Is it me?!

[Eleni]

2 months from finishing chemo, I still have aching joints and tendons, peeling skin on the soles of my feet and a rash. I'm also still pretty fatigued for a lot of the time. My key worker has suggested that it is rather unusual to still have symptoms after such a time. Am I a hypochondriac? It's rather distressing

[wendydee]

I'm sure you are not a hypochondriac, especially with the symptoms you are having. Is there a CNS you can speak to where you had your chemo? Or have a look on the penny Brohn site, they may have a factsheet on atypical symptoms and treatment suggestions. They may suggest complementary therapies to help you to get over it. All the best to you

Wendy xx

[BusyLizzie]

This disease can make hypochondriacs out of the best of us! Every twitch and every pain you can think the worst. I think you mentioned about the feet rash thing before and one of the other ladies (Angela) had the same, so it isn't just you. Can your GP give you something to help with the feet rash? I know it sounds weird, but walking and some exercise can actually help with the fatigue. You may be doing this already, but just thought I would mention it in case you have thought it may make it worse.

Hope things start to improve for you.

Love from Lizzie

X

[Hidden]

Hi Eleni,

I'm surprised that your worker has said this. Chemotherapy is cumulative. There is a gap between treatments because the amount of permanent damage done would be increased if there was not. Treatments often have to be postponed - especially toward the end of the series because it takes longer and longer to recover. 2 months (8 weeks) is a very short time after a series of 6 chemos. Even my chemo-enthusiastic oncologist, when asked about recovery times, said it takes about 18 months to fully recover for most people. I am pretty strong, fit and active and it took me 2 years (and I have continuing problems with anaemia).

I suspect that most people don't recognise the symptoms as chemo related, and are just glad to be out of the system, so don't report their symptoms. I was always so eager to get out of hospital appointments that I didn't go into detail (and I didn't want drugs anyway, which was all they had to offer). As long as the bloods and scans were ok - I was fine.

The aching joints and tendons go on and on - whether as a result of chemo, menopause, or both. I ache much more now than I ever did, and my friends of the same age do not experience as much stiffness, aching and tendon strain. Mine is better (easier to manage) but not resolved.

As for fatigue: having had this disease, you have had a massive existential shock; extensive surgery, months of chemical assault, and huge loss in your personal life. All of these things cause a recognisable post- traumatic shock, not to mention the physical recovery taking huge resources. You feel fatigued because you are exhausted! Exercise a bit each day and challenge yourself a little, but rest lots too, and talk about the shock, loss etc to someone trained to help you deal with it. That really helps move the fatigue, which is often largely a product of shock and disappointment.

Very best wishes,

Isadora.

[Eleni in reply to Hidden]

Isadora

Everything you have written in response to my plea spoke to me.

I am seeing psychological support at oncology now and think it will help.

Thank you so much for understanding though. I only had carboplatin and I understand that is supposed to be well tolerated. I did have to have a transfusion after 4 cycles though as my body was being hit so hard. I guess that could be a reason why I am struggling to get through it too. I will try to be more gentle with myself; I am normally such a determined ansd positive person. It has shocked me how pathetic I feel sometimes...........

Thanks for your support and common sense responses.

Eleni x

[Hidden in reply to Eleni]

Eleni,

I am SO pleased to help.

In my professional life I am (although now largely retired) a senior Psychotherapist. I had run a therapy service for more than 25 years. Upon diagnosis, my allocated Specialist nurse kept saying to me 'you know more about this than I do', meaning more about the psychological side. I had to keep reminding her that (hopefully) she knew more about the disease than I. Actually; I was wrong. I am now much more able to accept that actually the medical team know not much more about MY disease than I do - and I do understand the psychology a great deal better than they. Also, the experience is something you do not understand until you have been through it. In these ways ( those of personal experience) we have to learn from ourselves, and respect our own responses. You'll feel better if others let you do that, and support you. (As will we all).

Bestest,

Isadora. xx

[Eleni in reply to Hidden]

All absolutely true. I have joined the user awareness group in my area as a patient representative (1st meeting later this month and hopefully I will attend). I feel passionately that there is something missing from the journey of having cancer ie GP, surgery, chemotherapy and then???!.

Everyone seems to be left much to their own devices afterwards and there aren't enough therapists to deal with it. Plus of course, not everyone asks for help. I have always thought 'if you have a painful tooth, see a dentist. If there's a problem in your head, see a therapist!'

I am trying to do as previously advised and listening to my body. Yesterday's phone call was a bit of a body blow.When you feel so rubbish, it's harder to be strong enough to 'negotiate' with those who are supposed to know more than you about this disease.

Your professional skills are valuable and we are all benefiting from them on this website.

Thank you immensely

Eleni x

[wendydee in reply to Eleni]

Hi Eleni

I think Macmillan are setting up "survivorship" (weird word!) initiatives in some areas. I'm in Essex and am a member of the Essex Cancer Network survivorship group. The initiative includes on-going issues off health and well-being and we're planning a conference for all types of cancer survivors to see what on-going support is needed. I think there is funding available for initiatives such as this from Macmillan (not sure, but may be worth asking if anyone you know wants to set up a a project) One issue that has come up is the need for peer support groups for teenage cancer sufferers and teenage carers of parents, and the need for on-going exercise initiatives for people who have had a cancer diagnosis.

By the way, I agree about Isadora's skills --she is one wise lady!

Thinking of you and hoping things are getting a bit better soon

Love, Wendy xx

[Eleni in reply to wendydee]

Hi Wendy

I haven't heard about this initiative but will investigate further once i'm back to my feisty self. It sounds the sort of thing I would want to be involved with; the need for peer support groups is needed in all areas isn't it?!

Thanks so much for your help

Eleni x

[AngelaAbell]

Hi Eleni

I am also 2 months down the line after chemo and am experiencing similar side effects to you. The peeling feet are a pain - especially if you want to wear sandles and the rash is uncomfortable and unslightly.. But moisturise my feet daily seems to make a differnce for about half the day.

I do agree with the other ladies about exercise. Despite having a great relectance to get out of bed each day - I could sleep for England - i do feel better once i have been for a walk or done sometyhing active. I now have a few appointments with neighbours to accompany them on early morning dog walking to force me out of bed. I am also comforted to hear that others have found the aching joints and tendons are sill around for a while after chemo. I thought i was developing arthritis as i didn't suffer too much while on chemo but have recently been taking painkillers frequently.

I donlt think you are alone in feeling like a hypochondriac Eleni. Most of us want to get back to being our 'normal' selves immediately after chemo. When i finished chemo last year i learnt that I needed time to recover bodily and emotionally plus a few people to give me the occasional push to stretch myself. This time it has been easier becasue i was prepared.

I hope that you recover your stength and stamina in the not too distant future but in the meantime give yourself time to recover.

all the best

Angela

[pixie]

Hi Eleni

I just want to add to what all the other ladies have said. It isn't just you!

I finished chemo last year in August, with just a little stiffness in my fingers. But as the autumn and winter progressed I suffered increasingly with aches and joint pain. At its worst I could hardly bend my fingers. My finger joints swelled up so that I couldn't wear my rings any more - and I still can't, although for the most part, the aches and pains have gone. I still have some stiffness in my fingers though.

My GP - at my insistence - checked me for arthritis in February, but the blood tests came back clear. The physio offered some exercises, which I think probably did help. But my symptoms eased the most after I was put on HRT (this was checked with my oncologist first to make sure it would be safe for me). So I think for me it was a combination of menopause and the after effects of the chemo.

I still don't have the energy levels I had prior to treatment, but nevertheless I took up cycling earlier this year, and always walk or cycle to work, so I'm getting plenty of exercise. I feel much better than I did this time last year!

So do what you can every day, but don't expect too much of yourself. It will get better in time.

All the best

Gael x

[Meryl]

Hi Eleni

I also had terrible joint problems half way through my second full course of carbo/taxol. My oncologist reduced the taxol dose and I took pain relief which he also prescribed. Within 8/10 weeks of completing and with gently increasing non stressful exercise all of these symptoms had gone but I've never regained as much energy as I would like.

As to the sore hands/feet this is fairly common with some chemo. I'm now on Caelyx (3rd line chemo) and this is a known side effect. My nurse suggested Udder Cream (yes Udder cream!) not available from shops but on the internet - highly recommended. This twice daily with E45 as well every night has kept me virtually free from the soreness. Getting over chemo can be frustratingly slow especially if, like so many women, your used to being on the go all day. Plenty of rest, try to relax about it and be positive about the outcome. Good luck. Meryl XXXX

[Eleni]

I feel very moved - and priviliged to have so much support on this website. I felt very uplifted to find so many answers this morning. Thank you all.

It was my CNS/keyworker that I spoke to yesterday. I got the impression that she thought it was all psychological (maybe it is - but I have physical symptoms too?). When I pointed out to her the previous responses of others on this website, she responded that perhaps I did know more that she did and I suspect that tends to be the case. As Isadora says, most of us are so keen to be released from the hospital that we are not reporting our further symptoms back to the clinicians. Isadora - you are so right about treatment. As long as my bloods and scans were ok, then I was ok and that's how it seems they think now. I have felt rather abandoned by the hospital since finishing my treatment and just kind of 'chucked back into the care of my GP' (who has been wonderful). Your use of the words post traumatic shock is interesting 'cos that's how I've been feeling...

Regarding exercise, I was doing some yoga at Penny Brohn but haven't been able to for some weeks and have cancelled due to the aches and pains but hope to do so again soon. I am sure it will help to release some endorphins and I need some of them!. I do walk as much as I can as many of you suggest - even though I feel like an 80 year old. I see my GP tomorrow and have my first follow up appointment next month so hope to get some further advice and help from them - maybe HRT but I'm not sure I can have that. I am deeply grateful to you all though as it is so reassuring to know that my symptoms are not unusual and that I'm not alone. Thank God for this website!

Eleni x

[Eleni]

I love the udder cream idea!! Whatever next!?! Maybe we could ask Macmillan to arrange discounts for us and stock up. Thank you to everyone. I was worried it was onset of arthiritis but my GP has already dismissed that. I'll keep on keeping on.....

you are all wonderful and strong ladies and i applaud you

Eleni x

[Marianna]

Hi Eleni. Think your caseworker aught to talk to more chemo patients, as it took me about 6 months to actually feel healthy again, in the true sense. The fatigue took the longest . but kepp on in there and your body will recover. Good luck

[Eleni]

Hi Marianna

I agree.......I've realised that the department don't seem to be collating information from the patients once they've finished treatment. I'm collecting information from the net and from this website to take with me for my first appointment after treatment as proof that I'm not making it up! I shouldn't have to do that?!! Thank you so much for your support. This website is so valuable..

Eleni x