Calling all triple negative breast cancer patients in the UK
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I want to add that I thought my very short hair looked good, my husband thought it was much too short to be wig-less!
I was just tired of wearing wig.
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Hi, Sylvia
re: your last post. Prescribed physical therapy is necessary with this shoulder surgery, otherwise one runs the risk of not regaining range of motion or strength, or even worse, re-injuring it and having worse problems and facing surgical repair! I knew this going in, and am now living it, which is much harder!
Mary
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Hi Mary,
My hair started to come back whilst on Paxlitaxel, just a very slight fuzz, but enough to reassure me that I wouldn't be bald forever.
Like your husband, Michael isn't at all keen on very short hair. We may have a problem there, as I don't want to get back into the washing and blowdrying routine again - takes up far too much time.
Good luck with the rest of your physiotherapy, it sounds painful and time consuming, but you do need your full range of movement back. Your surgery was more complicated than I'd realised when you first told us about it. However, I do remember my daughter calling me from medical school one evening to tell me what a horrible afternoon she'd had. Apparently one of the surgeons wanted her to go to the operating theatre to observe shoulder surgery. She was completely unnerved by the whole thing, unbelievably complex and very gory - put her off surgery for life!
Take good care of yourself.
Love,
Gill X
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For anyone who's interested, I really recommend this bra from M&S.
https://www.marksandspencer.com/total-support-stri...
It's the most comfortable one I've ever worn. So soft, nothing to stick into lymph nodes that may still be tender.
Susie
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Went to get my bloods done today ahead of my second Zometa infusion on Friday. I had thought that Oncology Bloods at Charing Cross couldn't get any more chaotic but I had underestimated them. They have a new ticket machine now which -- get this -- doesn't issue tickets in numerical order. So I might get #75 and the person after me might get #62. Not only is this confusing but it causes bad feeling as patients think that people are jumping the queue.
Did you ever?
I waited more than 90 minutes too. Thank goodness it's only once every six months.
Susie
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Hello everyone,
I have an appointment for my second Zometa infusion in July and a blood test wasn't mentioned. In fact I haven't had a blood test since I was being treated for C. difficile. I had my first Zometa infusion at the end of my first Paclitaxel treatment in January which has always seemed strange. Everyone I've spoken to has had Zometa after all their chemotherapy was finished.
Susie, frustrating new ticket system or broken machine perhaps. Either way, a ninety minute wait is ridiculous.
The weather in South Norfolk is cold, wet and altogether grim. More like March than May. Ida, Cathy (cats) and Michael are asleep in front of the logburner, so all is quiet. Not a good day and to top it all, I've just heard that the UK will be required to vote in the European elections. I voted to stay in Europe and had hoped for a second referendum, but I just want the whole thing to be over with now.
Gill X
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Hola Marias,
Thank you for the link that you sent. I did enjoy the video and I agree 100% with what was said.
I hope all is well with you.
Abrazos.
Sylvia xxxx
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Hello Gill,
Reading through the posts it seems to me that there is a terrible muddle going on within the NHS. I think the only solution is for patients to speak up and question everything that is being done to them or proposed to be done to them. It is better safe than sorry. It is our bodies that they are playing with. If that were me in your place, Gill, I would just ask for a full blood test and say I want to know whether everything is alright after all I have been through. Get your GP to do it if all else fails.
For all of us on the thread, it would be nice to know whether Zometa is now part of standard breast cancer treatment.
The weather is cold here today and tomorrow we are supposed to have rain and winds all day. As for Brexit, it is a complete shambles and the politicians are wasting time while the country falls to pieces. If everything about leaving the EU is so complicated we might just as well stay in. What is on the table is tantamount to staying in anyway.
I hope you are making good progress.
Love.
Sylvia xxxx
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Hello Susie,
I cannot believe what you went through today. Perhaps the numbers refer to different doctors dealing with patients. It is just an idea. Waiting for ninety minutes is too long anyway.
I hope all is well with you.
Love.
Sylvia xxxx
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Hello Mary,
I do realise that you need to do the prescribed therapy in order to make a recovery. I just meant that I realise that physiotherapy can be demanding.
Wishing you all the lest.
Love.
Sylvia xxxx
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Hello Sylvia,
No, the numbers were solely for blood tests with the phlebotomists. You just go in and take a number like at the deli counter in a supermarket. And it's not a broken machine; there is actually a notice explaining that numbers are random. Maybe it's a psychiatric experiment to see how long it takes to break us. It's not the first time I've waited that long for a blood test in 'Clinic 8' at CXH. I think you're lucky if you're out more quickly. I always take my Kindle but am aghast at the number of people who bring nothing to read and just sit there. How can they bear it?
I guess it's up to your individual oncologist but mine said that the Zometa would add 3% to my survival chances. Not a huge difference but raises it from 67 to 70%
All this after an infuriating call to my mobile's call centre this morning. I'm off to Aqua now to relax in warm water.
Susie
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Hello Sylvia,
You're right, the workings of our NHS are muddled - confusing for clinical staff and patients alike. We have a Government which is dedicated to overseeing the failure of our NHS. Frontline workers do their best to cope, but many are disillusioned and tired. In my case, I'm sure the oncology consultant would have been happy to spend more time with me, but her schedule was just too tight. The hospital here is under special measures, it needs a large injection of cash. It also needs an urgent culling of middle and senior management, but that's another story.
I'll contact the chemotherapy unit to ask for a blood test before my Zometa infusion. It may simply have been forgotten. I'll be seeing my GP before then, she'll arrange for an earlier blood test and possibly and ECG.
I can't remember if I told you that my appointment with the surgeon has been put forward to September. I shall be asking if I'm now NED, although I'm not sure that having no evidence of disease at the time of testing will mean anything to me after a few months. I'd still like to hear my surgeon say it though.
Zometa does appear to be a standard treatment now. The Oncologist at the London Cancer Centre was keen for me to have it and suggested one dose every six months for three years. My Oncologist here has limited me to only two years. I'm going to see how I feel after my next dose before deciding if I continue with Zometa.
As far as recovering from chemotherapy is concerned, I'm feeling less tired and doing well. The C. difficile infection has left me with colitis and as well as probiotics I now have to avoid any high fibre food, caffeine, alcohol, most fresh fruit, including tomatoes. It's a question of trial and error. I was warned about the liklihood of colitis, but was also told that it would eventually go. The research indicates that it may go away for a while, but will usually return. I wonder if anyone here has any experience of colitis?
Heavy rain here today.
Love,
Gill X
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Hi Gill,
I am having Zometa for the recommended three years. Did your oncologist say why she was limiting you to two? Is it for a clinical reaosn or to save money?
Susie xx
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Hi Susie,
I did try to find out why I was being given only two years worth. My oncology specialist nurse was a bit evasive and I didn't have the chance to ask my consultant. I'm guessing it's time and cost. Last time I had Zometa I had side effects, but I don't think that it should've been given immediately after the Paxlitaxel infusion. If all's well after July's Zometa I'll insist on getting all six doses. An extra 3% of help is worth having.
Gill X
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Hi Gill,
It does sound suspiciously as if they're just trying to save money, doesn't it? A little Googling suggests a cost of about $210 per infusion, say £170? Not much of a saving!
I had my first infusion 3 months after my last chemo. A bit achy for a day or two, that's all.
Susie x
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Hello Gill,
Thank you for all the information in your last post. I do agree with you that the present government is working on making sure the NHS fails. It is gradually privatising all aspects of it. I watched Panorama last night which was all about why we cannot get appointments with our GP. It was most interesting and showed clearly the stress that our GPs are under. I think it can only get worse. GPs are trying to see too many patients in a day. At my surgery here more and more appointments are either telephone ones or online. This kind of appointment is not acceptable.
It is hard to believe how long you are having to wait to see your surgeon, but it does not surprise me.
I was glad to read that you are doing well and are not feeling so tired. I do not know if you receive the free magazine VITA from Breast Cancer Care. I have been receiving it for many years now. You might be interested in their article "You think you should feel better", as well as the article "10 tips to beat fatigue - Kate Parsons asks why so many people experience fatigue after a breast cancer diagnosis, and what can be done to help". Another interesting article is "Food for thought – diet and breast cancer – What to eat after breast cancer treatment is a topic that causes a lot of worry. With the help of a dietitian, we ask why it can lead to such confusion". Another interesting article is "Breast cancer research – the lowdown". You might want to look at breastcancernow.org.
I think this is a worthwhile magazine to read. You can look online at breastcancercare.org.uk or there is an email address vita@breastcancercare.org.uk
Wishing you all the very best.
Love.
Sylvia xxxx
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Hello Susie,
I do love your great sense of humour in all that we go through as breast cancer patients and citizens of this crazy world, not to mention this country.
Thinking of you.
Love.
Sylvia xxxx
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Hello Sylvia,
I often ask for a phone consultation with my GP. I'm very happy to do it over the phone if it's something basic. For exmaple, after my first chemo, I ahd a bit of acid reflux, so I spoke to my GP on the phone to ask her to double my dose of acid-reflux drugs, which she promptly did. It would have been a waste of both our times for me to go and see her.
Susie
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Hello sylviaexmouthuk, and hello to all. In September I had a third occurrence, matastic bc. I started taking xeloda orally. In March this yr I did my routine PET/CT screening and they found disease progression, so my oncologist decided to take me off of xeloda. Her plan was for me to start me on Abraxane and atezolizumab (chemo and immunotherapy regiment).
After countless hours of crying, praying, and speaking with my family, I decided to decline the recommendations and go for a holistic approach. I UNDERSTAND THIS ISNT FOR EVERYONE. Since going holistic my WBC has increased from 3.7 to 6.3. My WBC hasn't been above 4.2 since I starting tx in 2017.
But overall the disease is still progressing, but now I do feel stronger and believe if I have to do chemo I will be physically equipped to fight!🙏🏽. I did a MRI and they just found four small spots in my brain. Their suggesting radiation. I have a consult May 10th. Also they found node involvement and one on my neck is sitting on my nerve preventing me to move my arm.
Continued prayers for you all🙏🏽0 -
Hello Madeline,
Thank you for your post. I was sorry to read what a difficult time you have been through and I do hope things will get better for you. I have read your details and was so sorry to read that orthodox treatment has not been working for you. I do agree with you that orthodox treatment poisons our body with all these toxic drugs and they do not always work, or work for a while. It is very tough for our immune system to fight all this. I am not surprised that you decided to try alternative treatment.
What kind of treatment have you been getting from the hospital in Mexico?
I was pleased to read in your recent post to me that your white blood cell count had increased during your holistic treatment and I do hope this continues. It might be that stopping the orthodox treatment has helped this to improve as well.
Have you decided not to go for the chemotherapy and immunotherapy regimen that your oncologist wants you to go on?
Having read the last part of your post, I was sorry to read that the disease is still progressing. I am not surprised you feel stronger for having a rest from it all and understand that you feel you will be better equipped to deal with the treatment. I see, also, that they are now suggesting radiation because of the spots in the brain. I think that radiation is the only way to deal with these spots in the brain. You must have so much turmoil going on in your head.
It is very difficult to know what to say. I took oral Iscador (mistletoe) for five years when I was diagnosed with TNBC nearly fourteen years ago. I did it through a consultant at the Royal Bristol Homoeopathic Hospital, UK, and that consultant is now in private practice. I did this along with the orthodox treatment and was referred there by my breast cancer consultant.
I saw from your other posts that you are only 46 and all this must be awful for you, but never give up hope.
For fourteen years I have been drinking green tea and eating bitter apricot kernels. They are very controversial but they do not seem to have done me any harm. I would be very interested to know what alternative treatment you are having.
Please stay with us and we shall support you all we can. Tell us a little bit about yourself.
Wishing you all the very best and hoping that you have a positive consultation today.
Love.
Sylvia xxxx
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Hello Susie,
I do agree that a telephone consultation with a GP can be useful but it is not for everyone, especially if they are not very informed patients. Raymond and I have had a couple of them but our doctor knows us and knows that we are very informed. For some it might be difficult to explain how they are feeling and it may misinform the GP. With GPs being so overwhelmed at the moment telephone appointments can make sense. At our surgery we also have pamphlets listing all the things that do not require seeing a doctor and how we can buy medication at the pharmacy which the NHS pays more for on prescription. I read at the surgery that paracetamol costs four times more on prescription.
Have you read the latest VITA magazine and do you have any comments?
Love.
Sylvia xxxx
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Hello everyone, especially the newly-diagnosed and those that have not seen my story before. I have not updated it since I was asked to write it, but might write part 2 to all of this if I can find the time.
Best wishes to all.
Sylvia xxxx
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I have a date that will be forever etched in my mind and that is June 20th, 2005. That is the date on which I was diagnosed with breast cancer. I did this after walking around with a lump in my right breast for a long time, that deep down I knew would bring bad news. On June 20th I saw my GP and after examining my breast and under my arm she told me that she thought I had breast cancer. I remember being very silent and I heard her say that under our NHS (National Health Service) system there would be a two week wait and then I would be called to the hospital. I walked out of her room to where my husband was waiting for me and I just told him the news and about the two week wait. I thought this was a long time and so my husband and I went back into the GP's consulting room and asked how I could get it confirmed sooner. She referred me straight away to a breast cancer consultant who worked in the NHS and privately and within two hours I was with that consultant.
I felt at ease with her from the very beginning and she would be my breast cancer consultant surgeon for the next eight years. Emotionally I was in turmoil but it manifested itself that day in quietness. The consultant examined me and did a fine needle aspiration as she told me she was certain I had breast cancer but she now had to prove it. She made an appointment for me to see her at her breast cancer clinic for the newly diagnosed the next morning, a Tuesday. That night I slept poorly and my mind kept saying I had cancer.
I was already finding this very difficult as I had never been ill in my life. That Tuesday was probably the worst day in all of my treatment. My emotions were out of control and I was teary, low in spirits and afraid. I remember sitting down at the consultant's clinic and just looking at everyone there. I was called in and was told to go upstairs for a mammogram and ultrasound. My consultant kindly had a young nurse tail me for the day. I tried to talk with her but I was overwhelmed with emotion that day as I had the mammogram, ultrasound and core biopsy. I kept weeping and developed a bad headache. After these procedures it was back to the consultant for a summing up. She told me I had breast cancer and that I would need surgery, chemotherapy and radiotherapy. She further told me to come back and see her the following week when I had had time to digest it all.
That evening I remember sitting in the bedroom and crying till I could cry no more. In fact I did not cry any more during my eighteen months of treatment.
Looking back, I made some decisions that were wrong and I would say to anyone facing a diagnosis of breast cancer or discovering a lump not to delay but to get it sorted out straight away. I delayed seeing my GP and then I delayed having my treatment. This is not something that I would do again.
The next day I was more together and since I am studious and inquisitive, immediately started to read up about breast cancer. I read a book entitled The Cancer Directory by Dr Rosy Daniels and read it from cover to cover so that when I went back to the hospital I had already written to my consultant asking all sorts of questions about stage, grade, receptor status etc. When I saw the consultant she had the paper with her and went through answers with me. She told me that it was most unusual to be asked all these questions in such a scientific way and that patients usually just wanted to go through the treatment not knowing much. I would advise all newly diagnosed patients to get informed about what is happening to them and to be in control all the time. Back in 2005 I was not into computers and did not research the internet and in a way I am glad that I did not, but took my information from a reliable book. I think that at that time breast cancer was still very much in the dark ages in the UK, especially when compared to the US. Even now I find on the forum that American patients are probably told much more than they are in the UK, although I think UK patients now get more information from their medical team and in a way they have to be given this because the patients are much more informed.
At that time I remember my consultant telling me that the prognosis was not good because my breast cancer was not hormonal and she could not give me something like tamoxifen to help. She told me I was oestrogen and progesterone negative. Nothing about triple negative as such was mentioned. I was told I had invasive ductal carcinoma. It was not until much later when I finally agreed to treatment that I was told that I was HER2 negative and that it was a good thing to be so. None of this meant much to me at the time but it certainly would later. I would tell all newly diagnosed patients to make sure they have this information.
In the UK we are told we can get second opinions, that we have the right to do it, but I am not sure whether doctors like it. I think the medical profession has had to open up more in the UK because of the internet and forums like this, where patients are getting lots of information and can speak up for themselves to doctors.
I finally started six months of chemotherapy in November 2005 after I had been through consultations with alternative doctors, a nutritionist and a homoeopathic consultant to whom my breast cancer consultant referred me. Both told me I needed to have orthodox treatment and I now felt ready for it. The homoeopathic consultant kept me as a patient throughout my orthodox treatment and prescribed things as adjuncts to my treatment.
Once I started the chemotherapy I was fine and was told that I had sailed through it. The worst part was losing my hair but I soon got used to wearing a lovely wig. I know that many women are really frightened of chemotherapy but there is no need to be. Find out what drugs you are going to be given and why, listen to your oncologist and get information and tips from those that have been through it. You can get through chemotherapy. There is life after it.
Three weeks after chemotherapy finished I was in hospital for five days for a mastectomy of the right breast. Again I would say to all newly diagnosed patients that you can do this and live without a breast.
I finished treatment with three weeks of radiotherapy with boosters and found time went very quickly with this. It is tiring going to the hospital five days a week for three weeks but once there the treatment is quickly over. Again, I would say listen to your oncologist and radiologist because they know what they are doing.
When all this treatment comes to an end you can feel cut off because you are no longer busy going to the hospital. You go into the next phase which is living as normally as possible and then going for your regular visits with the oncologist and the breast cancer surgeon. We all get anxious as the visits come due but most of the time we get good news and come out of the hospital feeling exalted.
Next June 20th it will be ten years since my diagnosis. Since then I have done everything to keep myself healthy and fit, I have lived life normally and I continue to do everything that I did before. I know I cannot take anything for granted but I just take one day at a time. I was given a poor prognosis but I think that was because, unlike the majority of women, I was not diagnosed with hormonal breast cancer. I am glad that I have not had to take any medication to keep the cancer at bay, so I can say that I am positive about having been diagnosed with what is now commonly called triple negative.
Looking back I can say that I had a dream team for my treatment. I think my breast cancer consultant and oncologist are dedicated women who go that extra mile. I was also glad that I was offered and accepted to have hospiscare nurses come to visit me when I felt the need. They provided invaluable help with any problems I had, whether financial, emotional or medical.
As for food during chemotherapy I just kept to the plain foods that I had always liked. I think this is very personal and would say that you have to eat whatever will get you through your treatment. I know mashed potatoes with some poached fish helped me a lot, but mainly I kept to my normal diet, which is to avoid meat and dairy products.
Most of my treatment was during the winter months so the sun was not a problem, but in my everyday life now I am very vigilant about exposing myself to the sun. I have just what I need to keep up my vitamin D and take vitamin supplements.
I think the UK commitment to the environment could be improved but in my everyday life I try to avoid chemicals as much as I can.
I think that the breast cancer charities do a lot of good in this country but I think even more emphasis on cancer prevention is needed. I also think that women need to help themselves as well by following a healthy diet, not smoking, not drinking alcohol (or very little), exercising, keeping to a healthy weight and avoiding chemicals in their everyday life in the home. Very recently I read that reducing calorie intake to keep weight down has been found to help with reducing metastases especially in those with triple negative breast cancer. We have a serious problem with obesity in the UK.
Most hospitals here have charities offering all kinds of support to cancer patients.
I discovered Breastcancer.org in 2009 when I had finished treatment. I started reading the various threads and thought we were in the dark ages here in the UK with triple negative breast cancer in particular and decided to start the UK thread. I had no idea that it would still be going after nearly four years and I have felt so enriched by all the women from all over the world that have been on the thread at various times.
Breastcancer.org is a wonderful forum and providing a marvelous service.
--sylviaexmouthuk, United Kingdom
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Hi Susie and Gill
Is the Zometa given for bone protection only or as a cancer deterrent? Or both? If for both, it makes me wonder if there is a correlation between bone density and the forming of tumors.
Mary
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Hello Maryna8
My Zometa is to prevent the cancer from spreading to the bones, should it return.
Susie
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I underestimated my underestimation of the incompetence of Oncology Bloods at Charing Cross. I got a phone call at 9am today saying that the bloods taken on Tuesday had not been properly processed and they didn't have usable figures so they would have to be done again urgently. I went straight into the hospital, having to travel in the rush hour. At least there was no queue today. So, that's that done until November 8th, when I shall see how much more chaotic things can get in the space of six months.
I shall expect a few aches and pains early next week.
Susie
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Hello Mary,
The Oncologist I visited at the London Cancer Centre said that Zometa would help the chemotherapy to work better, the added bonus being that it would also strengthened my bones. He didn't suggest any correlation between bone density and tumours forming. The Oncologist at my local hospital didn't discuss it with me at all.
Hope the physio is gradually becoming less painful.
Love,
Gill X
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Susie, what a waste of your time. 'Not been properly processed' probably means lost.
Hope the aches and pains aren't too bad.
Gill X
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Hello Gill, Susie, Mary and Madeline,
Thank you for your contributions to the thread this week.
Hello Val, Viewfinder, Flora, adagio, 53Nancy, Helenlouise, Kath and Jags56on the thread this week.
Marias, we always look forward to hearing from you. When you post on Facebook do you do it in English or Spanish? I am still following the news about Colombia and Venezuela, not to mention Iran, which makes me think of Hanieh.
As for Zometa, it is the brand name for zoledronic acid and is a drug for bone disorder. Zoledronic acid is a bisphosphonate, a group of drugs used in the treatment of bone disorders. These drugs work directly on the bones, reducing the rate at which calcium is released from them and thereby making them less liable to fracture. The reduction of calcium release can cause blood calcium levels to fall, which is useful if the level is high due to something like cancer.
Calcium can be high because of other problems, such as an overactive parathyroid.
Zoledronic acid can only be given by infusion into a vein, and has a very long duration of action so that it can be used very infrequently.
It is used to treat various bone disorders, including Paget's disease of the bone and osteoporosis in men and post menopausal women, particularly those who have had a recent osteoporotic fracture or who are on long-term corticosteroids.
Zoledronic acid is also used to prevent bone damage in patients with advanced cancer that has spread to the bones.
There seem to be quite a lot of side effects. The most common being bone pain, fever, fatigue, sickness, vomiting. There have been reports of ulceration of the jaw bones in patients given bisphosphonates, including zoledronic acid. I seem to remember this is called necrosis of the jaw.
A patient will be monitored and regular blood tests carried out to monitor your calcium levels. Your general health will also be monitored.
I have a friend who was on a different bisphosphonate, brand name Fosamax (alendronic acid). She was on it for many years for osteoporosis and ended up with a problem with her jaw. She used to take it orally as pills every morning. It has a lot of nasty side effects.
I was offered Fosamax by oncologist for chemotherapy induced osteoporosis, but I rejected it straight-away many years ago now. My breast cancer consultant told me it was nasty and to steer clear, as did the homoeopathic consultant I saw at the Bristol Hospital I mentioned in a previous post.
That is all for now. Have a good weekend doing what you enjoy.
Best wishes to all.
Sylvia xxxx
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Although I've never had any trouble with my bone strength, making them stronger as I get older can't be anything but a good thing, in general. My understanding is that jaw problems are very rare, though obviously a big problem for anyone who does get them. My only side effects with the first dose last November were a couple of achy days, most noticeably a bit of lower back pain.
I don't think they lost my bloods as they said that one specific reading was missing: haemocites? haematites? The phlebotomists at CXH are usually very good but I wasn't impressed with the one on Tuesday.
Sylvia, yes I do get Vita. I find the articles a bit simplistic, to be honest.
What does anyone make of this 'True Cancer' woman?
https://www.bbc.co.uk/news/av/uk-england-london-48...
Frankly, the last thing I would have wanted to be told on diagnosis was how 'traumatic' it was all going to be, especially since, as it turned out, it wasn't! I want women to be told that they have a serious illness but that the NHS is very good at treating it now. The reality doesn't have to be 'brutal', as this campaign claims. I actually feel very strongly about this: I don't see how it can be helpful to exaggerate how awful it's going to be.
Susie
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Hello Sylvia,
I didn't see Panorama, but my daughter's a GP. In theory she's only part time as she has two children under three to care for. In reality although evening surgery ends at 6.oo, she needs to work many extra hours to catch up on test results, notes, letters to and from consultants, clinics etc. She has targets to meet, so has only ten minutes for each patient but always says that a consultation takes as long as it takes, so appointments run very late. The pressure is unrelenting. She only ever wanted to be a doctor, but after three years she's disillusioned, exhausted, angry and thinking of an alternative career.
I've just emailed Vita magazine and asked for copies to be sent to me. Like you, I do visit other breast cancer sites, but not often, as Breastcancer.org covers most areas extremely well and is always a good source of new information and support.
I feel much less tired these days. The side effects of C.difficile are the same as ever.
I do wonder how Helenlouise and Marias are getting on. There are several members of the thread going through a difficult time at the moment.
Enjoy your weekend. I'm hoping Exmouth gets some sunshine at last.
Love,
Gill X
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