[Nanna59Participant]

Sorry I haven't been on here for a while. I just haven't felt up to it but hopefully I have turned a corner at last. I had my SCT on 4th Sept. Apparently all went to plan although at the time it certainly didn't seem like it. The sickness was all consuming and because I couldn't eat I ended up being fed by tube. Not pleasant.
I was allowed home 17 days later but developed a high temperature 3 days later so back I went. They couldn't find anything wrong so decided to remove my Hickman line and let me home again on Friday. It's great to be home but I could do with some advice:
I am still struggling to eat and drink and wondered if anyone else has the same problem and how long before you got back to normal?

Thanks a lot
Chris

[janwParticipant]

Hi Chris

It's definitely not pleasant being sick and unable to eat after your SCT. You already feel so low, without much energy after an SCT and being constantly sick is not a good feeling especially when it lasts for days and days. I know how you felt because although I had three different anti sickness drugs, for ten days after my SCT I still hadn't managed to eat or hardly drink anything. I was hooked up to constant fluids and minerals, but just about avoided being fed by tube because I managed to keep down a couple of spoons of custard on the day before my release! I also agreed to be monitored by a dietician from the hospital in order to keep on eye on my weight loss and food intake. My weight dropped during 4 cycles of chemo and again after SCT from just over ten stone to under six stone mainly due to constant nausea and sickness throughout treatment.

When ever I mention to my consultant about how poorly I felt due to the sickness following SCT, he just states the drugs have advanced so much in this area over the past few years that most patients tend not to suffer. But your post makes me realise it's still a major problem with some patients. It took me a good three months after my SCT before I could begin to consider eating some meals with the rest of the family. I tended to eat little amounts of food which I would fancy eating, such as cheese on toast, ice cream, yogurts, biscuits, egg on toast, etc. Quite often I couldn't eat very much so the GP prescribed liquid drinks to help boost my total food intake which I used for around 3 – 5 months post SCT.

Your usual appetite will gradually return, but you need to give it time for your body to recover from all of those toxic drugs. Just take each day as it comes and try different food in small amounts throughout the day. I still cannot manage to eat a large amount of food at one meal time. When I visited my dentist a few weeks ago, he told me that the state of my gums had only just recovered three years since my SCT.

Hope you feel better soon.

Regards Jan x

[Nanna59Participant]

Hi Jan
Thankyou so much for your reply.
I feel so much better hearing your story and knowing that this is quite normal
I will try not to be too impatient 🙂

Kindest regards
Chris x

[eveParticipant]

Hi Chris

Think of this as major surgery only it's on the blood,some people recover very early and others take months.Slim was unfortunate ,he has never gone back to his normal eating,and he loved his food and drink,food he was sick on in hospital he can not touch now. His appetite also changed,it is a constant battle to get him to put some weight on,because he has started treatment again and the weight just drops off.So try to eat small amounts often.

I also think it is hard for the people around you,I use to pester Slim to eat,looking back it did not help him,his taste buds have never returned,he has supplements now,they are called shots,it's just a mouthful of white liquid ,they contain 150 calories,Calogen Extra Shots by Nutricia,your own doctor can write a prescription for them,or ask the dietician at the hospital to get you some to try first as many of the supplements do not taste nice,but shots are just a mouthful.
You have just been unfortunate ,I am amazed when I hear of people who sail through SCT and a couple of weeks later are back at work,so do not be hard on yourself,Slim just about managed to avoid being tubed,and plod through it,one day at a time.Love Eve

[Kazzam2Participant]

Hi Chris,

My experience was almost exactly like Jan's, I had my SCT mid January and only this last couple of months has my appetite returned, though I cannot eat huge amounts in one sitting. Reading your post brought back the memories of how sick I was, (yours will be memories soon), I complained to my consultant as I thought I had put on too much weight, she said not and I should be happy to be in remission. People are amazed at how well I look. What I am trying to say I guess is, it is not that long since I had my SCT. I hope this helps, good luck on your journey. x

Ps, my consultant likened SCT to open heart surgery, it is MAJOR, and really batters your body. x

Could I just say hi to Eve and Jan, I don't get on here much but do look in a lot so I know what is happening on your roller coasters, good luck to you all xx
Love to all
Karen
xx

[eveParticipant]

Hi Karen

Glad to know that blip is over,and I hope you have a strong lock on that cupboard 😉 😀 🙂 Love Eve

[Nanna59Participant]

Thanks for your reply Karen
I think I am expecting too much too soon.
I went to see my consultant yesterday and he was very pleased with my progress.

Kind regards
Chris
x

[janwParticipant]

Hi Chris

That's great news your consultant is happy about your progress.

It can be a tough and slow recovery process after SCT. I don't think you are worrying too much because it's very hard when you can't eat or drink very much especially when your memories are still quite vivid of being constantly sick. It can take months for your taste buds to recover after chemo. I remember trying to chew meat and getting a metallic taste which was totally unpleasant. Just try to keep an eye on your weight and if your weight keeps dropping or you can't keep your liquids down, then speak to your GP about possible help with protein supplements or other dietary help.

Regards

Jan x

[janwParticipant]

Hi Karen

Good to hear from you. How are you progressing? Is your pain manageable? Are your family coping OK?

Regards

Jan x

[DavehoganParticipant]

Hi Chris I had my SCT on the 12th June , after 13 days I was sent home and still sick , not eating etc , but by the second week of July all was nearly back to normal , im now back in my job full time and eating too much , hang in there it gets better quickly , Good luck Dave

[Kazzam2Participant]

Hi Jan,

good to hear from you. i am in remission but have ongoing issues with pain, despite increasing morphine and having more radiotherapy in July, it is still bad and it is getting worse. I am waiting to here is I am to have another vertebroplasty, but it is a very slow process, I have contcted my gp today to see if he can help in anyway. It is a shame as other than that I am fine, good appetite, weight gain (too much!)etc. My family seem to be coping okay and my husband is working full time, though I know he must be worried about me. Thanks for taking time to reply to me and I wish you well for the future (and everyone else 🙂 )
Well done Dave!! godd luck to you too.
Regards and best wishes to all
Karen
x

[Nanna59Participant]

Thanks for that Dave
It's very encouraging
I appreciate that
🙂

[Nanna59Participant]

Hi Eve
Yes you are so right
Thankyou for your advice
I am now eating a little more each day
Kind regards
Chris

[Anonymous]

Morning Chris
I have just read your post with interest as I am due to go for my SCT on 4th November 🙁
I bet you are so glad is all over now, I really hope things get better for you very soon.

Regarding eating, my husband was diagnosed with throat cancer last year and he spent 6-8 weeks on the liquid drinks, not because his throat hurt after the surgery, chemo, radiotherapy but because he just did not fancy food and it had a nasty taste.
I must say he has sure made up for it. So going for the drinks as a starting point may be a good idea!

All the best to you Chris
Ann
X

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