Cancervive diary
The Big C01 june 2009
hospital again....visiting....
Phew these visiting times never end. We don't have much time to do anything before it all starts again. No time to eat, just feed the kitties and go again to the hospital. Even when we come back it's feed the kitties and then bed. Absolutely shattered.
My Achilles has been playing up again and also my face hurts. Don't laugh but John calls it faceache when it happens. I hope that's all he means anyway!
It's really painful, so much so that it comes on day 1, gets worse on day 2 and I have to have a hot water bottle and painkillers all day and night, the same on day 3, then it goes a bit on day 4.
Have to ask Dentist if anything has changed since I last went with the horrendous pain. Also if he can't see anything I'm just remembering what the Oncology Registrar said so there is that to bear in mind too.
03 june 2009
hospital again...for john.....
We're off to the same hospital Mum is in again, for John this time. I'm going with him and seeing what this Consultant is like. He said this Consultant isn't nice and he wasn't wrong there.
Our appointment was 9.15am - he didn't even arrive until 9.45am!!!!! Not even in the hospital. How bad is that!
Anyway he comes into the room in scrubs, with some papers under his arm and stands there all superior like. He said "Why is it not in compression?" and John answers with "Dr XYZ said it shouldn't be and he wants it left as open as possible". To this he replies "Well I don't see the point in me seeing you and Dr XYZ, perhaps you need to just see him and see what he says". At this stage I was silently going "Yes, Yes, Yes" as he wasn't nice at all! Mind you when the Nurses went out that is exactly what John said out loud....says it all really doesn't it!
I even asked a couple of questions and he totally blanked me, the poor little woman is not allowed to talk to the big strong clever man then!!!! Pah humbug! Or words to that effect!!!!
We're both pleased about that....not seeing him anymore. The other Doc is so much better from what I've seen!
04 june 2009
exam in london (greenwich)
No, not for me, but John. He's been doing a course through work and his exam is in London. It's going to be hard sitting there for hours on end but he has to do it. I was going to go but it means sitting outside for hours on my own. Decided otherwise!
I'm getting a lift in with a friend of ours to the hospital - she volunteers there and it means it's easier to get there for me. Also if John comes home about 7.30'ish it means I can get a lift back too! Yippee!!!
05 june 2009
things a bit hazy.....getting confused....
Yep, not sure which day is what but today Auntie Rita was going in the afternoon and we would go in the evening to visit. However at about 2.30pm we had a phone call saying Mum was coming out. No idea of how....so we assumed we'd have to go in and get her. Nightmare...was planning on her not coming out till Monday or Tuesday....now it would be getting worse, as others have told me. I've already told her....she's not having a bell...!!!!
We said we'd be going out at the weekend as we arrived home with Mum and she said she'd go so that's a good sign. She's walking quite well now but slowly.
We got to know quite a few of the different ladies in the ward, one sad and shocking thing with one of them was this though. I won't use names of course but this just goes to show that this is STILL HAPPENING TODAY when it shouldn't be!!!!
An old lady of 84 (I think that was her age) came in for a shoulder op. She lived on her own, but had visitors some evenings. One morning after her op, the Doctors all came in and pulled the curtains round the bed. The next thing was she was being told "you have breast cancer Mrs X" and then they all left. Now how disgusting is that in this day and age???
What with the training the Doctors are supposed to get at giving bad news, it shouldn't be like this, specially for an old lady on her own. They gave her no information, no one came to see if she was OK, luckily the lady in the bed next to Mum went over to her and sat with her for an hour and chatted to her.
How bad is that? So despite all the training and courses, they are still as bad as they used to be in some cases. Not everyone has a Nurse by their side when they're told and a room they can go to so that they can take it all in.
It might be 'matter of fact and happens daily' in their wards, but to that ONE person it can be a life changing event. Something that you never forget, the words always in your head. When you're feeling low or down, it comes back to you, all the bad things do. It's human nature.
Of course, the other thing humans do, is to care. Especially the medical profession - the caring profession. I'm not having a go at everyone there, just the few who don't seem to care as much as they should for patients.
I sure wasn't told in a good way. I was told I had Non Hodgkins Lymphoma and it was aggresive and malignant and then out the door in 10 minutes. At that stage I had to ask if Malignant was bad!!!!
It's still as scary today as it's always been for some people, sadly.
08 june 2009
my poor little old man......
Yes, poor little Bertie is having to go to the vets again. Since he had an operation for his partial colon removal then a full colon removal afterwards when it failed to work he has suffered with digestion problems. It's not nice for him and is painful. Luckily after all these years I now know the signs and could see it happening again.
So an appointment was made and we took him to the Vet's again. They sorted him out again and I came out £80 lighter in the purse department!!!! Lucky old me.
Poor Bertie though, he's lost weight again, 4 kilos almost which is a lot for a cat. He'd lost weight last time too. She said to try giving him more food - he gets four pouches a day now! It's gonna cost even more now, but he has to have it poor little man.
If he doesn't put weight on, they want him to come in and have more tests - it could be an underlying problem. After his inpatient attendance at Christmas he had tests then and his kidneys and everything else was OK. Still like humans it can change.
So now he's having more food, although he's not always hungry. I think the arthritis is also playing him up too and he limps (seems to be a pre-requisite in this house!). I can't give him tablets to help as he spits them out. Does anyone know of anything you can put in their food which might help him?
He looks at me as if to say "Can't you do something to help me Mum? Please????" and I feel so awful. All I can do at the moment is make sure he is OK and doesn't have to exert too much. I was thinking of getting a ramp for his favourite chair - but when we made one before when he had his operations, he didin't use them! Typical cat huh! I've made a temporary one though but haven't seen him use it yet.
You try to make life easier and they ignore it. So if anyone knows of a liquid that can be put on their food - please let me know. I want to help him and feel so helpless when he looks at me with those big pleading eyes :-(
10 june 2009
blood test for john....at the hospital where mum is...!
As it's in the morning though, we can't go and see her. So we had a nice coffee (and a cake but don't tell the Doctors!!!) in the League of Friends Cafe. They do great Eccles cakes if you're ever there!!! :-)
11 june 2009
physiotherapy for mum
Hospital transport for Mum arrived, but you'll never guess what?!?!?! They had us down as the wrong hospital...!!!! There are two in the trust and they had us down for the other one despite me saying which one it was and repeating it!!!! Amazing huh!
So it's not just me, it's just us!!!
Anyway, after picking up three other patients, and then dropping them at the hospital we were scheduled to go to, we then had to go to the other hospital.
I was sitting in the front of the ambulance (multiseat one) and I was feeling really ill! I've never had to ask for a sick bowl before on a journey (come close, but that's all) but I was just going to ask and then I knew we would be arriving soon so I tried to breath in slowly and get some air. Phew that was horrible!
We were taken right to the door by this ambulance driver which was nice and he booked Mum in, and whilst walking down the corridor we saw one of the ladies from Rheumatology and she asked how John was doing. I said not too well actually and we had a nice chat.
Mum was waiting for her turn to arrive, so we read trashy magazines (as you do!) and then her name was called. I didn't go into the 'curtained off room' with her but heard what was said. She told them she hadn't had an exercise sheet, but she had!
Also she didn't get out of the chair as they showed her how to and the Physio spotted that, they don't miss a thing do they!
So she was told it was going to be hard on her, but it had to be done and they took her through some exercises to strengthen the muscles and get the knee moving again.
Actually she was walking better in hospital than she is now but I suppose you tend to sit around more at home than they allow in hospitals!
She was then given another exercise sheet and an appointment was made for next time. I was asked if I came with her and on replying "Yes" was told that I probably wouldn't be allowed next time. I understand this as patients are more important than escorts, but as it was her first time and she's a bit confused about things at times it was best I went.
We were told when transport bought us in, that as we were booked at the wrong hospital we might not have transport to get us home...argghhh!!! However the lady at the desk phoned them and said we could have transport home but it would be a 2 hour wait. Never mind, at least we'd be getting home!
So off I toddled to the cafe to get a sandwich and a drink (left Mum outside Rheumatology!). It was strange being there as a 'non patient' for a change!
13 june 2009
hospital appointment with john (on a saturday!)
Yes, a Saturdday appointment! We had to phone to make sure it wasn't a typo to start with and were told it was correct, a Saturday appointment.
So off we toddled at 5pm to the hospital. We had to walk around another detour as Outpatients was being "refurbished". It took us a while and we needed a rest when we got there. It was so strange walking through an empty hospital, mind you, it was well sign posted - shame the normal clinics aren't as well signed sometimes!
Now the problem started. Although his name was on the list (they hadn't cancelled the appointment as they were told which worked in our favour!) the Doctor wasn't his normal one and he said he couldn't do much.
What he did do was good though - he made an appointment for John to see Dr K on the following Monday (double booked) but the only way to do it. So there was some good news too. He said he could see it was infected by the size of his leg and didn't want to interfere with the normal Doctors treatment on it.
15 june 2009
hospital and dentist in one day
John went to see Dr K at the hospital. He was surprised to see us but understood when he saw John's leg. He has now told John he needs intensive rest for his leg to start healing and has given him a letter for the GP to do a sick certificate. At last, something might start to happen now. He can't rest it when working as it is down all day and this is what it needs.
I also went to the Dentist. I've been getting these serious pains in my mouth - I've had it checked for root canal as I've had one of those before and it wasn't that. It wasn't a problem with the tooth either. He has suggested I see the Hygienist as it might be a gum problem, failing that he has suggested I go back to the Oncologist, given my health problems to date! Oh well, here we go again!
18 june 2009
physio no.2 for mum
Well it was right and I wasn't allowed to go this time. We made sure she had a 'survival bag' with her though just in case she needed something! You never know with transport and hospitals as I know only too well...!
19 june 2009
lymphoedema clinic, uch, london
Wow, don't these appointments come around quick! I couldn't wear my black stockings in this hot weather, so had to resort to an older pair. Not quite the right fit but OK.
I was asked beforehand as there was a Trainee Nurse there if I would mind. "Not this time I think" I said...then looked at her face and said "Yes, that's OK - I don't mind" and we smiled. I was only joking. The more people that learn about this the better it is for patients in the long run.
I had a long appointment as she explained all things "Lymphoedema" - I'm doing some things right which I know and I also admitted to scratching the top of my leg when I got so warm in the hot weather and the stockings made me itch at the seams. I also knew I'd get told off about it as you're not supposed to get any infections from open wounds. Naughty me huh.
A new pair of stockings were ordered in the same material but a different colour for the summer months. That would be good. I don't think black stockings are a good idea for hot summer weather do you?!
Whilst there I also made an appointment to see Dr C about my mouth. I didn't expect a very quick appointment so was surprised when Pauline told me next Thursday!!! I didn't mind, at least it would mean I could get to see the Doctor quick and start things moving on what this problem is with my mouth. Have to see if I can book the transport that quick, normally need 7 days notice. Keep your fingers crossed.
John calls me 'faceache' but no comments about that please!!!!
23 june 2009
hygientist at dentist...
I was hoping this appointment was going to solve all my pain problems, but....it didn't. She said my teeth were in good condition and there isn't much she can do. I told her about the pain and problems and she had a good look but found nothing.
Again, she said with health history I should get it checked out by Oncologist. Good job I'd made an appointment then.
So that was £41 with not much to show for it. John said they didn't look any different from when I went in.....great!
I could do more with that £41 than spent it on something not even noticed. Still at least it put another tick in the box that it wasn't the gums that are the problem with the mouth.
24 june 2009
oops!
Yes, I forgot to take my morphine last night. What with Mum and John not well, me neither and poor Bertie not looking too good either. If he doesn't get better on his pins I'm going to take him to the Vets to see if there is anything else I can do to help him.
Poor little man looks so lost and wants me to do something and there's not a lot I can do at the moment for him. If I could I would, without question, that's a given!
To encourage him to eat something I got some cod fillet from the freezer I'd got for him previously and he didn't want all of it. I tried to cut it and guess what this bozo did. Yep, I cut the top off my knuckle!!! Blood everywhere and I had to get John (First Aider) to come to my rescue and help me. It is SOOOO sore. That was with me being careful too. Doh!
25 june 2009
lymphoma clinic, uch
Whilst sorting out the cats breakfast normally Bertie and Domi come wandering in and are sometimes vocal (Domi usually, Bertie just sits and waits patiently bless!). Domi came in but no Bertie. I went to see where he was and he was in the litter box, but poor little fella was having his stomach problems again.
I said to John that he needs to go to the Vet, so I made an appointment and John would take him. I had to explain what he's been like lately as John doesn't feed them as he has to do his leg early to get it cleaned and dressed and it takes about an hour or more sometimes. I said if they need to keep him in for tests, then I would trust his judgement on it.
Transport arrived...and early! It was 9.45am and my appointment wasn't until 12.40 but at least I was on my way.I was the only person in the ambulance and the guy said he would be taking me home too so that was good news. At least when you know that it's not going to mean a lonnnnggggg wait to go home hopefully!
Not the same with the clinic though! They kept updating the boards saying how late all the clinics were running. Mine started at 45 mins late, then went to 1 hour, then 1 hour and 15 minutes!!!
Transport came up and checked and I said I hadn't even seen a Doctor yet and clinic was 1 hour and 15 minutes late already. He went back downstairs again and said he would be waiting...phew.
So now it was 2 hours of waiting and still no sign of seeing the Doctor, or any Doctor come to that. I went to the desk and said "I'm not complaining, but am a transport patient and have been waiting two hours already, do you know if I'm anywhere near the top of the list yet?".
The lady went down to the Consulting Rooms and when she came back she said my notes were the only ones in the basket so I said "Oh, I might be in with a chance then!" with a smile on my face. "Yes maybe" she said! At least others in the waiting room smiled too!
Finally, after 2 and a bit hours, I got called by the Doctor....wahooo!!!!
He asked how things were and I told him about my mouth. He asked me lots of questions and about my symptoms before, but I had none so couldn't gauge if there were any this time. For instance, is it night sweats I'm having or is it just because it is too hot to sleep??? Who knows when you haven't had them before. I sure don't!
I was given a full examination and then he checked my mouth out as well. He said he would be sending me for a full body "PET and CT scan" to check things. At least we will find out one way or another what is going on with a full scan being done. Then we can take things from there.
So I came out and then had to queue again to book my 'results' appointment and get transport home.
When the guy came to collect me, it wasn't the same one and he had 3 people in the car already. It was going to be 'cosy' on the way home then. I request a front seat for more leg room, specially with the cramps I've been getting.
However this guy put me in the back seat and I didn't like to say anything. It was a tight squeeze with us in the back of a small car, and I had some leg pains on the way back. The lady next to me asked if I was OK and I said I get cramps and need to move my legs and if cramp happened I'd have to get him to stop on the motorway so I could get out. It kills me when it happens. I had a few twinges but managed to keep them at bay until we dropped one person off and I could move my legs. Phew that was close. It was also painful too!
However, there was worse to come when I got home.
I straight away asked how Bertie was and John said it was bad news. Poor little man. The vet (which he has seen before, a lovely lady) said she felt fluid in his stomach and apart from his digestion problems would need to check them out. She said they would scan him first and then operate if needed. However as John isn't his 'legal owner' - my name is on the computer at the vet's - they couldn't operate without my consent just do a scan. Once that was done she would ring in a couple of hours.
By the time I'd got home she had rung back and it wasn't good news. Poor little Bertie.
He has 'dark patches' on his liver which indicate tumours, he has fluid in his stomach, he has a heart murmur, arthritis in both back legs, breathing probs (he had his mouth open but no breathing a couple of times in the vets which both of them have done before but it isn't a good sign for him with his other problems) and he has no appetite and she said he is depressed. He is not in pain, but with the 'dark patches' in his liver, he doesn't have long and they decided not to operate on him.
We could take him home if he rallies round and they could stabilise him with drugs but he'd have to go back to the vets for the inevitable. Also with his heart murmur he could just 'go' without much warning. She said to not be surprised if we had a call late at night saying this.
So all in all it doesn't look good for the little fella. I've done nothing but cry since John told me, I'm sitting here crying now. I can't imagine life without him as he's 16 now. He's been with me through all this and I told him when we first got him that he can't die before me.
John and Mum have said it would stress him out bringing him home and taking him back again and it's now time to let him go. I know it's selfish of me but I don't want him to go. I want him with me forever but I know that can't happen.
We have been to see him, at least this time, he's not on the bottom cage and I won't have to get on the floor like last time (this was pre cancer diagnosis though).
Although he knew it was us and wanted "Bertie cuddles" (his head rubbed!) he couldn't get up. John said when he put him in his travelling box, his legs went from under him then. His eyes are big and alert but there is no sparkle there.
We spoke to the vet and she said that "he has given up really" and it's a case of palliative care at home (as long as he's stabilised) or to let him go. He doesn't have long.
After saying "Bye" to Bertie we went home and I cried in the car again. I can't help it. We've got to call in the morning to see how he is.
26 june 2009
ringing about bertie
We phoned this morning (well I asked John to as I get upset too much and can't speak). He had a good night and has had some food, but they will see if he rallies during the day and can come home.
After talking to John and Mum though we think it would be best to go and see him and let him go there. It's nicer for him and at the moment he isn't in pain, but has just given up and it won't be long before he is in pain. I can't bear for him to be in pain and the thought of it is awful.
I didn't ever want this day to come, but we've given him about 10 extra years after his major ops, so he's had a good life with us, no expense spared on him. I've gone without rather than him. Marshmallow or what????? Yes that's me.
We've got to ring again at 4pm to see how he is. I know in my heart this is the best thing for him, but it's killing me every time I think of him. All his toys and things are around the house and I keep looking by the back door or at his bed expecting to see him.
This is truly the worst day and I know I'm going to be a wreck, I already am to be honest with you.
My poor little man :-(
UPDATE 4PM
Well we phoned and the Nurse who is looking after him is in Theatre and said she would call us back when she is out. She said he'd had some food today which is good.
After this we decided to go and visit him anyway (as we always do when he's an inpatient) and they took us upstairs. We spoke to Judy, the vet who is looking after him, and she said if he's OK tomorrow he may be allowed home.
John and I were with Bertie and I managed to encourage him to have some tuna from my fingers. He had a small amount then started spitting it out as he didn't want anymore. The poor little fella, he looks so small in there and he tried to get up, but his little legs were wobbly.
Judy then came back and she said that she had the bloods back. He little kidneys were failing and he had more fluid in his belly. Poor fella. She said "I'll leave you with him for now - take your time" and she left us with Bertie.
John had to have a seat as he can't stand for long and he said "Do you think we should let him go today? It's not Bertie there as he's given up and he's not in pain at the moment which is good". "I think so" said I "but I can't tell her - please can you" said I crying again.
She came back in and said "I think it's the right time for Bertie, but I had to let you make the decision". She got a consent form which John signed (I couldn't again, marshmallow me).
We then were with Bertie when he went to sleep. It was so quick so we knew that he had no fight in him anymore. We stayed with him and stroked his head and paws - then Judy told us he had gone and I just blubbed of course. He was my special little man who had been with me through everything and it's so strange without him at home. Even Domi is missing him.
All I've done since is cry. My poor little Bertie. I miss him so much it hurts. I know it's the right thing for him and he wasn't in pain but his little body couldn't cope anymore. He had a good life at 16 years and I gave him 10 years he wouldn't have had without his operations - although there was only a 1 in 4 chance he'd make it through. He was a tough little man who had a lot of problems with his health but he had a good life and enjoyed it with us.
Night Night Bertie, Rest In Peace little man, I love you so much!
I know some of you might think I'd a "mad cat woman" but he was part of our family for so long, if you have cats you will understand.
RAINBOW BRIDGE
Just this side of heaven is a place called Rainbow Bridge. When an animal dies that has been especially close to someone here, that pet goes to Rainbow Bridge. There are meadows and hills for all of our special friends, so they can run and play together. There is plenty of food and water and sunshine, and our friends are warm and comfortable. All the animals who had been ill and old are restored to health and vigour; those who were hurt or maimed are made whole and strong again, just as we remember them in our dreams of days and times gone by. The animals are happy and content, except for one small thing: they miss someone very special to them who had to be left behind.
They all run and play together, but the day comes when one suddenly stops and looks into the distance. The bright eyes are intent; the eager body quivers. Suddenly he begins to break away from the group, flying over the green grass, his legs carrying him faster and faster.
You have been spotted, and when you and your special friend finally meet, you cling together in joyous reunion, never to be parted again. The happy kisses rain upon your face; your hands again caress the beloved head, and you look once more into the trusting eyes of your pet, so long gone from your life but never absent from your heart. Then you cross the Rainbow Bridge together.
Author - Anon
See you at Rainbow Bridge little Bertie....wait for me there.