My name is Loretta and until last November I had a rather unremarkable medical history. I had had all the usual childhood ailments, check ups and scans over the years, all routine things but then it all changed.
I found a very small breast lump and promptly went off to see my GP who also commented on what a very small breast lump it was but advised to get it checked out. Within 10 days I was at the Nightingale Centre at Wythenshawe for a mammogram and ultrasound. The consultant on their initial examination said what a small lump it was, it didn’t show on the mammogram and the Radiologist said on the ultrasound that the lump was small but not the usual shape.
At the end of the morning I went back to see the consultant who said that the initial results were inconclusive and no one wanted to make a decision as to what it was before the full biopsy was back a week later. I think it was then that I knew, this was the worst day throughout the whole process – the not knowing.
A week later I was back in clinic and the consultant confirmed that it was malignant but very small. They recommended that it could be removed via lumpectomy and at the same time they would take a couple of lymph nodes to see if it had spread anywhere else. If it had not spread then I was told would probably need 15 days of radiotherapy and then it would all be behind me or so I hoped. It was now early December and everything around me was changing very quickly.
There was another piece of good news if that’s possible when you get such a diagnosis that there was a cancellation on the surgery list and before I even knew when it was I said yes. I just wanted the lump out however small it was. The cancellation turned out to be the 21st December. I must say I am also very lucky that one of my very good friends is a GP and told me warts and all what was happening and what would happen. For things like this I like warts and all, I don’t do surprises well whether they are good or bad. Another bonus was that my friends partner had had a mastectomy about 4 years earlier so they had also lived through it.
The surgery went well it was a day case and I was back home having dinner by 9pm. The next day I was a bit sore but I went for a gentle walk and to finish the Christmas preparations as I had done 90% just in case the surgery was more debilitating than I thought. My uncle was also due to visit for the holidays and we did everything as planned if just a bit slower.
Before the New Year I had an appointment for the first week of January to return to clinic for the full findings and for them to decide what my fate would be. We all kept saying the as long as it had not spread then by Easter all would be normal.
I was lucky and on the 6th January the news was good. The lump was a grade 2 in situ carcinoma, nothing strange or special which is what you want with a tumour as medically they know what to do, it is just the ordinary variety as my surgeon said. The lump was only 7mm the tissue round it was clear and so we’re the lymph nodes. It had all been successfully removed and had been a routine procedure. At this point the surgeon said that my histology report was negative which meant that it was to a hormone based tumour.
There was no reason why a cell had mutated, I would just have to live with the fact that I was an unlucky statistic. The surgeon did say though that they wanted to talk to me at the Christies Hospital to see if I wanted to undergo chemo. At this point I obviously asked why and was told that it was to be a belt and braces approach even though the benefit was less than 5%. I asked my surgeon what they would do in my position and they said that they would probably not bother for such a small margin.
However, being pragmatic and thinking in that n my head every twinge or Ill feeling in my head I would think it had returned. In my own profession I work with stats, numbers, probability and likely outcomes I knew even before I went to the Christie what I would do.
I also spoke to my friend again who confirmed my understanding and then I waited for the appointment to arrive. I was quite relaxed about going to talk to the oncologist as I had already decided. The oncologist confirmed that the benefit was probably only about 3% but I did not want to be in that small % of having a chance that it could return and neither could the oncologist. They said that some with a 20% benefit turn down chemo and as it was so small a margin I would have to make the decision. I explained my rationale for having the chemo and the oncologist said that I had understood the reasons why this is offered. Very sadly I did understand as I knew that I would be making myself ill for my long term well being, bearing in mind my tumour was out. This really was my 30 year insurance policy.
As my oncologist said there was nothing wrong with me except that I had this small lump. Very few women present with a tumour of less than 1cm and another by product for cancer research is that they would also collate more data in this area as well. We then discussed the side effects and the long term effect of the treatment on me. I was happy with all the other possible negatives as these in my opinion were nothing compared to the benefits. Perhaps if I was 71 and not 51 I may have just settled for the radiotherapy.
The most obvious visible side effect is the hair loss. No doubt in the future they maybe able to eradicate or eliminate this as well as time goes by. However for now this is the most outward sign of the treatment. I was told that after the first session it would take about 10 days before the hair started to change and then the loss would begin.
My treatments would take the form of 1 treatment every 3 weeks for a 9 week run and then once a week for 9 weeks. 18 weeks in total at this stage it felt like an eternity and then there would be 15 days of radiotherapy. I was to start on the 5th of February.
It was the day I came back from the Christie that I decided I needed to take control of one area the hair. I needed to sort out a wig quickly as I probably only had about 3 weeks before it would become critical. I did not like the idea of the hair becoming patchy or thin, I don’t think either are a good look for a woman. I had long dark brown/chestnut coloured hair it would be very noticeable. I wanted to leave work on Friday and return on the Monday as normal.
Off to do some research then. However, I probably only had about 10 days before the treatments were due to start than probably another 2 weeks so the clock was ticking in more ways than one to get something sorted sooner rather than later. So what do we do in the modern world we go to Mr Google to find out who does wigs locally. Having said that I would use Google for ideas and locations of what I am looking for but not for advice. I’m of the opinion if it has taken someone many years to build up their knowledge and expertise why do I think in half an hour I’m going to be an expert? In my own profession it has taken me nearly 30 years to amass knowledge so whilst the Internet is invaluable it is very much buyer beware!
By this stage I had also decided against having the cold cap. This is a cap like devise that goes on your head to freeze the hair follicles before each chemo session. There is no guarantee that it works and again like the drugs I have asked 10 different people and you get 10 different outcomes. Again from talking to a client who had used the cold cap and a retired doctor she had said that her hair thinned a bit by bit but it did hang on in there. I asked if there was any thing else to consider and she said not. I was a little unconvinced as she was a bit evasive when pressed further about anything else I ought to know. One of my other clients had taken the same fact as me and gone for the control element and had it all taken off early in the process and purchased a wig.
I then spoke to my friend who was a about 4 years post treatment and diagnosis who has been the best sounding board for me. As a retired nurse and ex of the Christie and other Manchester medical institutions she was the most frank. She had tried the cold cap. It was applied not whilst you were having treatment but a couple of hours before. This she said meant that however long your treatment on the day was you could easily add 2 to 3 hours at least to your day at the hospital. This alone didn’t appeal but I still thought about it. She then said she only did it for one week and then gave up, and the reason was? The pain she said was excruciating as your head is frozen and this was worse than the treatment itself and lasted for hours afterwards with no guarantee. This was the only evidence I needed to pass on this combined with the additional hours at the hospital.
Losing my hair was a small price to pay in my book for the treatment and the future that it would give me. Everyone told me that my hair would grow at the end very quickly. As I don’t need to take drugs post treatment then it will grow as soon as they start to weaken and my hair should be in better condition than before. It was coming off. About a week later I had to talk to the retired doctor on a matter I was dealing with for her and mentioned what my friend had said. Quite nonchalantly she said that yes it was very painful and she had been in agony some days but she said that she didn’t have great hair to start with and was totally paranoid about not having any. Enough said that had clinched why she had been evasive a week or so earlier.
My friend who was more than blunt about matters has been a great sure of comfort when I have had a wobble about things. Like, should I go to the office Christmas party with my lump? The reply why would you not go with it you can’t leave it at home, you’re off for surgery in about 10 days and if you don’t go you will just make yourself more miserable at home. Go and give your husband a night off. Medicine taken and off I went to forget things for a few hours. Another classic at what point are all these nasty side effects going to kick in and will I get XY and Z? Who knows what you’ll get, what version and how you are going to feel, you’ve just got to go with it. No matter how hard you try your not going to able to control this, just get on with it!
One decision I did make and many others I have spoken to have thought I’ve been a bit softie that I have stopped drinking during this period there’s no right or wrong one with this as well. I just feel that I don’t want anything to mask how I feel or perhaps the tiredness etc so I’ve hit the wagon till it’s all over. I’ve started taking a few vitamins who knows if they are helping or if they are just a placebo who knows but in my head it helps and sometimes that’s the only rationale at this stage.
My younger colleagues in the office asked how much research I had done on my tumour. Very little in fact for the above reasons I was going to be in the hands of experts no way would I be one in a month or 2 on this illness. I’m not saying I’ve got google terminology and explanations but nothing more than bits on the periphery. Again going back to my friends, acquaintances and clients a lot of them have varying backgrounds in medicine and care related professions. Again at this sort of time it was a God send.
Meanwhile back to the wig. A few came up locally, I searched for Wigs in Manchester on Google as this is the area I live in. However, what you are often looking for is under your nose and Chris has his salon next door to my office and I must pass his front door a dozen times a day. A start then. I mentioned Chris to my neighbour, who knows Chris and has seen his work first hand for many years. Another good outcome. My neighbour works for a very famous beauty house, a really handy neighbour, and many of his clients have wigs and hairpieces for a variety of reasons. I had never thought of people wanting wigs for alopecia and baldness, it was something I had never suffered from and with my mop unlikely to I was always under the assumption it was mainly for these reasons such as illness that wigs are required. Again shows you how little I knew starting on this journey.
Anyway after chatting to my neighbour and with him explaining the great work that Chris did locally where else was I going to start. So off I went after making an appointment to see him in the wig room which is a private part of the salon where you can feel not only relaxed but apart form the rest of the clientele if you like the idea of privacy.
Before going I had already said that I wanted a relationship hair piece as if I was going to be in it for a few months I wanted to look not just as good as possible but as normal and natural as possible over the coming months. It would be on less issue to think and worry about. The day of the appointment arrived and I was bit apprehensive. Since November it felt like that it was just a series of appointments and meetings each one needing careful attention and decisions that had to be made quickly and accurately.
To put this in context and Chris won’t be happy with this one. I have never liked going to the hairdressers. As a child I used to cry at the thought of pain and then used to go into hysteric once in the chair. There was no rationale for this. Looking back I had never had a bad experience or any sort of trauma at the hairdressers, but who knows where this came from? I was far happier taking a trip to the dentist, strange child. I look back on old photos and cringe like most of us who had bad hair cuts in the 60′ and 70’s but who didn’t? It was also the norm then and this couldn’t have been the source of the trauma. I did however, like going with my mother who went for a weekly set. I enjoyed going with her to cause mayhem like opening bottles, playing with the taps with attachments on and spring things round the place and leaving it in an utter mess when I left.
I can still vividly remember the hairdresser on the occasion that I accompanied my mother making reference to the fact that she had brought me again and for my poor old mum it couldn’t have been much fun or very relaxing to have such a child in tow. As I’ve got older I put the dislike down to the boredom, I’m not patient I’m inpatient and it’s an hour or 2 I’ll never get back. In the past I’ve left with wet hair once the boredom has really kicked in and on some occasions I have come home and rewashed it . This is the woman who was going to have a wig!
My decision for a wig stemmed from the fact that I didn’t suit a scarf on my head and there are a couple of reasons neither of which are printable, I’ve never been a hat wearer but a wig would give me a feeling of looking normal. So off to Chris to have a wig fitted and purchased, then I would be hairdresser free for a few months till it started to regrow, every cloud has a silver lining or so I thought.
I had long hair at the start of the year and every 16/17 years I would go for total crop and start again, the last few months I had been toying with this for 2016, I’m of the opinion that things happen for a reason or did my subconscious know something? Whatever the reason it was coming off and perhaps bit quicker than either planned or anticipated.
At this stage I must also share that with long dark brown / chestnut hair that was wavy I would tip it upside down to dry it then pop a bit of spray on it and go. I washed it most days after exercise and the hair took probably a total of 10 minutes to sort. Don’t get me wrong I went often for a cut as I wanted it to look healthy and glossy and for that a good cut is essential but the rest of it in my book was a bit unnecessary. I had also thought about the future as I started to grey would I suit it as if not the salon trip would be extended with the need for colour and that filled me with in trepidation as well.
So poor Chris gets me in the wig room and we start to chat about what I’m looking for. Like with any procedure taking advice from the professional the more you are happy to share the better the outcome as the advice and recommendation is then tailored to your exact needs. Now’s not the time to be shy or not to share there’s a lot going on try and make it as easy as you can for yourself.
After trying on a variety of wigs we decided on the one. I only had a short time so not enough to have a bespoke made to measure one but as near possible off the shelf in terms of fitting. So if you have time the sooner you start the better if you want a bespoke one. The wig was fitted and the final fit would come once I had my head shaved. Being pragmatic I could control this and the timing and it was decided that n the day of my second treatment after the hospital I would head off to Chris and have the hair shaved and the wig fitted. I would not be able to control how I would feel on the drugs but the hair was in my power to sort. I probably wasn’t much attention to him at this stage when he said what was I going to do in terms of the maintenance of it?
Maintenance? I was going to back at the hairdressers for a few months was I? Chris then explained that with real hair every couple of weeks to keep it looking in top condition then it needs to have a wash and blow. Perhaps restyled, trimmed and maybe even a different cut altogether! I was beginning to understand that this wig would have a life of its own for the next few months. He did say I could do this myself. You’ve heard about my hairdressing skills, poor to say the least. It’s not my profession why would I be any good at this and why did I think I could manage a wig. I left thinking we’ll see and I’ll make the decision later.
Only my husband said what I thought a out maintaining the wig. He knew I would have the patience and time span of an ant to deal with it so had I thought it through. As he said that he didn’t want a daily trauma for the next few months every time I went out and I needed to get a grip on it as there would be enough going on without the wig adding to the list. It was one of those things I thought might just go away. Sadly it didn’t and Chris has been wonderful.
True to form after 10 days it lost its shine and lustre and then a day or 2 later it stared to molt. This concerned me as for a woman I don’t think patchy hair or see through is a good look. That week before I went I stopped washing it out of fear and went no where near it with a brush I hust scraped it back a bit more each day. It was also beginning to matt at the nape, it was driving me mad.
As the week went I did become more apprehensive and no more so than my husband who did think there would be tears and trauma at the shaving. I spoke bout it nonstop that week to anyone who was still listening to me! It didn’t help that morning at the Christie when the nurse said how nice my hir was looking and how well I was doing to keep it looking so well at this stage. My mind was made up it was all coming off regardless.
Arriving at the salon off we went into the now familiar wig room and Chris with his reassuring and kindly manner. The clippers were at the ready and so we started. We chatted about things in general ignoring the massive elephant in the corner, not my husband and off it came to be left with a number 1 all over. I did not shed a single tear. I felt liberated, relaxed and pleased that it was another job to cross off the list. I rubbed my head it felt a bit strange and reminiscently like the my mother’s favourite photo of me at 6m old with the exact same hair cut. Life is cyclical they say.
The wig went on Chris made few adjustments as until the hair was off the final fit could not be done and a slight trim. Then he asked what I was going to do about it. I said I’d come back in a couple of weeks so he could have a look at it, wash it and I could have look what went on. He said that once I had worn it for a couple of weeks and how I was combing and styling it then if it needed a bit more of a cut or adjustment we could do it then.
Off I went I river home feeling ,ike a million dollars and my neighbours said how lovely it looked. My friend though I’d been for a haircut after the hospital and said how nice it looked but what a waste of money having had an overall rinse on it as it was a slightly lighter colour than my own hair, for a couple of weeks before it was coming off. This was the wig I told her, she was amazed, well done Chris.
In the office on Monday the men looked at me the hair and carried on a male thing I know. The women would scrutinise it further, they did they said how good it looked and asked if they could touch and feel it. This has been recurring theme with women about asking to feel it and would I take it off for them to have a look before and after.
However the first couple of days I struggled with getting it on. I did not position it quite right and it took a few minutes, which seemed like an eternity to me, back to the patience again. However, after a few days I got the knack and it was just partner the routine, shoes, coat, wig and out the door.
The comments and compliments I have had have been wonderful it has been a real boost at a time when at times I’ve felt a bit low but what a great reflection on Chris and his hard work. However, as soon as I get through the front door it’s off. The first 2 weeks went well and back to Chris to have a wash and blow.
I told him that the sides felt and looked a bit heavy how I was styling it and he agreed it needed t be trimmed and thinned a bit and then we could decide bit later if more was coming off. I thought at this stage that I might have to go back in a few weeks for this. Off he went to wash the wig. It came back the size of a wet brown dishcloth a drowned rat! How was I going to transform this into the glossy hairpiece I had brought in 10 minutes earlier? I wasn’t and the decision was made. Before he cut it back on my head to start the blow dry and then cut I had made him get his diary out and book me in every 2 weeks for the foreseeable future I was going to be spending a lot of time at the salon with Chris this was going to be no hairdresser free few months!
Off I went with the new cut and the comments were that it even looked better than at first! So it’s been for it’s wash on a regular basis and it has had a further cut. I can say I’ve not missed having hair, it’s been quick in the shower, I can put it on in seconds will I grow it long again maybe not at this stage but who knows? It has been liberating so let’s see.
I’ve since decided with Chris that over the coming weeks we’ll take the wig shorter as with the summer looming it will be a bit cooler but I’m already planning head in ore ways than one that I’ll have short hair so let’s make the transition as normal as I can. On the way into the process I kept it as similar style so what not on the way out? With not missing the hair so soon as there’s a little layer I’ll wear the wig less. Also it will get ware and tear at the front and on the parting, so it will need running repairs. It’s had one lot already it might need more who knows. What I do know is that it has a life of its own this wig and I’ve never spent so long at the hairdressers in my life!
How many men do you see with a shaved head or no hair maybe 50% it still not the norm for a woman and we still get looked at. My main reason for a wig was not to draw attention to myself whilst I was ill. I don’t want every one feeling sorry for me or having to talk to people I bear know as they stop me and ask why I’ve no hair. My friends, family and colleagues I don’t care I’m happy to share especially if I can help someone else with their journey as I’ve had help on mine. I don’t see myself as ill. I’ll be better in a few months it’s just limiting me as to what I can do for now and my world has shrunk for the next few months. It won’t always though and this is what I cling onto. In doing less of everything and it’s all a bit slower but it will all return. I’ve had to learn to be kinder to myself and not such a hard task master.
So Chris and I will be working on this project over the coming months. He’s been great so unfortunately he’s stuck with me! Also having time in the wig room I’ve had a play with other ones and I have tried various styles and colours. I now know I don’t suit grey hair so I’m going to have to maintain it in a similar colour, my mother said when she started to grey always kept chestnut undertone now I know why!
I’ve been very lucky so far on my journey I have had lots of help and support and after the medical care the next important help has been Chris and my neighbour with the skin care. You spend a lot of time at the hospital, the hairdresser and applying cream. There are serums you can try to try and keep your eyebrows and eyelashes but there’s no guarantee with mine so far so good. I have also had friends and clients who have had a similar illness to talk to and use as sounding boards when I think I’ve been going more mad than usual. My husbands been great and deserves a medal but I’m not telling him that!
What I’ve learnt so far:
Buy the best you can afford.
Use someone with a good reputation they’re the professionals..
Keep to a similar style and colour unless you want to draw attention to yourself.
Maintain it well.
Get used to putting on.
Use the right type of brush and hairspray.
Buy a stand to put it on when not in use.
Have running repairs done a stitch in time as they say.
Something I read in a Sunday supplement by a buddist monk a few weeks ago talking about being positive and well being was that if he woke up in the morning without toothache then wasn’t life good. I’ve adapted that to if I wake up with eyebrows and eyelashes and I have the energy to get l and have a reasonably normal day isn’t life good!