Oesophageal Patients Association
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Update on my husband

Hi folks

Not been on for a while. Husband has got through his 1st cycle of chemo with very little incident - or so we thought until he went for round 2. His bloods were too low and they were concerned about his kidney function so he got sent away for the weekend, told to eat and drink more (which he was struggling to do) and we returned on Monday. Bloods were a wee bit better but they hooked him up to a drip straight away to get some fluid in to him. Chemo went ahead on Monday, but he had to stay in hospital an extra night while they pumped more fluids, salts and glucose in to him. He wasn't best pleased about that, but he knew it needed to be. I felt that the Doctors and nurses weren't listening when we were telling him he was struggling to eat and drink their reply was "chemo does that". I told god know how many people he was not sick because of the chemo he physically could not get food and drink passed the tumour that's taken up residency in his oesophagus!!! Was not a happy bunny, but eventually a registrar listened to what we were saying, hence the extra day in hospital.

Moral of the story if you think you're drinking enough, drink some more and then some more on top of that. He got a row, not only from me but his consultant too. Least now he know's I wasn't just being a nagging wife!!

Anyway he got back home on Wednesday and he's been doing fantastic. He's managing to get out and about and do little chores round the house, which is helping me a great deal, I am just so, so tired all the time. But it's short term pain for long term gain so I'll suck it up and get over it :-) He's also managing to eat and drink normally again and after stamping our feet we have now been told to call the hospital the minute he starts struggling. Think the steroids are reducing the inflammation temporarily and allowing him to eat, but at least the hospital now understand this.

He's also been put on another injection called g-csf which I believe stimulates the bone marrow to produce more white blood cells and generate his own stem cells so his bloods counts don't dip and he can still fight infection

So with the slight delay in chemo it has put our finishing date out ever so slightly, just hope there are no more and we can just progress through this and get it done and dusted, however when the next cycle starts we'll be over half way which I think psychologically will be a huge milestone.

Sorry for such a long post.

Have a great weekend!!

L xx

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Good news Lucy. I too had problems eating but about a week after my first chemo session my appetite improved. My surgeon said that this might happen as the tumour shrinks as a result of chemo.

I also had delayed chemo sessions due to poor blood results and had to self inject to raise the white blood cell levels. I think this is a common problem.

Good luck with the rest of the treatment and you take care of yourself too. My ex-husband (we are still good friends) is taking care of me and I notice that he looks very tired at times. I firmly believe that it is harder for the carer than it is for us patients.

Sending hugs to you both.

AM x

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Lucy

Good news. It is a very frustrating time (Chemo time). As AMLux says, the eating and drinking will often improve as the tumour reacts positively (shrinks) to the Chemotherapy. My tumour shrank by 75% through chemotherapy, and by that time I actually felt I was 'better' and that the chemo was the enemy making me ill.

Water is very undersold with chemo. You cannot drink enough of it. The chemo constantly dehydrates us, usually without us noticing any change. The chemo nurses will spot it and stop the treatment until you catch up again. So it is essential that you try and keep drinking, even when not thirsty or not feeling like it.

I think part of the issue with all of this treatment is: The many different medical disciplines involved. From Oncologists to GI Surgeons, Chest Surgeons, Bowel Surgeons, Nurses, GP's, Dieticians and it goes on..... They all see their bit as being key (and it is) where as you see the whole reality in glorious technicolour and live every pain under the constant dread of the cancer changing as time progresses. So one consultant will say "you must do xxxx" as the nurse says "you must do yyyy" just at the point the Oncologist tells you "why haven't you done ABC?"

If it helps? With my hindsight.... I resolved just to get the chemo over with. I hated it and found no way to even remotely like it. But by counting down those dreadful pills every day, I started to see them decreasing, as my eating was increasing. It did not make feel (physically) much better, but mentally it did help a bit. When the chemo stops, you have a few weeks of nothing before surgery. That is glorious, enjoy it.

Keep drinking the water....

Bruce xx

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Thanks Bruce.

You're right about the conflicting information from various health professionals. It was tricky at the hospital but I just kept saying the same thing to everyone. "He wants to eat, he wants to drink. He's thirsty and hungry, his tummy is rumbling. He physically can't do it. Once he's got X amount of food/liquid in him he's full up and cannot take any more in". Like I said they did finally listen to us and now hubby is taken on as much liquid as is possible.

The chemo itself hasn't made him sick in fact it's been better than either of us expected it to be its just being full up of food and drink that's the issue.

We're definately on the countdown to get chemo over and done with. We'll have a nice Christmas and New Year chemo free. Get hubby fattened up in preparation for his operation which provisionally is due to happen on our 1st wedding anniversary. 😂😂 and both take as much rest as possible.

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Lucy

Great attitude ;^) That will help you many times over...

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Hi Lucy

We're in a similar position, sort of. My hubby had his second (post-op) chemo session postponed yesyerday because his neutrophils were too low. I understand it's common but it's frustrating nonetheless. Hope we can all have Xmas chemo-free!

Lou xxx

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Hi Lucy,

It does sound "one step forward and two back" at the moment, but keep the faith and you will reach the stage when it's the other way! My hubby was immensely lucky with his chemo - his hair thinned and he felt progressively more tired, but other than one rush to the hospital (a week after finishing) with a fever, it was uneventful. He also developed small blood clots on his lungs, which was spotted on a post chemo scan, so he then started twice daily Clexane injections.

We are both here to tell the tale, so stay positive and as others say, look after yourself when you can.

Best wishes, Elaine x

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