Calling all triple negative breast cancer patients in the UK
Comments
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Hello Michael
Raymond and I have just listened to the link you gave and it was very interesting and informative and certainly gave a lot of food for thought. I think everyone on the thread should listen to it.
I found it most interesting to hear the views and experiences of a doctor, an eye specialist and surgeon, who was diagnosed with breast cancer in her fifties. It was interesting the way she went through treatment under a different name in order to be treated like an ordinary patient.
Picking up on a few of the points there was the mention of keeping the body alkaline, which I have read about over and over again.
I was most interested in what she had to say about the simple things that you can do to try to keep breast cancer at bay or from coming back and they are things we have discussed on the thread. Once again, we were back to nutrition and the emphasis on fruit and vegetables in our diet. We can all do this but I sometimes get the impression that some people find this too simple and think what we need is a 'pill'! It was interesting that she mentioned the diet in India, the importance of turmeric and the fact that Indian women and men have a teaspoon of it a day in their diet. They also have only a tenth of the cancer rate that we have.
I picked up on the importance of minimising stress and I do believe that stress is a factor in cancer development.
I think it is so difficult to eliminate stress in our western way of life where people are pushed so hard and there is so much emphasis on career success, working your butt off and worrying about money and materialism.
It was interesting to learn about how important it is to keep our cell membranes healthy and how these can quickly be turned into cancer.
I do believe what she said about the need to laugh and to keep your mood in a better place. We all need to learn to switch off and enjoy ourselves.
I picked up on the mention of a psycho-oncologist. I did not know there was such a profession, although I have always felt that the psychological problems associated with a cancer diagnosis need to be addressed. Cancer is so much more than a physical disease.
I was most interested in what she had to say about chemo brain, although I do not think I suffered much from it. It was interesting to hear her talk about neuro cells being killed off through chemotherapy and how it affects your sense of taste and hearing. I certainly remember the awful taste of food when going through Taxotere. I was glad she pointed out that these senses do recover. I know a lot of women on this forum have posted about chemo brain and forgetfulness.
Apart from the lifestyle factors contributing to cancer, I was glad that she spoke about environment and all the toxins we are taking in from our environment.
I think, like she said, we are taking in toxins through our household cleaners and toiletries. She mentioned the dangers of parabens which seem to be everywhere in our toiletries. It was most interesting that she pointed out that parabens was showing up in women with breast cancer and that the only way they could have got there was through the skin through creams and that we need to find cosmetics that are parabens free and also sulphate free.
She mentioned that in the USA there is no regulation for these cosmetics. I think that it is probably not much better in the UK even though we have all these regulations from Europe. I am always reading labels and find parabens everywhere. In addition we have lauryl-sulphate in toothpaste and shampoo and it is this that makes these products foam. I shall probably be doing some more label reading today, although I use very little in the way of cosmetics and cleaning products. I am someone who believes in minimal for everything and I go into shock when I see programmes about hoarders. I think hoarders are in denial about their mortality.
Talking about mortality, I was interested to hear this doctor say that she had no fear of death and that she believed that in life you should concentrate on having a great time. We are here to be in the present and not to focus on the rest. As she said, we can die any time and none of us knows our time of death.
Thank you Michael for that link and for your great contribution to this thread. I do hope everybody will listen to that link.
How are you doing these days? Do the days since Janette died become less difficult? How is life with your step-son? I do think the vegan way of life is probably the healthiest.
Thinking of you and wishing you all the very best.
Sylvia0 -
Sylvia, thank you for your kind words.
The surgeon spoke a lot of sense but I do wonder just how effective some of these things are. There is a lot of evidence that turmeric is effective but only in how quantities. Perhaps there are other reasons why India has a much lower rate of cancer than the west. I think it is probably true that they don't have the sanitised living conditions that we have and perhaps that confers some level of protection. Your comments on the foaming agents in products reminded me of when I was at college and the lecturer explaining that the bubbles and foam in soap and shampoo are totally unnecessary but the public demand them otherwise they think the product is not working.
I don't think things have become less difficult since Janette died. Today is my birthday and I feel her loss pretty badly on occasions like this. Things are going fine with my Stepson, we get on pretty well and it has had a good psychological effect on me.
Michael0 -
Hi ladies
My goodness, you have all been busy! How
are you all? Hope you are all well!
I'm now officially bald!!! Hair started shedding on day 12 and came out in handfuls on day 15. My daughter (5) and nieces (8 & 11) decided to make patterns in my head by pulling hair out. To much laughter and hilarity was had by all (along with a bottle of wine and a straw, lol) then the each had a shot of shaving it whilst my sister finished it off. Loads of photos and laughter turned a shitty moment into a good memory :-D
Well it seems that all three of us (Anne, Gill and I) have had an awful time with Chemo. I was so sorry girls to hear that you were both having problems :-( I too, got off to a spectacularly bad start! They gave me my first chemo when I was loaded with the cold (actually serious man flu, pffftt) and low and behold progressed onto the worst sinus infection of my life (which I'm prone to due to a spectacularly broken nose). I subsequently spent the first weekend at hospital on iv antibiotics. Much misery. It took virtually all of my cycle to recovery. Was due to have my second chemo today but this has now been postponed a week. They were asking me about my side side effects, other than the obvious infection. I told them how for the first week I felt like I had a horrific hangover every morning, that the roof of my mouth and tongue peeled, that I had a ten minute episode when I felt like my chest was caving in, short term memory problems (I forgot Ayvaes name amongst other things) the fatigue that you expect and that I progressively felt better as time went on. I never missed a day of work so it can't be that bad :-D They totally FREAKED about the chest issue and canceled chemo immediately. They said that the E in FEC can cause heart failure and they were not willing to give me more in case I have had or have a heart attack (cheery sods). So a barrage of tests await me over the next week to determine the health of my heart. Apparently this drug can cause damage as early as the first cycle so we'll just have to wait and see....
I was pleased however, to see all of the good news some of you have had (susan) and that things are looking good at the moment for for Carolben and that hero1967 has been given done good news. Good luck in December :-D
Thinking of you all and appreciate all of the advice and endless support you give (especially Sylvia). Thankyou xx Sandra xx
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Update: A week later and I am much better. Had some problems at the weekend with pain on swallowing, and heartburn, but rang the hospital and they fixed me up with some antacid meds (Omeprazole). This cycle has been tougher overall. It seems to be taking longer to get my appetite back and enjoy food again and also the weak feeling is taking a while to leave, but I am now going for walks and getting on with things. Also I seem to have lost some weight but honestly can't say I'm sorry about that.
Good luck to others still going through this.
Anne x0 -
Hello Michael
Thank you for your post. I do agree with you that we just do not know how effective some of these things are. The surgeon in question is an orthodox one and so I would have been surprised that she even mentioned turmeric, but we have to remember that she does have connections with a charity in India. We do keep hearing about turmeric so I suppose we can just hedge our bets and take some. Of course, in this country, the experts turn everything into a pill, so we are told to buy curcumin supplements and swallow them, as we cannot get enough turmeric in our bodies in powder form to be effective. The same has been done with green tea and the advice is to take some green tea supplements. These supplements are very expensive, making money for some, and I am not convinced they are as effective as the food or drink. In addition, these supplements have loads of fillers in them and who knows what they are doing to us?
I do agree with you that there could be other reasons why India has a much lower rate of cancer than in the west. Our sanitised living conditions may not be healthy and may be making our immune system lazy or somehow compromising it. I have mentioned many times on this thread that when I first saw my consultant surgeon she told me I should not have had cancer, given how fit and healthy I was and that it could all be down to a lazy immune system that had never had to fight illnesses and had forgotten how to do it. What a consolation!!!
I do not know how we can escape all of these things. The food industry is adulterating all our food. When I look around the supermarket I feel that three quarters of the products there are junk. I go to very few aisles. I go to fruit and vegetables and buy organic when I can, to the bakery where I buy proper un-sliced whole-wheat bread and slice it at home. At the moment I buy a little fish and some cold water prawns but am thinking of stopping these. The rest of my shopping is nuts, seeds, beans and pulses. I should have some grains I suppose but am not fond of them.
In the health pages of the Daily Express on Tuesday there was information about why everyone is getting diabetes 2. It was all about a person's body being too acidic and not sufficiently alkaline. The worst offenders were meat, dairy products, eggs and fish. You can see the problem because these products form the basis of a lot of people's food intake. Fruit and vegetables are alkaline.
As for the toxins in household cleaners, toiletries and cosmetics, it is just unbelievable. Everything you pick up contains sodium lauryl sulphate and sodium laureth sulphate. I have just looked at a bottle of mild shampoo for fine hair and on the label it states, as if with pride, silicone free shampoo, but if you look at the small print on the back label there are about thirty (30) ingredients, some with unpronounceable names. The longest one of these is “methylchloroisothiazolinone”. Your comments are most welcome!
Looking through some of the face creams I keep seeing parabens and I think that is a known carcinogenic.
Changing the subject, here are some of the snippets of information that I found in the magazine What Doctors Don't Tell You.
Chamomile tea switches off cancer cells.
Fasting improves heart health.
Cholesterol levels rise in winter and fall in summer.
Everyday drugs may cause memory loss.
A lie-in helps prevent diabetes.
Tomatoes may reduce prostate cancer risk.
Coffee halves risk of breast cancer returning.
Side effects from drugs total sixteen hundred (1600).
Two sausages and one rasher of bacon everyday increase your chances of premature death by 44%.
There is also an article which expresses the opinion that anyone with cancer should give up dairy completely.
There is also a lot of information about the success in India with treating some cancers with homoeopathy.
I have been reading about what is done to make soy milk and it was horrific. I have not touched any soy for a few weeks now. I was having it mainly for the calcium with which it is enriched. I am relying entirely on nuts and seeds for calcium now.
You can see how we are bombarded with information, much of it often conflicting.
I was interested to know that the foaming agents, which I think are the lauryls etc., are not necessary.
I can understand how things are still difficult for you since Janette died. It was all very tragic. All you can do is cherish all the happy memories you have.
I do hope you managed to have some happiness on your birthday and may I wish you a very happy belated birthday from me, Raymond and all the wonderful people on this thread.
I was so glad to know that things are going fine with your stepson. It is good that you get on.
Take care of yourself.
Thinking of you.
Sylvia.0 -
Hello big_leggy (Sandra)
It was good to hear from you and to know that you are still keeping your sense of humour as you go through chemotherapy. I am sure this will help you a lot.
It is a good thing that you, Anne and Gill are going through this together and can come together here to relate what is happening.
You certainly got off to a bad start and I was surprised that they started your chemotherapy when you had such bad flu. It is a pity that your second chemotherapy has had to be postponed but you need to be infection free and as strong as possible.
It is good that they are asking you about your side effects and taking an interest and it is useful for them to take note of personal side effects. I know that lots of people get sore mouths but yours sounded really horrific. I also know that a lot of people have this chemo brain but you have to hang on to the fact that you will recover from this. With all this going on it amazes me that you have been able to work.
I do remember the chemotherapy nurses saying that the E (epirubicin) was awful and they called it the Red Devil but they did not mention heart problems. I am not surprised that it does because we know how lethal these drugs are. It must be because of this that we are usually given an ECG before and after treatment.
Let us know how you get on with all the tests you are going to have to see what is happening to your heart and let us hope you have good news. These drugs are awful but we do not have much choice. I know there are people choosing not to have chemotherapy, but it is a risk they take.
Let us know when you have a date for your chemotherapy.
You will get through this, Sandra. Take great care of yourself and have a laugh whenever you can.
Sending best wishes to you.
Sylvia xxxx0 -
Hello apandy (Anne)
I was so glad to read that you are feeling much better. I am glad that the antacid meds have helped. It looks as though with you, Gill and Sandra, a mixture of side effects are coming out.
I do hope you will get your appetite back and that you will begin to enjoy food again. It is good that you are going for walks and doing things. Anything that takes your mind off the chemotherapy treatment is beneficial.
Thinking of you and wishing you all the very best. Take great care.
Sylvia xxxx0 -
Hello peterandliz
I have missed you on the thread and am posting just to say I hope all is well with the two of you and I was wondering how Liz's friend is getting on.
I hope we shall hear from you so that we can share anything that is happening.
Hello to everyone on your Facebook group. I hope they are all doing well.
Best wishes.
Sylvia0 -
hi Sylvia and everyone
Just starting to come out the other side of taxotere, taste buds are slowly returning aches are still there but subsiding, really not looking forward too the next one,
A lot of the girls on my Facebook group are going through similar side affects whilst I don't like to hear their suffering also, it is quite reassuring to know its normal though with varying degrees, some of them are still in hospital which I'm doing my best to avoid.
Sandra I can't believe they gave you your first chemo while you were ful of flu, wht did they think was going to happen, I do hope the test results go ok...
with regards to the mouth problems, since starting chemo I've been using 1 teaspoon of salt and 1 teaspoon of bicarbonate of soda mouthwash five times a day and not had a single problem with my mouth...no ulcers no thrush nothing and I'm the only one using this out of 38 in my group and everyone else has had horrendous mouth problems ( I have told them) and so cheap to make up as well,
Anne glad to see your over the worst of your side affects, the taste buds do seem to be the last thing to return...it does make eating a necessity for living rather than anything enjoyable as everything just tastes awful, but on the plus side I've lost 18 pounds since diagnosis so every cloud
Sylvia just a quick question, where did get the magazine "what the drs don't tell you" from?
Take care
Gill0 -
Hello jackpot (Gill)
I am just popping in to say that I am so glad that you are feeling better. I shall post some more later on, but just wanted to say that I bought my copy of What Doctors Don't Tell You in WH Smiths in Exeter. You should be able to find it in any Smiths or some supermarkets. I think it is essential reading for anyone who wants to be informed and who has an independent thinking mind. You may have to hunt for it as it seems to appear in different places. This last one is of particular interest with so much information on cancer. You can also subscribe to it.
I shall post more later, as I am very interested in your Facebook group and all the different side effects. I shall probably list all those that I know or have been mentioned as an easy reference for newcomers.
I agree with you that the best remedies for sore mouths at any time are salt and/or bicarbonate of soda. A teaspoon in a little warm water works wonders and these products do not cost much.
I shall be in touch again later on.
Fond thoughts.
Sylvia xxxx0 -
Hi everyone, I was just reading about "what the doctors don't tell you" magazine on this forum. I think the only supermarket that will stock it is Tesco. The best way of making sure you are able to get hold of it is to subscribe. I had an email from the publisher recenty asking me to do so as the medical profession does not like what it has to say and is trying to prevent it's publication.xx0 -
Hello Hero1967
I was interested in what you said in your post and I do hope people will read this magazine. I have been reading it all this year and it is full of information that people need to know. We cannot have the medical profession dictating what people can read. We must have information about everything that is going on. We need to remember that the medical profession here in the UK were against the formation of the NHS. Just imagine that. I remember a long time ago reading a book entitled What Doctors Don't Tell You. I do not know whether the magazine has come from that.
The medical profession will not be able to prevent information on the internet anyway and the link to What Doctors Don't Tell You on the internet is full of information as well.
I hope you have a good weekend.
Keep well and keep happy.
Fond thoughts.
Sylvia xxxx0 -
Hi to everyone,
Just to say thinking of everyone going through treatment, for me this time of the year is the time when I was coming to the end of my chemo and waiting for the birth of my grandson. So even though November is grey and miserable it reminds me of those feelings of anticipation and hope.
This week at the centre we have some good news two fabulous and much loved women have both received the news that for one the chemo is working and keeping the metastasis at bay and the other { lung cancer} had the news that a lump was benign.
Also after much representation from 2 friends where I used to work we will be recieving a good amount of a donation from money that we raised years ago to buy mammo equipment, subsequently all cancer services were removed from our hospital and so we never used the fundraising money.
I was interested to read about the E in FEC, whilst I knew that it was particularly toxic I was never told that it could have an effect on the heart.
Later this morning I will be going to Tai Chi and in a couple of weeks there is another day of meditation at a buddhist centre with a monk.
I find it very difficult to do silent meditation and may not go to the seminar.
I feel lucky that I can access these therapies as I know they help me and all the others to find some kind of inner peace and escape.
Wishing everyone a good weekend.0 -
Yesterday, I received a copy of a letter from my oncologist to my GP referring to my CT pulmonary angiogram on Monday. It seems I have rapid breathing (tachypnoea) at 24 breaths a minute (normal is 12-20) and there was a reference to possibly delaying chemo if I have any clots on my lungs. I really hope this doesn't happen as it could wreck my plan to return to work in April. I just hope I get the scan result straight away and that any treatment for PE, if that's what I have, is quick.
Anne0 -
Hi all, my thoughts are with all who are going through chemo, hang in there, it's not easy. But hopefully it's doing what it's supposed to, and kicking cancer's butt!! I love your story about cutting off your hair, big leggy Sandra! What a blessing to have people like that around you! I had a friend who shaved my head the first time, it was very emotional.
Sylvia, I have an appointment with my oncologist on Tuesday when we'll talk about dosage, and I have a few questions, and he'll explain things to me. He has told me the side effects at our last appointment. Then I'll go through to the chemo nurses and they will flush out my port and give me the tablets for the first cycle. They will give me print outs of the side effects and how to manage them. I do have a 24 hour number and can get hold of someone at all times. I've never had to call out of hours, but there have been quite a few times that I have called the chemo nurse to ask about side effects or problems; and she liases with my onc and steers me in the right direction. They are so helpful at the oncology clinic I go to.
The side effects seem to be similar, nausea, gastric upsets, hand-foot syndrome, fatigue, appetite changes etc. There is a very helpful Xeloda thread here. It makes it easier to do it in tablet form (I think) especially where traveling is involved. Then I just need to see my onc at the beginning of each cycle. We'll scan in a couple of months, I should think, to see if it's working. I don't think I should lose my hair though, I just had my first haircut!! Will have to update my avatar.
I read a book in Jhb when I was there, called Say Baa to Cancer (I think) that was interesting - I forget the name of the author, but it's always interesting to read about someone else's journey. I'm still ploughing through The Fall of Giants. I've been off chemo for 3 months now, but there are still days that I'm just bone weary. Most nights I fall asleep with the book on my chest!
I was saying to a guy I know that I wanted a lazy boy chair, and he arrived at my house the next day with his old one! It's a real oldie, but so comfortable! I now lay back and watch the cricket and can just have a nap when I want. It also helps during chemo for me to not lie flat cos I get indigestion, so a lazy boy is perfect for those afternoon naps! That's just how nice so many people are, here in our little town. I'm very blessed.
Am keen now to get started on Xeloda, am not too good at waiting. It's almost warm enough to start swimming again, but I've lost weight and get so cold so quickly, so I may just go looking for a wetsuit to wear. I love the water, but I really don't like being cold!!0 -
Hello linali (Lindsay)
Thank you for your post and for your PM.
Thank you for your news about what is going on at your centre. It is always encouraging to have good news. I am sure you will make good use of the money from that donation.
It is of concern that cancer services have been removed from your hospital. Patients need local facilities or facilities as near as is possible to their locality.
It is not good when we have these big impersonal hospitals far from where seriously people have to live.
I shall answer your PM later.
Thinking of you Sylvia xxxx0 -
Hello Anne
Thank you for your post and keeping us all informed of what is happening to you.
I was sorry to read that you have a rapid breathing problem and I do hope it is something that will not be permanent. I do hope you will have good news today when you have your CT pulmonary angiogram.
I sincerely hope that you will be able to go ahead with your chemotherapy as I know we all get keyed up for the next dose and that any delay is a disappointment and just delays the end of treatment. On the other hand, chemotherapy is dangerous and the medical experts cannot take any risks.
We are all thinking of you today and wishing you the very best.
Sylvia xxxx0 -
Hello Carolben
Thank you for your post and your support for others going through treatment, especially when you are going through so much. It is important that those going through chemotherapy for the first time know that they can get through this, even if it is not easy.
I do hope all will go well with your appointment on Tuesday November 19th with your oncologist and that you will be able to have the oral Xeloda on November 20th. It is good that you know the side effects in advance and let us keep our fingers crossed that you do not experience them. It looks as though your team has everything well organised. I was glad to know that the people at the oncology clinic are so helpful. I think that with all the information that is now available patients have to be told all the possible side effects and that it is no longer possible to hold things back. We all have to remember that they are possible side effects and that we may not experience them or experience them to varying degrees.
The side effects that you have been quoted seem to be common to lots of the chemotherapy drugs. This makes sense because they are all basically doing the same things, which is killing off fast growing cells. I know that during my own chemotherapy journey, which started with epirubicin and cyclophosphomide, I had not the slightest nausea or vomiting and nothing at all to speak of except the initial hair loss and fatigue. When I went on to docetaxel (Taxotere) I lost my eyebrows and eyelashes and had a metallic taste in my mouth. That was about it. I maintained my normal weight and ate small healthy meals throughout. I think we all have different experiences. It was only after I had finished all my treatment that I felt there was something strange about the soles of my feet. I was eventually told I had peripheral neuropathy, that it was a result of the docetaxel and that it could not be cured.
It is good to know that you have a helpful Xeloda thread. At least it looks as though Xeloda does not cause hair loss. Let us know how you get on with this drug as we need to get as much information out to everybody.
I was interested to know that you have read the book Say Bah to Cancer. I read it some time ago, found it interesting and seem to remember it was written in a humoristic way. I do think it is important to be able to laugh, have some fun and keep positive throughout this cancer journey.
How kind of that man to bring you a lazy boy chair. It does restore ones faith in mankind when there are acts of kindness like this. The news is so dire most of the time and there is so much suffering and so many incidents of man's inhumanity to man in this world of ours.
You might want to read a recent book entitled The Cancer Survivors Club by Chris Geiger. It is a collection of personal accounts by cancer survivors of their cancer journey with all differrent kinds of cancer. It is easily readable, inspiring, motivating and encouraging.
Another book that I have just bought, but have not yet read, is You Need Humour With A Tumour – reflections on a journey with cancer by Annmarie James-Thomas. Both of these books are 2013.
In the recent past I have read Breast Cancer Your Treatment Choices by Dr Terry Priestman 2013, and Cancer by Paul Scotting, a beginners guide (2010). Both of these books are informative and interesting. As a constant reference guide I keep Understanding Breat Cancer by Professor Mike Dixon, Family Doctor Books. It is just a small book but it has everything in it and is illustrated to show procedures.
Thinking of you and sending you best wishes.
Sylvia xxxx0 -
Hello everyone
I am just popping in to start the week off once again. I do hope that those of you going through chemotherapy and radiotherapy will have a good week and keep us updated on your progress and any side effects that you may experience. You know that we are all thinking of you.
Many thanks to those of you that post regularly and to all of you viewing.
Best wishes.
Sylvia.0 -
It turned out the letter inviting me for a CT scan today was an error because I had one two weeks ago. I thought this was another, but different, follow-up scan. I don't know how they came to send this letter out but it was enough to send me off to the hospital today on a wasted journey. I had also had a letter from the oncologist to my GP worded as though the scan hadn't happened yet, and suggesting chemo would be delayed if the scan showed a clot, so I had no reason to question the appointment. I think my oncologist may have dictated the letter to my GP on the day I had my scan, but before I had it, but it was posted much later. I am thoroughly confused but also relieved as I don't like having CT scans. Also it means the scan the other week, which was clear, means there is no possibility of a clot. It still doesn't explain the breathlessness, but that is not severe so I am not too worried.
I am gradually feeling better from the chemo but I did experience some alarming migraine symptoms this morning (an aura and blurred vision but no other symptoms or headache) but luckily managed to get rid of this with paracetemol before it developed. I have had a couple of similar experiences since starting chemo so need to raise this with the oncologist as clearly it's a side effect of one of the chemo drugs. I have had migraines in the past, which I think are hormone related, but not recently. I am also feeling tired a lot and very drowsy, despite sleeping well, but the worst is done now and I can look forward to Round 3, bloods permitting, next week.
Enjoy your week everyone,
Anne0 -
Hello Anne
I was sorry to read about all the hassles with your scan appointments etc. We do know that hospital staff make errors so we have to be vigilant and double check everything during our treatment. I remember when I was going through treatment that I had a phone call from the plastic surgery department telling me I had missed an appointment. I had to tell them I was having no reconstruction, had never considered it, had not even been offered it. I told them in no uncertain terms to get their information and appointments in order. Even now, after eight years and five months, and with just eighteen months to go before I shall be discharged, if all is well, I correspond only with my oncologist and, if necessary, with the consultant breast surgeon, even though I have been discharged from her. I figure the fewer people involved the better. It is always better to go to the top person.
I do hope you will continue to make progress and that you will get to the bottom of the migraines.
I hope if there is anyone viewing and suffering from this side effect they will post in to talk about it. Hang in there.
Fond thoughts.
Sylvia xxxx0 -
Hello Lindsay
Thank you for your PM response to mine. I shall answer later on.
Take it easy and pace yourself.
Fond thoughts.
Sylvia xxxx0 -
Hello linali (Lindsay)
I am posting this on the thread as I thought some of what I am saying will be helpful to all.
Although with cancer patients there are different people involved, and the breast care nurse is a useful contact for minor worries, I do not think you can get appointments with consultants through the breast cancer nurse. You need to phone or better still, probably, write a letter, expressing your concerns and your need for an appointment. It is always good to be polite, but assertive, when you want and feel you need an appointment. I always found when I wrote to my oncologist or breast cancer consultant that I got a reply.
Cancer patients need to be their own best advocates and to get anything that is of concern dealt with promptly.
Lack of energy and different degrees of fatigue seem to be common with cancer patients and it seems to be this can go on for a very long time. We have to learn to pace ourselves and do what we can each day. Worrying can be exhausting so we have to deal with that by getting it cleared up so that we do not have it running through our heads all the time. Even doing enjoyable things can be tiring. Being around people and just talking can be tiring for anyone and not just cancer patients. I find it quite tiring being around people and having to keep up conversation, not to mention talking on the phone. PACE yourself and if tired REST. Although you enjoy the centre, only do what you feel you have the energy to do.
Take care of yourself and wishing you all the very best.
Sylvia xxxx0 -
Hello everyone
I just wanted to say that I hope things are reasonably well with our three women going through chemotherapy, Jill, Anne, and Sandra. I hope, Carolben, all is well with your oral chemotherapy.
I hope all is well with you Susan in Germany. You must be eagerly awaiting those December dates, and you, Hero1967, you must be patiently waiting for that ultrasound.
I hope all is well with you, Michael, in Northern Ireland.
Best wishes to everyone.
Sylvia0 -
Thanks for your thoughts, Sylvia. I haven't had any more migraines since Monday! but one of the doctors rang me and advised me to take ibuprofen and paracetemol! which is pretty much what I am doing. I used to take migraleve but have found a much cheaper migraine medication from Tesco so will try that. I was impressed that the doctor called me.
Yesterday was a good day as I went and played in a table tennis match (I play for a team in a league) which was good fun, as was the visit to the pub afterwards. I felt part of the human race again. But it has left me very tired today.
I am trying to find some suitable headgear for playing table tennis as my bandanas tend to slip around a bit. I just bought some cheap towel buffs online so hope they will work if worn with a light cap.
My third chemo is next week, and I also have an appointment with the family history clinic, which I hope will lead to some blood tests and then elimination of any genetic factors.
Regards to all,
Anne0 -
Anne - congrats on playing table tennis. I found that continuing going to my fitness classes and doing my daily 4k walk was very beneficial during chemo . Of course there were some days when I just didn't feel like it, but I still got out, but took things easier on those days. Migraines are no fun - I got a blinding headache after the first chemo infusion of cytotoxan, and on subsequent treatments I asked the nurse to run the infusion a lot slower, this helped tremendously. Hang in there - you will get through this!0 -
Sylvia - I am still reading almost very day, but my life seems to have become quite hectic and I am so acutely aware of the need to slow down. I just got back from Mexico a few days ago - my husband booked us into an all inclusive resort which was right on the ocean and we had a great view - the waves were stunning and very soothing to the soul. I went into the ocean every day and we walked along the beach for a long way each day. The food was excellent and although not organic (which I typically eat at home), I was able to get meals that were healthy. Eating is always a problem when away from home! This is something I struggle with, but I also do not want to sacrifice travel for the sake of food! It was exactly one year ago yesterday when I started chemo and what a year it has been - so glad it is over - it seems like one very bad dream. However, I am now doing very well and am so grateful for each and every day.0 -
Anne
I find it quite worrying that you have been advised to take ibuprofen and paracetamol. Was this advised by your GP or cancer team? I have been advised by my oncologist not to take paracetamol or ibuprofen under any circumstances as they lower your temperature when you have a fever thus masking any infection you may have. Something we seriously cant afford to have happen during chemotherapy. Good advice I feel as these two drugs are the first things we reach for when our children have temperatures and infections. I've been prescribed codeine and tramadol for pain relief as they don't lower body temperature. Maybe you should ask your doctor if these would be more suitable for your migraines.
Don't be offended at my criticism, I'm just concerned my lovely... xx Sandra xx
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I took Ibuprofen and Tylenol (which I believe is the same drug as paracetamol) - it was suggested by my MO - she said the combination works just as well as a narcotic! It did the trick for me when I had severe bone pain from Neupogen shots.0 -
Hi Sylvia and all,
Sorry for not posting for a while. No idea were the time has gone but we seem to have been busy but not actually doing much. That's the problem when both of us are at home we sit drinking tea all day. Especially in cold weather. We have done some things but it seems to be a lot of small things and a lot of driving about. At least we have not thought about cancer for a while.
We have finally booked a band for my 50th and Liz's 45th birthday party next September
Liz has recovered physically from having her ovaries removed but the forced menopause is not nice.
18 months ago when we had the motorhome Liz suffered from painful joints every few weeks. She had problems climbing into the bed and would lay awake all night in pain. We thought then she was going through the menopause or at least the pain was caused by her hormones. She now has very painful joints again and night sweats. We shall give it until after Christmas but if conditions do not get better she is going to go onto a low does of HRT.
Liz's friend who has stage 4 ovarian cancer is getting married on 14th December and should know by then how quickly it is spreading.
2 years ago Liz was loosing her hair from chemo which is what she hated the most. I remember when it started growing back it seemed like ages before she could even have it trimmed. She loves longish hair. Thankfully it is long again now.
Life goes by to quickly. Everyone going through treatment now have the spring to look forward to and getting back to a normal life without feeling ill all the time. Before you know it you will be 2 years further down the road as time will go by quickly as you start to feel better.
Peter0
