greybadger's blog

feeling better

2011-08-02T19:59:20Z

Well folks we have just returned from a few days away in out motorhome to celebrate another wedding anniversary. We thought I was lucky to get to 40 last year! We met up with some of the friends that were with us when we had to leave our last meet because I was so poorly. They were absolutely amazed to see me walking, and with quite a lot of hair after their last sight of me 8 weeks ago.

We've had a lovely time in the sunshine, and today we even went in the sea for a swim. Gorgeous.

may the progress continue so I get to see my lovely new grandaughter Maisie born in Los Angeles last Sunday.

We've come home as I'm off to visit the Penny Brohn Centre tomorrow and then we are off again until i have to come home for treatment next week. Her's hoping the good weather continues.

it must be working...

2011-07-20T15:08:59Z

well everyone, this week has been my local hospital chemo week. Definately better than a 30 mile round trip!

Saw the onc monday morning, after having my bloods done earlier. I actually went in early for my appointment and they were amazed at how well I looked. When my specialst nurse came in she couldn't believe it. 4 weeks ago she was pushing me round in a wheelchair. The results were ok for my treatment on Tuesday, but No ca125 results, but onc said they could give them to me during treatment.

tuesday was not quite so straightfoward as I hoped. An early appointment meant the treatment wasn't ready, and when it came in a glass bottle it was difficult to administer. The nurse tried a few times, by which time the cannula was uncomfortable, so the sister came and started again - success.

I had asked the nurse for my cA125, so she went on the computer and she called across, do you know what it was last time ( yes -1960), do you really want to know she asked grinning from ear to ear - 554! What an amazing result, down by 75% after 1 treatment. I am hopeful that we may get somewhere this time, and have started booking things in my diary again!

Ps ca125 is the count used for ovarian cancer - normally it should be under 20!

two hospitals is complicated.

2011-06-29T15:50:27Z

Well folks, in the post today I had my next appointment for chemo, at my LOCAL hospital! The oncologist had insisted that it could be done there, but the staff were not so sure..... as the onc was so sure my specialist nurse tried again, and spoke to the chemo ward sister, and the pharmacy dept. There was some of the drug in stock, but outdated as it hadn't been used in so long. Good job I went 'long distance' for the first treatment. That was another story altogether. 2.30pm appointment, went in at 4.30, and finished at 6pm (then slipped getting into the wheelchair, so they wouldn't let me out until they were convinced I was ok. left at 6.30pm!

My breathing has improved considerably - I had Shiastu last Tuesday and she concentrated on my chest, and I came out a lot better, and the next day it was fantastic. The infection has now obvioulsy cleared up as well, so the fluid is now in the stomach cavity and causing discomfort. I just hope the chemo will drain it off, otherwise I will be back having a drain in. With changing hospitals, of course, the dates change, so it will be nearly 4 weeks between treatment so I am hoping it doesn't get too bad before then.

At least I've been out today - some friends collected me and we went to a local garden centre for coffee. It was nice to get out of the house for a little while. When I got back there was another friend pulling up, so lots of talking today! Cancer support group and reflexology tomorrow. so perhaps getting out and about a bit will help as well.

5th line

2011-06-07T20:03:41Z

Well, I've been home since Friday, when the hospital let me out after 24 hours of intraveneous antibiotics, as they had noticed my blood counts going up. I'm sorry to say i am coughing more than ever and wonder just how bad I would have been if they had let me out Thursday without noticing, having had chest infections before. My nurse contacted me today to say I've got to travel for the chemo again as they can't give both drugs locally, and the op they were supposed to discuss yesterday never happened, so has been postponed until next week. Not such a good day... The on;y good thing is the contact from the hospice, which can't do enough and are visiting tomorrow.

This is the 5th line of drugs for my Ov - has anyone else been this far down the line? Where do I go from here?

down hill fast

2011-05-27T17:38:26Z

Well, I know my cancer is fast growing, but this week has been like going down a steep slide, I have got breathless so fast. No word from the hospital, but I shall chase them next week as things have gone so quickly here. Last Saturday I walked round the show at Newbury, but this Friday it is as much as I can do to get up and go to the loo without having to recover afterwards. My chest has been so tight, and I have had pains in lots of different places, I just feel cold, and tired all the time. Any ideas on how to cope until the hospital think I'm bad enough to treat please let me know.

Than ks

Viv

ct scan again

2011-05-17T16:11:40Z

Well, I did think I'd need it early, but the cancer nurse has now arranged an early CT scan for me in view of my raised CA125 results before my last treatment last week. I had the full course anyway, so naturally my body is pumped full of drugs at the moment, and hopefully they have done something short term, but by Friday whatever the problem is had better be on show, or else it will be a waste of time. It took a few days last treatment before I realised things were not quite as they should be, but we are making the most of the time available and going away in our motorhome for a few days, and if the hospital want me I will go from wherever I may be in the locality. It beats hanging around the house worrying about what they might find out - here's hoping for the sunshine down here on the south coast for the next 2 weeks.

here we go again.

2011-05-05T15:41:38Z

Didn't I say my holidays are a disaster. Just come back from my hospital appointment for blood results ready for last session of chemo next week. Last month (the day I came back) the CA125 had gone up 12, this month it has gone up to 617, and that is on treatment! The doctor listened to me saying I thought things were not right, but he didn't have the results, just said have the chemo then the regular post chemo CT scan, come back in 6 weeks. I insisted he got the blood results, and he didn't change the treatment when he saw the results, but he was only a registrar, so is it worth me having 5 days of chemo next week when it is not doing anything? Do I push for an earlier scan, but then the Oncolgist will only say, put off treatment as long as you can. Trouble is I know it is a fast growing cancer, and it could do a lot in 6 weeks.

Where do I go from here?

treatment a week later than normal?

2011-04-11T14:18:19Z

Hi guys,

I've just had a lovely cruise holiday while actually on treatment. The doctor gave me 4 weeks between treatments rather than 3 because the Topetecan I have needs 5 daily sessions and with Easter and bank holidays it leaves 3 weeks when I can't have it. We are doing 2 x 4 weeks instead of 3 weeks and 5 weeks. So.... withtreatment just a week later my CA 125 has gone up slightly from 225 to 239. Is it because of the later treatment or do I conclude that things are not really working properly. I had a tummy bug on the boat, and have had pains since that feel like a blockage, and is more uncomfortable when I'm walking than sitting. Anybody else had a similar problem.

I think I'm going to give up going on holiday as I always come back bad!

this weeks update

2011-03-12T19:01:13Z

I'm very glad to say that all reports were good on Thursday at the hospital. My count is down to 225, and the CT scan shows nothing new, and the old problems are shrinking. I might get a summer holiday if I'm lucky this year. The only down side was my blood count, so 2 bags of red stuff as well as chemo to come this week! here's hoping it carries on doing it's job.

We've taken off in the van for the weekend, met friends for luch Friday, went into town this morning and had family pop in tonight, then off to see an old aunt & uncle tomorrow. Very sociable weekend. (and now it's pouring with rain!)

A week later....

2011-03-01T15:36:28Z

How time flies when you are having daily treatments!

I'm glad to say that when the phone call did come from the Gp (the house was in chaos and my son was on the phone from his holiday in Florida, my next door neighbour had come to see my grandchildren and daughter who had come down for half term) it was to say that the Xray showed a minor chest infection, so she's put me on a course of antibiotics. Hopefully when I have the scan this Thursday they will have worked and it will be a true reading (mind you I don't think CT scans should up infections do they?).

The treatment week was a bit hectic, with the children down here, but I didn't have to many side effects, and then I had a quiet weekend to recover. Hopefully the weather will pick up now as I'm off on the coffee round again this week.

Come on sunshine.

Viv

Problems?

2011-02-20T12:09:48Z

Well, I went to the oncologist on Thursday to check all was ok for treatment on Monday. My count had gone down a lot, so he was well pleased. After discussions about my breathlessness, and the way I was feeling he seemed a bit more concerened, and when I told him my GP had suggested a chest x-ray he told me to have it done. My CT scan request from last month seemed to have got lost in the ether (I know it had been requested for after this treatment, but the scan department say they have nothing requested!) so the onc says he will rush it throught to check my chest/lungs area. But I could book my next 3 treatments as my count was looking so good. All booked as we left.

Went for the x-ray on Friday, and the comment from the radiographer was see your doctor in a week to find out what to do next! Doesn't that sound like there is something on it? I hope the CT scan comes through quickly as my breathing seems worse by the day, and it is as much as I can do to go upstairs sometimes.

Fingers crossed please.

A reason for geting over this hicccup.

2011-02-14T20:46:09Z

Well, another weekend is over, and we are in the week of blood tests and hospital visit to see if the treatment no 3 is ok for next week. I know this treatment is supposed to be milder doses, and the first week, apart from feeling tired I am ok, but now I start having niggles and to feel that the chemo is wearing off and not doing me a lot of good. My hair has fallen out(or most of it). My nurse was supposed to be sorting out my CT scan for after next weeks treatment, but I still haven't had the letter to book an appointment, so it is not looking as if I will get it all sorted before treatment 4 is due!

We did go away this weekend in the motorhome, and met up with friends, which was lovely, but I couldn't do much. Bus ride into the nearest town, walk round and coffee then back to the site for lunch. Sunday it rained all day and we were glad to get home, then our son called from LA and said he'd ring on Skype if we put the computer on..... the family gathered to tell us that our 6th grandchild is due at the end of July, so I will have to get over this treatment so I can go for a cuddle with the baby when it arrives. We all need something to look forward to, and what can be better than a new baby.

a busy weekend

2011-01-30T18:50:31Z

I have been trying to keep myself busy, despite feeling so breathelss and tiring easily. Thursday saw us at the hospital, and my count is down slightly, so a week of treatment again this week. I decided that as the family have been too busy to come down to us we would go and see them all this weekend. I knew my daughter was partying Saturday night, so offered to babysit, and my grandaughters were so pleased, it was wonderful and made my feel worth something again. Mind you by the time I'd got them to bed and done stories I was ready for bed myself!

I suggested we visit my son today, but they wanted a day out, so we all got together in Henley (my daughter and her family, as well as my son and his) and had lunch in Pizza express (I couldn't eat it all), then went to the Wind in the Willows Museum, which the 4 girls really enjoyed. It made me realise just how weary I feel. Is it just because I'm out of condition, or is it the cancer? Whatever, I wish it would get better as I am now feeling depressed, which I haven't felt in the 4 years since I've been bad. My hair is falling out, which is not helping, the leaflets say hair thinning after the 2nd treatment. Mine is coming out in handfuls after 1 - what happens next? I'll ask tomorrow when I'm at the hospital.... at least it gives me something to do all week!

well, the first session is done...

2011-01-16T09:51:44Z

The week is now over, and after 300 miles and £7.50 in parking charges, (not to mention the loss of income for my husband), I'm glad to say I can feel, and others can see the difference in the size of my tummy. I was obviously building up fluid again, and after 3 days it had gone down sufficiently for me to get into my ordinary sized jeans, instead of baggy trackies. It makes you feel better if you can put on something decent. This chemo hasn't affected me too much yet, bit tired, but able and capable, and today a bit muscular achy, but with the weather we have I don't intend doing too much anyway. Mind you I still get breathless when walking, as the growth is pushing on my lungs, but we are looking at short breaks for when this is all over again. Best occupation for a windy january day!

making the most of time

2011-01-08T10:02:11Z

Well, I was right and chemo begins again on Monday, with another different drug, which means the hospital every day for 5 days, which would be ok if it wasn't 25 miles each way! then 2 weeks off. CT scan after 3 treatments, to see what is happening, which means book it after 2 so they can see me before 4! I'm really getting the hang of this now. We went to see the oncologist on Thursday then came away to see friends and make the most of time, but after going out yesterday I feel too shattered today, so I'm stuck in the motorhome feeling sorry for myself while my husband has gone for a walk. My friend I haven't seen for 2 years is actually in a worse state than me, and nobody can define what is the cause of her origin problems, which are now multiplying, but they can't do anything until they know the reason. Do I fell myself lucky that at least I know my problems? Who is better off? Me knowing my fate eventually, or her hoping and praying they can find the cause? Makes you wonder.