1st May
Very tired today; had several daytime snoozes to catch up! The good news is I do not appear to be suffering with the nausea anymore so the new tablets are working.
Tomorrow we have a new settee and chair being delivered (a recliner nonetheless!), so we had to move the old furniture into the garage as they were delivering the new set at 8:30 the following morning. This meant that we didn’t have anything to sit on for the evening so we decamped to the caravan and spent a cosy evening doing a jigsaw.
2nd May
Again, very tired today but this is obviously to be expected. Three good days after chemo usually leads to a slump before picking up again.
I went to the Hospice again today. I had swordfish for lunch which was delicious and I finished every last morsel. I also made a birthday card in the diversional therapy session for my friend’s upcoming birthday and once again had reflexology and attended the Thai Chi session. I noticed during the Thai Chi that my neck was hurting a bit and it seems that one of my lymph nodes has swollen up.
My bowels have moved from one extreme to another ….. I think that’s enough said on that matter though!
Hubby went out to the pub in the evening for a drink with a friend. I think he enjoyed himself just getting out of the house and away from me for a bit.
3rd May
Hubby wants to get away in the caravan again but with my bowels as they are at the moment I think I need to be near facilities for at least today!
Had a text from my old work colleagues inviting me out to the pub next week so that will be something to look forward to.
Had a chat with hubby about the possibility of me seeing a specialist privately to discuss the options I might have with regard to my nephrostomy bag. I feel that I would be able to cope with things much better if I didn’t have to contend with it. My greatest way of relaxation was always to take myself off for a bubble bath with a glass of wine and a good book. I think my morale would greatly improve if I could do this again. Also it’s rather restrictive with sleeping and having to rely on someone to ‘plug me into’ my night bag each night and disconnect me each morning. Having to empty my bag when out and about is also really yukky. I would even consider having that kidney removed so quality of life was improved. We decided to wait until the results of my CT scan and then pop to the doctors to ask for a referral if the CT scan is positive.
I was powered by a can of Relentless today so I took advantage and hung out the washing; did some ironing; cooked lunch (sort of); weeded the back garden; walked the woofer and helped hoover the cars. Things that would have been a natural occurrence normally seem like an epic now ….
4th May
Today was not so good. I felt like I’d had enough and thoughts of wanting to quit spring to mind again. My temperature has been consistently 37.5 or over, which is not so good. Looking back over my temperature chart though it’s apparent that I always have a slump around 7-10 days after chemo so I need to just rule these days out in future.
I felt really bad emotionally as hubby still wants to go away with the caravan but I just don’t feel I will appreciate it as I feel so rough. It’s taking a lot out of him; he’s getting really annoyed that we have a caravan outside; warm weather; and time off work but aren’t doing anything to take advantage of it.
Another bizarre complaint today is a sore jaw (it feels like I’ve dislocated it?). My back also hurts where my bag is and I feel like all I seem to do is moan about my ailments.
Greatest achievement today was washing the dog – he was starting to get a little honky!
5th May
The DNA results are in for the dog. Turns out there is no Standard Poodle in there whatsoever. He is 50% King Charles Cavalier Spaniel, 25% Minature Poodle & 25% Toy Poodle. This goes back three generations so he must have just been the largest in his litter. We only saw his brother and his mum when we collected him so had nothing to judge him by really.
Woke up today feeling just as bad as yesterday but at least my jaw is back to normal again – weird.
6th May
Once again today was not a good day. I felt shattered right from the moment I got up and my back is hurting again. Something just doesn’t seem right and hasn’t since I slept on that side the other night. Hubby had a look and said it seems okay. Fingers crossed it will improve when my bag gets changed again.
Unfortunately I was due to go round to my dad for Sunday lunch. I did not make a good lunch companion…… I could quite easily have fallen asleep in my Yorkshire pudding. I felt really bad as my dad had slaved over a hot stove and I could barely raise any conversation. However, saying that it was gorgeous but I had to excuse myself early and go home for some needed kip (on a swing in the sunshine in the garden).
My dad did give me some iron tablets left over from my mum’s illness so I started taking them straight away. If there is any chance that this is going to give me a reprieve from a blood transfusion then it’s worth a try.
7th May
Again(!) woke up feeling just as tired as when I went to bed and my back I still hurting. It didn’t help that I had nightmares all night dreaming about my previous career as a legal secretary and my boss was shouting at me to complete some contracts!
Had a few tears during which I announced to my hubby again that I was going to stop chemo – the usual discussion about quality over quantity. Let’s see what tomorrow brings again as tomorrow is officially day 11 after chemo and they say that 7-10 are the worst.
Hubby’s friend came to visit from Scotland again so we all went to the pub for drink and then I left them to it and returned home to watch a film and do some sewing. I did treat myself to a Chinese takeaway which was very nice :)
8th May
CT scan today (always a joy to have another needle inserted somewhere!). That took up most of the day as I had to get there an hour early to get the radioactive drink down me and then to get cannulated. Apart from that and the usual bad pain the day was pretty uneventful. I will do another sample for the doctors tomorrow to rule out the back pain being an infection.
9th May
Turns out the back pain was indeed an infection so I’m on the antibiotics again. Makes a change to have the infection both sides instead of just the good kidney!
Went to the Hospice again today but didn’t stay as long as usual. I am clearly the youngest there by a couple of decades and no one there seems to be on treatment like me, they seem to have all had their chemo / radiotherapy and are out the other side now.
Went out in the evening with my old work colleagues. It was a really pleasant evening meal out and I’m glad I went but also glad it was over.
10th May
A pretty quiet day today, can’t think of anything interesting/abnormal that happened.
11th May
When I woke this morning there was blood in my nephrostomy bag. Hubby went round to the GP and showed the nurse who recommended contacting the chemo nurse. The chemo nurse obviously wasn’t familiar with this sort of thing so had to make another phone call to an urologist to see what, if anything, needed to be done. He/she advised just keeping any eye on it – it was probably just a case of me sleeping on it. Thankfully it settled down rather quickly after that.
David went to the Hospice for the day today so I went into town and bought some new clothes that were the right size (I’ve never put the weight back on that I lost whilst in hospital). I was a bit dubious whether I would be able to carry out this simple task on my own but I managed it (although I nearly turned back half way there).
David had a really good day at the Hospice chatting to like-minded people. He came back really positive which was good to see. He also announced that we wouldn’t be going on the trip we had planned after my next chemo session to see his folks in Felixstowe. This is such a weight off my shoulders as I was getting really concerned about going so far (4 hours) in a car whilst towing the caravan. All sorts of problems kept coming to the front of my mind like 4 hours in a car would be uncomfortable with my nephrostomy bag; what if I got ill? The stress of it would probably make me psychologically ill. Also having to put on ‘front’ for the whole weekend would really take it out of me. So it was a great relief to hear hubby had changed his mind; although I do want to see his folks again. As a compromise we are going away for a couple of nights locally in the caravan.
12th May
My nephrostomy bag was clear which was just as well as we travelled to Cardiff to see a show with Derren Brown in it. I couldn’t believe it but I ended up being in the show itself out of an audience of 1800! I can’t really say what happened as he emphasises secrecy in his shows but on a very basic level he guessed a word (which was really random), that I had written on a card in a sealed envelope.
After the show we went for a lovely posh Indian meal. I deliberately went for a dish that wasn’t hot but I still had problems stopping my nose from dripping (a real problem when you don’t have any hair in your nostrils to stop the downpour)! Luckily the hotel we were staying in (which was very nice) was only just round the corner so we didn’t have far to go!
I did feel very tired all day which is getting to be the norm but I guess that’s better than the nausea.
13th May
Our full day yesterday completely wiped me out. I slept all the way home from Cardiff then after collecting the dog from my dad’s went back to bed for an hour and a half. Managed to get up and have some tea and then dozed on the couch for the remainder of the evening. Waste of a day really.
I guess I have to take some positives from all of this and that is that I am now on top of the nausea and also relatively pain free (apart from my back where the bag is but it’s not that bad) but the tiredness is getting me down :(
Hubby says I should set goals and keep thinking that in less than 4 weeks I will have finished all of my chemo sessions, assuming I go ahead with the other two. It is difficult to be positive sometimes as right now it is taking over my life.
