Being a Grandma.

All through my treatment I kept looking for things in my life to keep me going, ofcourse my family and friends all helped me a lot, encouraging, helping and loving me. When Mom died unexpectedly it was such a terrible blow, she had always been there for me, helping me along, phoning me up to make sure I was okay, generally fussing, being a Mum. Then she was there no longer, and it hurt so badly. I know she found my illness so painful, hard to cope with, and I realise how difficult it all was for her. I blamed myself for a long time for her death, thinking the stress and strain had pushed her into illness, but she was 84 and had suffered angina for a long time and the doctor said her death was due to her heart and old age. She went suddenly, found on the floor of her flat by my beautiful daughter, the trauma of the moment was with her for a long time afterwards as you can imagine. We were away, down in the Cotswolds, just for a short break. I needed to get away for a couple of days, to have a couple of days to relax, not think about what was happening to me, take the pressure off a bit. When Mom died I felt awful for leaving her, we had said goodbye before we left and she wished me a lovely time, I never thought I would never see her again. Heartbreaking.

One thing which kept me going when I was ill was the fact that I wanted to live to be a grandmother myself, I kept telling myself that I had to live to see grandchildren, to help my own children through the minefield of being a parent, the thought of holding a baby grandchild in my arms kept me pushing myself to good health, determined to beat it, this cancer which had somehow found its way into my body.

My beautiful granddaughter is now 15 months old, she is called Poppy Hope, she is the light of my life. The getting of Poppy was not easy, she was an identical twin, and she also had a triplet, non identical, her twin and triplet did not live, Poppy was born 10 weeks early, spent 6 weeks in hospital. She weighed just 3 pounds 4 ounces, so tiny we could not believe it! We willed her to live, and she certainly had enough will of her own, she was determined thats for sure. She started walking a week or so ago, she smiles all the time and is a joy. The treatment I went through was not easy, but I got through, thankyou God.

Bones

I had the phone call yesterday morning to make an appointment for me to have a bone density scan, the registrar I saw when I had my oncology appointment last week said it would be a good idea as I take the drug letrozole which makes my arthritis very painful, and as it can affect the bone density I have to have a scan to find out if any damage has been done. So on the 5th December I shall once again be heading off to the hospital, I have to attend the rheumotology department so hopefully that means the scan is not an MRI which has been slightly worrying me, the thought of being slowly pushed head first into a tunnel fills me with horror, I am claustrophobic, I could not even put on the kind of motor cycle helmet that covers the whole head! I am hypermobile, or double jointed as it used to be known, so my joints have been very overused for the simple reason that to me it is normal to bend in a certain way and I don`t always realise that not everybody can do it! As a consequence I have arthritis in quite a number of my joints now, due to overuse, so I am in constant pain. When the oncologist said to look out for new pains I was a bit worried as I have new pains all the time, I never know where a pain will strike next, and I can be in pain for a few days or so and then it will improve, until the next time!

The annual visit to the oncologist.

I get nervous every year when I have my annual check up with my oncologist, we had to wait an hour but saying that I have been in that waiting room for 3 hours before now, so I suppose we must not grumble! The other consultant who was doing a clinic at the same time was running 2 hours late, so I think it was the best option! The tablets I am taking, hormones, affect my arthritis and have started up lots of new pains, my shoulders, feet and hands are painful now, whereas I didn`t get much problem with them before. As these tablets can cause a problem with bone density I have to have a scan to make sure my bones are okay so I am awaiting the appointment, I just hope it does not turn out to be an MRI scan, I am claustrophobic and the idea of being pushed into the tunnel fills me with dread! Other than that the doctor gave me a clean bill of health and said I would be seen again in a years time, so hopefully the bone density scan will be fine.

The advantage of having no hair!

I know, I know, I can hear you saying "what advantages"?? I admit there are not many, but I like to try and find the advantage of a situation, look on the bright side I always say. So here goes, the advantage of having no hair is, when you have a shower your hair is not dripping all down your back when you get out! Also you don`t have to dry and then attempt to style your hair when you have had your shower if you do not have any, if you are anything like me, who doesn`t have much ability to style my own hair, that is an advantage! Pop your wig on, or more often in my case a nice brightly coloured head scarf, and off you go, sorted. I must admit I am glad now, 6 years after cancer, to have hair. Mine started to return just before my chemotherapy finished, it came back in tight curls which was rather odd, and very fine and soft, like baby hair. It is now back to pre cancer days, thick and wiry, slightly wavy and unruly, and I still don`t know how to style it!

Six years on.

My title says six years on, whereas actually it is coming up to 7 years in February 2012 when I was first diagnosed with breast cancer. Normally a period of 5 years is the norm when having follow up appointments with surgeons and oncologists but my cancer was fast growing and aggresive so I have ten years backwards and forwards to the hospital for appointments. I also see my GP inbetween so that he can keep an eye on my health, his request, so last week I saw him for my check up and this morning I had to go into the surgery for a fasting blood test, ECG and urine tests. Unfortunately, even though 6 and a half years have gone by the veins in my arms are still not good and the nurse could not get any blood out of me, despite trying twice. She called the doctor in, he had a go, even pumping my arm up with a blood pressure monitor a little way but still no joy. He told me to make sure I attend the surgery when I next go wrapped up warm and to drink a pint of water beforehand which apparently makes getting the blood easier, I shall believe that when I see it! So next Friday I have to go again to see a phlebotomist and hope that she can get blood from a stone so to speak, failing that Doctor Wonderful, or Doctor Nightingale as he is better known (Doctor Wonderful is my daughter in laws name for him!) will be called in and hopefully he will succeed if all others fail, he has done so far! My urine test was fine, I presume my ECG was too, nothing was said in the negative about it, but I could have had them done anytime of the day, I got up especially early this morning for my fasting blood test which did not happen, oh well thats me hungry again next week! Six years on, you would think my veins would have righted themselves now, I presumed they might, but apparently not. What a pain.

Sharp stabbing pains in the breast.

You get some strange this happening to you when you have had an operation to remove a breast tumour. I had a lumpectomy, or as it is known more so now a wide local excision, same thing really the doctors tell me. I do find, from time to time, that I will suddenly get sharp shooting pains in my breast. The first time I had this I became quite alarmed as they are really quite painful and ofcourse inevitably you wonder what is wrong. I mentioned it to my surgeon and also my GP and was told, by both of them, that it is merely the breast tissue knitting together and you can get pains for years while this happens. I felt better for knowing that this was a normal thing which was expected to happen and I think maybe somebody could have warned me that I may expect this to happen rather than have me find out by having the life frightened out of me, thinking my cancer was back.  Even though it is coming up to 7 years, well to be exact about 6 and three quarter years, I still get the sharp stabbing pains from time to time which can come on without any warning nor it seems any reason. I went to bed the other night, took off my bra and realised that not only was my breast quite swollen on the one side but it was also so painful I could barely touch the area and every time I moved my arm in a certain way the pain made me flinch. I could not sleep for the pain, could not lie on my left side, and began to wonder, during that long night, if I had my cancer back. However, thankfully, when I got up the next morning the swelling had gone down and the pain all but gone! It has not returned since, "touch wood", though I daresay it could, at any time. It is as well to be aware of this strange phenomenon just so you are not scared out of your wits thinking the worse, most of the time it is quite normal, just your breast tissue knitting together again!

All about chemo

If you don`t like needles, you are stuffed when it comes to having chemotherapy! 

First off I had epirubicin, which is a bright red coloured liquid that colours your wee bright red and can give you quite a fright if you are not warned about it happening! Some people have been known to think they are bleeding to death apparently, just because the nurse who gave the drug forgot to mention it would happen! I had an iv needle inserted into a vein in my hand and the drug was then pushed slowly into my body courtesy of a nurse with a huge syringe full of the stuff who sat in front of me. It probably took around 30 to 40 minutes for the drugs to be administered, I had mine mid morning and by mid evening I was being sick again and again. I was given anti sickness drugs but that first time they did not work properly, in the end I had to have the district nurse to give me injections over the course of 5 days to prevent my being sick every hour. They leave a 3 week gap between treatment, I think that is probably because you are so ill that your body simply could not take it any sooner. By the time the second session came around my hair was all but gone and I had the rest shaved off to stop it being found on the floor all around the house!

After you finish a few months of Epirubicin you then get to have a different type of drug, yipee! I had CFS, administered this time by a drip, again into an iv in the back of my hand, it took about an hour or so to go through. Again I had anti sickness medication, but this time I also had to take an antidote! Apparently if you forget to take the antidote the drugs just carry on working! Presumably they could then kill you! Nice. So on a certain day, at a certain time, and it must be the same time that you had the drug and so many hours later, you have to be precise, even waking in the night to take your tablet, you take small white tablets to counteract the effect of the poison the medics have filled your body with! Another few months, a treatment every two weeks for two weeks, and you finally get to the end of your chemotherapy. It took, in all, 7/8 months and in the middle I was having radiotherapy too, just to make things more complicated, and more difficult! So I started my chemotherapy in March and finished at the end of October 2005.  I thought it was all over, apart from taking tamoxifen for up to 5 years and having regular appointments to see surgeon and oncologist. Then I had lab results back from the hospital to say I had to have herceptin - a drug which then was not approved by NICE.  I thought I would have a fight on my hands, just as quite a few other women had been doing, their plights highlighted on tv as they asked, sometimes begged, for the medication that we should all have been entitled to, but which unfortunately not everybody got. I was on of the lucky ones, and many many thanks to those women who fought for the drugs. On the morning I was told,yes, you can have the herceptin, we heard on the radio that it was approved for everybodys use. So after Christmas 2006, yes it took all that time to find out if I was HER2 positive and if I needed herceptin, I started on the treatment. A year it took, backwards and forwards to the hospital, something I thought was finished, for another 12 months, iv needle in the back of my hand, herceptin administered by drip over the course of first of all, at least 3 hours, but which was speeded up after a while, so we got it down to an hour and a half. The nurses could not give it to me any quicker, they had to do it slowly incase of bad side effects. The first treatment I had, for which I was at hospital all day, I passed out! I had started to feel a bit odd, found that I felt freezing cold, I could feel myself getting further and further away in my head, if that makes sense, and the next thing I know the nurses were waking me up, checking my blood pressure and looking very worried. Thankfully that only happened the once while on the treatment, though I did have to have regular heart scans, once a month, because it can affect the heart and they needed to find out if I was okay. Towards the end of my treatment I did wonder if I would need to have a line inserted, I think they put one into the main artery/vein or something similar, which you have to keep clean and which has to be flushed out, it is into your chest/neck area so I did not fancy that at all, not only can you see it at all times, you have to be very careful not to knock it or catch it. My veins were almost all gone when I reached the end of the chemotherapy, so I am surprised they held up for the herceptin, but they did, thanks to the skill of the nurses inserting the iv line, even though they sometimes needed to have 2, 3 or even on one memorable occasion 4 tries at inserting it, my hand often black and blue in the process. I would need to warm my hand, and I could only use the one hand, the other was on the side that I had the operation to remove the cancer and you are not allowed to have anything sharp go near that arm incase you have lymphoma, and so I would have my gloves on to go to the hospital in the hope that my hand would be warm enough for them to find my vein, inevitably I would have to sit for a while with a warm lavender bag on, trying to warm it up even more. Time consuming business chemotherapy!

Treatment.

Just heard that the sister of a friend has had her breast cancer operation yesterday, they took 2 lymph nodes and at the moment she is in for 6 weeks radiotherapy, hope the lab results are good and she does not have to go through any other treatments.

I was told at the beginning that my tumour was grade 1 and as it was new I would only need a few weeks radiotherapy and that would be it. I was so shocked when the results came back from the lab showing that I not only had a grade 3 cancer, but it was fast growing and aggressive so that I would need radiotherapy and chemotherapy too, the treatment would be aggressive because the cancer was fast growing and I would definately loose my hair. Certainly not what I wanted to hear, my thick wavy hair was my pride and joy and the thought of loosing it was very difficult. I had it cut very short prior to it falling out, that was bad enough, but when it began to fall out in handfuls after the first session of chemotherapy I knew I could do nothing to stop it and so began to get a selection of scarves together to match my outfits. I had a wig, courtesy of the hospital, but I felt uncomfortable when wearing it, my head would feel itchy and in warm weather it was most irritating.

I got through the chemotherapy, it was not nice but I was very pleased when I reached the end, only to find out that my cancer was also HER2 positive and so I needed herceptin, another 12 months of iv drips and needles. At least my hair stayed where it was through the herceptin treatment, and apart from the first session, when I passed out while having the herceptin, it was a whole lot easier than the chemotherapy which had made me so sick, and which had me feeling as though I was on another planet for about ten days at a time! It was similar in that I had the treatment every 3 weeks and that the nurse had to put a needle into a vein in my hand (when she could find one) so that I was attached to a drip for an hour and a half while the drugs went slowly into my body at each treatment session, what people don`t realise is that chemotherapy treatment can be very time consuming! I still take cancer drugs, but it is much easier now in that I take one pill every day and have done so since my chemotherapy and herceptin all finished which was the start of 2007, I am on the femara for three years as far as I know, whether something else will be on offer at the end of the three years I have no idea at this stage, maybe something will be developed in the meantime. I am a bit nervous at the thought of not taking anything to prevent the return of the big C, but at the same time it will be nice not to have to side effects these drugs can cause. Thats all in the future, I shall have to wait and see what happens.

Scared of a return

You need your loved ones around you when you are diagnosed cancer.

It is not just while you have treatment that you need those around who love you, it is afterwards too, when the chemotherapy is finished, you are no longer attending the hospital every couple of weeks or so, and you are feeling scared that the cancer will return. Not everybody realises you are still vulnerable and may need the support. When my mom died nearing the end of my treatment I was gutted and found it hard to cope, I needed people to keep me positive. I needed people to keep their promise to visit, you didn`t did you?

Friends were there for me, my house looked like a florists shop the day I came out of hospital and I was so grateful for those loving caring family and friends for making me feel special and loved.

My annual mammogram and six monthly check ups at the hospital are quite nerve wracking, "will they find anything" obviously always goes through my mind. Even though 6 years, almost 7 actually, have passed now I still get times of worry, sudden panics, when I wonder if the reason I am feeling ill sometimes could be anything to do with cancer. The doctor told me I would be this way, and he was right, though when he said it I did not really believe him!

I live day to day, I don`t tend to look too far intor the future because I am frightened to do that, afraid of what may be awaiting me.

A ripe old age.

It is 6 and a half years since I was diagnosed with breast cancer and I am truly grateful to still be here. Although I try my best to stay positive, ofcourse I have times when I get frightened and worried that it will, or has, returned. If I become ill I have been known to worry that it is back even though common sense tells me it is just a chest infection or a headache, especially if the illness lingers you do start to worry and fret. When I found lumps in my neck I was, quite frankly, petrified. I had met a woman in treatment when I was at hospital having my herceptin one day who had been diagnosed with terminal breast cancer and was being given drugs to prolong her life. I made the mistake of asking how she found out and she told me she found a lump in her neck. I have already had one lump removed which was, thankfully, a benign reactive lymph node and I have found a few more which I have had scanned and which I was told were the same thing. I can`t help thinking, however, that one day it actually will be malignant. I try my best to put it to the back of my mind and get on with my life, after all what is the point of worrying it won`t keep it at bay but on the other hand a positive attitude may help. I expect most people who have been through cancer have similar thoughts to my own and I just have to keep telling myself I will get through this and live to a ripe old age.

I will start at the beginning.

In February 2005 I had a routine mammogram. I was six months off the age of 50 so it was my first such test, to be honest I did not want to go, I felt embarrassed, I did not know if it would hurt, I did not know what to expect, I also felt that because I was actually still 49 that I was too young and did not need one. My husband persuaded me to go, well to be honest he made me go, and in doing so he saved my life.

Within a few days I received a letter to attend the hospital breast care department and although I had not felt any lumps I knew straight away, instinctively, that I had cancer. That probably sounds fanciful but I immediately felt that my world was about to fall apart. How right I was.

I had a needle biopsy, and by this time I had detected a slight lump in my left breast, so when the radiographer told me which area they were investigating I was not surprised. I asked him to tell me the truth, he showed me the area on the scan and said he thought it was probably cancer, it was calcified, a clear sign. Ofcourse they could not say for sure until the lab results came back the next day, but he thought that I probably did have cancer.

Apparently I had several signs for a while, though I did not realise this at the time. My nipples were inverted, I had dimpling, a bit like orange peel on my breast around the nipple, a sure sign of cancer that I had not realised. If only I had known maybe I could have prevented the months of chemotherapy, the radiotherapy, the loss of my hair? I don`t know if that would have been the case, and it is pointless to look back and wish I had known, done things differently, it was not now going to change anything. I was diagnosed with breast cancer the day after I had the needle biopsy, I would need an operation to remove it, the lab would test the tumour and treatment would be decided upon from there. As the tumour was small, only 1cm, the doctors thought it would be grade 1, they thought I would need to have it removed and then probably a few weeks of radiotherapy on the area and I would be clear.

I had my operation, called a wide local excision, a few weeks later. Thirteen lymph nodes were removed and tested. The results knocked me for six, the cancer had already spread to three of the lymph nodes, it was grade 3, fast growing and aggressive. Not only would I need radiotherapy for a few weeks, I would also need chemotherapy for several months, I would loose my hair, I would be quite ill due to the treatments, as the cancer was so aggressive it needed an aggressive course of chemotherapy to treat it. Quite frankly I was petrified, the thought of the months to come filled me with horror.

That first chemotherapy was not nice, not nice at all, I was very very sick for five days, I felt as though I was on another planet for almost two weeks, the district nurses had to visit to give me injections to stop me from being so sick. I did not know if I could stand the chemotherapy, the side effects were so horrible. Approaching my second course of chemotherapy my hair began to fall out, the day before I was due to have my second treatment I had the remainder shaved off, not that there was a lot left by that time. I felt unfeminine, I looked in the mirror and saw somebody else looking back, I did not want to let anybody see me without hair, especially my children, not that they were strictly children by that time, both being in their twenties, but I did not want them to see their Mum in that state. I was not keen on the wig I was issued with, preferring most of the time to wear a scarf, especially in the warmer weather it made my head itch and was quite uncomfortable.

I saw my oncologist before the second course of treatment, which I had every 3 weeks via an iv drip, after telling her how very sick I had been she doubled my anti sickness drugs. From then on, even though I did feel sick each time I had chemotherapy I was not as sick as I had been that first time, not by a long way.

I had not known what to expect from chemotherapy. I did not know if I would take oral medication, whether I would have some kind of injections, or if I could be on a drip, would I have to stop in hospital? I think if I had been able to find out what could happen, if I had been given more information about what the treatment involved, side effects, and so on, I may have felt a bit better going into the unknown, but as it was fear of the unknown was worse than the knowledge, at least I could have prepared myself. This is why I have decided to write this blog, so that somebody who has just recently been diagnosed with breast cancer may be able to read this, find out information, ask questions, and then perhaps the fear of the unknown may not be so bad.