Thanks so much. It’s a big milestone.
I cut my hair short too before chemo. It’s a smart move. Growing it out is interesting. It starts slow and then ‘boom’ it starts filling in really quickly. I finished chemo in May and stopped having my hair fixed in July and stopped wearing my hair apart from at work by mid August. I’ve trimmed mine a lot since I finished chemo. I’ve kept it really neat. It’s just out of a pixie and almost a short bob now.
There will be hilarity amongst the treatment too btw. I was naughty and ate a few veggies. They can tell. It creates wind and they can see it. you have to go and fart so your bowel is in the right position for RT. So don’t be naughty and don’t eat your greens!
Joking aside yes they give you a low residue diet sheet. It’s pretty straight forward but a bit boring. You can eat meat, dairy and carbs. They also give you advice on how to cope if you’re not lucky like I was. I bought loads of Imodium in preparation.
Keep active, keep social and try and hang on to your normal life as much as possible. Treatment will be over quicker than you know.
Welcome to the group none of us ever thought we'd ever be in. I'm sorry for the reasons you find yourself here. It's a lovely, supportive group and one I wish I'd found much earlier in my cancer journey.
A cancer diagnosis is hard to take in. Being told you will need further treatment is another body blow. I had surgery and needed adjuvant chemo and radiotherapy. Chemo was tough but doable. A friend is a chemo nurse and she says most people cope with it much better than they anticipated. If you are given the carboplatin/paclitaxol regime you'll find that any side effects are cyclical so what you get in round 1 you'll probably get at roughly the same time in the following rounds. I was never actually sick thanks to anti sickness drugs and ginger biscuits though I did come close to it once or twice. I did get some joint pains and pains in my wrists and legs in the first few days of eac cycle but these were just about manageable with paracetamol and ibuprofen. Peripheral neuropathy affected my fingers and toes - it's improved a lot since comp,sting treatment 2 yrs ago but I do sometimes still feel pins and need,es in my fingers and toes plus I feel the cold a lot more than I used to. If you show any signs of neuropathy tell the team straight away so they can monitor it and adjust the dose if necessary. I also had "chemo brain" ( forgetting words etc) towards the end but that did clear with time. Fatigue was hard - I found it frustrating not to be able to do everything I wanted to do - you quickly learn to pa e yourself and family and friends were great at planning things for my "good days".
I had 6 cycles of chemo between Sept 16 and end of Dec 16 - each 3 weeks apart. In the January I met the radiotherapy team, had a ct planning scan and then started 5 weeks external radiotherapy from Feb to March 17. I got tired very quickly, partly because I was still tired from the chemo. I had one or two minor bowel issues that were well controlled with Imodium. I've since developed a sensitivity to garlic ( really makes me dash to the toilet) and I find high fat or rich foods can sometimes have a similar effect. My gynae-oncologist says it's due to the radiotherapy. So far it's not caused too many problems - I admit I choose more carefully off the menu if we go out to eat and I always check where the toilets are just in case.
The best advice I was given was to take things a day at a time and to concentrate on the immediate - so concentrate initially on your recovery from surgery, then on the chemo and so on. Plan some treats. Do the things you enjoy when you can. Looking back it was a hard 8 months of treatment. There were days when I felt very down, stressed and anxious about the future, but there were also days filled with laughter, friends, and little things to be thankful for. We tried to keep a positive outlook throughout and my family and friends took our lead. I've made lifestyle changes, started doing new things (learning ballroom dancing, relief admin work for a local hospice ) and spend more time with the people I love and doing the things I enjoy. The good days now outnumber the bad and I've just been promoted to 6monthly checks for 3 yrs. Life is for living and I have lots to look forward to.
Feel free to ask any questions- happy to answer if I can. Take care x
That was very helpful. Great that you have been promoted and are getting better as time goes on , and adapting from what you have been through and learned. It does make you think about what you prioritise and how you spend your time doesn't it.
I have started trying to make healthier lifestyle choices. I had funnily enough started a few weeks before my tests and diagnosis, doing Couch to 5k, which I carried on during the time up to my op. Now trying to get in the habit of a Mediterranean diet/Tom Watson technique ( heard him on the radio the other day explaining how he got fit etc).I expect I'll have to adapt that quite a lot when having my treatment , but maybe a good starting point and to return to later.
I will take it one step at a time, as you advise.
Take care x
Saw my oncologist today. The plan for me is external radiotherapy, Monday to Friday for 5 weeks. Not the internal version. He said chemo was an option, and talked me through the considerations. If I have understood correctly, the chance of remote spread outside the pelvis for me is about 5% ( microscopic pelvic spread risk is higher, hence radiotherapy a no brainer.) So the chemo would be to deal with that 5% risk, if I decide to take the downsides of chemo for that benefit. I think I will have the chemo. 5% seems enough to me to be worth it. So it's 2 weeks for planning and prep for the pelvic radiotherapy, then 5 weeks of that, then the chemo. Haven't discussed how many chemo sessions yet as he's left it for me to think about.
I have the impression from posts on here that most people seem to have both. I think I'd rather do that, as in, throw everything at it.
Anyone else been through that decision?
Yes I made that decision. I decided to do everything because I wanted to give myself the best possible chance of not getting a recurrence. I don’t regret doing chemo.
CHemo is doable. You get very well looked after. Everyone’s experience is different but I was ok with it and it was much more bearable than I thought it would be.
good luck with your decision
That is my perspective too. Would not like to have any reason for thinking I didn't give it the best chance. Or rhe worry of thinking that aspect of risk has not been addressed. Will be going for the chemo unless something comes up that I haven't considered.
Glad you found it do able. That's reassuring . I know that doesn't apply to everyone and it could be otherwise, but that's the risk I'd be accepting.
Thanks a lot x
I felt exactly the same way. I took every opportunity to stay well ideally or to delay things as long as possible because new treatments are being developed all the time.
I know in the grand scheme of things it’s minor but I’d highly encourage you to think about which solutions to go for regarding the hair. I was prepared and had done my eyebrows and bought really great hair but it still came as a shock on the day when my hair started to fall. For me it was a bit about vanity but it also has the potential to change the way others see and treat you as a ‘sick person’ when you actually might be lucky and feeling pretty well and the hair is the only thing that’s visible to others.
I’m a year out now but went wig free pretty early - about 10 weeks post chemo once it had filled out. So it’s not long - I wore it for maybe 4 months in total.
Oh and book yourself onto your local free ‘look good feel better’ course - the swag bag was insanely good and you might as well take advantage!
If you want to chat about hair and beauty during chemo I’m open to that conversation. It’s not everyone’s priority but that stuff helped me feel good during treatment.
Good luck and fingers crossed you’ll be well and out the other side of treatment in no time.
I think I will regard the hair and beauty stuff as a good morale booster. I haven't worn makeup for years, except a bit of tinted moisturiser, but I do feel the hair and nails are important to wellbeing. So I think I will sort out a wig that I am happy with and maybe take the opportunity for a further style experiment or two.
I had not heard of the course, I will look for that thanks .
I had my meeting with my oncologist on 22nd May, have decided to go for chemo as well as external radiotherapy. I have my planning appointment on 30th May, and have been told I will start radiotherapy on 10th June ( 5 days a week for 5 weeks). My surgery was 15th April ( abdominal not keyhole). So that makes first radiotherapy 8 weeks and a day after surgery.
I am going to have cisplatin twice during radiotherapy, then carboplatin and paclitaxel after the radiotherapy has finished.
How does that time from op to radiotherapy and chemo compare with other people's?
Its easy to find information about the two types of treatment and the pros and cons, but not about time between op and follow up treatment.
Any information from others experience would be appreciated. Thanks.
My daughter had chemo and radiotherapy after an operation for breast cancer 6 years ago. They said they were throwing everything at it because of being young(37). I don't know what kind of chemo she had, but it was about 6 weeks after her lumpectomy.
Although she is naturally dark brown hair, she decided to buy a blond wig!!! I don't think I ever saw her in it!! She decided a wig was too hot, and wore scarves fastened round her head. One day the 18 month old child escaped out of the front door and my daughter gave chase without thinking. They came back about an hour later having been to the local church fete, no scarves on, nothing!! My daughter said folks could have her as she was, or not art all!! If you look around there are a lot of women with very short hair and I can never tell if its the result of chemo ,or fashion!! I have studied this!!! She went around bare headed from then on.
She also went on that course,' Look good, feel better', and at the time it gave her a much needed boost. All the best xxxxx
My regime was a bit different in that I had surgery, then chem, then external radiiotherapy. Had surgery end of July 16, started chemo (6 cycles carbonation/paclitaxol) mid Sept 16, finished chemo end Dec 16 then had 25 fractions external radiotherapy over 5 weeks from beginning of Feb to mid Narch 17, so all in all 8 months worth of treatment with roughly 5-6 weeks between surgery and chemo, then 5-6 weeks between and radiotherapy. Whichever way you do it, it can be tough going at times but it is doable. Top tips would be rest lots, eat well (lean protein for cell repair) drink lots of water (flushes our toxins, helps cells to repair and helps combat fatigue), ginger biscuits/ginger tea for nausea and pace yourself. Save your energy for doing the things you enjoy, make sure you plan on treats for the good days and don’t feel guilty if you need a sofa day. A little gentle exercise every day is great - I managed a walk most days, though it was harder towards the end because of the fatigue. The lovely daloni would say these are the days when you need to get in touch with your inner slob and I agree with her. Concentrate on one day at a time and don’t be shy about asking for help if you need it, whether it be from your family, your medical team or us. Gentle hugs - you can do this!
I will follow your advice. I have put ginger biscuits and ginger tea on my shopping list. I had no idea those help with nausea.
I am being a teeny bit obsessive about the suggested radiotherapy start date, which is my first adjuvent treatment , being 8 weeks and a day after surgery. I found a passing reference to that timescale being ok for uterine cancer, though 6 weeks seems to be the general gold standard. Past that now anyway, so wondering whether it's worth trying to pressure them to move it forward a week, ( so 7 weeks) but my planning session is a Thursday so I guess the following Monday would be pushing it.
Surgeon says that start date is fine. I need to do some trusting I suppose. Not good at that.
I shall divert myself with shopping online for a nice wig and turban, and deciding whether to go even shorter with the pixie cut.
Thank you for your support. Hugs back to you x
Thought I'd get a wig, a turban, and see how it goes.
I will look for that course.
Thanks. You too. xxx
I thought I would warn you about how my daughter was, although I think everyone is different. She was pretty ill for the first week, and found staying mainly in bed helped the nausea. She was on medication for that. I remember once she came down for tea, went very white, and said she would have to lie down!! I also remember her living on ginger biscuits!! She found little meals, very often, helped her.
The second week she was better and well enough to potter around. The third week she was back to normal, but then it started all again!! I found it tough watching her, especially with a young child, but we were always there when her partner couldn't be (he works away a lot). She had a cold at one point and was kept in hospital for a couple of days (standard). People were very good and didn't come near her with a cold or anything. She was meticulous at wiping door handles, and surfaces with wipes. She was very hot on hand washing when you came into the house from outside. But, it all paid off!!! xxxxx
Do ask your CNS whether you're entitled to an appliance prescription which you can use towards the cost of your wig. I think I got £60 or £70. I had to go to a specific shop and could choose from certain wigs. The shop staff were used to dealing with ladies who had lost their hair through chemo and through alopaecia. They had a private room which you could book if you didn't want to be in the main shop area. They gave lots of help and advice on colour, shape etc. My second wig was much nicer than my first. I chose to pay more and got a lace fronted one, which was slightly cooler and meant any parting in the wig looked completely natural. The staff were fabulous, the first time they took photos to send to my daughters to ask their opinion and even allowed me to FaceTime them with my final choice. They gave great advice about aftercare too. Top tip, if you regularly wear scarves, neck length wigs will rub against them and eventually show signs of wear. You can have the ends trimmed slightly but not often. I'd suggest at least trying some on in a shop first . The second time my daughters were able to come with me so we made it a day out, with girly lunch and some laughter. If you can, try to choose before you lose your hair completely as that way the stylists can try to match your own hair colour /style if that's what you want. I went in light brunette and came out fair blonde as the colours were more flattering! I honestly thought originally that I'd just rock the scarf and statement jewellery look but when it came to it, I couldn't, I needed to look as much like me as possible and to be treated as normally as possible by others.....does that make sense? We're all different though and I agree it's a good time to learn to use makeup if you haven't before (I hadn't) and to experiment with jewellery and scarves etc too. xx
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