I feel like I’ve gone backwards 6 1/2 months post treatment

Hi Carrie

I'm replying to you to hopefully re-assure you that whilst there is no "normal" with this treatment that I had the same and at times it felt as if things were getting worse. It took me almost 3 years to get back to anywhere near the way I was and I'll never be the same in terms of fitness, energy or eating I don't think . You do get to a new "normal" after a few years and don't get me wrong I'm very happy to have any sort of normal at all  thank you very much !  Try and keep positive it DOES get better and the steps back will be overtaken again by the steps forward eventually.

I'm self employed so lucky enough to be able to work round it but I've just rung Physio for yet another appointment over 6 years on.

Good luck, you are over the worst (hopefully)

Jon

I would say it's as normal as it can be, I didn't/don't have the nausea at all but it took me 3 years to get to the point that I could eat anywehere near enough to do much work and still depending on what I'm doing 2 hours or so is good, a year ago it was a push to get through 2 hours, I still get dizzy at times and once last summer it took me 1/2 an hour before I dared to move I was just propped up in a doorway, I would say keep up with the drinks until you are eating more. I can now eat thin slices of cheese that's not melted that is a big step forward for me, I would say just keep going and find the food that is best and keep trying everything as you are very early in your recovery. I am lucky as I could retire so don't have to do much work to bolster the pension.

Hi Carrie sorry to hear you are also struggling I finished radiotherapy and chemo in June my cancer started in my palate then 6 months after spread to my lymph nodes so had them all out .I'm still struggling I still can only eat soup .icecream yoghurts things like that .and relying on my peg I've lost  over 5 stone .my mouth is still sore too got a ulcer on my tounge that want go had it biopsy it's not cancer thank God. I still get tired and find walking far hard .it really hurts my neck and shoulders. Phyio is helping a bit .I have lymphoma too but that's getting better .every day is a struggle really. Luckily I don't work as such just have a little business selling my homemade jewellery so just do event when I can .i did suffer really bad from sickness was horrible but it's nearly all gone now just have it now and then .I'm struggling with not beening able to see so well don't no if it's related to treatment .I still Carnt do housework like I use to and shopping ect .I just do what I can take care I'm 45 with 3 daughter's 21 .18 15 it's been tough on us all x

Thank you for your replies. They are always appreciated.

Update 

I went to A&E today with some extreme symptoms that were treated successfully. I was shaking uncontrollably, I was lightheaded, fatigued and very low in mood. I’ve been feeling low for a few weeks but I hit rock bottom this morning when I couldn’t stand up because of the tremors. 

I have written many times on the Forum that I suffer chronic nausea and take Metoclopromide  which I’ve had for the past 6 months. Today I learnt that many of my symptoms are side effects of this type of antiemetic including nausea (unbelievably)

The Doctors recognised my symptoms immediately, and I was given an injection of Procyclozine.  

this evening I feel so much better  I wanted to let anyone know especially those that have followed my journey. 

I’m not saying I don’t/won’t have late effects now but I do feel some of my symptoms have other causes and can be treated outside the ‘cancer’ remit. 

Carrie

Aww thanks for the update Carrie , so pleased that you are feeling better . It just goes to show how we all suffer different side affects from drugs . Im sure its a big weight of your mind , best wishes .

                                                                                            Chris x

I've neglected this site for a month or so now and have only just found this.  I'll message you of course but do not do what I did . . . run before you can walk.  I had a kind of system crash and went from quite well to totally useless.  It must have set me back many months.
So best you do not return to full time all day work yet . . .  see if a couple of hours a day would be an option.  Having something positive to do every day I find also helps.

Hopefully you are back on track again . . . . Hopefully !

Jon

Hi Carrie,

This is such good news. I’m so pleased an answer has been found to your long-standing and increasing symptoms of nausea, shakes, low mood etc. Brilliant that you have shared this, as who knows who may get similar in the future and find an answer here. And brilliant for you too - onwards and upwards! (But heed Smiley John’s advice to not go mad and do too much or expect too much of your recovery)A huge step in the right direction.

Hilary

So glad you are feeling a bit better Carrie, sounds like been awful for you after doing so well.  Just take it step at a time now xx

Ohh Carrie I just read this ......

I'm so sorry to hear you are suffering some six months on into recovery, don't know if you remember but i talked about this nausea problem in an earlier post or discussion, I too felt awful with recurring nausea, would start to feel good again only to start reeling months later, usually when i stood up or got out of the bed at night, completely random and confusing, as I thought i had passed this phase and was moving on.

It too turned out to be the "Metoclopromide" I wasn't quite as bad as you were, nor did they need to give me an injection, but the nausea and sickness / dry retching was truly awful, I was only on it a couple of months, not the six you were ! .... luckily my dietitian and consultant continuously worked with me until such time as they changed my meds and feeds completely, as soon as i stopped taking the Metoclopromide the symptoms dissipated within a very short time ....never had any problems since.

I know it's laborious, but read as much as you can about what you are prescribed, many of the anti nausea, anti sickness drugs, actually have the adverse effect with some of us, of course your team cannot know this so constantly berate them if anything causes you to feel awful, not saying they can always rectify, but "always" worth asking the question as I've found they will usually do all in the power to help.

Best of regards to you as always

Marcus.  

Hi there don’t know if u have seen my post 

having same problems regarding no focus down and shaking also had bloods and told all normal also happened 6 half months after last treatment out the blue and was so tired fatigued 

I am also trying to walk and do things bit like u struggling this is awful as I have now been told it’s generalised anxiety and panics and I’m sure it’s not but seeing a councillor at present don’t feel it’s helping but we will see 

if I get any feed back or answers please let me know and I will you 

thank u 

pauline