Two Steps Forward, One Step Back

A somewhat frustrating day, but I have managed to achieve quite a bit today!

There have been some more firsts over the last couple of days: yesterday I did my first online grocery shop, and today it was delivered. It was a big shop, because my larder was fairly depleted, and I also needed new ingredients for the recipes I am keen to try. Yesterday I cleaned out the fridge freezer - very glad to have done this before the grocery delivery. It is all looking sparkly and clean now!

After putting the stuff away from the delivery, I suddenly realised that all this activity was starting to catch up with me, and I ran out of energy and had to rest. My idea of cooking supper bit the dust, and my hubby was back in the kitchen again... He is very good, and willing to take over when the need arises, I am glad to say. A bit frustrating, though. I am still very limited by my small reserves of energy. I so want to run before I can walk, and need to remember that I still have M.E. and will still suffer from “post-exertional malaise” – when the consequences of doing too much catch up with one, but the payback is delayed by a day or more. I have certainly been very busy over the past few days, trying to get the kitchen straight before my first online grocery shop.

I am already experiencing the problem of “too many cooks spoil the broth” – for the meal he prepared, my hubby used some curry sauce I bought today, that I was planning to use it for something else! This transitional period, when we are both cooking, is bound to be problematic, and certainly more difficult than when he was doing all the cooking and shopping. It’s going to be hard to keep track of exactly what I’ve got in the larder and planning the meals, and he may be called upon to do the odd bit of shopping until I can get straight.

While all this is going on, I still have several upcoming hospital appointments:

Thurs. 12th Nov. (tomorrow): Pre-assessment for my procedure next week.

Tues. 17th Nov.: Appointment with the support garments lady in the stoma clinic.

Wed. 18th Nov.: Investigation of what is left of my rear end under general anaesthetic, by my surgeon, Mr. Pullan, in the Day Surgery Unit. His registrar was unable to make a thorough investigation at the end of October because it was too uncomfortable, and it required more time than he had.

Thurs. 19th Nov.: CT scan, to see if there is any evidence of cancer still in my body.

Fri. 27th Nov.: Bloods and port flush on the Ricky Grant (chemo) Day Unit.

Mon. 30th Nov.: Oncology appointment, when I am hoping to get the cancer all-clear!

I had two letters from the appointments clerk at the hospital today, one relating to my pre-assessment appointment tomorrow, and the other to the procedure itself, together with a leaflet detailing what to expect and how to prepare.

Yesterday I counted up just how many appointments I've had at the hospital, and not counting my stay in hospital for my surgery, it has so far been 43! Add on the ones to come that I know about and it's 49! I have spent a great deal of time there, and my hubby has driven me there every time, and been so supportive throughout.

Now the kitchen is sorted, I am hoping to be able to start cooking in earnest, and also to be able to get back to being creative in the studio again, but with all these hospital visits, I’m not sure how long it will be before I’m in a more relaxed and manageable routine again. I just have to learn to pace myself and not expect too much before I’m ready. Having felt so much better, and then having a bit of a crash this afternoon, this is very hard. I’m still far from where I need to be, and it’s going to take time. It’s all about getting the balance right between activity and rest, and not getting frustrated, and I’m not very good at this! You’d think after living with M.E. for 8 years that I’d have pacing down to a fine art, and before the cancer, I was managing it pretty well, but this has upset the balance and now I’m in the recovery period, it’s a whole new learning curve and I feel like a novice again.

Completion of Florabunda Alphabet

Last night I finally completed the Florabunda alphabet I’ve been working on, with the letters K to Z, so I can now make personalised cards for all my friends, even those whose names begin with X lol!

Here is the complete set.

Health Update

At long last I am starting to feel better! The final chemo just over three weeks ago certainly made its presence felt and the effects went on well into week 3 of the cycle, which was unusual because with previous treatments, by week 3 I was always feeling a lot better. It was doubly surprising that it went on so long, because the final treatment, like the penultimate one, was at a reduced dose. I am still getting peripheral neuropathy, mostly in my feet now, which is strange because I’ve had more trouble with it in my hands previously – it seems to be there a lot of the time, giving me feelings of numbness and pins and needles, particularly in my toes, and it seems unrelated to cold, too. I shall mention this to the oncologist when I next see her.

I have now started to pick up the threads of my life again, doing some domestic tasks. It may sound funny, but I am so enjoying this! It is making me feel a lot more human again, and in control of my life. My hubby has been so wonderful looking after me all this time but I really feel it’s high time I took back a lot of what he’s been doing, and started looking after him again after so many months.

Here are the “firsts” in getting my life back again!

Thursday: I did my first batch of laundry. Since going into hospital, my lovely cleaning lady has been doing this for me, apart from the odd bit of hand washing that I’ve managed to keep up with.

Friday: First lot of ironing.

Saturday: I got up and got my own breakfast for the first time. Since my operation, my hubby has been bringing me breakfast in bed. First washing up – I did the breakfast things! A gentle introduction. I also finished the ironing. I sorted the larder cupboards in the kitchen and made a list of what we’ve got, and what we need. I started making my first shopping list for the online order I shall be doing in the coming week.

Sunday: I went to church for the first time since May, when I had recovered sufficiently from my operation, just before I started my chemo. I was quite overwhelmed by the lovely welcome I received – everybody was surprised and delighted to see me back and I got a LOT of hugs! Everyone said how well I was looking. I would have easily forgiven them for forgetting me altogether, it’s been so long since I showed my face in the place! I washed up the evening meal dishes. Soon I will be cooking the evening meal, too!

Monday (today): I sorted the freezer and defrosted it. Much as I hate having to throw food away, I did have to throw away a bit, because it was too old. Once I’m back in the driving seat as far as the cooking and shopping are concerned, I shall have a proper idea of what we’ve got, and what needs eating first, etc. etc. and this won’t happen again. I have also re-started my diet – I am on the 5:2 diet, where you restrict your diet to a maximum of 500 cals for two days of the week and eat normally for the other five. I had to abandon this, on the advice of my surgeon, in advance of my operation, in order to keep my strength up and allow my body to recover. Although I have gained some weight during this time, I have managed to keep it on a more or less even keel, which I am pleased about, but now it is time to resume the downward trend and hopefully to reach my target weight by next summer.

During the coming week, I’ve got the fridge to sort and clean out, and the small freezer (part of the fridge-freezer in the kitchen). I also need to clean the hob and possibly the oven but I may ask my cleaning lady to do the latter lol!! There’s a box of food out on the counter where my hubby has been putting his food shopping for easy access for his cooking, and this needs sorting and the stuff putting away, and then I can clean that counter, including all the crumbs from the toaster! Tomorrow morning I shall finalise my online shopping list and then do the order in the afternoon, and request the delivery for Wednesday, as I used to do before. I am hoping to cook the first evening meal on Wednesday.

I am also trying to be good, and going to bed earlier than I am used to, so that I can get up earlier. The trouble is, my M.E. messes with my internal clock, and I tend to be mentally alert in the small hours, and do not feel at all ready to go up at midnight! I am trying to go up to bed at 12.20 a.m. at the latest. Since I have been doing this, I have not been sleeping well (waking frequently) which is what always happens if I go up before I feel ready, but this time I am determined to try and educate my body and put up with the wakefulness until it settles down into a new routine.

This whole cancer journey has brought me to a new start in my life, and I am determined to set up good habits from now on. I seem to be at my best for doing things in the mornings, so I am putting my feet up in the afternoons and evenings and not overdoing things. I have been needing a sleep in the afternoons but this may not last forever as I gradually recover my strength.

I am also hoping to be able to start spending some quality time in the studio doing art and being creative! Initially a lot of my energy will be taken up just getting things straight in the house again, but once this settles down and I’m properly into a routine, I am looking forward to spending time up there, probably mostly in the mornings, depending on how my energy levels pick up.