Effects of cancer treatment 20 years on

Hello, and welcome to the site. HL stage 4 back then must have been very scary, and especially to go through a SCT then which was still experimental, phew, you survived. But inevitably, since it was experimental you probably had larger doses of the drugs than they use now, which must have been really tough on your body. 

I agree, you should have access to medics who look at your problems knowing the tough times you've been through, and at least have some empathy! I hope the docs are trying to at least find out why you are breaking bones and treat any underlying cause? i.e., vitamin D deficiency, sufficient calcium etc? 

At least you now have access to somewhere to rant about your problems and know you will be heard. 

Sending you hugs xxx

Hi

I know exactly how you feel. On about 10 tablets, fatigue, thyroid, menopause, spleen comprimised and other nigly bits and bobs not working right.

Its been 13 years since my SCT had my own cells back. Not really found many survivors so hi again.

I dont know about you but I had to give up work, head doesnt work like it used to, speach somedays is terrible! My memory is confusing and fatigue is the worst its ever been.

Enjoy the days I have energy and dont feel confused. My family is excellent with me and have really helped. I just cope with it now. There is no set in stone cure just got to manage each day and cope with it xx

Hi thanks for the reply,

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I've never met another stem cell survivor (I had my own back too). So Hello nice to  chat with you

I'm also on 11 prescriptions a day (about to rise again )  Its a wonder we don't rattle  lol

I had to give up work after treatment, cant concentrate, pain, fatigue etc so also suffer with guilt for putting so much on family.

How do you cope? are your dr's any good? Mine seem to have no clue of what to do with me & when I say do you think its treatment related they don't seem to want to admit it. Sick of hosp appts.

Thank you for the link first time I've seen anything like that, I just hope medical people see it.

Hope its a 'good day' for you x

Hi & thanks for reply

It seems some  dr's are not interested when treatments over. Especially if they are from a different dept.  I don't know if this is because they have no idea or  besides the crutches & scars from the outside I look okish.

Its only recently that vit d has been mentioned to me due to ankle prob, even though I have suffered with joint pains since stem cell.

I think there should be more follow up and help. Im glad to have found this forum

Thanksx

 Hi, I can relate to you so much, since my chemo in 1992 followed by major abdominal surgery I have not had a day pain free or have much energy. Nobody warned me about any after effects I was just told I was cured and I would feel better ! If that's the case then why are so many survivors suffering after they're 'cured' , I get "oh it's possibly nerve damage" and I'm just expected to take a cocktail of painkillers several times a day just to be pain free , the trouble with that is a lot of the time I just want to sleep, I wasn't told about my legs swelling due to lymph node damage , I feel very let down by the Consultant and other staff that should of known all of this was a possibility but somehow failed to mention any of this. We all have the right to know what could happen after our treatment ends. I hope they help you and try to at least make things better for you, keep us updated Shazzy

Hi old school, you can ask for a vitamin D blood test, from your GP, the results are really fast. 

hope they listen to you! Maybe also ask for  a Dexa bone density scan since you fractured without a specific injury? 

Hugs xxx

I can't lie im not as strong as I was before this happend and with a constant slap in the face with different side effects popping up every other year it has been difficult to cope. The one thing that really helps me on bad days is an author called Matthew Johnstone. He really shows whats going on in my head.

Some days I just hide and let those days happen, other good days I try to do the things I enjoy or atleast vac and tidy up! X

I have been searching for years for people like me and you and I just think there is not enough survivours to show statistics about what effects there are.

There are so many people diagnosed we sort of fall off the spectrum but Macmillan certainly have helped me.

I find alot of information that is for people going through it, it frustrates me there isnt more on what we are going through.

I have recently been put on a vit d tablet called colecalcifol ( maybe spelt different!) its 1000 units and the pharmacy struggle to get hold of them!!

My speach is bad forgetting words and numbness in my fingers sometimes. I have an itch on my back that wont go away, i think its all related to cranial radiotherapy. I had meniococal menigitis while having treatment and that really messed with my head.

I used to have a well paid job and enjoyed working now I have nothing and more problems health wise! Was told by optician a couple of weeks ago I have speckles of a cataract in my left eye! Another slap in the face from blood cancer.

Its so good to hear from another survivour that has the same problems.

I feel a connection with you about being pregnant, I had an abortion in may 2001, it wasnt an easy decision at all. I was diagnosed in Jan 2002, I would have been 8 months pregnant. 

I dont and cant have children with my ovaries fried! I had a breakdown about three years ago, grief for the baby I didnt have and maternal instincts kicking in everytime I saw a baby or family.

Its all overwhelming and so many years of it but I have my baby boy Brian my cockerpoo he is 2 and a half, my gorgeous boyfriend and his 4 kids and my 2 nieces and 2 nephews and my rock my mum, they keep me going and show me lots a love x

Hope I havent blurted on too much just good to rant and for someone to know what im going through xx

Hi Shazzy1969,

I think it was a case of get enough poison into cancer patients to keep them alive, so many die from it but it is coming to light that the more survivours are showing side effects and the experts are slowly getting more data on the side effects and trying different drugs, therapies to reduce the side effects.

It is so hard and frustrating when you try to explain what we feel and the Doctors dont know how to treat it or make us feel better.

The one relief I have is that I took part in a trial and have hopefully helped with future treatment being less evasive. One thing I did find out is that your own stem cells back is not as effective as maintenence treatment or having donor stem cells.

It does make me wonder why it worked for me and not others. I have had people close to me die from cancer and still think why them and not me.

I was told about certain side effects but cant remember just wanted to live x Its defo hard fuking work somedays but ranting on her makes a huge difference.

X

Hi,

It breaks my heart reading all these experiences, but I suppose there is also the solidarity of knowing that you are not the only one. I think as time goes on, and there are more and more of us surviving there are starting to be more cases like us. I think it's time that we had a bigger voice, we shouldn't have to suffer like this with doctors shrugging their shoulders because there are no statistics for them to refer to. We can just share that we have gone through similar! I take about 12 pills in the day, and 12 pills at night (I had HL stage 2/3 in 2001, had 9 months ABVD chemo and 1 month radiation of whole abdomen to lower jaw). I have severe under active thyroid, fibromyalgia, IBS, PostTraumatic Stress Disorder, Depression, Insomnia, I don't produce enough saliva so my teeth are falling apart, and it seems since I hit the 10 year survivor mark things are getting worse. My memory is shocking, when I used to be intelligent, I have no energy, my immune system is shocking (I am always amazed when I survive a winter). I don't know if it helps at all, knowing that there are more and more of us in the same position, and hopefully as the numbers grow there will be changes, but it doesn't really help the here and now. I, too, cannot hold down a job, always too ill, and it has had enormous strain on my marriage. I was lucky in that it did not make me infertile, but I cannot keep up with my 6 year old. I am not the parent I want to be, I am always in pain, and I take it out on my son and husband, I've got such a short temper and no patience, which makes me feel like a terrible mom, which feeds back to my depression, and it's just one big cycle of self-loathing. The joys. I joined the Macmillan Voices group, and applied to be one of the voices to go to parliament to discuss cancer care, but i didn't get chosen, I am hoping there are more opportunities for us to share our stories. 

xx-Brittania

Thanks for the reply Sally 2002, I find attending MacMillan focus groups helps me as everyone there has problems caused by their Cancer or the treatment so we all get to talk 1 to 1 which is nice, and MacMillan listen to us which is great. Brittania I also think more opportunities fir us all to talk with other survivors would be great, a get together organised by MacMillan would be perfect, the best get together they have is the Cancer Voices conference each yr, if you are a cancer voice this opportunity comes up for you to apply for, so to anybody reading this that isn't already a Cancer voice join now you won't regret it, I've attended conferences, focus groups, taken part in a Magazine article for MacMillan to highlight the need for early diagnosis, so by becoming a cancer voice not only are you helping MacMillan but you are helping yourself and others like yourself. I've had a bad day today my pain has been worse and I've not felt great , I find taking care of my 3 children difficult when pain levels are high and I have wondered a lot if I'm the only 1 that finds being a mum difficult with all of the symptoms and medication so it helps me to know I'm not alone. Sharron x

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