Well we have had a horrible night. I was hoping that the cough had subsided, I should have known better. I had such a busy day yesterday, catching up with housework as a new cleaner arrives (my usual one has been in a car crash) so I can't leave her as she has never been before. The house is like a Chinese laundry and it's so cold outside I can't even hang them up or they would freeze. By 1.45 pm we go to the tip which is packed so I have to carry everything the full length as needless to say the one we want is right at the other end. Back into town to pay paper bill, run back to car and off to surgery. Finally home by 2.4pm a and I realise I've had nothing to eat! So by ten O'clock I go to bed to read. By two am. The coughing seeps into my brain and I know he's suffering. I put my dressing gown on and pad along the landing, he's hurt his toe again by getting it caught under the base of the bed and the nurse has bound it too tightly. I go down and make a cup of tea, some paracetamol (two for me), re dress his toe, rub some more vick on his chest and he snuggles down. I go back to bed, frozen and my mind in a whirl, is the tumour pressing on his wind pipe again? I toss and turn and have no idea when I fell asleep. I am going to ring our Mc Millan nurse in the morning to see when we get a scan, we have been left in limbo and I'm struggling to cope with the uncertainty.
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It's 12.30 dinner time and I am literally on the edge of tears, which is not like me. I have been awake in the night again, cough, cough, cough. The alarm goes off at seven am. It's cold, wet and miserable and we set off in all the heavy morning traffic, I don't normally feel car sick but today I do. We arrive at James Cook and I threaten him not to move whilst I get a wheelchair. I have a book handy and I will not hesitate to use it around his head if he does. Another two hours sitting in a waiting room hell of legless people and we are back out into the rain, wheel chair returned and I'm soaking wet. We get home and he's trod on his toe again, so I run up and down stairs to get plasters, the new ones get stuck to my thumbs and after three a attempts I revert to the old ones, everything is so difficult. I feel sorry for myself as my plan was to have a day at the Metro center with Mary, but his comfort comes first. I've missed zumba again and feel unfit and neglected. The Mc Millan nurse hasn't rung me back so I'm annoyed at the lack of communication. I am going to sit and slob out on the sofa and watch rubbish TV and hope that tomorrow is a better day!
It's 10.30 pm and after steak and ale pie, a large glass of wine and a vodka and coke (drink, not drugs!) I feel a lot more chilled out. Tomorrow is another day, I know I have to live it and I need to get my happy equilibrium back on track. See you tomorrow.
Up again at 4.0 am he tells me to go back to bed. It's pointless as he's coughing so I can't sleep. Cup of tea and when he gets to the bottom of the cup the tea bag has split and he spits it all over the bed, I was thinking of buying new bedding so that solves that problem. We sleep til 9. 00 am and he rings Steve, back again tomorrow. Were you meeting Mary he asks, well I was, it's not important though he says looking at me, I'm too tired to argue! No news from our dedicated Mc Millan nurses so I call again, ones on permanent leave until March, the other February. So I call the Oncologist secretary. She'll call me back. Hubby comes down in a foul mood and I try to explain what I have done,he loses his rag straight away, why am I interfering, it's all sorted out. I tell him to shut up and listen so instead I get the glare!! The phone rings it's my cousin so I take off into the front room and have a girly chat and moan about the situation. Back in kitchen he tells me he's fed up with this now, really I needed that pointing out like a hole in the head. Phone rings again, he apparently had a scan booked for the 18th December and was put down as a no show. We didn't show because we never received the appointment! So now the ball is back in our court, wait for scan appointment, ring secretary and she'll arrange the Oncologist. So we are now further away than ever, my life is hell at the moment and I can't see it getting better. See you tomorrow.
I know it's not tomorrow but so much has happened today I seem to have lived forty eight hours in twelve. I go to get more plasters and a card for Ella and go to buy new bedding which is in the sale so a bonus. Collect peanuts for birds and new razors because apparently the ones I'd bought wouldn't cut a fly in half, oh well another plan scuppered. I drag everything back to the multi storey car park and the lift is out of order so I have to walk up three flights of stairs, I reach the top and the lift doors open and out walks a guy, I thought they were out of order I say, oh yeah I've been cleaning them and forgot to remove the sign. If the razors were lose I may well have been tempted to use them! Back home our neighbour has come in to show us his new car, hubby is all bonhomie, me not so much!, when he leaves hubby asks for a kiss, no sorry, or you were right, I tell him he doesn't deserve one and go and peg washing out. NOT had any dinner again and off to surgery for 1.30 pm. I'll tell you how that went tomorrow. X
It's 11 am. And we have just returned from the hospital. Today a guy I saw on Wednesday came over to talk to me, he asks if I'm with my husband and we discuss the problems of losing a leg. He lost his aged 26 years and is happy and walking well, I envy his agility compared to hubby. I tell him about the cancer and the problems it's causing. He says goodbye, nice to meet you, then he returns, tells me he's a Christian and asks for hubby's name,I tell him and he says he will pray for him, please do I say we need all the prayers we can take. What a lovely man, he has cheered me up with his thoughtfulness. Back home there is an Amazon parcel, hubby hands it to me, it's the Ed Sheeran, Perfect CD which I had wanted for Christmas but the one I got didn't have this song on it. It's a lovely thought when he is having such a rough time and I appreciate it very much I say. I go to change the bedding for the new one I bought yesterday and there is only one pillowcase, so another spanner thrown in the works I now have to pack everything back up and go out again, talk about swings and roundabouts ! When we saw the nurse yesterday she's not happy with him, Doctor being brought in on Mondays visit. Folic acid given for low blood and told to eat spinach, he's never eaten spinach in his life!! Daughter rings later about the lack of communication from the hospital and her hubby shouts, give him guiness instead, I have a feeling that will go down better than spinach. See you tomorrow.
We seem to be having better nights but the patching up of his wounds gets longer. He tells me he is like a parcel, I say I'm going to send him by Amazon but they will send him back as he is badly packaged! I go into town for some retail therapy and some fresh air. He drops me off and I try the sale in M & S. It's a nightmare of people scrabbling for tatty clothes and queues a mile long, so I leave and walk to the coffee shop for some lunch. In there I am surrounded by people shouting into mobile phones so my plan to read the newspaper and chill out is spoilt. Someone sits so close to my chair the lady owner comes and shifts my table further down which was very nice of her but I have to move my coat, bag and shopping to not leave it stranded. I'm not really enjoying myself and just want to go home!! Back home we have ham and egg pie and a home made beef curry for tea to get some protein into him. Four cans of Guinness are purchased but at five pounds fifty it's a lot more expensive than spinach. Staying warm for the rest of the day.
So left over beef curry and guiness for tea! Someone at James Cook recommended a bath liquid to heal his wounds so I dutifully go and buy some, everything is so expensive, £7.30, I Have never spent that much on bath liquid for any of us, but if it helps then it's worth it! (No it's not by L'Oréal ) We sit and order some padded underpants (didn't even know they existed) it was just something I thought of, so we looked on Amazon and lo and behold they exist. They have just arrived and look very good. So back to his bath last night, he was up there for two hours soaking in his new liquid, what we had forgotten though is it makes the bath slippery, so getting him out was a nightmare and he ended up hurting his thumb, (at least it wasn't the toe again!). We leave thee dressings off so he can let some air at them. My sister in law calls and I tell her the last few weeks have been a nightmare. She says I should complain about not having Mc Millan nurses and the fact his important scan was missed, but to be honest I just don't have the fight in me. This is unusual as I would normally fight all the injustices but you have to pick your fights and I can't see the point when there is nothing we can do about it. Well we will see what the Doctor has to say tomorrow. See you tomorrow. Caz.
He's coughing again and as I have earache and a sore throat myself, it's killing my head. I look pale and he looks even worse! How I have managed to stay well over the past year is a miracle, I think it's bloody mindedness as if anything happened to me,as he says we would be in dire straits. We attend the surgery again, not happy with hole in his groin, Doctor comes in and says he needs a sugar test. Well that should come out fine after eight sugared cups of f tea a day, no water drunk unless I tell him, he should at least be responsible for himself in some ways! Our daughter face times as it is Ella's fifth birthday, he coughs all the way through it and I have to stand back as far as I can because it is now a hacking sound. Ella apparently thought she would get as many presents as she did at Xmas, and is slightly disappointed that there are not as many, and she's only five. I am now sat munching an iced doughnut along with two paracetamol for my head. Early tea, feet up and Corrie, I'm glad not to be seeing anyone! !!+
So I set about getting tea ready, chopping mushrooms, tomatoes, bacon on grill and all the time hubby s moaning about what the nurse had just done, so I'm coping with Top Gear at 90 decibels on the TV, the cookerr fan going amd him moaning! He suddenly demands that I take off the plaster in his crotch, so I'm suddenly shown a hairy crotch with a plaster stuck to it like **** on a shovel, as my Grandma would say! How much worse can this get? Nothing is healing, we have no scan date, his cough is horrible to hear amd everything that is being done for him is questioned, altered or I'm made to do it again. I grab a glass of wine and retired to my front room where I can listen to the programme at a normal volume!! I go to bed at 10pm and read but he's up at 2.00 am, 5.00 am, and in between that someone is scraping frost off their car outside at 6.30. I am determined to get to zumba so I make him go back to bed and escape!! It's so nice to see friends again and laugh, people are kind but they don't want you moaning all the time. We have a little ride out for a couple of hours, him in his padded pants and new spectacles that have just been done, it's a pity they don't have built in hearing aids, it would make life a lot easier