What do you do if you start losing your hair?

Hair loss is quite devastating. I don’t think it makes a difference if you are a male or female. It all depends on how you feel about your hair and, if short hair, or no hair, suits you. For me, I always think I have a rather manly face if I have very short hair so when my hair started coming out in clumps I was so worried.

hair3 To begin with, my hair loss didn’t notice as it seemed to come out quite evenly, and I was pretty confident that, although it became very thin, it would just start to grow again and never notice. I was wrong! It then started coming out around my hairline and I had very definite bald patches. I was horrified! I started asking people in the waiting room at the post transplant clinic about their hair loss, and it was a common feature among all the people I spoke to. It’s great that when you have been through a common series of treatments, everyone knows exactly what you have been through and no subject is off-limits when it comes to talking. In fact I had the waiting room laughing out loud one time with my beard growth stories! It’s funny how you can lose hair on your head yet grow a fantastic beard that would rival Father Christmas!  No-one had a definitive answer as to what to do but as it’s growing now I thought I would share some of the things I did.

You can see from this photo how far back the bald patch went. It was both sides so no hairgood for a cover up as a middle parting doesn’t suit me. Unfortunately I didn’t take a photo of the bald patches as I was far too embarrassed.

At first I tried taking supplements. I took Biotin tablets and a general “skin, hair & nails” supplement. When you have any illness you need to check with your GP/consultant that any supplements you take don’t interfere with your medication. I also used Watermans Grow Me® shampoo and conditioner. I loved the smell of it and it left my hair beautifully soft! After a couple of months my hair still had no visible signs of growth. Looking back now I realise that it was probably far too close to the trauma of surgery and the 36 tablets/capsules of medication I was taking a day at that time. My body needed time to recover.

I continued having my hair coloured but changed to non bleach products and instead of every 6 weeks I moved to 8-10 weekly visits to my hairdresser. I’m lucky to have a hairdresser who understands what I’ve been through and why my hair is like it is. She helped advise me into cutting it shorter, putting in more layers, and colouring in such a way that my hair looked fuller than it was. Some might question why I continued with colour. Well to be honest I had researched on what other people did and I didn’t see a vast difference and, although I work from home now, I wasn’t at the time and was more on show than I am now.

The next treatment I tried was to crush Biotin tablets and add to coconut oil and rub into my hair. I left it overnight and shampooed and conditioned as usual in the morning. Again, this left my hair beautifully soft and made me feel much better and I started to see some growth.  I was still on the supplements. For any treatment I think you have to persevere for at least 6 weeks.

I asked my consultant what I could do to speed up the process and he suggested REGAINE®   for women. It’s a foam which you apply once a day. The problem I found was that it needed to be applied to the scalp and not the hair and I found it very difficult to do with a foam. It states that once you start using it, and see hair growth, you need to continue using it or the benefits will be lost. I was also worried about toxicity. I’m not saying it was toxic but I need to be very careful with anything entering my blood stream as it can damage Morgan, my transplanted kidney. I used it for a while and I feel it helped but as I didn’t plan to use it forever I decided to stop.

More lately I have been using OGX®  Biotin and Collagen Shampoo and conditioner. It’s available from most supermarkets which makes it more easily accessible. I have come off all supplements now.

My hair is now growing and is stronger. I will never know if it’s just time I needed or if anything I did worked but I’m glad I tried them all.

I have what most people after hair loss have……the new hair has come back wavy! I can now see that I lost hair all over my head. I have a little Mohican going on at my crown (great huh?). I already had a cows lick hairline so with the new hairline growth I now have a very sticky out wavy bit! My wonderful hairdresser, Chloe, has taught me how to use hairgrips to hold this wavy part of my hair out-of-the-way so it looks better.  Simply take a small strand of it and twist it, incorporate a little more (like you would with a plait) until you have it all and then put the hair grip in facing towards your hairline. Like this…..

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I think it covers that patch well! I’m sure it can be done neater than I do it but it still looks great!

So now I feel that I’m finally out the other side. It’s taken nearly 2 years. I must admit than when you go for a transplant you are not warned about the many side effects that it carries. I guess the gift of life is far more important, and it’s really insignificant given the larger picture. I feel that everyone thinks that a transplant is a cure (it isn’t, it’s another form of treatment) so it’s assumed that I am now better and so they wouldn’t expect any side effects. If I mention my hair loss to anyone the usual answer is “but you look so much better in yourself so don’t worry”. I do worry though……I think most people do.

If your hair loss is greater than mine then it’s worth getting a good wig. Go to a proper wig maker and then get it styled properly so you get the best look. These days wigs are great and a lot of people use them as fashion accessories so no one will even think about it. I found a great fb page called Hair Necessity. It’s aimed at women with alopecia. The lady that runs that page, Rebecca, is inspirational! If you are looking for comfort and inspiration then it’s a great place to start even if you are a man.

As for me. This is my hair now. I still need to grow it out more to stop my wavy bits (it’s been straightened in this photo) but, I finally have reached a point where I’m happy with it. This is mostly thanks to Chloe at Hair L’Amour.

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I’m off to sort out my beard now so I’ll catch up later…….if you have any ideas or help for myself or others going through this then don’t forget to leave a comment. It would be lovely to hear from you x

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Knitting for comfort

After Darrens surgery he was very sleepy so I sat with him until 9pm (which was the latest I was allowed to stay). The temperature was -1 outside so I didn’t want to drive much later than that in any case. He didn’t want to talk, obviously, but he wanted the comfort of knowing I was there. I’m the same in hospital, I can’t sleep with all the lights and noise but as soon as a visitor arrives you feel so comforted that you could easily fall asleep.

I decided that now was a good time to get my knitting out. I had bought a knitting kit from Amazon Prime as I left it last-minute before deciding it was a good idea to take. I usually get a great urge for knitting but then take a year or more to finish a project so I wanted something quick and easy. I chose the Urchin Spiral Hat from The Knit Kit Company. It came in a zipped bag with everything I needed to complete the project. It was a little expensive seeing as I already had the knitting needles and tapestry needle but it’s aimed at beginners so it would be perfect for someone starting out. When it arrived all I needed to do was take it with me, it was so easy. I love the packaging and it also came with instructions on how to knit! Fantastic for a present! I must look at their website to see if there is anything suitable to teach my Grandchildren to knit something!

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I’m the sort of person who has to follow instructions to the letter so I was happy that the pattern was so easy and precise. It took me through the rows step by step and didn’t do what a lot of patterns do and say “continuing in the pattern please decrease……” as if I know the pattern! I was tired and didn’t have the concentration to do anything except a simple, easy to follow pattern so this hat was perfect! The end result was as expected……a hat lol.

 

I’m not the best knitter in the world but I really enjoyed making this. I loved the bamboo needles too, they were new to me. I would recommend this project for a beginner or as a present for sure.

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Testicular Cancer-operation day…….

So the day has arrived, and I must say that Darren has remained calm over the past week. I guess we both know that, these days, the anaesthetics are very safe and you get given anti-sickness drugs and pain relief whilst you are asleep, so by the time you wake up you feel fine and can even feel like eating. I remember in the “olden days” (when I was a child lol) having my teeth out under gas. That horrible rubber mask over my mouth and nose and me fighting to get it off until I was overcome by the fumes. I remember waking up after having 4 teeth removed (I didn’t have enough room in my mouth for all my teeth) and feeling awful! I was basically carried across the road to the park to get some fresh air. My parents were firm believers that fresh air was the cure for everything. It didn’t make me feel better that time!

So this past week I haven’t slept very well. It’s always assumed that I’m the family member with the health problems (since my Mum passed from kidney disease/heart attack). I’m not used to seeing Darren having many health problems, whereas I was quite poorly for 6 years and had numerous stays in hospital. I hid my kidney disease well most of the time though.

I feel very sad. I mean, he saved my life by donating his kidney so surely that should give him a health pass for life? I also feel guilty that he is having an anaesthetic with only one kidney. It’s not actually relevent to the operation itself but it does mean that some drugs, like anti inflammatory medication the Doctors may otherwise use, are no longer an option for him and really no pain-killer apart from Paracetamol type drugs. There’s nothing wrong with Paracetamol (I’ve been allowed only those for years) it’s just that sometimes you need something a little stronger. He isn’t allowed now he has donated.

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Darren has just gone down for surgery. He will have his operation and then be cared for in the recovery room for a while. I will see him in 2 or more hours time. I’m allowed to remain in his room and wait. It’s a lovely room and has a shower room/toilet so that’s great for me as I drink 3 litres of water a day! Darren is covered by private medical care. Under our local NHS hospital I wouldn’t be allowed to use a patients restroom so would need to go to a different floor if I needed it. As I work from home it would be difficult to keep packing up my laptop so I’m really grateful right now for this room! Not that this is about my comfort! It’s not a slur on the NHS in any way either, I might not be alive today if it wasn’t for them. For today though I am grateful for being in this hospital. We feel spoilt for the comforts of this room.

I have been using the internet to look up the percentage of testicular cancer being benign and the odds are really in his favour so that makes me feel a lot less nervous. We won’t have the results of that for a week or so but are both expecting the best result from this. The surgeons had their meeting yesterday and no one had ever seen this before so we are no further to finding out what it is without testing it in any case. One suggestion was a crush injury causing the tumour but I really think that would bring tears to the eyes and he would have noticed that?!

So I sit here waiting (and working) and if I get very agitated I might even take my knitting out to take my mind off things! There’s nothing like fresh woolly stitches on a knitting needle to give you comfort!

I’m trying hard not to think of all the things that could go wrong during the operation. There’s no room in my life for such thoughts (or so I keep telling myself). I’m not feeling alone. We’ve had so many messages of support and even FaceTime from my Daughter and youngest Granddaughter (little un doesn’t know what the operation is for but wanted to say good luck). I know my family/friends are just a phone call away but for now I just need to be calm and alone.

Having Aspergers means that emotions can be overwhelming. I tend to suppress them unless I am very stressed. Even then I just tend to hide away and cope on my own, so for now, I’m happy in this closed room with my own headspace and sit and wait for Darren to return. He won’t be long……just a few hours of worry that’s all!……….it’s actually getting dark outside already so it feels kind of comforting if that makes any sense?

I have snacks and my 2 litre water bottle to keep me going.

to be continued………

Bunk beds-finding a strong one at a good price

We have 3 Granddaughters. They used to sleep in our little box room when they came to stay. We used a bunk bed and a small trundle-bed but that left no room at all for anything else. We used our conservatory for their toys and I read their bedtime stories perched on the edge of the trundle-bed.

Recently I turned the box room into my office and have transformed a bigger room into their sleeping and play room. I have now freed up the conservatory for our craft room so it’s win win!

The bunk bed has never felt completely safe to me. Instead of screwing the slats into the bed supports they were balanced into plastic ends. We had adjusted the bed to make it safe but on transferring the bed to the next room it seemed unsafe again and when we pulled on the side the slats just popped out! I decided to burn it! I’m extremely safety conscious when it comes to anything so it just wasn’t worth the risk to me. The next time the girls came to stay we all slept on mattresses in the lounge and watched films and ate snacks. The girls loved it! It took me a long time and a lot of research to find the perfect bunk bed. I didn’t want to waste our money on another bed that didn’t feel safe.

In the end I decided on a triple bunk bed to save room. I chose the Triad 3ft Single 3 Tier Heavy Duty Solid Pine High Triple Sleeper Bunk Bed (gosh that’s a mouthful!). The bunk bed has been tested to take the weight of up to 18 stone (114kg) each bed!! This means that it’s safe for me to climb onto the top bunk to make the bed!! That’s got to be a huge plus haha!

photo taken by myself

My 87-year-old Dad helped me build the bed as we both work in the same way…..methodically!! We would drive Darren mad so it’s best we are left alone to work lol. I love spending time with my Dad. He was extremely ill last year (and isn’t fully recovered) and we thought we were going to lose him, so my time with him is very precious to me. I didn’t note the hours it took but we had no problem at all with it.
Photo taken by myself. A lovely strong base!

It’s lovely to work and chat and we had a wonderful time working on this project.

We agreed that this was such a strong bed. No wobble and it leaves a good gap for the girls to sleep comfortably (and safely). The girls are aged 4, nearly 6 and 10 so this bed is perfect.

 

Testicular cancer…..tests results day….

So yesterday we went back to see Darren’s consultant for the results of his blood tests and CT scan.

Thankfully the results were as we hoped….no cancer markers and no signs of any spread on the CT scan. In fact the only abnormalities shown were the tumor on his testicle and a space where Morgan used to be!

I must admit the consultant looked very perplexed as if he was hoping to see something. He said that it was unhelpful as he still doesn’t know what it is. It’s so abnormal that they will discuss at the regular consultant “meet ups” where they discuss their complex cases to see if anyone had any ideas. A picture sprung into my mind of a book club meeting but about testicles…….funny how the mind works sometimes!!

In any case it needs to be removed so next Wednesday is the day. It will be in the afternoon.

Of course the operation carries risks, as does any surgical procedure. He can expect anything as he has surgery there before so there may be adhesions and it may turn out to be a bigger operation than planned.

It’s best not to focus on what could go wrong or we’d never do anything in life. I like our optimistic view on life! It’s our positive approach on life that keeps us going no matter what life throws us.

I can stay with him and stay in his room while he has surgery. I might even knit a scarf while I wait…..isn’t that what people do?? What do you do??

Darren is different to me in the fact that he doesn’t like spending a night without me whereas I’m more like a “woohoo I can eat crisps in bed and make a mess” kind of girl!! So I will stay as late as I can so that he’s not alone and then pick him up and take him home the next day. I expect I’ll be home too late to want to eat crisps in bed though haha.

The next step is for it to be sent away for testing. We are hoping that’s the end of it.

Darren has the option of having a testicular prosthesis inserted. We have discussed this together and he has made a decision. Although I want my blog to be as open and honest as I can be, I don’t feel this is for me to discuss! It’s not necessary for people to know but if anyone is going through this and want help making a decision then there are plenty of discussions on the internet. It’s worth getting as much information as possible. Don’t be hasty either way or you could regret it later.

There are also other options like banking sperm. Again it’s an individual decision. I think that looking after our 3 young Grandchildren has made him realise that having more of his own is not something he wishes for haha!! (I let him make this decision with my blessing as we have to face facts that although I plan to live until 100 anything can make Morgan fail and I could be dead within a week…..not likely though!! Just being realistic). I think this has to be the mans decision and it’s of no relevance to the relationship as we never know how life will turn out from one day to the next.

So in 5 days time I will probably be a nervous wreck with no fingernails but for now I need to get ready for 3 beautiful monsters descending on our house for the weekend. Nothing more lovely for taking your mind off things than having Grandchildren staying for the weekend!!

Let’s talk about testicles…….let’s talk about testicular cancer….

When I said that life isn’t easy and takes unexpected turns I wasn’t expecting what was to come next! My Husband, Darren, has always been the healthy one. I think the only thing he has medically had since I met him, (apart from the terrible thing that men call man flu), has been a hydrocelle in his testicle. He was diagnosed just before my transplant and so the transplant work up was put on hold for 3 months whilst he recovered.

Men don’t tend to talk about their personal problems as openly as women do but after his operation it was surprising how many of his friends admitted to having the same problem. If you’ve ever been in a room where women are discussing child birth you’ll know that most of us women have a no holds barred approach to discussing our bodies!!

Last year Darren’s testicle started swelling again. Thinking it was his hydrocelle reoccurring, (something he was told could happen), he decided to wait a while before going to his GP. I think it was just trepidation about having another surgery so soon after having major surgery.

So a few weeks ago he decided to get checked out. He has private medical insurance through work so he was referred to a specialist very quickly. A scan was done and we went for the results last week. To our shock we were told that the scan showed abnormalities and the testicle would need removal. An appointment for surgery was set for next week. We sat there in absolute shock as you can imagine.

We were asked “any questions?”. Well what can you think of when you are just expecting something pretty routine and suddenly parts of your body will be taken away and you could have cancer?!!!

On Saturday Darren had a blood test to check for cancer markers and today we are sat in a waiting room with a jug of aniseed flavoured liquid to be drunk within the hour. A CT scan will be done in an hours time. This is to cover head to tail to check if anything has spread.

All the results will be given to us in 2 days time. That feels like a lifetime away right now!

We hope and pray that these results are all ok but even that isn’t the end…..the testicle will be sent off for testing and depending on those results he still may need radiotherapy or chemotherapy.

To be honest we are both positive people and are expecting the best results. This is life! We all face the unexpected from one day to the next but it’s our attitude towards life’s journey that defines us.

Roll on Thursday! We can do this thing!!

Diet or lifestyle change?

this is the question I’ve asked myself too many times! Should losing weight be a quick fix to get to where you want to be, or should it be a permanent lifestyle change?

Since Morgan (my transplanted kidney) came into my life nearly 2 years ago I’ve gained 5 stone in weight!! (that’s 32kgs!!) To be honest, at the beginning, I was doing really well with my weight. I lost a lot of weight in hospital (let’s not blame the food huh?) and was determined to keep it off.

6 weeks after transplant with my crazy donor husband. This is now my weight goal!!

At one of my check ups I was advised to gain weight to help with my recovery. My plan was just to increase a little, but I started eating more and more and never actually stopped!! After all, I was on a restricted diet for many years, and now I have very few restrictions, so why not?……… Well I certainly regret it now!

My weight gain has affected me in so many ways. I have lost so much confidence. I find myself cancelling nights out at the last minute because of the way I feel. I wonder if it’s because the weight went on so quickly for me? I went from feeling fantastic about myself to really disliking my body. Please don’t get me wrong, I love my new lease of life and I love Morgan and my wonderful husband who gave him to me, it’s just not as easy as I thought it would be. I didn’t take steroids into account and boy do they make you feel hungry!!

So what has changed? Well, loads of things; I seem to have more than two armpits these days. I’m not sure when that happened but one day when I was putting my deodorant on I wasn’t sure which area to cover and I remember being really disgusted with myself for allowing that to happen. I seemed to have expanded overnight!! I can’t even see certain parts of my body anymore without mirrors! I take up a lot more room in the bath! No more bath sharing with hubby that’s for sure! I struggle to paint my toenails as my stomach causes too much pressure and I get breathless. When my Grandchildren ask me to play on their trampoline I have to say no because I’m not sure it can take my weight. These are worries I’ve not had to face before. Weight gain has definitely made me feel so much different.

me now with my wonderful Dad

Now I’m lucky to have friends that I can tell anything to. I’ve never been one to wallow in self pity, so when I have a problem they know to take me seriously. I was chatting to one of my friends about how I was feeling and she turned to me and said “you can either embrace the new you or you can change this but you can’t continue to feel how you do about yourself”. I knew this really but when you hear it out loud it makes a huge impact because it makes you stop and think and to realise that only you have the power to change the way you are or the way you think about yourself. I cannot go through my life hating my body without putting in the effort to change it! (or accept it). Up to that point I had people telling me I should be grateful for my gift of life and how much better I looked in myself and I shouldn’t worry about such a small thing as weight (although I don’t consider 5 stone a small thing!!). I am so grateful for my new kidney and my new lease of life. you cannot believe how much my life has changed unless you have been through it yourself, but this is not connected to how I feel about my transplant at all. I have been so blessed and I know that.

I saw my consultant recently and discussed my weight with him. He has advised me to take the low carb diet route. I am very lucky to have a dietician on hand every time I visit the renal unit but on this occasion I decided not to go. To be honest, as brilliant as they are, I didn’t want to discuss my current diet!! Maybe I will change my mind next time but for now I am using the internet to gain free menus and diet plans. I am not weighing myself at all as I don’t feel this is about numbers for me, it’s more about how I feel and I will know when I feel right about myself again. I have a check up in March and that is when I will get numbers. I will share my weight loss then!

Please follow my journey and please let me know what has helped you on this journey x