Cup half full

It’s Sunday morning and the house is quiet. Laith has gone to visit some friends with Laila and I am here alone with Ruby (who is sleeping). I thought it would be a good idea to load some photos at long last. I am not quite brave enough to post a photo of myself in all my baldness but perhaps soon…

My mum will be here on Tuesday and I am really looking forward to it. We haven’t seen each other in almost 3 years so it will be as much a reunion as a visit. Laila is also looking forward to ‘granny Merle’ coming to visit.

I am feeling ok, just really exhausted, which I think is a combination of the chemo and also having to get up to feed Ruby every 2-3 hours through the night, so just not getting enough sleep. Its chemo again this coming week so not looking forward to that but it is my second to last one so another step in the right direction. I can’t wait for my life to return to some degree of normality once the treatment is over. Roll on November.

We changed Ruby’s casts on Thursday. She was really good for her first leg but when we started the second leg she kicked off and nothing on earth could pacify her. For the rest of Thursday afternoon Ruby just wouldn’t settle. She was fractious with her feeds and just kept crying. This went on all night so we were up every hour or so trying to comfort her.

This morning I called the physiotherapists and their advise was to get the casts off which we spent all afternoon doing. Once we had done the first leg (the one we did last when putting the casts on, that she was so upset about) she just calmed down.

Looking at both legs, there is a patch on each leg where the skin was rubbing off so no wonder she was so upset. Poor little thing. She had some milk and fell straight to sleep. I’m looking forward to a better night’s sleep tonight and a happier little girl.

It’s been 5 days since the chemo and I’m feeling rough. My body is aching and my legs are really sore. The joints (knees and hips and ankles) are painful and I feel very unsure of my steps. Another side effect is painful fingertips and nails, so doing the washing up (baby bottles etc) is torture. Yet another side effect is sore gums. It feels like the inside of my mouth has pins and needles and parts of the gums are getting raw. I also can’t taste food which is pretty boring.

I have been feeling disorientated at times too. Ruby woke for her 3am feed the other night. I didn’t hear her and Laith had to wake me up to get her. I then had her in the bed on my chest and must have dosed off but I must have been amidst dreams and hallucinations and was convinced there were 5 screaming babies on the bed and I didn’t know what to do. I was really stressed out for about half an hour until I came to my senses and took control of the situation. It was pretty scary… Ruby slept through it all so she wasn’t stressed out in the least.

Laith has gone away on a business trip and so it’s me and the girls at home. I feel awful not having the energy to do much with Laila. Ruby sleeps much of the time so is much easier to cope with. Hopefully my mum should be here soon to help and support me for a while until this nightmare is over.

I have had some amazing messages and mails from old school friends which is amazing. Thank you all so much for writing and it really is good to hear from you all. I’m sorry having not been back in touch. I will make the time as soon as I can. And to all my age old friends who are so fantastic and supportive. Thank you all so much.
I love you all.

It’s been one hell of a day. Ruby and I went to the hospital for another dose of poison. They only make it up when I get there as it’s expensive and has a short shelf life, so we had to wait a while before we were called in. We arrived at 11:30.

It took a while once we were called in to get going but at least the line went in first time today which was a huge bonus (it usually takes 3 goes and its bloody sore. Its properly the worst part of getting the chemo and I had sleepless nights over the lines going in a few days ago.

The drip was going in quite nicely and I was engrossed in a conversation when all of a sudden I had a hot flush starting from my belly and ending up in my head. I started struggling to breath and felt nauseous and faint with my head rushing.
I was powerless to do anything, I couldn’t even speak. Fortunately the lady I was speaking to had the presence of mind to tell the nurses on duty. They stopped the drug and switched the fan on me until I felt better. Apparently it’s a fairly common reaction and the body’s way of telling me it doesn’t like the drug. They slowed the drip down and I tolerated the rest of the drug with no problems. Ruby and I left at 4pm eventually. I called Laith to come home and fetch Laila from nursery as I didn’t feel good about driving. I gave Ruby her milk, put her to sleep and went and sat outside in the fresh air for a while.

I am still flushed but feeling so much better. Hopefully the steroids won’t affect me too badly this time round. So after a tough old day, I’m about to head off to bed (after I have done the bottles and had my steroids and perhaps something sweet to eat…)

Thank you all for your comments. It so nice to hear from friends and from people who care. I’m sorry I have not been able to reply to e-mails and texts for a while. Perhaps I will spend a day next week catching up with people. Until then, good night all.

That time has arrived again… I can’t believe it has been 3 weeks already. Ruby and I went to the hospital this morning to get my blood tested and to have a consult with my Oncologist. Admittedly I was tired from Ruby feeding all hours of the morning. Sitting in the waiting room/lounge, I was sitting chatting to one of the other ladies who has her treatments at the same time as me, so we have long chats when there. Another lady waiting for her treatment joined in with the conversation (on how the treatment affected us) it turns out she has been treated for the past 6 years. She didn’t find the lump in her breast and a secondary cancer developed in her liver and this recurs every few years. She looks so well and has such a positive disposition that it’s nice to see after all she is going through. Her husband and I were chatting and he was saying that it is very trying for them and especially him. It really does affect the people around you more than it does you.

Anyway, as we were chatting, a young girl walked past who has a tumour on her brain which is in-operable. She looks about 25. She has been fighting the cancer for a few years too and its getting worse as she has had epileptic fits. My heart goes out to her.

Then another woman was wheeled in by her husband and teenage daughter. She looked very frail. Apparently she is a doctor and had been working part time a week ago, and then suddenly things all went downhill for her. I’m not sure what cancer she has but it reminded me of how fragile life can be and that cancer kills and it could so easily be me in that wheelchair. It was a stark reminder that there is a bitter reality behind this disease and I really need to count my lucky stars and view each day as a gift to be cherished. I have shed a few tears today thinking of her.

Its been a while since I last wrote. Since my last chemo I had 10 days of feeling rotten. Sore body both outside and in. Ulcers and sore fingers. I’m not looking forward to my next 3 sessions of the same drug. This is not a fairground ride I would like to stay on, thank you.

I have been feeling better for about a week now but have my next chemo this coming week so am just enjoying feeling normal for a while.

I have been thinking about what I want to do next year after all of this is over. I am finding this quite a positive experience. All my insecurities of not doing things that challenge me more than I am comfortable with are being tested and I am finding myself wanting the challenges. Its like I have wasted so much of my life not wanting to do things. Perhaps my new motto should be ‘a challenge a day keeps the cancer away’.

I am now also officially bald. There was so little hair left that I eventually asked Laith to just shave it off and its fantastic (if a little cold) I still wear my wig out in public and am getting used to it.

The girls are well. Laila has turned into a little girl all of a sudden. She is such fun to be with and is as bright as a button. Ruby is growing and is able to turn herself over now, casts and all. She had her immunizations last Monday and has been high maintenance ever since. I do feel sorry for her. She isn’t feeling well.

Laith is well. We are both tired due to waking at night to feed Ruby (and she can holler when she gets the chance). Other than that, he is working hard and not taking enough time out for himself so becomes stressed.

I will try and get those photos loaded soon and I await comments on my new look.