16th April
Temperature first thing this morning was 37.1 so hopefully I’m heading down the right track now.
Its hubby’s first day at the Hospice today. I’m really glad he will have someone to talk to and have a brief respite from me. Things have been getting on top of him recently as he wants to get away in our caravan and enjoy a bit of time away whilst the sun is briefly making an appearance. Unfortunately every day we seem to have something that needs to be sorted. Today Hospice for hubby; Tuesday dog groomer; Wednesday Hospice for me and Thursday Macmillan (they eventually called back this morning). The nurses at the Hospice did tell us off slightly for not contacting the chemo nurse regarding my high temperature though (opps).
I just hope that Macmillan can sort something on the nausea-front. Once I’m on top of that I feel that I will be able to enjoy things more, but at the moment it just rules my life slightly.
17th April
Today I accompanied hubby and dog on a walk in Stratford. The weather wasn’t great (rather windy), but I managed to keep up. After that it was a brief interlude to the pub for cheesy chips and back home for the groomer. Had a long chat with the barmaid about death, cancer, wills and chemo – really cheery!
David ‘phoned a friend’ and carried on having a couple of beers in the local pub whilst I caught up on the latest Agatha Christie on telly.
All in all not too bad a day…..
18th April
Off to the Hospice for me again today. I decorated (rather badly) a container, had didgeridoo meditation (no comment …) and Reiki again. The occupational therapist is going to order me a wheelchair as although I can walk I can get out of breath easily. It would be great to be able to go on nice walks with the dog (and hubby of course!), walking part way until I’m tired and then getting in the chair. The nurse has also referred me to a nephrostomy expert who is going to come round and hopefully give us more insight into how to deal with it on a day-to-day basis.
After chatting to some of the ladies around the lunch table I discovered there was a non-profit hotel in Bournemouth that specialises in customers who have cancer and life threatening conditions. Something we will have to look into I think!
As the sun has finally made an appearance hubby sited our caravan at Stratford racecourse just for a change of scenery for a couple of nights. We walked to the local pub and had a bite to eat in the evening. Unfortunately stomach ache took a hold during the night and kept me awake for quite a while. I think there was a psychological element causing the pains as well as I was rather nervous about spending the night in the caravan bed purely because it’s obviously a much smaller space and I was concerned about getting up in the night and manoeuvring my night stand in the dark in a confined area. In the end I needed to get up more than usual (3 times).
19th April
Second day in the sun at the caravan. We had a nice relaxing time just sitting outside reading and having the odd tipple. I was due to see the Macmillan nurse at 2pm and she called to say she would be early so we suggested she came to our caravan (as she was in Stratford anyway), instead of us going back home.
When she arrived we discussed changing my anti-sickness tablets to see if something else would be more suited to me. She said she would go away and chat to her colleague and let me know what the best option would be.
We had tapas for tea sitting in the sun at a dog friendly restaurant, which was lovely. No stomach pains overnight this time, so that was good.
I do seem to have developed some spots/marks on my face and head – not sure what that’s from but a couple of them are rather sore?
20th April
Hubby drove me home whilst he packed up the caravan so that I could have a shower/nap at home as the last couple of days have drained me of energy somewhat. I could have a shower in the caravan or in the shower blocks at the racecourse (which I did yesterday), but there’s no place like home for comfort!
Came home to an invite to a private BBQ at our local pub hosted by the landlords so I painted on my eyebrows and off we headed! We had a lovely time and caught up with a couple of friends there. When we got home though we were both thoroughly shattered but glad we went.
Hubby is in the white shirt under the brolly on the right hand side with the headless dog! I was sat next to him but I’m blocked from the piccie (thank God, as I am the least photogenic person I know).
I did not feel very good later on which is probably due to too much sun, wine and overdoing it. But hey, I still have to enjoy myself!
We were due to go to a beer festival in Coventry with other friends tomorrow but we have had to cry off. As much as we would like to go I will find it too much after all we’ve done recently. I’m also concerned that if I got ill/tired whilst we were there I wouldn’t be able to just go home at the drop of a hat as we would have to get a train/coach to Coventry. Also too much alcohol wouldn’t be a good idea.
I started the new anti-sickness tablets tonight (Haloperidol). Fingers crossed …..
21st April
Decided on a ‘do nothing to conserve energy’ day today. The sun was still shining when I got up so thought reading in a chair in the back garden would be the perfect tonic. So, after painting my nails and toenails, having breakfast and a shower I headed on out. Unfortunately the sun also headed on out somewhere else and it started to drizzle. Ggggrrrrr. That’s probably summer gone for the year.
I’ve been having a few pains in my neck / lymph nodes recently. The same sort of pain that initially kicked off this whole process. Good news though - dare I say it but I think the nausea levels are reducing …… I will reserve judgement for a couple of days though just to be cautious! I have had an anti-sickness bracelet on for the last couple of days which the Hospice recommended. Perhaps it’s a combination of both the tablets and the bracelet (although I suspect it’s probably just the tablets).
22nd April
I had horrendous stomach pains overnight which resulted in several trips to the bathroom. I’m not sure what caused it as hubby is ok but I did eat a punnet full of raspberries on Saturday which were one day out of date. Live and learn …..
Added to this was the embarrassment of my nephrostomy bag leaking during the night. Having to change your pjs and bedding at 4 in the morning is not funny.
Sickness was still better than usual so fingers crossed it continues……
23rd April
An appointment with the consultant this morning. I mentioned to him that I was struggling with the side effects and would consider dropping the ‘add on’ clinical trial chemo drug but he said that it was a combination of all of the drugs causing the side effects and urged me to carry on with some more tablets to combat the nausea instead. So he has given me a prescription for steroids and some other anti-sickness (the latter of which I take around chemo time). I hope he’s right …….
In the afternoon I was paid a visit by a lovely lady who is a urology nurse. She showed me a different nephrostomy bag which can be worn on a belt around my waist, which makes it easier to drain myself and is less prone to leaks. This one I can drain standing up whereas the other had to be drained whilst kneeling on the floor – not nice in public conveniences! Fingers crossed this type works better for me.
