It took me almost 6 weeks after being diagnosed, before telling anybody. it was coming up to Christmas and I didn't want to spoil anyones holidays, so just kept it to myself. It was the most difficult thing ever......... But when did tell people I had a mix of reactions, from tears (from family) to tremendous support from my work colleagues. I haven't worked since January, but people still phone me to ask how my treatment is going and how I'm comping. It makes all the difference to know the support is out there. ... View more

Hi Ben, Thank you for your message. I have oncology and consultant appointments this week, so hopefully will find out what the next step is going to be. It's odd, because I feel well in myself, apart from the fact I get so exhausted soing the simplist of things. With everything that's happened, I thought I deserved a treat, so have taken delivery of my new hot tub and am looking forward to getting a lot of use out of it, whilst I can. Mystery ... View more

It sounds like your daughter could do with some food supplement drinks to get her weight back up. I have been eating but mainly from boredom. Luckily I had a lot of weight to lose before getting sick and only lost a stone and a half during my treatment. I'm only snacking though. if her weight is too low, they won't operate, as it will make recovery more difficult. So maybe try to get lots of high colorie foods into her, like cakes and chocolate.......... Yes, I do have mucous discharge, its a yellowy/green colour sometimes more pinky. I've had swabs taken and they said it was infection, but antibiotics haven't cleared it up, so can only assume it's coming from the tumour. I did think of something yesterday after I replied to you. It's probably best to tell the doctors of her bladder problem as I was told that the bladder was one of the first place the cancer would spread to as its in such close proximity. If nothing else, rule it out... I've found that my glands seem to be swollen a lot lately. The ones in my neck. And they're quite painful. Its odd, but 2 years before I was diagnosed, I spent ime in hospital as my neck swelled up so much I had to have IV antibiotics. It didn't work and toook about 3 months to subside, but doctors never did find out what caused it. Just said it was a compromised immune system. Your daughter is lucky to have you looking out for her. Unfortunately, I live alone. My husband passed away 6 years ago from mouth and throat cancer (never smoked a day in his life). I do have children, one of whom lives close by. But he worries a lot about me, so I hold back on what I tell him. And my daughter has just had a baby, so don't want to cause any more worries for her...... ... View more

Thanks for getting back to me. I've just had my meds changed too. Am on 50mcg patches and also on voltorol, which is just keeping things under control. I do sometimes have problems with my legs giving way, like someone has hit me across the back of my knees with a baseball bat. So that and the incontinence, stops me going out as much as I'd like, and work is out of the question. I did have bladder problems a couple of months ago. Like cystisis. It was really painful to pass urine and at other times I couldn't pass any at all. I thought my kidneys were packing up, but after several doses of antibiotics (for other things) it seems to be much better now. So tell your daughter, it more than likely to be a bladder infection. I've had my MRI but have to wait until the 8th June for CT scan. Then I don't see the consutant or oncologist until 21st and 22nd, which seems such a long time away, as I'm pretty sure the MRI showed something, as they questioned me on how soon I'd see my consultant. I'm fairly sure the tumour is growing as my temperature is up and down, with sweating. I was like that before my chemo and radiotherapy. Anyway, there isn't a lot I can do but wait and hope they'll get me in for the colostomy towards the end of June. Is your daughter still refusing surgery? ... View more

Hi Rachaeljane, Thanks for your contact. Yes, I know how worrying everything is. Luckily my doctors have been brilliant about pain relief. I am using Fenanyl patches, which only need changing every 3 days together with voltorol and oral morphine, if I need it. I find the lower back and leg pain the most problematic, as it makes it difficult to walk any distance. But if I keep on top of my medication it's ok. What pain relief is your daughter on? Are there any local support goups near to you. Where I live in the UK, there is a centre near to the hospital, which supports those with cancer and their friends and families. The hospices also have day centres where pople can go for that extra support and to meet others who are going through similar problems and receive counselling if they wish to have it. How has your daughter come to terms with her colostomy? Perhaps she should consider further surgery with the help of counselling. She is young and it will allow her to get her life back to some normality. I'm happy for you, and/or your daughter to contact me privately if you wish, since our problems are so similar. Mystery x ... View more

Hi Rachael, I understand what you and your daughter are going through. I was told 3 weeks ago that my tumour was still there and was booked in for more scans. I had to wait 3 weeks for my MRI which I had Friday, I now have until 8th June to wait for my CT scan and then for results. Due to the long wait for scans, my consultant won't be seeing me until 22nd June. I'm terrified that (knowing how fast the tumour grew before) that the tumour will be too big to be removed by surgery. I am also waiting for a colostomy operation, but the consultant said he wanted to wait for scan results, so that any other surgery could be carried out at the same time. I am very worried that by the end of june, I will be offered palliative care only. I've been trying to prepare my son for the worst, hoping it won't come to that. Mystery x ... View more

Hi Rachaeljane, I just read your blog and wish your daughter all the luck in the world. Where do you live? I live in the UK and was diagnosed with anal cancer before christmas. They didn't classify my tumour but by the time I began treatment the tumour was 10+cm ( I would class that as grade 4) The tumour was fast growing and involved my anus, rectum, perineum and the lymph nodes in my pelvis, which sounds similar to your daughters cancer. I was told that surgery wasn't an option for my type of cancer and that combination chemo and radiotherapy was proved to be successful. The only worry was the size of my tumour and the lymph nodes (which were out of the area of the pelvic radiotherapy.) I was started in combined chemo and radiotherapy within weeks of being diagnosed, but during those first weeks the tumour continued to grow. I was on strong pain killers from the start and still am. Within days of the radiotherapy starting I noticed the tumour on my perineum get smaller and soon disappear, so I felt positive that this treatment would work. I am now 7 weeks post treatment and found out a few days ago that a substantial sized tumour remains. I am clinging on to hope as the oncologist says that radiotherapy can continue to work for up to 3 months following treatment. It will be around that by the time I have surgery to create a stoma, so I'm hoping that the tumour will have reduced enough for them to remove it by surgery. I've been told that due to the vast amount of radiotherapy received, having more, wasn't an option. I wish your daughter well and would have thought that chemo and radiotherapy would come unter the umbrella of paliative care. Although I have a lower than 40% chance of survival, I'm glad that they offered me the treatment they did. ... View more

Yes, unfortunately it is. Consultant says it depends on if the cancer has spread anywhere else, and the size of the tumour. So, it's just a waiting game at the moment. ... View more

Hi Maddie86, Thanks. I've known that a colostomy was on the cards, when I was first diagnosed, due to the extent of the tumour. But I wasn't expecting the tumour to still be present, so am more than a little concerned as to what the future holds for me now. ... View more