Hello all , just to say ime of to oncology tomorrow morning , I had the half way staging scan last Monday .

[Elft63]

Ime hoping she will discuss this with me tomorrow .. My PICC line is being changed tomorrow as it flushes but wont give blood . Which they will need to check if ime fit for chemo Tuesday . as I said in my last post I've only just recovered from the last . I managed some walking yesterday but it makes my legs hurt and I get a tightening pulling pain round my middle ( very unpleasant ) have any of you had this sort of discomfort .. I had my debulking on may21st but did have massive surgery with incision from breast bone to pelvic bone as ppc had spread to diaphragm.. I wonder if I will ever walk any distance again .. x love Elaine xx

[Hidden]

Hi Elaine,

Unfortunately some of us find we get lots of very unpleasant side effects with chemotherapy .It can be a very difficult time.

Try to keep reminding yourself that you will hopefully benefit from the treatment.Take small steps and don't expect too much at once.I found it helped if I had something pleasant to look forward to-I still find that LOL.

I am sure you will feel better once you have got through the chemotherapy.

I hope the PICC line gets sorted out.

Take care.

Love Anne x

[Whippit]

Dear Elaine

I hope you get some good news tomorrow from the mid-way scan. Your side-effects sound really awful and it must be very depressing not to feel you can walk with comfort.

I'm absolutely sure you will feel better in time and this current difficulty with walking will improve. You must've had a massive operation. My friend had the Sugarbaker Technique when they basically take out anything you don't have to have to survive. Her recovery from such major surgery took nearly a year. I bumped into her walking her dog in the park this afternoon - 2 years on from her surgery and she doesn't have any pain these days.

I hope you find yourself in the same place.

love Annie xxx

[Elft63 in reply to Whippit]

There is a name for the surgery I had .. I've often meant to ask , it took 9 hrs and I believe because of the ppc they did remove anything that it had attached itself to .. That was my 3 rd operation in 4mths removal of ovaries in feb .. Removal of Fallopian tubes and biopsies in April ... The op in may was massive and I was in critical care for a week then on award for another .. I was ventilated for 3 days .. My poor family .. They removed a ligament that runs behind your stomach so I wonder if the pain is caused by muscle damage ? .. It's been and still is a hard journey .. Elaine xx

[Whippit in reply to Elft63]

Hi Elaine, that does sound rather the same as my friend. She was told it was only available at the Basingstoke and North Hampshire Hospital or The Christie in Manchester. You description sounds very much like her experience of a week in critical care and another week in a small ward for 2 women where they had 24 hr attention. She was told her surgery was the biggest procedure in the whole of the UK that day. I think it was about 10 hours.

It might be worth asking someone to write down exactly what treatment you were given. There may be other techniques that are similar. I know my friend must not be given morphine and the local hospital here in Cardiff nearly killed her a year later because they didn't check her notes and gave her a shot for a broken hip. It would be worth knowing what you had done.

No wonder it's taken a time to heal. My friend was at least a year before she could move about without discomfort but she's thrilled to bits she had the chance to have this surgery as there was no other treatment for her rare abdominal cancer. Do you still have follow-up appointments with the hospital/surgeon who did the procedure. They might be able to let you know how long it is likely to take to recover from such major surgery.

Loads of love xxx Annie

[Elft63 in reply to Whippit]

My surgeon was the renowned rare womens cancer surgeon miss Katherine Hillaby .. She was trained in London and has wrote many theaseas on women's cancer . I was given a discharge note from her that stated she had done 13 procedures ... I was told by my gp that my operation was massive , I had over 100 staples , to be fair Annie I hate looking at my stomach , it terrifies me still .. I have counselling at my local hospice once weekly. This is a massive journey for me .. So I think this site will help , to know ime not alone .. Love Elaine xx

[Whippit in reply to Elft63]

Oh dear sometimes doctors give too much information don't they. I don't know how many stitches or staples were used in my surgery. Nor did I ask the size of the tumours and whether they were grapefruit or footballs. As far as I was concerned they were better out.

I think it's a great idea to have weekly counselling so you can look in a more positive light at the surgery and your poor embattled tummy. Mine's so criss-crossed with battle scars I've given up worrying but then I don't tend to expose it much these days.

You're certainly not alone - you're not alone in having a lot of surgery and not alone in feeling worried and unhappy about what has gone on so far. I know you'll get lots of support here on the site and that will be a great help.

Love Annie xxx

[wendydee]

Hello Elaine

After such major surgeries and chemo, it's not surprising that you feel rotten. You possibly need to ease up a bit and allow yourself more time to just take things easy and heal. The tip about having little treats to look forward to is a good one, even if its just putting on a beautiful piece of music and sitting with a cuppa, watching the birds in the garden. Maybe a pedicure or a foot massage if you can be bothered to go out and get it done......You deserve some serious pampering after all you've been through. I really feel you will come to a better level of comfort, especially with the help of your medical team. It's early days yet........the counselling will help to come to terms with what has happened to you. I think we all come to love our battle scars in time. I have a fairly ugly one too, but its a badge of honour to me, and it did a good job at the time

Do keep posting on here. You have a ready-made group of friends who can empathise with a few of your feelings.

Good luck for tomorrow

Love Wendy xx

[iamstillme]

I Elaine you poor thing. You have had lots of surgery in such a short space time and the last one major debulkimg which is major and did not go according to plan. I too have a scar from top to bottom and my tummy is a wee bit askew( my front bottom I call it), but the scar has faded and I braved wearing a bikini on holiday and wore my scar with pride( see what I've been through and here I am able to enjoy my hols). Hopefully you will feel like this too. I feel some bio oil helps and a tan( went for a few sun beds)helps as hey what can happen o may get cancer !! The pain will settle and I am sure the pulling is all the muscles knitting together and your body doing its job but do let them know about it. . Hopefully your counselling may help. It is hard as life for us all is probably never the same again and not the one we may have picked but for me as long as I am able I will take all the treatment offered if needed until my quality of life is not one i can cope with. It takes time to get over surgery alone as well as the surgery and I felt it took a good 6 months before I could start proper exercise( now walking again parts west highland way etc) so stay positive it will come. Please keep talking with us here and posting as we can all empathise with how you are feeling. Best wishes for tomorrow.

Love

Ally x