Having finally finished all my “post cancer surgery follow up risk reduction treatment”....5 months of chemotherapy and 6 sessions of bracytherapy radiotherapy....I am trying to get back to life without hospital appointments dominating everything.
I realised quite quickly that it was because ending the
treatment that would hopefully keep me cancer free for ever was actually quite
scary. I felt as if I wanted some treatment to carry on...just to make sure !
I also realised that having been the focus of so much
medical attention, so many consultants, registrars, SHOs, specialist nurses, gynaey
nurses, oncology nurses, chemo specialists, radiographers, radiologists, phlebotomists,
auxiliary nurses, secretaries, and volunteer tea ladies.....I was going to be
on my own.
I know this is not really the case. I’m not on my own...
apart from incredible family and friends, the follow up support from the NHS is
going to be there for me. In fact I have an appointment with the chemo
consultant next week...to start the monitoring regime. I have also spoken to my
specialist nurse who is putting me in touch with a Macmillan nurse who is a
counsellor, to help me with the next stage.....recovery.
I am not back to “normal” yet.
I have no hair, which I hate. The final straw was when my
eyelashes and eyebrows, which lasted well into the 4th chemo
session, fell out. Drawing my eyes onto my face takes a good 20 minutes every day . I considered buying some false eyelashes this week, but decided against, as I know I would make a dreadful mess of fixing them on.
I was pleased to finally get back into my size 12 jeans 2
weeks ago...but the radiotherapy has meant I have swollen up a bit again....so
the jeans are back in the wardrobe for another couple of weeks.
My feet are very numb....I am sure I am walking in an odd
duck like flat footed way. I have had to buy a pair of what I think of as “very
old lady shoes”. I used to wear outrageously high heels, but life as an auxiliary
nurse and life on the ward taught me about sensible shoes.....but there is sensible......and
there are very old lady shoes......I do not like them.
I am very tired, although I don’t mind this too much, it is
so much better than being so wired due to the steroids taken to alleviate the
chemo effects. However, having more energy would be good.
I have very little strength....walking up very minor hills
turns my legs to jelly, and I can’t carry anything heavier than a bag with a
phone, a purse and a packet of tissues.
However.......since I finished the radiotherapy, 3 days
ago.....only 3 days ago...... I have :
celebrated by going out to dinner with Mark, which included
drinking 2 glasses of wine;
celebrated by visiting the Yorkshire Sculpture Park, for a walk and a lovely lunch overlooking the fabulous Henry Moores and Barbara Hepworths and the gorgeous Yorkshire landscape;
sitting in our local, The Stubbings Wharf, drinking my first of 2 glasses of wine |
celebrated by visiting the Yorkshire Sculpture Park, for a walk and a lovely lunch overlooking the fabulous Henry Moores and Barbara Hepworths and the gorgeous Yorkshire landscape;
visited a friend in Huddersfield, on my own, in my own car, for
a few hours, without phoning Mark to let him know I was ok;
been for a couple of drives, checking out the new borns in various nearby fields;
been for a couple of drives, checking out the new borns in various nearby fields;
tidied the garden;
planned a few visits to friends for next week.....and, best
of all,
Mark booked flights to France, for a 7 week visit to our house in
Caunes.....with no Drs or hospital visits to think about. We go in 2 weeks time.
us, last summer in Caunes....can't wait to be back |
So, on balance.........it feels amazing.
Thank you to everyone who has helped me through the last 6
months. Blogging friends have given me so much encouragement. I have made new
friends due to the cancer connexion, and have found so much support from people
all over the world who have entered into dialogue with me, whether I have been
blogging about the cancer journey, or blogging about avoiding it. I am now
looking forward to getting back to following everyone’s posts properly,
exploring more blogs and to blogging about a really normal life again, in Caunes and in Yorkshire.
Janice thank you for a wonderful post, and I am so very happy for you now that part of the journey is over. You are inspirational and have done really quite a lot in the past three days! I related to your saying you expected to feel elated and instead felt a bit down, which is how I was after the settlement of our personal injuries insurance claim recently. Everyone expected me to be over the moon, but I wasn't because getting a sum of money doesn't change the fact I have a breast injury which will not go away and which makes diagnosis of further cancer difficult. Not that this experience compares to what you have endured, but I have found it hard to find my equalibrium too. All the very best to you, as you flit off to wonderful France! XXXX
ReplyDeleteThanks Patricia. I understand that feeling a bit down when you are expected to feel elated is very common....so we're normal ! Thanks for your good wishes. Jx
DeleteThat is a lovely, relaxed photo of you enjoying your so-well earned glass of wine, and you look great! I have no experience to speak of, but there is an ad on the radio at the moment about Macmillan Care that hints at just what you speak of, the not feeling totally elated to be finished with all the treatment, so I'm sure you're not alone, and that Macmillan will help. I'm sure 7 weeks in France will help too! Have a great time!
ReplyDeletex
There is no doubt that 7 weeks in France is going to be excellent.I have such plans for the vegetable garden, I just cant wait to get out there. Thanks for your kind wishes. Jx
DeleteJanice, this is such a beautifully written, honest and thought-provoking post and I do know what you are feeling, having been though similar, if less prolonged, treatment in the past. The way you are feeling is so common that there have been numerous books and articles written to reassure cancer patients that what they are experiencing after treatment ends isn't just peculiar to them but a perfectly natural, if often difficult, adjustment to a new normal.
ReplyDeleteYour adjustment is much harder than mine was, since you have marked chemo after-effects which I escaped because of not having chemo. But I'm sure that with the right help you will deal with them as courageously as you have dealt with this whole devastating cancer experience and that a summer in Caunes will help the process enormously.
Sending you hugs and love Pxxx
Thanks Perpetua, it does help, hearing people understand, and have experienced similar feelings. On one level I understand completely why I feel the way I do, but it doesn't change the way I feel. The few days since the end of treatment have been excellent and having France to look forward to is a real help. I just hope I feel awake enough and strong enough to get the garden into shape. Thanks for the hugs and love....much appreciated Jx
DeleteDarling Janice. You really have such a good handle on all of this, you really do. At the end of any long journey, we often feel dishevelled, tired and in need of a rest, and the journey you've just made definitely deserves proper recovery attention. Now you can begin your recovery journey, at the end of which, you will emerge with a head of hair, high heels and size 12 jeans. (I wouldn't mind the size 12 jeans bit...but without the suffering.)
ReplyDeleteI can't think of a better place to go to recover than your lovely house in Caunes - in peace, in the sunshine, in France. Good for mind, body and soul - and, I am reliably informed, for eyelashes too!
Much love,
Axxxx
Well, that's it then, I have to be in France, so my eyelashes will grow back. However, as you have just put on facebook that it is snowing with you, and I notice the temperature in Carcassonne is pretty similar to Hebden Bridge today, I am going to spend the next 2 weeks hoping things improve considerably. I want warm bones ! Thanks for your supportive words Annie...we must start to talk about when I can visit...not sure I'm going to be up to it May/ June....but maybe by end of August/ September. Lots of love Jxxx
DeleteDear Janice - I know you are feeling apprehensive and partially on your own, but what a stage you have reached compared with last autumn when all of the treatment was still ahead of you. I suppose all the doctors and hospital staff have been rather like a crutch that you felt you could lean on, relying on their advice, help, and support and now you are feeling bereft of that.
ReplyDelete7 weeks in France, resting, relaxing and enjoying yourself with Marks company will I am convinced do you the world of good, and you will return to our summer feeling more like the old you.
Have a good time Janice♥
You are right Rosemary.... I am in a much much better place than I was last October. I have been so lucky with the treatment and the support I have received, and now I can start to be positive about feeling well. Even though it is really only a few weeks since we were in France in February, I cant wait to see the garden, which I know will be gorgeous when we arrive back.Thanks for your kind words. Jx
DeleteYou've had a long challenging journey which has dominated your life and now there isn't an intensive programme to be followed....you're sort of on your own and at a loose end.
ReplyDeleteAll the physical changes you 'put up with' during treatment now seem much more evident to you...but you will get through it, especially in Caunes!
I look forward to hearing about your veg garden plans...
Yes, it is quite clear to me that Caunes is the answer. That garden needs me.....and I need the garden. Actually, just sitting on the terrace, looking at the garden will make me grin from ear to ear. Hope all is well with you. Jx
DeleteRemember how I looked at Uma's baptism? Hair just starting to come back? Know just how you feel...I missed that wonderful chemo staff for months. Enjoy Caunes...may it be warm and sunny the whole time.
ReplyDeleteThanks Jane.... I have been meaning to ask you how long it took for your hair to start growing again.... and yes, I remember your beautiful post chemo curls. Caunes will be great.... 6 weeks with just Mark and I, then a final week with Jess and half of the 3rd year drama department from Liverpool John Moores University.( Well, Jess and 4 friends). Then we come back to England for Jess's graduation before another 3 weeks in Caunes. We will then spend most of the autumn out there too.....it will be good ! Jxxx
DeleteHi Janice,
ReplyDeleteI only have anecdotal experience, but I have been told by a couple of friends that they felt exactly as you describe when their treatment first came to an end. Although it seems that your itinerary for the next will keep you busy and your mind active. The time in Caunes will be just what you need.
There you will be able to fully relax and enjoy the garden, the sunshine, all the beautiful area has to offer and each other without the medical problems and difficulties being at the front of your minds.
Your hair and eyelashes will grow back - my friend got curls!
I'll look forward to reading about you as you move in to the recovery phase.
Very best wishes xx
Thanks Gaynor. It is good to find so many people who have experienced exactly the same as I have over this end of treatment phase. I am also feeling stronger every day, so that helps ! I'm really looking forward to getting out to Caunes now....that garden wont know what's hit it when I arrive. Jx
DeleteYou have been so strong, courageous, and honest, Janice. I think that going through something such as this, one's center keeps moving with each new step. How comforting it will be for you to spend some time at your home in Caunes with your pool and your garden and the places you love there. I can't wait to read about what you are up to there.
ReplyDeleteThis is a terrific photo of you, enjoying that glass of wine, with such an infectious smile on your face. I wish you the best, dear Janice, and a continued recovery.
Thanks Penny. Your words are very encouraging. You are completely right, every day feels a bit different ....and although I expect there will be some lower points....things feel better each day at the moment. Getting to France for a decent length of time is going to be wonderful.I am planning an abundance of courgettes and aubergines! Jx
DeleteI have only recently found your blog. And I applaud you in all your milestones throughout the past year, and also the last week. I hope you quickly adjust to your new life outside of medical appts and procedures. And enjoy your time in France.
ReplyDeleteThanks for dropping in clb, and for your kind words. J.
DeleteJanice, You look absolutely wonderful and I don't think anyone would even realise that you have no eyelashes (for now) anyway. You have been in my thoughts and they will go with you when you have your much needed getaway. Hugs Sue
ReplyDeleteActually, I have just realised as soon as the sun comes out ( waiting rather a long time for it here in Yorkshire) I shall wear my best sun glasses and no one will be able to see my badly drawn eyes ! Thanks for your kind words and thoughts Sue, you have been in my thoughts too....take care. Jx
DeleteThree cheers for you Janice! Your experiences have shown me a really positive side to our NHS, much needed after hearing some less good stories. Thank heavens for the wonderful treatment you've had!
ReplyDelete(Badly Drawn Eyes - didn't he used to be a singer..?)
Thanks Nilly...perhaps I should have called this post Badly Drawn Boy ! I will repeat my tale of fabulous world class treatment from the NHS to anyone who will listen. J.
DeleteYou have been through so much in the last year and yet in the picture in the pub you look wonderful. Have a great time in France.
ReplyDeleteThanks BtoB....am looking forward to France more each day. Jx
DeleteHi Janice
ReplyDeleteI'm finally catching up with blogs again after a long break! I know exactly what you mean about the downer at the end of treatment. It does feel scary to be "on your own" and not have health professionals surrounding you and constantly checking up on you.
I think 7 weeks in Caunes is just what you need. Time, sunshine (I hope!), and a beautiful environment to start building your strength back up. It would be great to meet while you are here.
I am sure being in Caunes should feature on a personalised prescription for my follow up treatmnet ! I just hope the weather is a little better by the time I get back. It would be great to see you at some stage. I'll be in Caunes until the start of July, then again from mid July until a week into August.... and then back again for September and October. I'm sure we can catch up at some stage. Jx
ReplyDeleteGood for you! Great to have finished your treatment but I can understand you might feel a bit lonely and out on your own for a while. I'm sure your 7 weeks in the Minervois will do you no end of good. We have had rotten weather but hopefully it will improve for your visit. And it's wonderful that you can enjoy the Barbara Hepworth etc. Keep going - you are definitely moving in the right direction!!
ReplyDeleteThanks Vanessa. I am hoping the weather improves soon...but really, coming for 7 weeks at least I know there will be some lovely bone warming sunshine at some stage. J.
DeleteGlad I checked back.... my comment last week didn't post.
ReplyDeleteSeveral days have passed now since you wrote, I hope you're feeling well and life is getting back to normal. I would imagine there is quite an adrenalin drop as the cycle of treatments ends and, as you say, with it goes the associated reassuring medical support network. My daughter was in and out of hospital a lot when she was young, I often used to have very mixed feelings at home on my own with her after an episode.
Anyway..... I hear it's been sunny in lovely Hebden Bridge, hope you have raised a few more celebratory glasses!
Thanks Jill. I am starting to get used to having no hospital appointments in the diary. It does feel strange, but a good strange. This last weekend has been glorious in Hebden Bridge. It was the Burlesque Festival....so lots of interesting sights around the town, including an ironic banner suggesting that burlesque is merely middle class pole dancing. Jx
DeleteSo pleased Janice that you are looking forward to your visit to France.
ReplyDeleteI think i agree with you about the eyelashes.Mind you with regards to hair----my friend who lost hair after chemo--- decided that she would try a different hairstyle every few months when the hair returned.True to her word so many colours and styles she has worn well over the last 10 yrs.
It was interesting to read of your visit to the Yorkshire Sculpture Park.We visit every week now making for the bird -hide on the bottom lake.Just nesting in front of the hide are a family of grebes.So it is compulsive viewing for me. x M
I love the Sculpture park, and just dont go often enough. The weather was lovely, which makes a change, although it is one of those places that is great no matter what the weather, as long as you are wearing the right clothes. I shall be in France from next week, but hoping to see grebe photos posted ! Jx
DeleteI missed this post Janice, while I was in England and am just catching up. You write with such honesty about your feelings. It must be hard to kind of react in the way that people expect. There is this safety net while your having treatment, or at least that's what it must feel like, so it's almost as if it's been taken away.
ReplyDeleteI bet you can't wait to get back to Caunes. It will be a lovely summer and all the more special because of what you have been through this past year. Enjoy! Much love xxx
Thanks for commenting Ayak. It can take ages to catch up on blogs you miss... I know as I have not been keeping up with things recently, partly because I've been busy seeing people before going off to France, but also because my mood hasn't been quite right ! We go to Caunes tomorrow, and I am just loving the ideaf no hospital appointments for 7 whole weeks. I cant think beyond that at the moment.....just 7 lovely weeks ! I am reading blogs, even if I dont get round to commenting....so am following the dogs stories and Mr A's trials and tribulations, with all my usual fascination. Love Janice x
DeleteDear Janice, I hope that you are too busy out enjoying life rather than writing blog posts. I have been regularly checking for updates hoping to read that you are feeling much better...I also hope that you are enjoying lovely spring weather in Caunes right now ....hugs from Australia!
ReplyDeleteHi Maria, I am doing well...back in France and enjoying just being here. I haven't really been in the mood for blog writing recently...but am building up to something from here....all these jobs we seem to find to do, even though everything would be great if we did nothing. My latest project is to turn our woodshed into the three bears' house, in time for 2 of the grandchildren to visit in a couple of weeks time. Jx
ReplyDeleteI do love the idea of the three bears' house...great fun for your grandchildren :-) . So glad to hear that you are doing well xx
DeleteSo glad you can go to France to relax and begin to enjoy your recovery. I do hope you can see the Macmillan councellor, I'm sure it will help tremendously, it can feel like a bereavement and help in all the mixed emotions. My daughter was diagnosed last December and 2012 passed in a whirl as you describe, including the 'lonely' feelings but her hair has grown back massively curly and she is in remission, although in her case the chemo/radio caused life changing problems. We use the 'spoon' theory to monitor the energy levels. Be kind to yourself, take care
ReplyDeleteThanks Chrissie. It is lovely to be out here in France again, with the sun warming up beautifully. My hair hasn't got to the thick and curly stage people keep promising...more Sinead O'Connor...but it is growing, and it is so much better than shiny bald ! Again, thanks for your supportive words....much appreciated. Jx
DeleteHi Janice.....Glad to see you are good. I've been away in Europe for 6 weeks and just didn't have time to do much internet. Thank you for your kind post on Ayak's Blog. I can see why you love to go to France, beautiful country.
ReplyDeleteSpecial Blessings being to sent to you....Erica XOXO
We have been worried about you Erica ! So glad all is well. I hope you have had a wonderful time In Europe...did you get to Turkey ? It is lovely being back in France...now I just want the weather to improve. It is still a bit cold, although so gorgeous when the sun is shining. Very best wishes to you. Jx
DeleteHi Janice......yes I did manage to get to Turkey, for a month. It was a hectic time b/c my husband had lots going on his plate and I tried to help him and din't want to wander away myself...... leave the poor guy looking after himself.
DeleteWe did almost a week in Paris, rained everyday but didn't notice the rain too excited to explore Paris.Then afew days in Rome on our way from Turkey....gorgeous churches they had, so ornate. Love Europe, living in North America we have nothing really old...Hope all is well with you.