Feeling rubbish

[Eleni]

Hi

I finished my chemotherapy 8 weeks ago and have just returned from the longed for holiday. I think I had hoped the holiday would be a magical cure but in fact i wasn't up to much whilst away and still feel as bad now I'm back home. the break an change of scene was wonderful but I still feel all over the place.

All oncologists are mavericks but mine is definitely one; he has a huge brain and I know I have been in good hands but he upset me with conflicting information; he asked me to consider having radiotherapy after my chemo. This was due to a promising clinical trial in Canada and I apparently fitted into the group of women for whom it could prove useful to prevent reaccurence. I agonised over it but was definitely thinking about having radio as well. I was then informed that it wouldn't be appropriate and that my MDT had disagreed with him due to the rarity of my cancer and the fact that no clinical trial was in place within the UK.

I was diagnosed as 2C but apparently had a rare form which meant that my pathology was sent to the leading expert in UCL for his opinion. It appears that I had 3 tumours which were all independant from each other and so this is apparently 'good news'?! My oncologist shouldn't have told me about the Canadian trial and suggested this extra treatment as it wasn't necessary for me.

I know that is seemingly good news but the conflicitng information wasn't helpful. I also don't understand why 3 separate tumours are not more worrying? How did they appear? Why does that not mean more concern about reaccurence?

and what does that now mean my diagnosis is? Is it still 2C.

I have not had a final blood test and don't know what my CA125 levels are and am terrified that i won't know if it's come back...

I haven't worked during all of this thankfully so that i could concentrate on getting well but now I don't know what to do about it cos my focus has so changed. I have worked since i was 16 and always had stressful jobs; I wonder if that contributed to my getting cancer and so don't want to put myself through it again. What to do though............

In addition, i have pains in my joints and my tendons - is that normal at this stage after treatment? I have a peculiar rash on one foot and the sole of my foot seems to be peeling skin? Gross! what is going on......then there's the usual tiredness still and hot flushes, anxiety and feeling low...........God I feel crap!

Has anyone else had any of this?

[BusyLizzie]

Hi Eleni,

I am so sorry the break away has not had a more lasting effect. I found I did have low moments even when away, but more often than not, I felt 'normal' again.

Hot flushes and feeling tired I also get. I am actually diadgnosed 3c (see my profile if you are interested in more details). I just give in to them both. Laugh about the hot flushes and strip off as much as is decent (making sure I don't get too cold after), and just sleep when I feel tired.

Work I also have the same issue with as you and have done the same as you stayed off until I think I am in remission. Worked since I left scool as a software developer, got stressed etc. No point in looking at whether this caused it though...some things we will never know. I am still deciding what to do, I do have long term sick leave insurance, and so if I don't get into remission and have to have more surgery or chemo then will probably carry on with that. I was at CA125 of 90 after chemo #3, but after chemo #4 I know it has raised to at least 106.

I think you need to meet with your oncolgist or surgeon again to find out why 3 separate tumours are better (do you have a nurse specialist as she may be easier to talk to).

You didn't say which chemo you had, but Taxol definitely can cause aches and pains. I would also talk to your GP about your rash.

Please don't feel alone with this 'crap', come back and talk to us. We all have our lows but hopes as well. Make sure you have lots of things to look forward to in the short term. I look forward to a glass of red wine with my meal as a treat one week after chemo when I am off the tablets. Also I am getting into dark chocolate rather than milk chocolate as that is supposed to be better. Also give up sugar in coffee and am become a conisseur of green tea. I have lots of nice clothes and a great wig, so I try to make sure every day I try to get a compliment from a neighbour or friend or at least feel good when I look in the mirror. I am also looking forward to a break in Sotland just before chemo #6.

Look after yourself, and I hope you find some good things to look forward to and some help with the issues and physical issues you are dealing with.

Love Lizzie

X

[Eleni]

Hi Lizzie

Thank you for your kind words. i do have a nurse specialaist and think I'll ring her as you suggest. I have also made an appointment to see my GP about the joints and tendons. I only had carboplatin and they did say that they didn't think my body was coping with inflammation very well so i'm taking anti inflammatory tablets but maybe need something else too.

I think I'm just stsruggling with processing all that has happened and trying to establish where I go next...all whilst not feeling up to much still. I know I will get there and thank you for your help.

[BusyLizzie in reply to Eleni]

Hi Eleni,

It is a huge amount to process. Just when I think I am Ok about it all, I end up feeling very down. I think my plan is to get into some kind of remission before even thinking of going back to work, have lots of breaks, try and be as positive as possible for as much of the time as is possible whilst making sure the practical side is taken care of if the worst happens.

Please do keep in touch and let us know your CA125 (if you want to) when you get it.

Love Lizzie

X

[wendydee]

Hi Eleni,

Just to let you know I'm thinking about you, hoping you get some clearer answers soon. I totally agree about the role stress may play in our development of this disease. I've long been convinced that several years of stressful job and 70-hour weeks compromised my immune system so the cancer could begin to develop, but we'll never know ....I also agree about contacting your specialist nurse. They seem to have a much more humane approach than a lot of the consultants and oncologists, and they have more time to find out what your needs are. I totally trust the one I'm linked with.

Hang on in there! I agree about the little treats, it cheers you up and makes life feel more bearable when you have something to look forward to each day, even if it[s a foodie/drink treat and a walk outside.

All the best with finding what the best next stage is for you

Love, Wendy xx

[Hidden]

Hi Eleni,

Sorry to read about your problems; but just wanted to let you know that I suffered from aching joints and tendon strain for months after chemo. It was something I just decided to work through and ignore, but it is only now (2yrs 2months after finishing chemo) insignificant - I can't say it's gone away completely. The magnet made the most impact on it for me. I don't know how much was chemo damage, and how much menopause, (probably six of one and half a dozen of the other).

Perhaps the separate tumours were seen as good because they could be clearly defined and removed? An oncologist told me at my last check that large clear 'lumps' are good for the prognosis (in his experience).

Very best,

Isadora.

[Eleni]

Thank you to everyone form their support and to Isadora for reassuring me that the tendon and joint ache is not unusual; I was beginning to feel like a hypochrondriac but suspect that having cancer makes you a bit of one anyway..

I am very concerned about the news that oncology will not be doing CT scans or blood tests in my follow up appointments now but 'asking me how I feel' at clinic. It seems totally insufficient to me; I didn't know I had ovarian cancer before and it's going to be down to me to monitor my body to alert the medics. I don't know how i move on with that as the fear of reaccurence will be with me all the time.

[Hidden]

Hi Eleni,

If your ca125 was a marker for you (if it reduced markedly after surgery and during chemo), it is worth having it checked yourself. Your GP should be happy to do this for you every 3 months for a couple of years, and perhaps every 6 months after that. Mine left it to me to go to the practice nurse whenever I felt I needed it checked in the early days - that was about every 2 months to start with. It just lets you relax for a few weeks or months, and recognise that not all pains are returning cancer. Your GP can also send you for a scan if there is something to explore. The test itself is relatively cheap (about £20), and the benefits for you in terms of peace of mind are massive.

Your GP is as important in your after care - especially if you have a long period of remission or dare we suggest, even cure!!

The other benefit is that the staff at your local GP become involved and start rooting for you, which in itself is a boost to morale and therefore health.

Very best wishes,

Isadora.

[AngelaAbell]

Hi Eleni. Other ladies have given useful feedback on most of your questions but I wanted to pick up on the feet issues. I finished my second round of chemo 6 weeks ago and am still dealing with rashes on the feet and legs and my feet permemantly shedding skin. My husband massages my feet every night with suitable moisturiser and i wake up with smooth feet. My lunch time i am shedding again. As you say - gross. The oncologist and demertologist say it is side effects of chemo and will eventually sort itself out so meanwhile I am enjoying the nightly foot massage as a benficial side effect. The rash is a bit more annoying as it itches!

I hope that you begin to feel better soon but I know that it does take longer than you hope to get through the shock, the fatigue and disorientation. Hang on in there and enjoy the occasions when nice things happen. You will find that you gradually enjoy more and more.

thinking of you

Angela

[HelsW1]

Hi, I do have hot flushes though I've ben lucky and can sleep through the night. this I am sure is due to accupunture. My oncologist recommended it and I started with a free course from my local Maggies Centre and when then finished I went private. I still get flushes during the day but I can sleep all night which really helps. Another aid is a chillow, recommended by Maggies, its about £27 and can be bought from chillow.co.uk/ or amazon, it keeps you cool all night and is placed between your pillow and pillowcase.