I have now seen a dietitian who is going to monitor my weight. I’ve also seen a coeliac dietary specialist to help with my new diet and the result is very sobering indeed. I am staggered by how extensively wheat in particular is used and which from this point on, will seriously limit what I will be able to eat. In an earlier post I wrote very cheerfully that
“At least gluten free products are now much easier to come by as most supermarkets stock them. They are more expensive than ordinary foods but I will be able to request quite a few things on prescription for free which will help enormously with the costs.”
The sad reality is that yes, there is certainly a reasonable amount of gluten free products available but it’s not nearly as much as I had assumed. I will be entitled to some staples on prescription like bread, pasta and porridge oats but that’s about it. Meanwhile I am astonished at just how expensive GF foods are in comparison with ordinary versions. Take bread for example: a standard small/medium white loaf costs around 75 pence. A GF loaf usually costs between £2.00 and £3.00 !!!!! This is but one example of the dichotomy between GF and ordinary foods and I will be relying on these foods for the rest of my life. So, as you can imagine, whilst I am hugely relieved and happy to know that I don’t have new cancer, I now have to face the fact that the simple act of eating is something that has to be planned with a great deal of care. Eating out is likely to be a thing of the past and even buying a GF cake in a café is risky if they don’t understand the risks of cross-contamination.
Currently I am finding the whole thing overwhelming and depressing. Scary and life-threatening as it is, with cancer you can usually go through treatment, come out the other side changed but safe in the knowledge that your doctors have done everything they can to kill off the cancer cells. Best of all, when you finish active treatment, you are indeed finished and it no longer plays a huge role in your life. Coeliac Disease has no cure, the only way to deal with it is to be scrupulously gluten free for the rest of your life.
Yes, it’s true that cancer is never far from my thoughts. It stole my breast, its treatment came very close to killing me and I feel that it’s there in the background, hiding, waiting for a new opportunity to once more wreak havoc in my life. The big but though is that it doesn’t affect my life on a very basic level, CD however, is going to do exactly that. There is no escape, not if I want to be healthy and without pain.
So what happens next? I have the follow course of action planned:
1. Try to sort out my weight. My dietitian has advised me that my weight will probably go down a little before it finally stabilizes but I mustn’t panic about that. I ate a lot of junk in a bid to gain weight so I’m bound to lose a few pounds now that those foods are removed from my diet. She has told me to aim in the beginning for 7 stone and to be back to that weight by the time I see her in six month’s time.
2. Sort out which foods I would like on prescription. Glutafin and Juvela both sent me a lot of products to sample and I am slowly working my way through them, keeping a record of which ones I really like so that they can be ordered from the chemist. I will also be reviewing them as I go along.
3. Get used to reading labels! Everything has to be checked as you cannot take any risks at all. The dietary specialist said not to beat myself up over the occasional mistake, especially in the early days but there is no room at all for ‘treats or cheats.’ The Coeliac UK food directory I mentioned in an earlier post is going to be my shopping bible. It contains just about every type of food on sale in the UK that is safe to eat. It has already saved me from making mistakes at the supermarket.
4. Educate the family about the dangers of cross-contamination and if necessary take my own supplies when going to stay with anyone. We now have a toaster for my use only and also a blender, which has enabled me to venture into the world of making my own smoothies but more of that in another post! 🙂 I may very well also have to venture into learning new cooking/baking skills, not something that fills my husband with joy because the kitchen is his domain as I am a pretty useless cook! 🙂
5. Try hard not to get despondent about it all. I survived the most horrendous experience that was my cancer treatment and lived to tell the tale, so if I can get through that then I can learn to adjust to this!
Getting used to the whole lifestyle that coping with Coeliac Disease requires is not going to be easy and sadly it’s going to be rather expensive too! 😦
I am putting up some separate pages on my blog for my going gluten free adventures so that it is easier to follow without having to wade though all the breast cancer stuff. You can read all entries from the links on the sidebar.
I have joined a simply brilliant organization; Coeliac UK, a charity dedicated to helping people with CD. they’ve already been an enormous help. The biggest single thing that will prove a life-saver is a handy book which lists all the foods available which are safe to eat as well as a complete listing of all the items you can get on prescription. This book is updated monthly so that the information is always correct. I don’t think I could manage without it at the moment because food shopping is something of a nightmare. Right now though it’s all about getting the hang of gluten free living and trying to get my weight sorted out. My first goal is to make it to 7st which should be possible once I start to benefit from the effects of the new diet.
More to come on all this in some new posts.
You may remember that I have been experiencing unexplained, serious weight loss over the last few months. Rather scarily I have lost almost 1.5 stone which has left me as a very unhealthy and frail 6st 6lbs! I am really pleased that after a number of tests, my oncologist is satisfied that there is no cancer lurking about and causing problems but she was obviously very concerned about just how thin I am. She thought the problem might be Coeliac Disease and wrote to my GP to advise that I should be tested for it.
I saw my GP this morning and he told me that I have tested strongly for CD and I have an appointment with a dietitian this Friday. I am not entirely surprised because my sister was diagnosed with it approximately 10 years ago and we share many of the same symptoms and internet research showed that I have all the classic signs of Coeliac Disease. In fact I am pretty much a text book case!
So what happens next?
Now the “fun” part begins as I embark on a gluten free diet. The dietitian will help me plan out an eating plan both to remove gluten from my diet and also how to gain weight whilst doing so. I can’t see this being a quick process but I’d like to think that 2-3 months should show some improvement. I am however also being careful not to expect too much too soon. We will also need to take into account that I have osteoporosis. It’s likely that this was caused by the CD initially and then exacerbated by all the cancer treatments. I am taking appropriate supplements along with a bisphosphonate in the form of Alendronic Acid weekly but the weight loss and the malabsorption caused by Coeliac Disease will not have helped things.
At least gluten free products are now much easier to come by as most supermarkets stock them. They are more expensive than ordinary foods but I will be able to request quite a few things on prescription for free which will help enormously with the costs.
So, there you go – yet another thing to add to the list of ailments! 🙂
More updates on it all after I’ve seen the dietitian on Friday.
Over the last few weeks I’ve been compiling a list of the things I want to review and have a few to start things off. First up is a review of the Royce Silver bra, which you can find by clicking here .
Coming up shortly are some cosmetic reviews and some more bra reviews.
I am slowly melting away
My view of the world grows smaller every day
Why is this happening to me?
Is this is how it’s meant to be?
I stand here in a burning circle of light
Is this what’s making me feel so slight?
I’m tiny now in spirit, soul and body too
My world is reduced to a keyhole’s view
That narrow path towards a kindlier place
A place to rest and see what I face
I’m melting my life away
Please, stop this and help me stay
I’m trying hard to hold on tight
To shade my eyes from a light too bright
Bring back the life I want so bad
Without the need to fight so hard
For the life I love I want to keep
Don’t let me fade away
I seemed destined to have bad or worrying things happen at this time of the year! Two weeks ago I found yet another new lump to worry about and then had all the usual agonizing wait for an appointment at the breast clinic. Once again the staff proved beyond a doubt that we are so lucky that this is our local hospital! Kindly surgeon, nurses and ultrasound doctor, all of whom knew my history and how scared I was about it being more cancer.
This time it wasn’t. It was in fact an extremely large cyst which I am hoping to get aspirated before it gets any bigger.
Sadly though, the shine was somewhat dimmed by the fact that my surgeon found several enlarged nodes which he is quite worried about. Having lost such a huge amount of weight for no other apparent reason would put cancer high on the list of probable causes for both the weight and the nodes. Tomorrow I will be having a CT scan from my clavicle down to the bottom of my pelvis in the hope that this will shed some light on the whole thing. I am more or less resigned to it being bad news of some sort because I’ve been tested for just about everything else and nothing has shown up. Kinda leads to one particular thing doesn’t it?
There is however some other good news to report and that is that I’ve been wig free since early this year! My hair is still not exactly abundant and terribly thin and limp but it is hair, my own hair! It is still growing painfully slowly and I have a few patches which look like they will never have much on them but on the whole I am pleased to look more like my old self. No, it’s not long flowing blonde locks but at least it is now back to being blonde. I am enjoying relearning the skills of blow drying, something I haven’t needed to do for nearly 30 years so it’s taking a while to get the knack of it but I’m sure I’ll get there in the end! 😉
Two years ago today, around 2pm, I was laying on our bathroom floor not breathing while my husband acted like the hero he is as he started me breathing and called the paramedics. This was followed by a twelve hour fight to save my life. I had hoped that the nightmares and the flashbacks would be gone by now but unfortunately they’ve not.
I can clearly remember the succession of doctors battle to get the Hickman line out of my chest and their discussions about how, if it wasn’t removed immediately, the infection in it would probably kill me. The voices, the smells, the incessant beeping of all the alarms on the monitors have taken residence in my psyche and refuse to be evicted.
I wonder some days whether the trauma of this and the PTSD it caused will ever go away. It makes me focus on almost dying, instead of allowing me to be grateful for still being alive. . .
The water in my pool is muddy, dirty, swirling around. I hate it but I’m stuck in the morass that surrounds it.
Over there is another pool, it’s quiet, it’s clear, it’s calm and beautiful, I just need to find a way to walk over and sit by it.
Today, almost exactly two years to the day that the very last of my hair fell out, I have had a ‘proper’ hair cut and colour and I am almost ecstatic at the end result. My lovely hairdresser has given me back a little bit of the ‘old’ me. Clever cutting, colouring and styling means that you would now need to look very closely indeed to see any bare bits as they are so well disguised. As you all know, the loss of my hair was a big thing and the fact that for two years I’ve felt that every day I saw a stranger in the mirror has been very demoralising when added to all of the other cancer crap I’ve had to deal with. It means a huge amount to look, and now feel, more like my old self and this I think will help me deal better with a lot of the other psychological issues I’ve been struggling with as it’s such a big boost to my self-esteem. It wasn’t until I saw the new, blonde me looking back, that I realized just how dull and lifeless my hair had been looking and I am sure that this contributed the whole thing about not wanting to let the wig go too.
The other nice thing is that I finally have enough eyebrows to make it worth tinting them. They are still a bit on the sparse side furthest from my nose but I do now look like I’ve got proper brows again. Until yesterday I’ve had to draw on eyebrows any time I went out with make up on and the novelty had most certainly worn off some considerable time ago. Now at least, all I need do is touch in the gaps – so much better!
The main reason I started writing this blog in 2010 was to provide myself with an outlet for my thoughts on dealing with a breast cancer diagnosis and to chronicle what happened to me along the way. I think it is fair to say that thus far, it has not been an easy road to travel with so many awful things happening along the way. I am however, over the worst for now and whilst I will still be adding posts about my treatment and life generally in respect of how it all affects me both physically and emotionally, there are other things I also want to write about.
One of the things I have noticed over the last two years is that although there are some truly wonderful blogs and websites out there, there are in fact very few that offer a place where those with breast cancer can find honest reviews on things like mastectomy bras for different occasions, sizes and budgets. Where to purchase a wig and how to wear it and look after it. What sort of hats suit different faces and where to buy ones that not only fit but do not break the bank! Cosmetics that help make us feel and look a little better both during treatment and after it has finished especially advice on how to do things like drawing on eyebrows during chemotherapy. If like me, you do not live near a support group or too far away from places where you can attend something wonderful like a Breast Cancer Care Headstrong session, information on how to do some basic things like this makes such a difference to your quality of life at a time when small comforts mean a lot.
It’s the little things that make all the difference.
Then there is all those important things that help you deal with the effects of treatment. Yes, there are plenty of lists floating around detailing all the sort of things to consider but I could find very few places where there were proper reviews written by those who were actually most in need of the products – us! For example, I wanted to know not just that X type of toothpaste helped with sore gums but which brands were best and why. It sounds silly but you would not believe the difference it made knowing which actual makes of things were the most chemo-patient-friendly and, if you were on a small budget, which of the lower cost ones worked best. I went through 3 different types of toothpaste and umpteen different types of toothbrush before getting a combination that worked for me. As I suffered terribly with Mucositis and mouth ulcers this was a very big deal at the time.
Having discovered for myself just how hard it is to actually find much of this information in just one place, I decided that I would have a go at providing as much of it as I could myself, based on my own experiences and that of friends in a similar position. I will draw on almost 20 years experience of writing various types of reviews in my quest to bring you the kind of information I was unable to find.
It doesn’t stop there however because one of the things that has truly aggrieved me since having a mastectomy is just how poorly we are served as far as mastectomy wear is concerned. Yes, there are plenty of very good brands out there selling very pretty bras but at such a cost that for most of us these are special occasion items not ones we can afford for everyday use. Oh and absolutely forget it if you do not conform to what most manufacturers see as a ‘normal’ range of sizes. If you require a larger cup size then the chances are you will be faced with virtually no choices at all and if like me you are very small, then once again the number of bras available to you is pretty dismal. Then there is the confusing advice about exactly what sort of bra one should be wearing. I have had so much conflicting advice that I really don’t know who to trust when it comes to this sort of thing and as a result I’ve pretty much given up on ever getting something suitable.
The same actually applies to mastectomy-friendly clothing, in that basically it’s more a question of finding out all the things that don’t work than discovering what does! I used to love wearing dresses now I live in jeans and T-shirts as it’s impossible to find things that work in either my size or my budget.
I want to examine why, when so many women (1 in every 8) have to cope with these problems, so many of us are left struggling to find the basic necessities that breast cancer surgery leaves us needing. I will be endeavouring to enter into a dialogue with some of the manufacturers and retail giants to see if there are ways in which some of these issues can be addressed.
That’s for the future though. In the meantime I am building up a list of things I have here at home that I want to review for you. I will start very shortly and these will come in the form of both written and filmed reviews, plus I am going to provide some ‘How to’ videos to pass on some tips I’ve learned over the past couple of years.
As they say – watch this space! 🙂
It’s been a long few months filled with some of those moments that so many of us are familiar with – the success, the failures and all the little things in between. In the past couple of months I’ve had some cancer adventures that I’d rather forget but there have been positive things along the road too.
Shortly after my last entry I had to deal with the horror of finding a new lump in my remaining breast. New tests, more worry but this time just something that needs monitoring rather than definitely being cancer. Still rather scary but not as bad as it could have been. I am back on 3 monthly check ups with my beast surgeon but there is at least the comfort that should it turn into anything worse, it will be deal with very quickly. I’m just trying to push the worry into the background somewhat so that it doesn’t become overwhelming.
I have had to finally admit that my health is never going to return to its pre-diagnosis condition. Sadly, whilst treatment may have saved my life, it has also destroyed my health and that’s been a pretty hard thing to come to terms with. There are far too many things that I can no longer do and miss so much, so 2013 is about learning to deal with this and finding a middle ground. I will be exploring what I can do rather than focusing on what is no longer possible. I’m not there yet but I do at least now recognise that there are things I can do – I just need to look for them and not set my sights too high.
Realism is the name of today’s game.
Other health concerns will need to be taken into account to ensure I don’t make myself worse rather than better. I am now on a fairly strong dose of daily morphine to help me cope with the crippling pain in my chest. This makes me incredibly sleepy – I wouldn’t wake up in the mornings at all if it wasn’t for my lovely husband. I have turned into the ‘Sleeping Beauty’ but without the beauty bit! 🙂 It’s not done much for my weight, which has plummeted, but at least I don’t spend every waking hour in pain which is a huge improvement on how I felt just a few months ago.
I have saved the good news for the very end though. . .
Three weeks ago I stopped wearing my wig! I realised that I could style my hair well enough that it was time to put aside my ‘security blanket.’ My hair is still very fine and thin, and in places there’s virtually none at all but it is now possible to at least hide the worst bits. I still wear my lovely long wig which enables me to look like my pre-diagnosis self when I want to dress up, but my every day wig, having served me faithfully has been carefully stored away. It was an incredibly difficult thing to do but I am so pleased that I’ve managed to do it!
My treat for the new year is a trip to the hairdresser to have my hair coloured and get some help on styling and caring for my new locks.
Am I happy with how I look? That’s a tough one to answer because when I look in the mirror I still have trouble recognising the woman staring back at me. Now though I am getting used to her and starting to at least think of her as a part of me, rather than some stranger I do not know.
What does 2013 hold for me?
First off is the hope of continuing to have NED (No Evidence of Disease) as my companion – so far, so good on that score!
As I said above,I am continuing to work on getting more accustomed to the’new me’ both in looks and health. This is a task for the entire year, not just a few months!
In other news, look for some developments for this blog; I am planning new and exciting things. More news about this very early on in the New Year.
Meanwhile, thank you for continuing to share my journey, I wish all my readers a peaceful, happy and healthy 2013!