your posts and especially the latest we can so relate to what you've said. My partners dad has been offered help with everything only to turn round and say no it's ok the family do it all, this includes even emptying a commode!! the thing he has at the moment is he likes to go in the car, not anywhere specific, just out so he isn't stuck in the house. So off we go on the road to nowhere once sometimes twice a day best bit is they offered to take him out to a day centre once a week to meet people and basically have a day out more than anything, his answer was i'll think about it. Don't get me wrong we would do anything for him but at the moment it feels like our life is revolving around him and him alone and ours has been put on hold. There is no more that can be done for him and considering he was diagnosed June 2010 he has and still is fighting although we know in the end he will lose this battle. Maybe ther should be a day centre were just the family/carers can go, we could all get waited on and have a day of pampering before returning back to reality with a bump :-)
I’m not sure I should say this after all you are dealing with, but I do love your posts. Unfortunately we are the end of this journey as my Mum passed away in October 2011 after being diagnosed in June 2011. Like you I was dealing with two sick elderly parents – Mum obviously terminally ill and a dad who had never really recovered from a stroke he had a few years earlier. You latest post about the cleaning really made me smile as I did the cleaning at my parent’s house while mine looked like a tip. Eventually I persuaded Mum to employ a cleaner but she really wasn’t keen!
I hope writing your posts helps you through this difficult time. I’m sure they are making otherssmile as they recognise the different things you are describing.
Oh, thank you for your kind words of support - I find it really beneficial to come on here and 'say it how it is' without the fear of sounding hard and uncaring... I dare say that we will be able to get into some form of routine, but we're just all learning together at the moment, and of course the rest of family life doesn't get put on hold just because of this horrible illness. People coping with such levels of stress appear (to me) to be super human - I know that other friends and family think that my brother and I are doing wonderfully well, but inside, we're both falling apart, and having to rebuild our lives the only way we can.....I'm having a day off today.
It's Mum's 80th birthday next Tuesday and I came up with a really brilliant idea for her birthday present (well, I think it's brilliant - it may well backfire). Since my lovely daughter is having her first baby in September, I've bought Mum a cross stitch kit baby blanket thing with Beatrix Potter illustrations on it ....I thought that she and I could do it together in time for the baby. We are going to have a small celebration at a local restaurant with immediate local family on the day, and my children (who are all living away) will come the following weekend for another celebration - I'm thinking small events, spaced out. I wanted Dad to buy a dish washer, but he flatly refused...he's obviously on the mend, because he got quite feisty about it. I can tell that I've had a day off because I'm feeling quite calm, but I'm just about to go and get my instructions for the day, although it's actually nice to have them both at home today with no hospital appointments since I cancelled Dad's colonoscopy. ..
Things are starting to settle into a routine now and yesterday was a really good day. Mum decided that she wanted to come and visit us as she hasn't been since she was diagnosed. We are currently living in a tiny little holiday bungalow (so as to be nearby) and she really loves it. My brother brought her round at about 11 (giving me half an hour to frantically rush around and stuff everything in the spare bedroom). The weather was beautiful and what luck, there was a bottle of chamagne in the fridge! We live near a cliff top overlooking one of her favourite bays and she was determined to make it to the top of the cliff to enjoy the view, so well fortified with a glass of fizz, we set off - it's normally a two minute walk (if that), but I tell you Chris Bonnngton never expended as much energy as Mum did yesterday...her brother turned up to join the merry band and with tiny steps and lots of rests she made it. Our kindly neighbours had put a bench at the top of the cliff, so we were all able to sit and appreciate the view. She was completely exhausted when we got back, so I got her into bed for a lie down - overlooking the garden with all the spring bulbs coming up it really did look a picture. While she was resting two of our grown up children turned up and I was really going to have to stretch the chicken (which had originally been intended for two) to cater for the current party of 6. Sherry wine and beer now flowing - Mum slumbered on I peeled a vat full of potatoes and Mum's brother and the children decided that they would light a fire in the garden in an old wood burner as despite the sunshine it was still a little chilly. The next door neighbours were also outside enjoying the fine weather and there was a real party atmosphere kicking off. Eventually the racket coming from the high jinx in the garden woke mum up and we were all ready for (a very late) lunch....mostly consisting of mash, roast potatoes, cabbage, leeks and gravy, with a small accompaniment of roast chicken........and then the electricity went out! Not just us, the entire row of chalets - fortunately we're all used to that and with all wood burners going strong we were able to continue our lunch picnic style, and even Mum manged to eat a rather good dinner. As we'd all had far too much to drink I blew £40 on a taxi to send them all home ..Mum, Uncle and the two grown up children, and it was money well spent after a really enjoyable and sponteneous day, one for the memory bank!
Oh Donna - I will be thinking of you on Tuesday, five weeks is so little time to say goodbye properly, enjoy your Dad while you still have him, maybe he will have some good news soon ....... Mum is deteriorating quite quckly but we really hope to keep her going until September to see the new baby. I am trying to make the most of every day that we have. Mum and I laugh a lot, but my Father and Brother are finding it so difficult, I don't know, is it a 'man' thing? I have managed to get hold of a wheel chair now - I was surprised at how quickly Mum went from being able to walk, to not being able to walk...all in the space of a couple of days - I tell her it's the mixture of morphine and sherry! Tomorrow I'm going to give her a real treat and wheel her around LIDL's. The price of alcohol there - it would be rude not to.
Love to all xxx
yeah, well, it's all a bit shit now really - I didn't expect my Mum to deteriorate so quickly, it's taken my breath away (no pun intended)...I really felt that I needed to contact my key worker, but she's been away for the last two weeks (what with it being Easter 'n' all) and my Brother is still out in Australia. Stupid thing that has really made me cry like a baby.....I bought a cross stitch embroidery sampler thing for my Mum and I to do for the arrival of the new baby in September...I started it off and we sat there today to do a couple of letters of the alphabet.... it was so hopeless, my Mum used to me such a good needlewoman, and now I don't know whether to unpick what she's done or to leave it because she's done it. It's breaking my heart and I can't show anyone because I'm supposed to be the strong one.
If you have any questions about Macmillan we would love to hear from you
You can also follow us on Facebook, Twitter, Flickr or YouTube.
© Macmillan Cancer Support 2015
what are these?