Low haemoglobin again

Another round of chemo done but I have been really sick with this one; though the sickness has improved since they took the pump off on Saturday. They’ve taken bloods again today and my haemoglobin is at 64, which apparently is very low so now I have to have another blood transfusion tomorrow. Why can’t things just stay normal for a while?

I’ve got an appointment with the consultant tomorrow but, as I’m not due a CT scan until the end of the month, there will be no news. I’m still on two types of antibiotics long term and one is notorious for making patients feel awful but luckily I’m getting on ok with it.

Blood transfusion

PICC line is in.

They let me have chemo this week despite low haemoglobin and low neutrophils, but I had to have a blood transfusion today and also have some additional injections to administer myself for the next five days to boost my immune system. I feel alright in myself though and haven’t had too much sickness so far. I’m still eating ok and the nurses seem happy with things as long as I stay away from any possible sources of infection/illness.

The night sweats seem to have returned though, which is really annoying, so back to sleepless nights and changing the bedclothes at stupid times in the morning.

Two friends I met in hospital have died this week, so on a bit of a low emotionally as we had been a trio that kept in touch and now I’m the last one left! Sad times.

Nausea

Just a quick update

Still feeling sick, though I have had a few nausea free days to be thankful for and I have been feeling a lot better in myself. I saw the consultant today and they are happy to push along with chemo and continue with my meds as they are. I’m getting a new PICC line put in tomorrow ready for chemo next week as I only had the Irinotecan last week without the 5FU.

Thanks to everyone for all of the flowers, prayers and well wishes... I do appreciate them. My biggest thing at the moment is boredom. I can’t focus on much for more than about 20 minutes and iPad games are just not cutting it. I need to get back into reading again but I’m finding it too hard to concentrate... now I know how the kids feel at school!

I can’t walk very far anymore, and I get exhausted really quickly just doing normal daily tasks like loading the dishwasher. It’s frustrating but I just need to accept it.

Guinea pig

I saw my consultant last week and he told me he didn’t know what to do with me because he hadn’t had a case like mine before where someone seems so well after repeated hospitalisation for a severe infection. So he gave me the option of trying chemo again, as I hadn’t been on it for long enough the last time to see if it was having an effect. I said yes because I’d rather be trying something than nothing. So I have become a bit of guinea pig, remaining on the long term antibiotics as well as trying the chemo again. 

Nothing will change prognosis-wise as they have no idea what will happen. But I had my chemo yesterday, and other than no sleep due to severe stomach spasms, I haven’t had any ill effects so far.

They are all doing the best they can and throwing everything they can at me, which is all I can ask for.

Bring on some good days.

Back at home but not good news

For those of you that don’t know I’ve been allowed home from hospital with a whole load of antibiotics to take, but at least for now there are no more needles.

I’ve still been sickly and am struggling to keep food down. Also, I’m falling asleep all of the time... it’s like I’ve got narcolepsy!

Unfortunately the surgeons met and have decided that surgery is not an option for me. They believe the infection is in the secondary tumours, which are attached to my bowel/stomach and that there could be some leakage into my abdomen. I’m not really surprised as there’s not enough of my bowel left to work with.All in all it means there’s nothing more other than antibiotics that they can do for me. My surgeon said I don’t have long left, but couldn’t define that statement further. I have the hospice involved in my care now and a DNR in place so that if things get really bad, they don’t intervene surgically, as there is no point.

We are trying to get out in the wheelchair as much as possible while I still can, but I have no idea how long it’ll be that I am able to. 

I’m not really up for visitors at the moment due to my sickness and tiredness. We’re also trying to get our heads round the finality of the situation we find ourselves in, whilst still trying to stay positive and make the most of each day.

I am so grateful for all of the support I’ve received and please forgive me if I don’t reply to messages; it is literally that I’m not feeling well enough. X

Infection

Sorry for not keeping everyone up to date - I’ve been so poorly with this infection. I was readmitted to hospital last Thursday with a high temperature and being sick. They still can’t pinpoint where the source of infection is, but the microbiology department have said that what they have grown on the blood cultures they took looks like the type of bug you’d find living in a Picc line.

So they removed the Picc line but this has meant all the nightmares of finding my veins to take blood/ insert a cannula have returned. The Picc line was only removed the day before yesterday and I already have at least 9 holes in my arms/hands!

They also did a CT scan from which the doctor has said there could be an infection near my spleen. This has been referred to my surgeon to see what they want to do about what they can see.

In the meantime I’ve been having issues with my blood pressure and pulse rate, which is causing extreme tiredness and nausea.

I made it to 40 last week... and I was at home for my birthday, though not feeling well. Andy did the place up with banners and balloons and bought me an infinity necklace to match the bracelets I bought for Margot, Sophie and me for the wedding, so that was really lovely.

I can’t see myself being allowed home from hospital any time soon, so I’ve just got to deal with it for now.

No chemo again!

Came home from hospital on Monday with some antibiotics and the expectation of having my missed chemo session today... It turns out my body had other ideas. In the space of 24 hours my white blood cell count and my neutrophils had increased significantly. To add insult to injury, when I arrived at the chemo unit, my temperature was 35.2!

The nurse said fairly early on that I would not be having treatment today, but I had to spend the whole afternoon at the hospital while they took another set of bloods and some blood cultures. The conclusion was that basically they do not know what is wrong with me (apart from the obvious). They were debating about whether to re-admit me to hospital, but decided to send me home with a further seven days of the same antibiotics as my blood levels had come down slightly since yesterday. They will call me on Tuesday if the blood cultures show anything.

So at least I’m in my own bed, but just mighty fed up with my stupid body... I know I might not have long left, but I most certainly do not want to spent the bulk of it in a hospital bed!

Sick of it!