Three weeks now since my diagnosis and things are becoming painful and uncomfortable.
The day started as usual with getting up at 0430 for painkillers and then I got up at about 0620. Managed to get some work done but I’m up to date as I haven’t done much in the last couple of weeks. In the afternoon the plan was to go back to bed for a couple of hours to get some sleep and to be honest, get a break from the pain for a while.
However, just as I was about to go upstairs my chemo nurse called to say that she had managed to get the chemo tablets and if I wanted I could revert back to the plan to start my treatment on Monday. Weirdly this cheered me up no end and I accepted the offer!
So the plan now is to get to the clinic for 1030 on Monday and have the chemo chat and an ECG, then take the first tablet(s). I will then have to wait an hour before I can have my first lot of radiotherapy. All told I should expect to be there about three hours. Then I will be there every day Mon – Fri but this should only be about an hour.
There then followed a telephone session to revert back to all of the previous plans for people taking me/coming with me for treatment next week. Luckily everyone is very flexible and understanding and fall back to the previous arrangement. Thank you folks, you know who you are!
So, it’s back to Plan A, let’s get this treatment started and hopefully say goodbye to pain!
I then went to bed and managed a bit of sleep and felt much better for it.
Whilst I was sleeping, Paula was beavering away with the housework and when I came back downstairs she looked absolutely shattered. This broken sleep pattern I’ve developed doesn’t just affect me of course and I’m conscious that my tooing and froing during the night disturbs her too.
She has been an absolute star and hasn’t complained but I know that she’s feeling both the stress of what I’m going through and battling tiredness too. I’m a lucky man to have such an understanding wife and I couldn’t think of a better person to have by my side whilst we travel this road together.
Paula had an appointment at the hospital (nothing serious) and whilst we were there we came across the Macmillan ‘office’. They were running their annual coffee morning to raise funds so we popped in for some cake and made a donation. All of the literature that I’ve been given (and it runs to several volumes!) was produced by Macmillan so I definitely owe them a debt of gratitude. Also the wife of one of our very dearest friends was looked after by Macmillan.
They also care for the family of the ‘patient’ and offer counselling, massage, acupuncture and other services of this nature. We had a chat with one of the volunteers and she explained that often it is more difficult for the family and they may need other support. In my case that could be Paula or my parents or my brothers and sister.
At this stage I don’t feel the need to talk about my cancer (although Paula did quite rightly point out that that is exactly what I am doing by writing this every day!) and the thought of people fussing round me frankly leaves me cold. This may sound ungrateful but I don’t mean it that way. I’m so touched by the messages of support that I continue to get every day but that is different to people cooing and fussing over me. It’s difficult to explain what I mean but I hope that it makes sense and that I don’t offend anyone who has contacted me with good wishes.
It may be that in the future or during treatment I feel differently but that’s how I feel at the moment. That said, I do think the idea of a bit of down time relaxing with say, a massage or acupuncture could be very helpful for both me and Paula, so we may well end up going back to the Macmillan people to ask for this.
I also feel that having someone for Paula to talk to will help her to get through the next few weeks, I’m conscious that she cannot always talk to me about the way she feels either because she doesn’t want to worry me or stress me but I can be a bit of a grump, I know, hard to believe but there, I’ve said it!
I had to resort to taking the stronger painkillers in the evening as I just could not shake the pain off with the ones I have been taking. They did work and for a while I had virtually no pain.
Off to bed for what I hope will be a restful night, we will see.