Mission Impossible!

It certainly was a mission impossible at NGH today. I had anticipated no problems when I went to have another PICC line inserted, so I was quite disappointed that the procedure was unsuccessful, as it means that I'm to have a Groshong line fitted to my chest and involves sedation during the procedure.

Despite several attempts by Rosie, the Nurse and her colleague Billy, the PICC line would not go where it was supposed to, preferring to make its way into my neck rather than the chest. Billy was in fact from a different department and she was there assisting, but also observing Rosie for professional developmental purposes. This was quite interesting as I was hearing a running commentary of the procedure, which satisfied 'my need to know' every detail!

This time the procedure felt a little more painful than last time, but still very 'doable'. Billy happily took some pictures of the procedure, having learnt about my blog.

my Veins

Ultrasound technology was used to locate a suitable vein and guide the procedure, I have no idea what I was looking at on the screen, but it seemed Rosie was happy with the vein she had found. There was discussion between Billy and Rosie about my veins being small, and Billy commented that she could not have got in that vein. Rosie did indeed get 'it' in the vein, with a little local anaesthetic and 'nick' to the skin with a scalpel. The issue however was that it would not thread through to the chest cavity, and Rosie abandoned the procedure and booked me in to have a Groshong line fitted on 6th March 2014.

This means my chemotherapy date has been put back to Friday 7th March. I was due to have Round 3 of the chemo treatment on the 3rd, however to administer the Epirubicin (the E part of the FEC) chemo treatment through a cannula could cause damage to my veins so I have to wait until the Groshong line is fitted. I'm assured that the 4 day delay will be made up, so this should not prolong my treatment.

So there we have it, another adventure, but hey at least there is an extra 4 day's of fundraising for the `multi coloured Mohican hair dare!! lol xx (only £50 needed to hit the target!!).

'I've gone and overdone it!'

So….it seems, I still haven't learnt my lesson and I have had another A&E adventure and a 'crash', metaphorically speaking!

It has taken more time to get though the 'fatigue phase' during this round of chemo and I found that there was absolutely no effort in resting/hibernating for 6 days!!!!!!. I felt somewhat trapped on occasions, as if I was in a parallel universe, watching people around me carry on as normal; working, going out for Valentines day, booking holidays/events and exercising. I found great frustration in any attempt to make any future plans myself, where everything seemed complicated and defined by my treatment.

Valentine's day this year was not spent at Sorrentino's, our favourite Valentines venue; even so, we had a lovely meal at home and a snuggly night in.

I'm pleased to say that I seemed to just 'bounce alive' around the 18th February, and after some household chores and light decorating, I busied myself for a couple of day's with a play date with 'baby George' and his yummy mummy Gill, a long overdue catch up and an FBL (fake bacon and lettuce sandwich) with Taymar, and a late lunch on Thursday(20.2.14) with Sue, a friend I have just reconnected with.

By the Thursday I was feeling a little 'icky' again and I noticed that my PICC line site was feeling a little sore. I think I may have tugged the line a little when I took my pyjamas off that morning and it didn't help that the dressing was quite loose. I did not think much about it until a 'good bye hug' from Sue, made me realise that the soreness from the PICC line site was getting worse. So after a call to The Talbot Butler Ward, I was sent to A&E to be assessed. A Spanish Nurse, from Madrid undertook my obs' and a chat in Spanish, was comforting and helped distract from it all!

An X-ray revealed that the PICC line was indeed coming out and as such it was taken out totally. I was discharged after 4 hours, following blood tests, but not before leaving a couple of bowls of vomit behind. Poor 'Vivian', wasn't impressed with me, I just didn't have enough hands or time to move all of the hair away! Vivian has since been treated to some Johnsons' baby shampoo and will receive her first hair wash tomorrow. I can't believe that the shampoo cost £2, when the Shampoo I ordinarily use costs a small fortune as my guilty pleasure.

My mind continues to seek to do more things that my body will allow, and even though I thought I was listening to my body and taking things easy, I know that my cells need more tender loving care to regenerate, so I consider myself well and truly 'grounded'.

Life without hair and competition!

Life without hair, just sucks!… I have found some advantages though, and I shall start with those!!

Well, for starters I'm saving money! I dread to think exactly how much I usually spend in a year at Toni and Guy, but I'm guessing this is AT LEAST £500. This does not include products!

There is also something to be said for the time I'm saving. I used to spend at least 40 minutes washing and drying it, at least 2 times a week and then my life seemed to revolve around my 'hair status'. I sometimes passed up on things because my hair wasn't washed or because my hair may go frizzy if, for example, I went for walk. I really can't believe how much was defined by the status of my hair!! so lesson learnt, when I'm blessed with hair again… it will be a matter of 'I've been bald' so frizzy hair, paaffff, who cares… I 'aint' passing up on life!

Steve of course thinks 'Vivian' looks better than my real hair!..here's me thinking he loved my hair, but I will graciously accept it as a compliment whilst it's on offer, I never know when the next one is coming!! lol x

Steve struggles with seeing me without wearing 'Vivian' . Even wearing cotton caps and scarves, makes him seem uncomfortable, he say's it makes me look ill… 'like a cancer patient'…. a reality check I guess, when I look so well and healthy with my wig!

I'm pretty open about showing my 'baldness', and most people around me are curious so I'm happy to share. Some people find 'my baldness' understandably uncomfortable. I sometimes find myself managing and sparing other peoples feelings about it all, and whilst it is right that I do that, I also feel I'm almost restricting myself.

Steve's children are also naturally cautious about seeing me without hair. They never ask questions, and I ensure that they always see the 'well Suzanne'… Because of their ages, and because they do not live with us, I'm keen not to frighten them and I give them bite size updates, so they know what is happening. Their reality would be very different of course if they spent more time with us, but as it happens, they seem to be managing well.

During a recent telephone conversation with Gracie, my 5 year old niece, she immediately asked me about my hair (lack of it) and whether I liked it! Susan, my SIL (sister in law) keeps my nieces updated via the blog, and it was just nice that my niece felt comfortable in speaking with me about this, offering me care and concern, and also confident in telling me that she doesn't like it, 'but it will grow back'.

When my hair was first buzzed off, there was still a dark covering of 'bristle'… which gave me the 'Sinead O'connor' look… As time is going on I am loosing the bristle, and I'm now going for the boiled egg look! I have to admit I really do 'look ill' now without 'Vivian' on, but thankfully my eye lashes and brows have been more resilient than my hair, so they provide a frame for my face. Im glad that my brows seem to be clinging on for dear life and I truly hope that they, along with my lashes, 'go the distance with me.

Well... if Berni Nolan, Jade Goody and Sally Whitaker can deal with it so dignified so can I.

I tend to wear a cotton cap at home, as wearing 'Vivian' for lengthy periods makes my head itch. My scalp remains sensitive and I think because I have worn the wig for long periods, I have developed cluster of irritating spots!… so with wig time at a premium, I need to get a hang of the scarf art!

'Vivian' made an outing with me on a spontaneous night out at a local pub, with friends. This was just before round 2 of Chemo and I felt the best I had been so far. I enjoyed a couple of glasses of wine for the first time since my treatment began and I'm glad to say that Vivian and I found some mischief! After taking it easy for most of the night, My friend, Becky, who is recuperating from an operation, and I decided to have a boogie when the entertainer sang 'that's life' by Frank Sinatra.

Having endured 'itchy head' for most of the night and having been 'caught up' with the words of that particular song… 'Vivian' wanted to come off … and so she did during the lyrics of the chorus….. 'that's life'…. Vivian then threw herself across the dance floor at Steve, who wasn't quite as stunned as the women behind me! I think the song has become my theme song for this year!

http://www.youtube.com/watch?v=3NCN6tl_DY0&sns=em

So, there's a summary of my life without hair! All doable, with the right attitude!

Vivian, however needs a buddy, and its about time that the wig 'with no name' is given a name. I have not yet worn this wig, except for posing for the 'selfies'. So it's competition time… and as a prize for the most suitable name, I am donating £42 of Toni and Guy Vouchers, which is the amount I have saved in hair styling bills since my hair was buzzed off, and is the price of a hair cut from a senior stylist at Toni and Guy.(I may offer an alternative if necessary).

The Wig with no name

So to enter and help me raise money for 'Look Good Feel Better' This is what you have to do;

1.Use the button below and donate at least £2, which is the minimum allowed on the just giving page. The idea is to get as many people entering and as many names as possible, so the minimum donation is just perfect.

I will also be sending out off line donate forms for you to enter and collect competition entries on my behalf if you wish.

2.The donate button will allow you to leave a message. Add the chosen name and why it is in your view the most fitting name. For example… you could name it after a relative/friend that has battled with cancer, because they are simply as crazy as I am. You could name it after a celebrity, because I look like them in it. The story behind your suggestion is as important as the name.

3. The competition will end on the 15th March 2014. I will be narrowing down the names to my favourite 5 and I will be asking my nieces and Steve's children to help me choose the winning name. The wig will make its debut appearance on 16th March 2014.

4. If there is more that one person that chooses the winning name, the winner will be the one with the best reason behind the name, as decided by the Kids!

The funds raised for this competition will go to 'Look Good Feel better'.

Good Luck xx

Chemotherapy- Round 2!

Round 2 was on the 10th of February and it's only really today that I have crawled out of a self induced 'hibernation' to update my blog.

Don't get me wrong, I still maintain that I have got off lightly with the side effects, however this tiredness/fatigue feels like no other… even concentrating and conversing are luxuries!

Never mind about the side effects, what about 'Suzanne's Afro Hair Dare' I hear you ask!!!! It certainly did the trick in terms of distracting me from symptoms and from the run up to the Chemo… How could it not given that the Dare in total raised £661.52



People have even continued to donate even after the event. Words cannot express the gratitude I feel and it makes me as determined as ever to raise money, so that those after me, that are diagnosed with breast cancer will benefit. I'm heartened to find that there are even more of you already donating directly to cancer support charities. It does make a difference, thank you.

My 'Look Good Feel Better' donate page has also raised £100 with out any events, So I know that the cancer issue is hitting the spot with a lot people!

So… back to the hair dare… Well, Steve and I sat in the Oncology Department waiting area, feeling rather sheepish, with the fundraising sign. I had intended to put the wig on in the waiting area so we could raise some money, however all my bravery evaporated, when I found that the chemo suite was running late and the waiting area was FULL of people.

But fear not, my wig came out as we entered the chemo suite, followed by Steve who put his wig on for a FULL 2 Minutes!

Technically, Steve claims that he fulfilled the brief and wore the wig for my chemo. It is not in Steve's nature to bring attention to himself, and I can't fault him for 'wimping' out, because he ingeniously dared Sarah Collins, chemo nurse to wear it on his behalf during the rest of her shift, In return for a £10 donation! Sarah dutifully wore the wig whilst administering chemotherapy to her patients!

The Dare was received very well within the chemo suite and Eamon Daly, Health care assistant or 'Idiot' as he affectionately introduced himself as, also wore my wig down 'hospital lane' to raise some more money. On the day we raised £16!

Frivolities aside and in terms of the chemotherapy , there were no immediate effects during the actual treatment, apart from the red pee. Gosia, Senior Staff Nurse, was my allocated Chemo nurse that day. Gosia was the one that fitted my PICC line, so I already knew her and she was truly delightful! In fact all the staff, had smiles on their faces, despite running behind.

So.. with Round 2 out of the way and now that I am a third of the way through my chemo treatment, It's time to announce 'Suzanne's Multi coloured Mohican Hair Dare'. Round 3 is on 3rd March 2014 and if I raise £100 I will wear a multi coloured Mohican to my Chemotherapy appointment and if I raise £150 I will dare the chemo nurses to wear the afro's during my treatment all in aid of Northampton General Hospital Chemotherapy Suite refurbishment.

Given the success of Round 2, you are probably all donated out, so only donate what you can and remember:

Please use the link below to donate:

The Deed is done!

Well.... the deed is well and truly done and Im going for the baby George look!

So…the hair was 'buzzed' off by Debby the hair lady, and the 'event' was marked by quality time spent with Danny and a cheeky stop at 'Dreams coffee shop' for tea and cake afterwards. This of course was also 'Vivian's' first outing and Im glad to say she behaved impeccably!

I have had a 'mop of hair' for most of my life, and I can't say that having my hair buzzed off was one of the best experiences of my life. In hindsight, this is probably something that could have been done at home, however somehow, turning this into a positive 'memory making' opportunity with quality time spent with Danny and Becky helped.

Danny and Becky also stayed for Pizza and a natter that evening and being surrounded by Steve and the DD's was priceless. The day won't be remembered for the day my hair was buzzed off but for having lovely family time, just as my first round of chemo will not be know as the time I felt 'shitty', but a time when I raised nearly £500 for NGH ! See what I'm doing there?...

Taking back some control and sugar coating the 'crap' works for me. This being said, cancer has created a 'fragility' that I don't recognise in myself, and I'm not totally unaffected by the fact that I'm now bald and have wonky boobs and scars.

I'm usually pretty strong on an emotional level and to be honest, whilst it probably won't be obvious to others, there have been a couple of short lived emotional wobbles this last week or so. I am aware, however, that the tragic death of Tracy (age 44), an old friend, has had a large part to play in that.

Steve continues to be a 'rock 'on a practical level and he is 'always there', however he can struggle with the emotional support. This is not unusual of Steve, and probably common with most men (after all 'men are from mars...'), however what is unusual is that my ability to deal with this quickly has reduced, so it's been a little tough on that front.

I've been open about showing my 'bald' head to family and friends, and I have been met with some encouraging comments!! I'm under no illusion that they are probably just being polite...but I'll take the compliments regardless!… Steve's initial response was that I looked like Sinead O'Connor, other than that he tends to avoid commenting on it, which I find very difficult. What he has been able to say is that, this for him, is confirmation that I'm really ill, and so I can understand how he feels.

So… With 'Round One' having done 'it's worst', I say I probably got off lightly! I leave 'Round One' a winner, albeit bruised and with an overwhelming sense of achievement from the lessons I have learnt and the fundraising I have done. What is left now to do, is to embrace what ever 'Round Two' has to offer me and carry on 'filling the cracks with gold' and kicking cancer's ass!

Side effects...what the 'FEC!'

On the lead up to Round Two of my chemotherapy treatment, I look back and evaluate how I fared in Round One!

I had the FEC treatment on Thursday 16th January and generally speaking, It has felt like I have been having an 'out of body experience' and It's left me feeling somewhat vulnerable. My mind, albeit sometimes functioning in slow motion, has clearly been sharper than my body, but by the Saturday I was fed up and almost guilty with the whole 'resting' thing.

On the Sunday, I tried to storm my way through the symptom, keen to fulfil my usual routine with a Tesco shop and preparing a Sunday roast. Whilst, at the time, I arrogantly saw this as a success, I paid for this on the Monday, which was to become my 'worst day' in terms of symptoms. I felt totally flaked out and I hibernated for the day.

It would have been so easy to have hibernated longer, however I know from research that keeping as active as possible, keeps away the 'blues', so I tried to overcome the fatigue with lots of short walks.

During the first week and part of the second, I found myself in a 'Topsy Turvey world', where a lot of what I was used to was different. My motivation wained, my appetite had changed and I felt tired and fatigued . I had a taste for nothing other than twiglets and poached egg (not together of course!). I developed a dislike for the food and smells I loved. The homemade vegetable soup and the peanut butter and chia seed cookies, that I had busied myself preparing ready for the week, went to waste. The smell of the lilies I had in my home, made me feel nauseous and I couldn't wear my usual perfumes and body creams, as they made me feel unwell.

I'm thankful, that I seemed to have escape the worst of the documented side effects of the injections that I had for 8 day's, other than one restless night and a day of quite achey bones.

I probably got off lightly with the mouth ulcers too..... with only a few small ones on my tongue in weeks one and two, that were relieved by frozen pineapple chunks (thanks Viv) and the freezy ice pop's (thanks Mandy).

The treatment seems to have affected my memory and concentration. I'm pleased to say that my concentration improved in week three, when I was able to start reading my book again.

I have had 2 trips to the hospital since the treatment to check out some possible side effects. The first visit wiped out the whole of my Sunday afternoon and was due to a pain in my arm where the PICC line is situated. The Dr wanted to rule of DVT, and after blood tests ,it was.

The second trip, saw me at A&E in the evening because of an allergic reaction to the dressing on the PICC line. This had happened during the time where my immune system was most vulnerable and blood tests had to be taken to make sure that my blood count wasn't dangerously low. Thankfully,It wasn't.

In terms of hair loss, in the great scheme of things the prospect of being bald is a small price to pay for being well, however the 'process' of the hair loss has been really tough.

I have found it interesting when those around me, that are 'well', and have a 'well mentality', have commented about hair loss and how devastating it must be for me....and probably before being invaded by the 'pesky' cancer cells, I would have thought the same. However this whole thing has really changed my perspective and there has never been a time where I have felt devastated by the inevitable hair loss. I have carried with me only the expected anxiety associated with being faced with something new in life.

Without thought, my 'natural default position' has been to embrace all of these symptoms as a means of recovery, and my 'instinct to survive' has clearly overridden any sense of vanity.

I first noticed some light hair shedding, when I ran my hands through my hair on Tuesday 28th January, some 14 day's since the treatment. During a lunch time treat with family the next day, I explained my 'hair shedding' to Danny. With a view to demonstrating this, I again ran my fingers through my hair expecting only few strands, however a good hand full came out!! An initial look of shock showed on both of our faces, and after making sure I had not traumatised my son for life, the scene evolved into one of laughter as Danny announced it as my new party trick!!

During a call to Steve, I explained that I was loosing hair and he declared indignantly that he knew, as he had found a strand of hair in the sandwiches I had prepared for him that morning! I say he was lucky not to have a hair ball in his sandwich, given the amount I was shedding!! lol.

My scalp was sensitive and my hair had been progressively shedding as the day's past, getting everywhere!!. Even the hair in my 'nether region' was disappearing!....I booked into have my hair shaved on 5th February,(not my 'nether region' - before you wonder!) with Debby the hair lady from NGH. Danny and Vivian(the wig) are coming with me to see me through this part! So.... cheese, Pickle and hair sandwiches are now definitely off the menu for Steve!

My distractions have come from a few trips out and some welcomed visitors.... It's amazing what 'get togethers' with family and friends can do for the spirit....'Baby George' always has a smile for me and my'cheeky chops' niece Scarlett left me with supply of hugs when she visited me recently!

By week three, distractions included a spot of decorating. The en-suite project went in slow motion and it took longer than it would normally. I had to wear a pink spotty shower cap during the painting part due to the hair shedding, but even that precaution hasn't stopped the odd strand of hair finding it self stuck the paintwork and being saved for prosperity!

This blog (15,000 hits so far), the feedback, messages and donations I have received, has had such an exhilarating effect and this has surely motivated me through the tough days of my first round of chemo.......Thank you all for your care, concern and support and for helping me make a difference to others x